The 36 Things

For some reason, the other day when I published the blog post about my 3 year arthritis anniversary, I decided to come up with the 36 things I’ve learnt in the 36 months (funny that) since I got ill. It turns out that 36 is quite a big number and I deeply regret sticking with that number. However, it’s been quite therapeutic thinking of them all and I’m sure if I put my mind to it I could up with my top 100 lessons learned. Alas, none of us wish to be bored to death, so 36 it is. What have you learnt? Send me your lessons!

  1. “Sorry the old Rebecca can’t come to the phone right now. Why? Because she’s dead”. You will feel overwhelming grief. I still miss old dead me. Not as much as I used to, but certainly there are a lot of times when I miss the girl I used to be. Not least cos I was younger with far fewer grey hairs, but I miss the ability to just…live. Without having to wonder if I’ll hurt, have enough energy or whatever. I miss the energetic fun girl who used to love going dancing. Go running. Who enjoyed life. Grieve for the old you. It’s ok
  2. You will feel sad. Different to grief. Just a general sadness that takes some getting used to. A sadness that you have to miss out on things you could do before. That life is different now. For me, sadness has always been a part of my life (my Mum insists I was born depressed) but getting sick exacerbated it. The mood-altering drugs have taken me to the opposite extreme though and I no longer feel much. Win some lose some
  3. Painkillers will be your friend and you will find a best friend. For me it’s tramadols. Trammies. Love them little guys
  4. People will annoy you. They’re the same people who will suggest that if you stop drinking milk you’ll be cured. I don’t even really like milk but like Joey in Friends before me, I will drink 6pts in front of you just to prove a point
  5. You will be ok. Maybe not today. Maybe not tomorrow. But you will
  6. Parts of your body you didn’t even know existed will hurt. Who knew toenails could make you cry. Who knew? I know. I’m telling you. Toenails are evil
  7. You’ll be on first name terms with everyone at your GP surgery, same with dispensers at your local pharmacy. I even got a Christmas card from my favourite nurse and cried my eyes out when I had to change surgeries due to a house move, saying goodbye to Nurse Agnes was tough
  8. When walking with a limp, old people and fellow limpers alike will give you a knowing nod, often accompanied with something like “I’ll race ya”
  9. When going for blood work, you’re so used to it you can pinpoint the exact vein that’ll give the best results
  10. MLM sellers will prowl Instagram incessantly sending you messages saying they have the product to help you get better/make more income. You will want these people to burn
  11. What little patience you already have will wear even thinner
  12. Perspectives on life change. Where once maybe I did what I thought was expected of me, now I do what I want because I want to do it because life is short. Refer to point 11
  13. You’ll find joint supports and bandages all around your house, desk drawers, in your car. But when you need one because your knee is about to fall off? Nowhere to be seen
  14. You will really come to appreciate the good friends in your life. In my experience these good friends are the kind you didn’t expect. People who you kinda only knew suddenly become very dear to you. People who you haven’t seen in a decade provide you with support 24/7
  15. You will really come to resent friends who don’t try to understand what you’re going through. Top tip, you don’t need these people in your life
  16. There’s a lot of people out there with chronic illnesses. I worked with a man with ulcerative colitis for two years before I realised he was on very similar medication to me. When it’s out there in the open, you realise you’re surrounded by spoonies. Like sand in between your toes, we get everywhere
  17. Any fashion ideals you once held about footwear quickly disappear. Function trumps fashion. I even once considered crocs. I went out recently in Uggs and hated myself a little bit because it’s not 2008, I’m no longer a university student in my Canterbury trousers and frankly, they’re fugly. But you know what, DAMN COMFY AND I REGRET NOTHING
  18. Comfy clothes will become your new normal. Jumpers that don’t need to be ironed? Great. Trousers with an elasticated waist that are just pull ups with no fiddly zips or buttons? Sign me up (I actually recently bought 6 pairs of the exact same trousers as described above from tesco because good trousers are hard to find). Wearing trainers to work? Awesome. Every day in my office is now casual Friday for me and I am living for it
  19. Same goes for general appearance. Why no, I haven’t had a shower in 3 days, thanks for noticing. Nothing a good deodorant quite disguise. It’s considered a good day if I brush my hair. Wearing make up? Steady on now
  20. You’ll become a walking pharmacy. I have more painkillers and plasters in my bag than I do money in my account. Always be prepared. I was once at a Stone Roses concert which was wild. A glass got thrown. It hit a girl on the face and there was a gash above her eye. Cries of “Anybody got a plaster?” met with confusion from the spaced out crowd, who’d have plasters at a gig? Step forward Becca. Plasters in all shapes and sizes. You’ll have more medical supplies at your immediate disposal than Dr Quinn
  21. Speaking of gigs, when you go to one at The Hydro (especially the Hydro) you will moan loudly to ANYONE who will listen how all the stairs are not mobility friendly and would it kill them to make it a bit easier to access seats
  22. Fatigue is not the same as feeling tired. You won’t understand this until you’re lying on your bathroom floor having someone else finish brushing your teeth for you because you don’t have the energy to do the job yourself, let alone stand. Same goes for when you’ve had a wee and you need your Mum to come wipe ya bum and rescue you from the toilet seat. Thanks Mum, I owe ya
  23. Following on from this, don’t ever say you’re tired around someone with a kid. Apparently I’m not allowed to be tired, I have no reason. Whereas they are allowed to be tired because children. They also should have used a condom but hey ho. You will get sick and tired of this running battle between yourself and Mums
  24. Cosentyx will give you the absolute worst smelling wind in the world. If this is TMI for you then you should get in the bin. Everyone who injects this wonderful nectar knows what I’m talking about. The people around you will certainly know
  25. Nothing is off limits or counts as taboo when talking about health. If my failing health has taught me anything it’s that conversations about poop lead to unbreakable lifelong friendships
  26. As above. Never be more than a minute away from a toilet in the first few days after your injection. Carry spare pants just in case
  27. Even Gandhi would have punched in the face the person who gives it the whole “I know exactly how you feel, I slept in a weird position last night”. My left ankle once swelled so quickly and severely when I was at work that I had to take a pair of scissors and cut the bottom few inches off of my trousers because they were literally going to burst at the seam. I had to go to hospital and have a great whopping thick needle inserted straight into the joint. But yeah you know, the same as a stiff neck
  28. You’ll start to question your entire existence. No? Just me? What is my purpose? Why am I here? What do I deserve from my life? Who should I be? And other existential problems that will wake you up at 2am in the morning
  29. Radox muscle relax bath salts tell lies
  30. Having arthritis is a great excuse for not holding other people’s babies “Sorry I can’t hold little Lucifer, I don’t have a lot of strength in my arms. I don’t want drop him”
  31. You’ll look back to how ‘fat’ you were at 20 and wish you were that fat again. Cosentyx causes weight gain, no matter what the professionals tell you
  32. Sometimes, you’ll be perfectly normal. Well, as normal as you can be. For me this is equally as hard to come to terms with. I don’t hurt. I have no swelling. I am for all intents and purposes normal. When you’ve just got your head around being sick, you’re faced with another reinvention. The no longer normal but not sick right now version of you
  33. Friendships will be made with people around the world who know exactly what you’re going through. You may never meet this people IRL (do people still use the term IRL? ASL?) but the friendships are real and will last a lifetime
  34. A cold is never just a cold when your immune suppressed. Normal people don’t understand this. But you will. You know it’s the same as catching bubonic plague with a side of Victorian consumption. A cold will make you wish you were dead, aint no amount of lemsips killing that bad boy
  35. You’ll feel guilty the first few times you phone in sick to work but this will pass quickly when you realise your body is thankful
  36. A memory foam mattress and pillow will change your life

8 Weeks post Pin Pull

Things you should know about me.

I often say I’ll do something but then can’t be bothered.

Often when I can be bothered, I’ll start the task and then get bored or distracted midway and will stop. Never to return to it again.

This has been the recurring theme of my 30 and a half years on this earth.

People, activities, jobs…I have a short attention span.

Tomorrow makes it eight weeks since I had my pins pulled and I am yet to get around to writing about the experience. I don’t have any kind of excuse other than chronic laziness. Also, where has the time gone? I always thought old people were joking when they said life goes quicker when you’re older but turns out, the joke is on me. Because it’s practically Christmas. And yet I’m no closer to retirement.

How was the pin pull?

Surprisingly, absolutely fine.

Yes, it did involve my consultant using an actual pair of pliars to pull them, but honestly a quick pain free tug and they were out. A tad uncomfortable, but not painful. A fair bit of blood and two little holes in the top of my toes but that was it. I recall it felt a bit like somebody pressing down on a bruise and them pressure being released. Like my toes were champagne bottles or something. I try to avoid looking at things like this (thankfully, being very short sighted, all I have to do is remove my glasses), but my overriding memory of it though was that the pins were both a lot longer and thicker than I expected (something a gal so seldom complains about).

Pre-pin pull however I had removed all of my bandages and dressings because frankly I was so fed up it was literally making me cry. Hot, itchy and uncomfortable so on New Years Eve I cut them off to give me some relief. Talking to others it seems that a lot of people have their bandages removed a the two week check up. Not me, I have more added on. I was worried I’d be told off, that I should have kept them on but thankfully this wasn’t the case.

Never one to miss an opportunity to try and make people laugh (usually at my own expense), I struck up a conversation with the nurse about how I’m not usually very good at hospital situations (I once fainted and hit the floor very hard watching my Mum recovering after having given blood…I wasn’t even four years old. I’ve always been dramatic, but I did get a free tub of biscuits from the kind nurses to make me feel better, so maybe I’ve just subconsciously been bad at these things in a bid to get biscuits. Hobnobs please), and the next thing I knew she presented me with a certificate with my name on and stickers celebrating how brave I was. JP was mortified. I however told the lovely nurse that the certificate would take pride of place on my bookcase, and it has.

My consultant has referred me for foot two and I’m hopeful I’ll be seen sometime this year.

I ended up taking an extra 2 weeks off work because I overestimated how quickly I’d get back to normal. I was still very scared to walk with my toes on my floor for the first few weeks, I just automatically stuck to walking on the heel. But with time and practice, I started to straighten the foot out a bit more and now I’m back to walking normally with no limp.

I kept the foot dry to allow the little holes to heal and took my first, two footed bath a day later AND IT WAS GLORIOUS.

My activity levels still aren’t what they were before. Not least because my fatigue is still pretty bad. But I’m trying to do a bit more walking each week and hope I’ll be back to running in a few months time.

I returned to work part time, 50% hours for a fortnight and then 75% for another. Important lesson I have learnt – working 5 days in a row is not the one. With hindsight (and for the next foot), I’ll ask to work maybe 3 days a week and work my way up. I got very sick midway through my second week and had to take time off work, and I then ended up extending my part time hours because I don’t feel….right. The word fibromyalgia has reared it’s ugly head again but I’m not sure. Tired, poorly, achy, the usual.

I restarted my cosentyx injections in January (and wisely switched from a Monday to a Friday, thus making work on a Tuesday a less awkward experience for me….we’re talking unpleasant side effects. If you know, you know) but so far don’t feel like they’re working at their optimum level like they were before. I have the smallest two patches of psoriasis, which isn’t a problem and doesn’t bother me, but they exist, when they shouldn’t. Fatigue is still pretty high, but that could also be because of being off my feet for almost 3 months. I’ll be taking my third injection of 2019 in a couple weeks time and if by April I still don’t feel like I’m back to 100% then it’s time to phone my rheumy nurse.

The foot however is doing well, still bruised and puffy but getting slightly less sore with each passing week. I haven’t yet had the chance to try a ‘normal’ shoe on it because it’s still too swollen but early indications are that the op has done its job. The new toes do take a bit of getting used to though. They hit the floor every so slightly before the rest of the toes (we won’t even be talking a nanosecond, but see previous comment. I’m very dramatic) and it is a bit freaky to start with. Getting in to the shower really scared me. It felt like my toes had been inflated. The new toes were just….YUCK. Having said that, I’m almost used to it now.

Something else you don’t think about is how you get shoes on your feet. Normal feet, the toes bend and move to slip in to the shoe all by themselves. You don’t even have to think about it. Everything just does what it needs to do by itself. New toes minus the joint do not bend, and thus, you have to kind of shove them in. Again, once you’ve done it a few times it just comes naturally.

Otherwise, it’s all good. I’m just home from a long weekend in Newcastle. My foot didn’t fall off during all the hundreds of miles of driving and bar being a bit sore when changing gear, I survived. Home for a fortnight before jumping on a plane for my first proper holiday of the year (and so far, my only one planned. Must change this. I have just over 8 weeks holiday from work this year) and back to studying for my second year of Open University, which is taking up a lot of time which could otherwise be spent reading.

Any ideas on how to make driving more comfortable? How to differentiate between arthritic pain and non-arthritic pain? How to keep myself more motivated blogging?

Send all idea and tip and tricks for how to do the above, and generally survive life, my way!

Toe Straightening Surgery

*WARNING – THIS POST INCLUDES PHOTOS OF FEET BOTH BEFORE AND AFTER SURGERY, INCLUDING BLOOD AND PINS PROTRUDING FROM TOES. APPROACH WITH CAUTION*

Hey everybody!

Long time no speak!

As per the warning at the top of the post I’m going to be talking all about the toe straightening surgery that I had done 6 days ago. I am including photos because I know that in the run up to my operation seeing photos of the aftermath on instagram posted by people I know online made a lot of difference for me. It meant that I had some idea of what to expect and what was to come.

This is likely to be a super long post so I’m going to break this post up in to different sections starting with the very beginning. So get yourself a cuppa, and let me take you back to April 2016…..

In the beginning….

God created arthritis.

As I’ve said many times before, my first ever symptom of psoriatic arthritis was a swollen toe. The second toe on my left foot. The third toe followed at some point afterwards, as did toes two and three on the right foot. The pain started underneath the toe. I couldn’t put my foot down on the floor without feeling searing pain. I can’t quite remember when it happened, but at some point the toes started to bend upwards at the joint. The continued to bend and then they just didn’t move. The joint has fused. My toes had permanently bent upwards.

The inflamed bent toes were very, very painful. Often bright red and hot to the touch. This was eventually controlled with anti-inflammatories and cosentyx, but the bending never returned to normal. So even though I had no pain, the bend continued. Shoes became problematic. When the toes were swollen they did still fit in shoes. After they had started to bend, they didn’t. I bought my first pair of sensible shoes, skechers, and between them and trainers, have worn nothing else for the last two years. The not wearing shoes thing really bugged me. I didn’t want to be tottering about in high heels, I just wanted to wear something pretty. A ballet pump, even a pair of Vans sneakers. The knock on effect of not being able to have the choice to wear shoes was huge. My style changed overnight. No longer did I want to wear one of my vast array of pretty dresses because I didn’t have the shoes to wear with it. I took to wearing black trousers and a sweater. This has been my uniform for many years now and I long to be able to wear a dress and feel more like myself again.

Podiatry

On my first appointment to rheumatology I was referred to physiotherapy, occupational therapy and podiatry. The first two I only required one appointment at each but podiatry I attended a fair few times. The first few appointments were to make me inserts and insoles to try and support my feet, and I was given the green light to have my toenails removed. On a further visit to rheumatology in December 2016, my specialist said that he was happy to have me referred to orthopedics with regards to having the toes straightened. My podiatrist (a horrible horrible woman) said that she would do all she could to make sure I didn’t get the surgery because I hadn’t taken her advice to buy flesh coloured granny shoes.  She told me that my toes were not the worst that she had seen and that I didn’t really have anything to complain about. I knew my toes weren’t the worst, but they were still causing me issues. With hindsight, I should have made a formal complaint against her. I didn’t, but ultimately, I got what I wanted.

Orthopedics – Appointment 1 – December 2017

It would be one whole year before I was invited to go to Woodend hospital in Aberdeen to meet with the orthopedic consultant. I met with Dr Sam Roberts who had a good look at my feet and agreed that the second toe on the left foot was suitable for straightening. I was so relieved! I asked him if I could skip straightening and go straight for amputation. After he nervously chuckled, he realised I was being serious. This request was declined and I was told I would have to try straightening first.

Orthopedics – Appointment 2 – 28th August 2018

Time passes. I age another year. I finally get the follow up letter inviting me back to Woodend for pre-assessment. I meet with the nurse who takes down all my vital details and meet with Dr Roberts again, who looks at both my feet and agrees that not only will I have the surgery on both toes on my left foot, one of the toes on my right was suitable as well! I am ecstatic by this news! One step closer to being my old self again! I’m not given a firm date for surgery but am told it could be anytime between the next day, and anytime up to 6 weeks time.

As we’ve learnt with orthopedics, nothing seems to run on time. The uncertainty of not having my surgery date caused me a lot of issues with my employers and I’m forced to make the call to the department secretary to see if there’s a date yet. There is. Monday 19th November 2018 at 7.45am.

That’s it sorted then. I do the necessary at work, and due to the way my job is, I say my goodbyes to my wonderful project because when I do eventually return to work in the new year it will be to a whole new project with a whole new set of people. It feels very much like the end of an era. Time wise it works out quite well as I was due to finish up at the end of December, we’re able to just pull my end date forward a few weeks.

The Night Before

The surgery is performed as a day case – go in in the morning, operate, go home at some point on the same day. I was advised however to have an overnight bag packed just in case of delays or anything prevented me from going home. Jack and I had been away at the weekend but we get home early evening, I get my bag packed, set an early alarm and get a good nights sleep.

Surgery Day

As I was having my surgery in the morning I had to fast. No food from 2.30am, and no liquids from 6.30am. As anyone who knows me can confirm, this was the part that filled me with dread. Not only do I love my food, I drink at least 4lts of water a day, not to mention my love of constant cups of tea! I didn’t really think anything through. Instead of having a late night snack, or even a mini meal, I had my last bite of food at 18.30 on the Sunday.

I am hungry. Very hungry.

Within the first few minutes of arriving to the ward I feel weak with hunger.

The ward nurses get me checked in and tell me I am 3rd on the list. This doesn’t sound too bad, does it. 3rd. Better than 33rd. I reckon I’ll be in theater by 11am. Stop thinking about food Rebecca.

I’ve bought with me my support team of Jack and my Mum. I’d have bought Molly-Cat if I thought it was allowed.

Dr Roberts arrives and tells me that they’ve lost my consent form. I say that it was both feet and he disagrees, saying he thinks he only said the left foot to be done this time and that he couldn’t even check the consent form to see what had been agreed…how convenient. I was a bit annoyed at it only being the one foot, although this did make life after the op a fair bit simpler.

Shortly after this, the lead anesthetist arrives at my bed. He explains to me that there are two options regarding my anesthetic – general, like I believed I would be having, or the more localised nerve blocker.

He explains to me that the nerve blocker anesthetic is what he advises patients to have. Instead of going fully under, just the leg is injected. This means that there are fewer complications and a better recovery time. I am instantly freaked out by this. “I DON’T WANNA BE AWAKE! I DON’T WANNA SEE! I DON’T WANNA HEAR A PNEUMATIC DRILL BREAKING MY TOES!” We’ll heavily sedate you, he says. Oh. That makes sense. I umm and ahh about it for a few minutes. I’d never been under a general anaesthic, and whilst I’m a little apprehensive about it I do like the idea of not being completely knocked out.

I ask my support team for their advice. They say it’s entirely up to me. Which makes them the worst support team ever.

I decide that having the nerve blocker IS the best option, and agree to go ahead with it.

Time passes. Quickly at first. But by about 11am, I’m getting so hungry I declare I would happily punch my mum in the face for a bag of bbq beef hula hoops. She agrees this is fair.

The physio arrives and presents me with a brand new pair of crutches and a really super sexy moon sandal. She teaches me the basics of how to walk on crutches (weight bearing on the heel) and I pretend it’s a machine gun.

I feel so hungry I half expect Bob Geldof to burst through the doors with Bono on his arm singing “Feed the world” and sharing a text number for people to donate money to for me to eat. The food trolley was so near and yet so far.

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#saverebecca

Instead of sitting or lying on the bed like a normal person, I decide to lay across the bed sideways, with my head hanging off the edge. Why? I’m not sure. Hunger maybe made me do it.

Lunchtime comes. THAT’S A JOKE. No food for me. I’ve now been here long enough that I could have eaten up until 11am like the afternoon patients. The little old dear in the bed opposite me returns from her carpel tunnel surgery and is given a cup of tea and some toast. What I would do for some toast right now. A short while later however she is very sick and suddenly I don’t want toast. Who am I kidding. Of course I want toast. I’d even eat a block of butter right now.

A new arrival turns up in the bed next to mine. Her name is Rebecca. She is a heroin addict. She’s not a very nice person and it’s not a nice situation to witness. All I will say is that the staff on the ward dealt with her aggression admirably and under no circumstances should these wonderful NHS workers, or anybody for that matter, have to deal with such utter BS.

Anyway. I digress.

I’m hungry.

Time passes slowly. We’re all getting hungry and cranky. To pass the time, Jack suggests we talk about our favourite foods. This starts off a great idea, but when moments of total silence arrive, and each of our tummies growls uncontrollably and loud enough for people two miles away to hear, we realise this probably isn’t the game for us.

Finally, at 14.15 the nurse arrives and tells me to get my gown on, I’m going down! Jack ties the gown on me so tightly I think I’m going to choke but hey, it’s better than it falling off. I’m inspected for any last sneaky bits of metal I might have on (hello hair clip) and in to the bed I get. Glasses come off and I’m wheeled out of the ward. I say goodbye to Mum and Jack and the two old ladies in the beds opposite me.

Not having glasses on freaks me out a lot. I’m talking to different nurses and honestly don’t know if I’ve seen them before or who I’ve been talking to.

The Anesthetic Room

I arrive to the wee room attached to the theater to be met by lots of people in green scrubs. The anesthetist from earlier is there and confirms to the group I’m going with the nerve blocker. I’m asked how I’m doing and all I can say is that I’m so hungry I am literally half the woman I was when I arrived this morning. I explain to them all that I can’t see them, which gets more laughter. It’s hard being short sighted.

The canula goes in to the back of my right hand. I was apprehensive about this. I’m not great with needles and I also didn’t know what to expect. Would it hurt? Would I know it was there? It doesn’t hurt at all. It’s taped down and I’m told the first thing to go in will be antibiotics. So far so good.

The next thing to go in the canula is the sedative. The gown is then undone slightly at the back and I’m asked to roll on to my tummy. Which way do I roll, I ask? More laughter, it doesn’t matter they say. I roll over and they get to work on my left leg, injecting it quite a few times with the anesthetic. A few minutes later they ask me to roll on to my back. I can feel the sedative has kicked in and I feel woozy. Once on my back they start injecting the front of my leg. This feels weird. My legs starts to feel almost ‘wooden’. It’s a very strange sensation. We wait a few minutes and then the tests start to make sure I can’t feel my foot. The little pin stick comes out, and a spray bottle full of icy cold water.

They prick the toes on my right foot, yep I can feel it. They then spray my right toes. Yep. I can feel that too.

On to the left foot. Can you feel that?

Errrrr yes.

They try again.

Actually yes, I can feel it all.

They didn’t believe me initially I don’t think. Dr Roberts came in and said we’d give it a few minutes more for it to kick in.

I got wheeled in to the operating theater and was administered another dose of sedatives. My toes were prodded, poked and sprayed again and yes, I could still feel it. I was described as ‘small but hardy’ and before I knew it, the words ‘general anesthetic’ were mentioned. It was popped in to my canula….and I awoke over 2 hours later.

The Operation

So what happened? Well, I’m not exactly sure. There are some things in life that you’re best not to ask too much about, and this was one of those things. I know that the nerve? The joint? That something below the toe was cut to release the joint. I know that my toes were so bent that there was no hope of any future flexibility, and so pins and wires were put down the toes to keep them straight. But other than that….I’m not so sure. Ignorance is bliss.

The Recovery Room

I woke up some time later with an oxygen mask on. I think I fell back asleep a few times. I went in and out of sleep for a while. But when I did fully come to, a lovely nurse started to ask me questions about my engagement, she was talking about it in such detail….I can only think that I had woken up previously and started to a great big conversation about how it all happened. I had heard horror stories from work colleagues about when they’d come round from general anesthetic to find they’d been talking about wildly inappropriate things, so to find out I’d been waffling on about the proposal was a great relief! Another nurse in the room started to speak with me in French (I assume I greatly exaggerated my French speaking ability whilst under the influence) and I bid them both a fond farewell, screaming at the top of my lungs “j’ai faim!!”.

Return to the Ward

Back to the ward I was wheeled. The two old dears had been discharged and Mum and Jack were chuffed to see me. I explained to them the anesthetic debacle and we all laughed that if it was going to happen to anybody, it would have to be me.

I was a bit woozy initially but I felt ok. I was offered toast and tea and I was so happy I could have cried. Jack kindly buttered the toast for me and it was the tastiest toast I’ve ever had. When I was asked a short while later what meal I wanted, I declined dinner and opted again for toast. Plain food. I had seen the old lady being sick earlier and figured I shouldn’t be introducing too many flavorsome foods just yet. A short while later and the pain in my toes was increasing. It wasn’t a constant pain, but coming in waves and getting worse each time. The nurses gave me a syringe of liquid morphine. I’ve never had morphine in any shape or form before but my god, it was delicious. About an hour passed and I decided I was well enough to get up and go to the toilet. I got the green light for this from the nurses, and with Jacks assistance, slowly got myself up on to my crutches and got to the toilet. When I was on my way back to my bed, about 2ft away, I became very hot and clammy, my hands got pins and needles and a huge wave of nausea hit me. I dropped the crutches and stumbled painfully back on to the bed, screaming at Jack to get me a bowl whilst barking at my Mum to tie my hair back.

I was violently sick 4 times. The only positive about this experience is that the sick tasted exactly like buttered toast. The nurse administered anti sickness medication in to the canula.

I felt awful. Really horrendous. I was reassured that this was normal, that it was ok. Lay yourself back down, keep your foot elevated and give it a couple more hours. So I did. It was now 20.00. I felt absolutely fine in myself. I didn’t feel sick and I didn’t feel woozy. My Mum had even said she was impressed at how well I’d come round. I said I felt well enough to give walking another go. I was desperate to get home at this point. I decided to try and get to the toilet and back, if I could manage that then I would ask to be discharged.

I slowly sat up, put my feet on the floor, got my crutches and off I went.

This time I only got about 4 steps away from the bed before I was on the verge of collapse and threw myself back on the bed again, head in a bowl, this time in floods of tears at just how sick and unwell I was.

The nurse came back and I was told that if I wanted to be discharged, there was no possibility of me being readmitted. As much as I wanted to go home, I listened to her advice, as well as the support team, and knew I had to spend the night. Thank goodness I’d packed that overnight bag!

Mum and Jack sorted everything out for me, making sure I had enough water and that my book and phone were within reach, and off they went.

I’d never spent a night in hospital before. As chance would have it, the ward I was in was completely empty. I was the only person in the room of 6 beds, and somewhere far away down the corridor there was only one ever man in ward 9. Everybody has told me that this simply never happens and that I was so lucky.

IMG_6725

Mum and Jack left me at about 21.30. I just rested, texting my sister who was on nightshift as a midwife and tried to settle down. The nurse on duty came to see my multiple times, explaining that she wasn’t surprised I was doing so badly given the fact I’d had double anesthetic given to me. By midnight I pressed the buzzer and told her that I wanted to try going to the toilet again. I felt absolutely fine, and crucially, I needed a wee. She helped me to get my shoes on, and slowly we walked towards the toilet. Same scenario as before….just a few steps away from the toilet and I started to collapse. I fell in a heap. She helped me up, and I got myself on to the toilet. She pulled the cord to call for another nurse. As I was trying to wee, I started to be sick all over the floor. And typically, try as I might, no wee came. The two nurses wheeled me back to bed and got the cool air fan on my back, as I lay in a heap, sobbing again. My blood pressure and heart rate was taken, all fine. I really did feel fine….apart from when I was moving. Another lot of anti sickness meds given, and the nurse came back with a cup of tea, two rich teas and a chocolate biscuit. I probably should have given the choccy biscuit a miss but I couldn’t resist.

Keeping my foot elevated and with the duvet stopping at my ankles, so not to cover my pins, I managed a few hours sleep, waking at 6am. I had drastically limited how much water I was drinking through the night, knowing that I couldn’t make it to the toilet. But now I really did need a wee. The nurse said that instead of me attempting the toilet again, she would bring over the little toilet on wheels for me (Side note – how amazing is one of these, I need one of these in my life so badly) and wee I did. As I slid myself from the seat back in to the bed….I hit the bed again. Hot clammy and being sick. I really didn’t see a way home.

The nurses changed shifts and I fell asleep for another half hour or so. The breakfast ladies came round and didn’t even need to ask me how I took my tea. They gave me extra tea and extra toast.

During all of this, I didn’t even really think about the pain in my foot. But it was sore. Not excruciating, but pretty damn painful. I was offered pain relief but I declined. I didn’t want another shot of morphine in case that added to my general wooziness. I had had paracetamol and dihydrocodeine during the night and I knew that once I was up on my feet again I would take them and they’d do the job.

Dr Roberts and his surgeon apprentice did their rounds early on and came to apologise to me for the anesthetic debacle, and that they weren’t surprised to see me there that morning.

I carefully, and slowly, managed to dress myself. This was progress! Mum and Jack arrived at 8.30 and over the next hour I slowly sat myself up straighter and straighter.  I wanted to edge myself in to it and not give myself a sudden rush of blood to either the head, or the foot. By 9am, I had touch down. Both feet on the floor. I just sat there like this for about 5 minutes, allowing my body the time to get used to it. And then I attempted it….I walked to the toilet. And most importantly….I walked back. No nausea, no collapsing, no tears. I was a tad unsteady on my feet, and they did hurt, but I felt confident enough to go home.

My discharge papers were signed, a wheelchair found to enable me to comfortably get to the car in the rain, and away we went.

Home at Last

Jack dropped us off and went off to work, and Mum helped get the flat set up for me. She made up the spare bed and a temporary sofa bed for me to spend the day. We both napped (this is why I love my Mum, she loves a nap) and I kept my foot elevated all day. Apart from walking to the bathroom (that seems to be the only walking I’ve done all week), I did absolutely nothing. I know just how fortunate I am to be in this position, to be waited on hand and foot. Molly-Cat was ELATED that I was home, however, she took quite an interest in my pins. Like, really interested. She kept trying to get close enough so she could sniff them. She was banished out of the lounge during that day so that I could rest and recover without the fear of Molly eating my blood. Towards the end of the day, when her crying got too much, we let her in and after some good sniffing, she did seem less interested in them, and just snuggled in with me on the sofa. That evening I slept in spare bedroom, with the door shut tight, keeping Molly out. We’ve had many guests stay over in the spare bedroom and she has never shown any interest in getting in the room to be with them, sleeping in bed with Jack and I. We figured that she would sleep with Jack as normal and be unaware of me just a few feet away.

She wasn’t.

She’s not easily fooled that Molly. She cried. I don’t just mean the odd mew. I mean she cried and cried and cried. Sat outside the spared bedroom door, begging me to let her in. I had no choice. In she came, settled down high on my chest with her face so close I could taste the dreamies on her breath, and so we slept.

Since then, I’ve taken to sleeping all night on the sofa. It’s easier for me. No need to get up and remake up the sofa with pillows and duvets, I just stay here, festering in my own juices all day every day.

The Aftermath

The first few days I was incredibly sleepy and sore. The pain however has subsided immensely. Now it just feels uncomfortable as opposed to painful. Hot and itchy. Having said that, I haven’t gone outside or done more than an average of 800 steps a day yet, so that could change everything.

I was worried that I would be painfully aware of the pins. I’m not. I’m not even that freaked out to look at them. Sure, they look like little kebab skewers and Jack wants to stick peppers and onions on them, but all things considered, it’s ok. I’ve even lightly touched them a couple of times, when I’ve gone to scratch my toes, and it’s been ok.

The bandages don’t get changed until 2 weeks after surgery (at least I think this is what the follow up appointment is for) so they are very bloodied, which surprised me, I thought they would get changed, but I guess the wounds shouldn’t be agitated any time soon.

I had my first bath on the Friday, 4 days after my surgery. I’m fortunate enough to have a kidney shaped bath that has a wee shelf in it. With the help of a pedal bin bag and two pegs, I was able to cover the left foot, carefully get in to a shallow bath with my right foot, and rest the left on the shelf. Sadly though I had chucked away my last disposable razor and am now so hairy Molly thinks I’m her actual cat Mum. Jack is thankful we’re not sharing a bed. Washing my hair was not quite so simple. I didn’t want to kneel on the floor over the bath in case I stubbed the pins, so with the use of a camping chair and two cushions, I managed to sit and lean over. It wasn’t comfortable, but I’m only looking to wash my hair once a week so I can cope.

I’m taking fewer and fewer painkillers now, which I’m pleased about and I think in a few days I’ll be confident enough to sleep with the duvet over my toes. I’m going to be completely off my feet for another full week. It may seem extreme, keeping it elevated for two weeks but I don’t wanna dick around with my recovery. I’ll be having the pins removed at 6 weeks, and will be spending the weeks between now and then with my feet up as much as possible.

During this time at home, Molly has not left my side. She is a Mummys girl anyway, but she really won’t leave me alone. She knows I need extra love and cuddles, so together we spend our days cuddled up on the sofa watching Netflix (The Chilling Adventures of Sabrina is AMAZING) and reading (Bruce Springsteen- Born to Run). Mum has come over every week day to look after me and Jack and I have enjoyed the weekend watching football and playing board games.

I have no idea if all of this will be worth it, but let’s hope so.

I did warn you it was gonna be a loooooong one.

I’ll provide another update after my nurses appointment on December 4th.

I apologise for the foot photos, but you were warned.

But for now, I’ll say goodbye. I’m gonna get a cup of tea (well, I’m gonna ask Jack to get me a cup of tea) and then we’re gonna settle to watch David Attenbouroughs Dynasties.

 

TL:DR

Toes cut and pinned back together.

 

 

 

 

Anxiety Anxiety Go Away

It’s not just you.

I don’t know what the title in the graphic means either.

Anyway. Let’s get straight to it.

I usually spend my time at work doing anything that isn’t work related. 25% internet trawling. 25% instagram. 25% messaging people. 25% eating.

But the last few weeks I’ve gone a bit quiet. Both online and in real life.

I feel like I’ve been falling apart. Spiralling out of control. Overwhelmed by simply being alive.

Why the ‘life falling apart’ feeling? Why so overwhelmed?

Why the constant state of anxiety? The panic attacks. The not sleeping. The being so worried that I’m not eating. By choosing not to eat to try and regain some control. The not replying to people for weeks. No real activity online. The calling my Mum at all hours of the day and night crying. The snapping at Jack and being so anxious I don’t want to look him in the eye. The taking time off work to stay home in my dressing gown, watching back to back Real Housewives wondering if I could just stay inside and never have to go in the real world ever again.

It’s a combination of a few things. Some real, some not so real.

Redecorating the flat, 4 rooms at the same time, is apparently quite stressful. Things everywhere. A state of chaos. Workmen coming and going. It unnerves me greatly, the loss of control over my living area. Not knowing where things are. The order of the flat gone. My mind works in such a way that if the bed isn’t made ‘correctly’ in the morning before I go to work, it genuinely makes me anxious. Jack often tries to make the bed and I have to remake it. I know how ridiculous that must sound, a shoddily made bed making me anxious, but it’s true. My flat is my safe orderly space. Everything in the flat has it’s own place and when it’s not there, it just adds to making me feel anxious. I sound like a terrible person to live with. I’m sure if I asked Jack he would say that my sense of order drives him crazy but that equally,living with Monica from Friends does have it’s benefits. Like a well made bed. Last Monday the work was finished in the bedroom. As soon as the wardrobe went back up and my books reappeared I sensed a certain (small) amount of calm returning. The books aren’t back in their ‘right places’ just yet, and the clothes aren’t in correct order yet either (FYI, the front of each piece of clothing has to face the right, and it goes jumpers > long sleeve tops > short sleeve tops, etc. It’s very organised) but it’s getting there. The whole redecorating thing should be finished in a fortnight. Well the first stage anyway.

So why the sudden rush to redecorate? I mean we’ve been in the flat two years and done very little so far. Well our happy block of four flats has changed somewhat. Without going in to detail and upsetting myself,it sets me on edge. I don’t like confrontation, but I mean, who does. Mainly, I can’t cope with confrontation. With people trying to encroach on my safe space, people trying to dictate how we live. People who made me so worried and upset that I made my beautiful little Molly-Cat sleep in the lounge for a few nights so that I didn’t have to spend the night awake, worrying to the point of tears that she would wake them up (I know how stupid this sounds but this is one of their complaints). A cat who, when shut in the study, or even the wardrobe overnight, just settles down and sleeps. But a cat who, when shut in the lounge with food and litter tray and scratching posts and cat beds and blankets cries and cries and cries and cries and cries.

I am wanting desperately to leave the city that I have now spent 10 years and 12 days living in. A city that has never made me happy. A city I was only ever supposed to live in for 4 years. A city that over the last few weeks has left me wondering why I am still here. Seeing most of my friends move away. Longing to be one of them. Trying to work out the master plan to move to Edinburgh. Knowing that if we sell the flat we can buy a house there. Knowing that we don’t want to sell the flat.

My work situation is….interesting right now, and no, not just because I spend my time not doing the work I’m paid to do (this is a slight exaggeration by the way, I do my job and I do it well). On the cusp of needing to find a new job. Interviewing for a new job. Interview going so well the people were arguing over who’s team I would be joining. Waiting for the official offer but knowing that the job would require me to start mid November. Mid November being when my surgery is going to happen. Knowing that I can’t ask to postpone my surgery because I have waited so so long for this that I don’t want to run the risk of going to the back of the queue. Knowing that I’m going to have to explain that I can’t start until New Year and hoping they understand. Knowing that as it stands come New Year I won’t have a job.

A few weeks ago my health took a bit of a negative turn. Lots of doctors appointments, lots of tests, the dreaded C word getting mentioned. A week in limbo waiting for the results. Obsessing over everything in my mind a hundred times a day. Worrying about scenarios that weren’t even real. And then finding out I wasn’t going to die and trying to get my head around the fact that whilst ill, I will be fine, is hard for someone who worries about everything. So. I’m going to live. Hoorah. Cosentyx is still keeping my inflammation at bay, but I hurt, I ache. Fingers hurting and more strangely, the tops of my hands. I don’t know how to explain it other than sore. On the cusp of a flare. My knees are hurting again and whilst I know it’s my own fault for running, it doesn’t make the pain any more acceptable. I struggle to medicate to control my pain levels. Paracetamol doesn’t do anything. OTC cocodamol does little. Pharmacy strength cocodamol helps but leaves me sleepy. Tramadol  makes me high as a kite. I’m also totally the kind of person to get addicted to prescription painkillers. I know this because I know. So I go through the work day with no pain relief. I go through the weekend with no pain relief because I can just mope in the house and suffer with it.

Everything at once. I just want to run away from it all. Curl up in a big ball and just stay under the duvet with only my cat and a good book for company. Is that too much to ask?!

I feel once again my ability to cope with life, in even it’s simplest forms, slipping away. The last time this happened I found myself crying to a GP I’d never met before begging him to put me on anti-depressants. I’m about a week away from going back to see him to ask him to put me on them again.

I can’t be the only person who sometimes get overwhelmed by life can I? I never used to be like this. Not to this extent anyway. Since I got sick I’ve definitely noticed a change in who I am and my coping abilities. Or lack thereof. I’m grateful for the fact that I’m able to talk about this, that I don’t keep it to myself. That my family listen and support me. I’m thankful that there are people in my life, even if just on the periphery, who understand me. I’m fortunate to have a cat who provides me with unlimited headbumps and cuddles.

I’ve always been a lover of lists but to try and cope with all of this my list making has gone in to overdrive. Everything from feed fish to paint lounge wall to wash hair. Things I don’t necessarily need reminded to do (although I did recently just go 5 days without washing my hair trololol) but writing down everything that needs doing helps me to get my head focussed for the day or week ahead. I used to run to help clear my mind but that isn’t something I can do right now. IT SUCKS.

How do you all cope with anxiety? What helps you to refocus and worry a bit less?

I’ll stop waffling on now. It’s not all doom and gloom. I return to my spiritual home of Disney in 4  and bit weeks. My writing is soon to be published in a few big medical journals. I bought the snuggliest teddy bear coat known to man yesterday and It may even take the place of my beloved, but ratty, parka jacket in the ‘you’ll have to prise it off my cold dead body’ stakes. I’ve read the 15 books I planned to in my Goodreads challenge and have now upped it to 23 (Are you on goodreads? If so find me under the username of thenorthgirl ). The weather is cold which means heating and blankets galore, the leaves underfoot are gorgeous and my best friend is coming up from London to stay at the weekend, which means a road trip to visit the new V&A in Dundee.

My promised blog post (which involves ya gal on film) is delayed for a few days until I get my shit together and am able to do it justice, so I’m gonna stop making promised on when blog posts get published cos I clearly can’t keep them! Unless I start writing it down in my to-do list….

Toenail and I.

*WARNING*

If you don’t like talk of toes then this is not the blog post for you. There will be no really bad feet photos included (although I do have hundreds for my own personal collection) and I am obviously not a medical professional so I cannot give medical advice on personal situations. Also, GOOGLE IMAGES AT YOUR OWN RISK.

Here we go.

Earlier this morning, I had my 5th round of minor surgery on my toes. It has been something I have mentioned many times before, either here on the blog or on my Instagram but I don’t know if I’ve ever explicitly stated what it was I have been getting done.

I was supposed to just have two toenails worked on today, with my final appointment for the last toe to happen in a few months time. But as the three toes were not next to each other I was asked if I wanted all three off. I agreed and that’s me done forever. So what was it?

Permanent toenail removal. I have now had all my toenails permanently removed.

Why?

Psoriasis of the nail.

I come from a family with a long history of psoriasis on my Fathers side. Scalp psoriasis controlled and ruined my life for so many years I can’t remember what life was like before I developed it. However it wasn’t until after my psoriatic arthritis diagnosis that I started to notice my nails ‘turning’.

The Fingernails

It started in my fingernails. I noticed they were ‘pitting’. The best way I can describe it would be that I started to have little dots in my nails, like they had been pricked with a needle. Lots of little dips and holes. The nails started to become discolored and the tips of the nails became brittle and sort of strange looking. I really don’t know how best to describe it. I am a lover of nail polish and I realised the nails were getting really bad when I couldn’t remove the polish from the dips. These photos aren’t great (I can’t find better ones) but hopefully you can kind of get the idea. The tips of the nails yellowing and kind of spreading  unevenly down the nail.

 

 

 

I have since found photos on instrgram which better show the psoriasis. This was my thumbnail, the photo taken on 1st November 2017, so not that long ago. This is unrecognizable to what I have now, but it very clearly shows the pitting,

IMG_1847

Thankfully however, the psoriasis in my fingernails wasn’t particularly painful and I could manage them. The nails stayed the same thickness and I was able to clip them and file them to try and keep them as tidy as possible. I also learnt that a nail buffer was really useful in trying to keep them smooth. I don’t know if this is recommended (probably not!) but gently buffing away the ridges and dents made a great difference. Since I started cosentyx the pitting has almost stopped, which is great.

The toes however. A whole new level of pain.

The Toenails

It started very quickly. There was no gradual development, just one day I woke up and my nails were causing me agony. One after the other. Big toes first, then it crept to the smaller ones.

If I asked you how your toenails are feeling right now, you wouldn’t be able to tell me. It isn’t something that we can feel, that we’re really aware of, until there’s something wrong with them. My nail psoriasis caused me such pain that I couldn’t put a sock on without being in a lot of pain. Feeling them rubbing against the tops of my shoes became unbearable.

Unlike the fingernails, I couldn’t manage them. They grew ‘backwards’ causing them to be very thick. The grew sidewards and inwards, I suppose like it would be if it was ingrown. I couldn’t clip the nails because of the width and thickness, but also because at this point my arthritis was so severe that I couldn’t even bend or contort my body to reach to do it. My boyfriend loves me dearly, but even he has a limit.

The History

On my first appointment to rheumatology I was referred to a podiatrist. On my first appointment, I had insoles and inserts made to try to stop my toes from curling any more and it was agreed that I could have permanent removal on the big left nail. I’ll go in to more detail shortly.

On my third appointment with my podiatrist, after the removal of the first, she reluctantly agreed that I could have one more nail off but that she would not be referring me for any more removals because, and I quote, “I’ve seen worse”. Well that’s great but it’s not a competition. She also declared that she would use all her powers to forbid me from having toe straightening surgery. Why? Because I turned up to the appointment without socks on (as stated before, socks hurt my nails like a bitch) and because I hadn’t taken her advice to buy granny flesh coloured velcro shoes. To cut a long story short, she dismissed me from podiatry, ordering me to not return to see her, I left the building in floods of tears on the phone to my Mum, declaring that I would find where she lived and burn her house down.

Slight exaggeration. I’d maybe just let it burn half way down. (I’M JOKING).

Cue frantic googling of private practices in the greater Aberdeen area who would remove them in return for money.

On my second removal session however, I was treated by the most wonderful woman named Frances.

Frances was an absolute wee babe. She not only agreed to take two nails off at that session, but that she personally would book all my future appointments, meaning that I no longer had to go through the podiatrist. HAHAHAHA TAKE THAT. Plus orthopedics agreed to straighten my toes shortly after so I win again!!

I think I had 6 nails that were riddled, but I asked Frances if it would be possible to have them all removed, even the healthy ones. Why? Everything was happening so quickly that I felt it was inevitable that I would shortly have psoriasis in all of them. Frances agreed with my sensible logic, and that is what has led me here today.

The Logic

I decided that permanent removal would be the best solution for me. If something is causing you a problem, and you know that you can fix the problem by removing the source, you’d do it right? Well that’s what happened here. The nails are causing me pain and problems. No nails = no pain or problems. I learnt that after the nail is removed, a thin covering will appear where the nail once was so if you’re self conscious, you could still paint on a fake nail with nail polish.

The Procedure

This is minor surgery. You’re in and out within about an hour. For me here in Aberdeen this is done at Frederick Street Health Clinic.

On arrival, you’re weighed to establish how much anesthetic to have administered. You point out the nails that need removing, and then on to the bed you go. Try to get comfy and try to relax.

The toe obviously has to be injected with anesthetic before any work can be carried out. Be warned, these injections are the worst pain I have ever encountered. The big toes in particular are the worst. I’ve been injected directly into my ankle joint before and even that was less painful. Whilst painful, once you’ve been injected that’s it pain wise. So yes, it does hurt. I won’t lie and say it doesn’t, but honestly, once it’s done, you’ll quickly get over it.

The toe is injected twice. Once from either side at the base of the toe. I always take my Mum with me so that I can squeeze her hand, but also because she talks to me throughout the injecting to keep my mind off of it. Top tip – wear a hoody or a jumper. Why? Because you can bite down on it during the pain. Top tip number 2 – Don’t wear grey. I seem to own only grey sweaters and each time I’m injected I sweat so much with fear and pain you could probably wring me out. Top tip number 3 – if like me you’re a glasses wearer, take them off. It helps not to see things in these situations.

Once the toe has been injected, you’ll wait a few minutes for the anesthetic to work. Your toe will be proded by a little sharp stick and assuming you can’t feel the sharp point, you’re good to go. If you can however still feel the toe (this has happened to me on a few occasions), you either just wait a few more mins, or you’re injected again. A tourniquet will be applied to stop the toe from bleeding.

A screen will now be put up so you can’t see your feet. A bit like a little toe cesarean. The podiatry surgeon will then get to work on removing the nail. I’m not going in to detail here because a) it’s grim and b) what I don’t know doesn’t hurt me.

Once the nail has been successfully removed, the area is rubbed with phenol acid. This sounds scary but remember, YOU CAN’T FEEL A THING.

What is the acid for? It’s to kill the nail bed off, preventing regrowth. This is what makes the removal permanent.

Once the nails have been removed, they’ll be dressed. The first dressings, the official one, tends to be big, chunky and very bulky, so wear big shoes that can accommodate this. Not big like clown shoes, but big like extra space.

You’ll then have to sign some paperwork stating that you’ve had anesthetic, what to do over the next 24 hours and that you know not to drive. DO NOT DRIVE. Your insurance is likely to be invalid as your toe is numb.

The Aftermath

Everybody is different in terms of when it happens, but the anesthetic will wear off.

My first big nail removal, I had barely hobbled to the bus stop (all of 400 yards away) before I was crying in agony. Pain level 10. I got home and was writhing around in pain. Curled up on the bed crying my eyes out. I couldn’t get painkillers in me quick enough.

Other nails have had a gradual wear off and little pain. Although I am smart enough now to know to take two painkillers after I’ve left the surgery.

Rest for as long as you feasibly can. Feet up, keeping weight off them. For me I take 48 hours off from life to rest them, although in an ideal world, I would take at least 5 days. This may seem a tad extreme but when I return to work after my standard 2 days of ‘working from home’ (HAHAHAHA, that ol’ chestnut) I instantly regret it and hate myself for going in.

The Aftercare

You’re issued with an aftercare booklet, however I decline them now as I’m an expert, so I’ll have to explain in my own words.

Keep the toe dry for 24 hours at least. You can shower with dressings. Which I was never told when I had my first nail off. I literally kept that foot out of water for 10 weeks. I had to become very inventive:

IMG_1850

Yes that’s right. I made a bin bag shoe. Thank goodness the woman who owned this flat before had a bath with a little shelf. The shelf was a godsend.

Anyway. You’ll be required to keep your toes clean and as sterile as you can. You’ll do this as follows:

  • Boil a kettle of water
  • Add this water to a large bowl
  • Add about 2 teaspoons of salt (I don’t know the exact amount any more, I just know by pouring and experience)
  • Leave the water to cool, THIS IS VERY IMPORTANT
  • When the water is no hotter than 30 degrees C (be sensible here, if the water is on the cool side of warm, you’re ready) then it’s good to be used
  • Tip – I pour my boiling water then I take a bath because when I get out it’s cool enough to use, but also because you’ll need to change the dressing if it gets wet, so makes sense to do the daily dressing after bath/shower time
  • Get your dressings and towel prepared
  • Pop the toes in the salt water for a minute, maybe 2
  • Remove toe, dry VERY CAREFULLY and try not to touch the wound (I leave to air dry, I just use the towel to pop my wet foot on)
  • When the toe is fully dry, dress the toe
  • The dressing should be placed directly over the wound, shiny side down (I very loosely tape my dressing pad to the toe to prevent it slipping around)
  • Pop the tubular bandage over the dressing, it should be twice the length of the toe. Then twist the bandage and pull the other half down. This means you wont see the top of the toe
  • I then use tape to secure the bandage. DO NOT WRAP THE BANDAGE OR TAPE TOO TIGHTLY BECAUSE THIS CAN REDUCE BLOOD FLOW. Take it from someone who knows. If it feels too tight at any point, redo it
  • Repeat this every day until the wound has healed. It can take weeks. I do mine every  day until it has completely healed. Better to be safe than sorry
  • Healing can take anywhere between 6-12 weeks.

Things to Note

As you’re required to change your own dressings, you’ll need to have stocks in ready. When my leaflet explaining what would happen arrived in the post a few weeks before the first procedure, it stated that not all of the required items were available on prescription.  Even though the tape and the sterile dressing pads are available on prescription, I decided that I would order all of my own supplies through amazon. This might be useful if you’re in England and have to pay for your prescriptions, amazon might work out being cheaper.

I use the following:

https://www.amazon.co.uk/Religauze-REL481-Tubular-Gauze-Size/dp/B00B2LLEVA/ref=pd_nav_hcs_rp_t_1?_encoding=UTF8&psc=1&refRID=40XZV03YCGKD1VBDD84V

You’ll need to adjust the size of the gauze depending on which toe you’ve had work on. Big toe = bigger gauze.

https://www.amazon.co.uk/Mefix-Adhesive-Fabric-Dressing-5cm/dp/B002ZH2Z04/ref=pd_nav_hcs_rp_t_2?_encoding=UTF8&psc=1&refRID=E3SVSK7MMQ9FVHY2HGH8

I cut this into the sections, and then I halve them to make them more manageable sizes.

https://www.amazon.co.uk/MELOLIN-INDIVIDUAL-STERILE-ADHERENT-DRESSINGS/dp/B00C0AVMHS/ref=pd_rhf_pe_s_cp_0_6?_encoding=UTF8&pd_rd_i=B00C0AVMHS&pd_rd_r=V130NJB9X4G9N165V1RJ&pd_rd_w=9H84a&pd_rd_wg=Q0jkG&psc=1&refRID=V130NJB9X4G9N165V1RJ

Again, I cut these in halves. This is my personal preference, but half a dressing means that it’s less chunky and it’s easier to apply and tape the gauze, no trying to fit the whole dressing in.

The leaflet also stated that I would be back to the clinic a few days later for my first dressing change. This is no longer offered here. I appreciate each NHS is different but bear this in mind. Which nicely leads me on to….

Ask the podiatrist HOW to change your dressings. Because I was never given ANY information on this and had to learn very very quickly what to do. It was trial and error but after the first maybe 10 times, I’d perfected my technique. Although bear in mind, each toe is in different positions with toes/no toes either side so you’ll have to adapt your technique but you’ll become a pro.

If you suspect infection, go to your GP. I developed two infections on the first big toe, both of which had to be treated with antibiotics. I was on methotrexate during this time so was at a heightened rise of infection, so bear this in mind. In my experience, if you’re concerned about the healing, or lack thereof, booking a nurse appointment might be worthwhile. For toe number 1, I booked an appointment because on top of infections, I also had no idea what the toe was supposed to look like or it it was healing. I then started to worry I was overreacting, but the nurse was really sympathetic and it was reassuring to hear that the toe was healing nicely, and that my dressings were doing the job.

Here’s a wonderful selection off photos from over the last year for you to enjoy

 

 

 

 

Today went well, the three nails off were all declared healthy but my request to have them off anyway was still fully supported and for this I am incredibly grateful. I am however in a lot of pain now. Having my fused toe injected (second on the right foot) was literally the worst injection to date, and I did cry, but the team were lovely and my Mum, as always, was there to support me. The anesthetic wore off very quickly and I’ve been popping tramadol like they’re sweets, but still very, very sore. I am due to log on from home soon to work but I suspect I am going to need to nap.

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Feet up on my sofa, Disney pjs on (are there any other kind?), cat on my legs, endless supplies of cups of tea.

If you’ve got this far then as always, I salute you. If you’ve been considering permanent removal then I can’t recommend it enough. If you’ve any questions or are curious about anything then please get in touch.

I’m off to put Aladdin on, coorie in with my cat and marvel at being another step closer to my own personal recovery.

 

Number 1 On The Bucket List = COMPLETE

“You have brains in your head and feet in your shoes. You can steer yourself any direction you choose. You’re on your own and you know what you know. You are the one who’ll decide where you’ll go. Well, go forward, go forward. On to glory!”

Last Sunday I fulfilled a life long dream. I ran the London Marathon.

In the run up to the big day I was avoiding a lot of conversation about it. The odd photograph on Instagram here and there, but no writing. I had so many things that I wanted to blog about but I didn’t. Why? Well, firstly, I was very, very scared about what I was going to be putting my body through. This was my first marathon ever, which was scary enough, but add in my arthritis to the mix and I really did feel like I was dicing with death. People don’t tend to know that they have an undiagnosed heart condition until it’s too late after all. But I also didn’t blog because I am always very aware that just because I can do a marathon with arthritis doesn’t mean this is the norm. I suppose part of me didn’t want to be ‘rubbing it in’ peoples faces.

However.

I feel like this might be the longest blog post I ever publish so get the kettle on and settle down.

In The Beginning

This journey begins in the 90s. Little Rebecca, sports mad. A talented school athlete. A lover of watching the marathon. Little Rebecca knew that one day she was going to run the London Marathon.

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I’m sure we all know what happens between then and April 2016. I continued to be sports mad. I would travel the UK and Europe to watch football. I never found a sport I didn’t enjoy. I grew taller. I went to university. I became lazy. I start running. Life becomes very good again. My health improves. I become fit. I lose some much needed weight. My mental health becomes the best it has ever been. My confidence generally is sky high. I fall head over heels in love with running. I run and then one day I can’t walk. I stiffen up. I can’t move. I’m swollen. I’m in pain. Turns out, I have psoriatic arthritis. I sink in to a deep depression of which I can’t see how I will ever get out of it. I can’t even walk from one room to another, let alone run. Life becomes dreadful.

However. I don’t know when I’m beaten.

The Build Up

On the 15th August 2016 I applied for, and was given, the marathon place from Arthritis Research UK. Looking back now with hindsight, what a really really really stupid thing for me to do. This was still 2 weeks before my official diagnosis at hospital, I was medication free and flaring badly. But I clearly had the naïve belief that I would be ok and up and running again one day. I took a charity spot because I knew that I had to run London. There was no other marathon that would do. I didn’t want to enter the ballot and not be successful. I needed to know I would be running. Which was a sensible idea because I haven’t received a ballot spot in the 4 years I’ve applied. Plus, it’s always nice to raise money for charity, and ARUK were a charity who I suddenly and unexpectedly had a very personal connection with.

Come the day of the 2017 marathon I was unable to run and had to defer my place (See here for how I felt that day and also some cracking photos of me in a hat: https://sensibleshoes.blog/2017/04/23/the-london-marathon/ ) I was failing spectacularly on methotrexate. Heavily reliant of diazepam to try and control the pain and spasms I was having in my neck. This was probably the worst month I have ever experienced with arthritis. This would continue until I started sulfasalazine. Which I had such a severe reaction to I was taken off after only 6 days. 3 more months of being in a flare and medication free would follow until October 2017.

Enter cosentyx. The injections worked instantly.

In the November, I would run my first 5k in a very long time around The Kelpies. It would be slow but steady. I would get round the entire course without stopping in 40 minutes. My body felt strong and I had no negative repercussions over the next few weeks. I would boldly declare this the day that the marathon comeback started.

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Only it wasn’t. I wouldn’t run again until February. I would have toe surgery in the January that would prevent me from doing any exercise. I tried to keep moving and so walked 1 mile every lunch break. I still felt quite fit. But fit enough for 26.2 miles? HELL NO. I also didn’t do a lot of running because I am inherently a very lazy person and don’t need an excuse to stay home in my pjs and just read. But mid February I did start going out a few times after work. The odd 3km. Maybe a 6km if I was feeling good. Saving a 10km run for a Sunday.

I combined the running with a lot of walking but I felt ok in the days after. No joint pain, no swellings.

But it wasn’t all good. My longest run was only 6 miles. All of my training runs combined only came to 32 miles. This is 100% not advisable in any way.

The last few weeks have been some of the most difficult of my life, physically and mentally.

My decision to run the marathon was one that truthfully, I didn’t really think through. When I was first diagnosed with arthritis, I was so angry that it had robbed me of my ability to run. To do something that I loved doing. It destroyed me. Pre-arthritis, my body was strong enough and I was fit enough to be working towards a sub 4-hour marathon. I knew that my first marathon would have to be London and I knew that it wouldn’t be my last.

But obviously, we all know what happened.

Overnight, I was left devastated by the fact that my body had given up on me.

Overnight I had become disabled.

Even though I could barely walk, I still believed that one day I would run again. That one day I would run the London Marathon.

With the benefit of hindsight, this would be one of the most naïve moments of my entire life.

Over the last four weeks though, I have struggled with the enormity of what I am about to do. I would cry at any given moment, overcome with fear that I wasn’t ready. That my body wouldn’t get around the course. That somewhat morbidly, I wouldn’t survive. I was quite literally sick with fear. I would sit up all night worried about what would happen. On numerous occasions I decided that I simply wouldn’t bother competing. After one particularly arduous 6 mile run, Jack said to me “I feel like you’re not enjoying running any more. Are you?”

And the answer was no. I wasn’t enjoying it. Every short run was fraught with fear that I was making my body worse, and let’s be honest, I probably was. My left knee was causing me so much pain that I didn’t know what to do. But as I kept reminding myself, I needed to do London. For me. I needed to know that I could still do it. That the arthritis that has so ravaged my body and my life would not win.

I needed closure.

And with that, I promised Jack that I would never run again after the marathon. I feel okay with that.

The pressure continued to build. I developed a very good relationship with the team at Arthritis Research UK and we agreed that they could share my story with the local and national press.

First up came the local paper, the Evening Express:

https://www.eveningexpress.co.uk/fp/news/local/north-east-woman-to-run-london-marathon-after-doctors-told-her-she-may-need-wheelchair/

The day after this was published I went to the local radio station North Sound One to be interviewed:

https://planetradio.co.uk/northsound/local/news/aberdeen-woman-battling-severe-arthritis-taking-on-marathon-challenge-2/

My interview ended up being played on every hourly news bulletin. Work colleagues were asking for autographs. I became very aware that there was a lot of expectation on me to complete the marathon, a lot was riding on me delivering.

Then came The Scottish Sun:

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And so the anxiety grew. I had so many sleepless nights. I would cry repeatedly throughout the day. I lost nearly 10lbs in weight because I was constantly being sick through fear. I couldn’t do it. I wasn’t ready. My body couldn’t do a marathon. I was going to drop out, I could feel it. I would never live it down.

The week of the marathon arrived. Then came an even bigger blow. My employers, who prior to this had agreed to match my sponsorship, suddenly declared they wouldn’t be making any kind of contribution. I had been quite relaxed about my fundraising until this point because I knew that I would be matched. Now, with a week to go, I was up a creek without a paddle. This is still an issue that I have a great problem with and I’ve escalated the matter up to senior management and will continue to do so until they keep their promise to me.

Oh. Did I mention that London was about to be in the grip of a heatwave?

Friday 20th April 2018

On the Friday, to London JP and I went. Anxious but I felt surprisingly calm. There was to be no going back now. At the airport I learnt that I would be one of fifteen running because they had arthritis. It kept things in perspective about why I was running. I never thought I would have this opportunity. I was now just 48 hours away from it. I was doing it against the odds.

The Expo at the Excel center awaited. The DLR rammed full of other people off to collect their race numbers. Silently sizing everyone else up “I’ll beat him” “I bet she’s fast”. I wonder what people thought when they saw me. Were they sizing me up? Slim, looks fit, bet she’s done this before. But nobody knew of course just what’s going on with my body. And I too didn’t know what everyone else was going through. How many others were there overcoming their own hurdles and personal struggles.

The expo I did not enjoy. I felt like a complete fraud. I can’t run a marathon!! These people are actually running  it. I just want to complete it. People at the stands trying to get me to sign up to various exotic marathons around the world. PLEASE STOP ASKING ME I CAN’T RUN A MARATHON I DON’T BELONG HERE. Forgetting of course, the whole reason why I was there was because of a marathon. I did however see Paula Radcliffe.

Fun fact about me. I am in love with Paula Radcliffe. I met her in Glasgow in October 2015.

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Let’s just take a moment to appreciate how fit and toned my body is here. SIGH. I had just run 10k. I was probably quite sweaty and smelly but she was far too polite to say so. I went up to her and I found myself stroking her arm. Not just a light brush. But caressing her arm. I can’t tell you just how unbelievably lovely she is. So it was a lovely surprise to see her in London and to be so close to her again.

The restraining order has clearly been lifted.

What I did enjoy about the expo though was the shirt printing station. I had known for a while that I was going to have an additional message on the back of my shirt and now was my opportunity. This would turn out to be the best £14 I’ve ever spent on running. Even though they didn’t include the apostrophe I so clearly added.

Something that they don’t tell you about marathons though (and if they do they should bloody shout it louder) is that you will be absolutely SICK of pasta. I was eating so much pasta that I got to a stage where I couldn’t chew it anymore. I was shoveling it in my mouth and it was going nowhere. It was pasta puree, like baby food, just falling out of my mouth. I have never been so attractive.

Saturday 21st April 2018

So came Saturday. The day before Sunday. The day before the marathon. Nerves quite high. But also I felt quite content. The weather was lovely so we decided to go for a walk. After a quick pit stop at the National Gallery to see my favourite painting of all time (FYI, Whistlejacket) we went to my happy place to avoid the marathon pressure. Somewhere that holds so many happy memories for me, Going as a child with my parents and my sister to feed the ducks. To hunt for squirrels. To play and laugh and have fun.

We went to St James Park. AKA THE END OF THE MARATHON. I wasn’t escaping the stress, I was willingly walking right in to it.

More pasta puree was consumed and that nights sleep would be one of the best I had in a while. I didn’t wake numerous times. I fell asleep and I stayed alseep.

Race Day

6am alarm. 2 slices of toast a mouthful of cereal forced down. Everyone at breakfast all there that early for the same reason. We’re all about to undertake 26.2 miles on the streets of London. And just like that, we’re off towards Brixton tube station.

Before I even know what’s going on I’m in Greenwich. Walking along Greenwich High Road, a road I know well, on my way to the park. Suddenly I remember why I love races. We’re all in this together. There’s a great sense of expectation. The sun is shining. JP walks me all the way up to the entrance of the race pens and I realise, I don’t feel scared. I don’t feel nervous. I am excited. I know I can do this. I know at some point later that day I will have done it.

I met up with a lot of fellow Team A runners and there’s a great sense that we really are a team. I’m not the only one running this with arthritis and that’s reassuring. A quick trip to the toilet for a last minute wee and I’m off to my pen. I put in such a slow estimated finish time I’m in the last pen with the fancy dressers. It’s not even 10am yet but it is absolutely scorching. As I do though, I get talking to everyone around me. We all share that same feeling of the unknown, not knowing what’s ahead of us, but we all know we’re gonna take our time to make sure we get round safely. Chat turns to training. How far did you go? People start to sound worried when they share that their longest run was only 19 miles. 16 miles. I say “I’ll make you laugh, my longest run was 6 miles”. Cue laughter from everyone, a chorus of “yes that does make me feel better”, before they realise. I’m telling the truth. Yet at this particular moment, just minutes away from The Queen pressing the start button, I know I am ready.

ANDDDDD WE’RE OFF.

Only I’m not. And it will take something near to 53 minutes before I cross the start line (I wasn’t joking when I said I was at the back).

“Whatever you do. Don’t set off fast. It’s slightly downhill, it’ll catch you out. Pace yourself”

I’m running. I’m running the London Marathon. Oh and I’m walking. I’m walking the London Marathon. I am here. I am doing this. This doesn’t seem real.

I’m passed by Mr Bump. A full pack of Pink Lady Apples. A man with an inflatable T-Rex suit on. A dalek, complete with sound effects. 3 rhinos.

People passing me gently squeeze my arm. They’ve read the message on my shirt, they tell me I’m inspirational, I’m so brave, that I am amazing.

At mile 3, the shirt did something I never expected it to do. A man ran up to me and told me he too had arthritis. We get chatting (honestly, I can’t stop talking) and he asks if he can run with me. And so, for the next 8 miles, Phil becomes my new best marathon friend. He realises pretty early on that I am very bossy, but he’s too kind to say anything. I try to pass this off as being some kind of motivational runner. But really. I just love the sound of my own voice.

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When we passed the Cutty Sark, I knew that I was about to see JP. I see him and off I sprint. We hug, I start to have a few tears. I take a terrible selfie that will never see the light of day, and off I go to the Arthritis Research cheer squad a few yards up. I make a very literal song and dance about this, twirling my way up to them. And off I go again.

And then I see her. Rachel. My Sister. I didn’t expect to see her for another 7 miles. And so begin the waterworks. I literally cannot stop crying (if you zoom in you can see a single solitary tear dripping down my cheek. I assume the others quickly evaporated in the heat.)

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But the marathon waits for no cry baby so off I go again. Come on Phil, we got this! The heat increases. By this point I’m pretty sure Mo Farah has finished. A friend of Phils lives at mile 8. He comes out to see us with bottles of frozen water. I’ve never known true love quite like a bottle of frozen water against the back of my neck. At mile 11, I don’t quite know what happens. I am running followed by walking, and I turn around, and Phil has gone. I don’t know where has gone. I feel really very bad but I have to keep on going.

The crowd deserve a very special mention at this point. Along the entire course people of all nationalities, ethnicities, religions, sexuality, walk of life and more were all united by the marathon. When water was scarce on the course (which was alarmingly frequent) people were attaching hose pipes to their kitchen sinks to fill our bottles. Running out with jugs to top us up. People offering us suncream. Ice lollies. Sweets and food. So many people cheering us on by name, having some banter. They were unwavering in their support.

Half Way

Tower Bridge. That wonderful London icon. This is the point where most people get emotional. Not me. I didn’t see what the fuss was about. The thing about Tower Bridge is that it is best admired from another bridge. But hey, I ran it. It was cool.

I cross the half way point. I am now in completely uncharted territory, having never run above 13.1 miles before. But I feel very, very good. I know at about 14 miles to expect JP, Rachel and her boyfriend James, and this keeps me going. Like a mirage on the distance, I see them.

More tears. We all agree I look fantastic. If not slightly sweaty. I mutter the words “I FEEL GREAT” and off I go. I will regret this statement in just 3 miles time.

Mile 17. The right knee starts to hurt. Like, really hurt. I am by this point doing a lot more walking than I am running. People around me are dropping like flies in the heat. Canary Wharf. Now THAT sets off the waterworks. A building I so closely relate to my childhood (I don’t know why either so don’t ask) but running towards that magnificent beast really got me emotional. But still the knee hurts. I have to keep going. 20 miles. The pain gets worse. But I have to keep going. Go forward, go forward, on to glory!

At mile 21, the cheer squad has increased one, by the arrival of Max, who’s birthday it happened to be. Max has been my dearest friend since we met at university almost 10 years ago and I love him to bits. Somehow a sign has appeared! Wow! They made me a sign!! I will learn afterwards that they found this sign discarded on the ground, but as I happen to be Miss Becca, they took the sign as a sign they were meant to find it. More tears. I have lost so much fluid through both sweat and tears.

The Knee

I don’t know how I do it, but I find myself at 24 miles. Time has gone alarmingly quickly. And then it happens. The knee. It twists. I want to cry out. I want to be sick from pain. But I can’t. I am within touching distance of the finish now, I have to keep moving. It all becomes a blur from here on. I spend about a mile walking with a fellow Team A runner Hazel who fills me with the encouragement I need to keep hobbling.

25 miles.

Buckingham Palace. The cheer squad for the final time. A tap on the shoulder from a fellow runner. “I have arthritis too, I just want to say I love your shirt.” We get talking. 400 meters to go. I tell her I have to run this part. I have to run across that line. I do.

I cross that line.

I completed the marathon.

The girl I just met also crosses the line. She cries. I cry. I ask if I can hug her and she says yes. We realise at this moment we ‘know’ each other through a facebook group for young people with arthritis ‘Arthurs Place’. Frederica. Rheumatoid arthritis warrior. We had connected for the first time the day before, and by the powers of the universe, we ended up crossing the line at the exact same time.

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And off I hobble to St James’ Park to meet the squad. I can’t support any weight on my right leg now. It is a buckling mess. I realise at this point that my complete lack of distance training was the best thing I could have done. Or not done as the case may be. If I’d have done 20 miles in training, there’s a high chance my knee would have gone and I wouldn’t have been able to take part. See. Always method to my madness.

The real tears start. The uncontrollable sobbing. I am OVERWHELMED by messages from people. Friends old and new. Strangers. Work colleagues. Long lost loves and worst enemies. There isn’t a single person who at that moment in time I don’t hear from. I am lost for words. I was told I would never run again and I just completed the marathon. I phone my beloved Mum, who hears me cry out the words that I did it. Cool as anything she simply says “Well done, I knew you would do it”, and she did. I can never admit to her that she was right, but she was.

I can’t stand up. I can’t walk. I have to be supported pretty heavily with a person either side of me. But it’s ok. I can take this pain. This is a pain I never thought I would experience. A pain that tells me I achieved the unachievable.

It occurs to me that I haven’t had a wee in over 7 hours (we’re all friends here). This is probably the longest time in my entire life I have gone without. I am affectionately known as wee-wee head, due to my drinking 4 liters (minimum) of water every day. It will take me about 6 days to properly re-hydrate myself again. It will take me a week to truly appreciate what I have achieved.

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The Aftermath

And just like that. It’s done.

I promised the world that I would never run another marathon.

I instantly take it back.

I want to do it all over again. Not at that very moment admittedly. But next year. Every year my body will allow me. I’m going to run it again.

Best marathon friend forever Phil reaches out to me on facebook. I am overjoyed. We both survived the greatest test we’d ever faced and made a friend in the process.

The next few days pass in a haze. My knee is very bad, and even now, is still excruciating, but I have that same naive belief it will get better. I returned to work to be met with high praise and admiration, even by those who doubted I would do it beforehand. The sponsorship money rolls in. The support makes me emotional again.

Whilst I am no longer an official Team A member, my work with Arthritis Research UK is hopefully not finished. Ive been trying to convince them to put me in TV advert so that the world can see my beautiful face. I’m not sure if they think I’m joking…..

The Future

If you have made it this far, I salute you.

In a few days time I am back in hospital for toe surgery. No running for a few months. The next challenge is The Great North Run in September. Given how good I am at just winging it, I probably won’t start training until the day before.

I still don’t think what I have achieved has fully hit me yet. I don’t know when the reality will hit me. It’s coming in drips, but the enormity of it is still to come.

My marathon of 26.2 miles might not be everyone’s marathon. Just walking 500 meters will feel like the same achievement for other people. But two years ago, and even a year ago, I lost that belief that I could do this. I never thought I would do it. I gave up. In my lowest moments I never saw this day happening. And whilst I’m not saying that everyone has a marathon in them, I do know that arthritis doesn’t have to rob you of everything. I want to tell you all that there will be better days. That those hopes and dreams you feel have been taken from you are still there to be yours. Never, ever stop believing like I did.

Final Thoughts

Of all the photos that got taken through the day, this one is possibly my favourite. Sure we might be looking in different directions, but I can feel the love between us. I honestly wouldn’t share wearing a medal with anybody else.

If you have a sibling who you don’t look particularly similar to, take some comfort from the fact that despite having no resemblance to the other, Rachel and I are in fact 100% full sisters.  She, tall and willowy with curves in all the right places, a delicate bone structure and a figure to die for. Me, short, stumpy, big round face, body of a pre-pubescent boy, the spitting image of our Chinese Grandad when he was 60 years old.

But she is my squishy. My number one supporter. She will be well chuffed that I’ve written about her.

Thanks Squish. I love you.

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The 5 Things I Want Others to Know About Living With Arthritis

The Easter weekend is here!

Although I’m not that excited as I’m working both today and Monday because I’m all about the money and I’m not allowed chocolate cos my body continues to reject a growing number of foods. JOYOUS!

On Wednesday I was asked:

“What’s the one thing you want other people to know about living with arthritis?”

One thing? THE ONE THING? I have so many things I’m legitimately tempted to jot it all down in a novel.

Where does one even begin with that?

Turns out, I had no idea where to begin with that. So I threw it open to the wonderful internet to try to gauge what the most popular ‘one things’ were. Turns out, we all have thousands of things we want the world to know.

So, being someone with a total disregard for rules (sorry Police Officer Parents, it’s nothing personal) , I decided to narrow it down and submit 5 things.

So ladies and gentlemen, today I present to you:

The (simplified) 5 things I wish people knew about living with arthritis

  1. That arthritis doesn’t just affect old people. I was 27 when I developed and was diagnosed with Psoriatic Arthritis, which isn’t particularly young (e.g. infants can suffer from JIA) but I still had a hard time convincing those around me that yes it was arthritis and that no I wasn’t too young. If I had a pound for every time someone said, “Nah, you’re wrong, it’s not arthritis, you’re too young”, I’d be a millionaire.
  2. That there are numerous types of arthritis. My type, psoriatic, is not osteoarthritis, which tends to be what people think of first. It’s not wear and tear in my case, but autoimmune. This leads nicely in to point one as well, associating arthritis (especially osteo), with being something that only old people have.
  3. There is more to it than ‘just’ sore and swollen joints. Fatigue is a very real and very debilitating associated side effect, and can impact on every part of your life. Having to lie down out of exhaustion after doing something as ‘simple’ as brushing my teeth has happened to me.
  4. That people who live with arthritis look like everyone else. That you can’t tell just by looking at someone how much pain they may be suffering. The joys of having a relatively invisible illness!
  5. “But you were ok yesterday” is not something anybody with arthritis wants to hear. Sure I was ok yesterday, but since then I’ve flared up. A flare occurs when symptoms of a disease that has been present for a time suddenly worsen. I don’t know if or when I’m going to flare, there’s no rhyme or reason to why it happens. So thanks for noticing I was ok yesterday, now notice than I’m not ok today and let’s move on.

Now with the benefit of hindsight I wish I’d also mentioned how nothing I did caused this. “If you’d never drunk milk this wouldn’t have happened to you” is a personal fave, closely followed by “If you become vegan now, you can reverse it”.

Despite submitting the piece, I am still unsure what my number one thing is. So many different points link in to each other it’s hard to tell where one point ends and another begins. As I sadly continue to age I feel that the age point becomes less relevant to me (damn you the passing of time!) although at my time of diagnosis it was probably the biggest difficulty I faced when telling people.

So. What is the one thing you want to tell people about living with arthritis? How many thousands of things do you have to say!

 

 

 

Psoriasis Update

I meant to post this about 5 weeks ago but I clearly didn’t. I don’t really have any kind of excuse why. Apart from I was probably napping and life got in the way I suppose.

I’ve been super poorly with 5 bouts of sinusitis in 5 weeks, which let me tell you is bloody miserable. I would be fine and dandy and then literally out of nowhere, I felt full of ‘cold’ symptoms, but without actually feeling like I had a cold. A few sporadic days off work. And then, as quickly as the symptoms came on, they’d disappear again. Only to return just a few days later. Repeat for 5 weeks in a row. One day life is going to give me a break.

I also went to Iceland for 4 days which was good because holidays are my favourite thing in the whole wide world. Saw some waterfalls. Saw some volcanoes. Suffered from sniffly sinusitis. Saw some more waterfalls. Also saw the Northern Lights though which was pretty super. Another thing to tick off my 30 things before 30 bucket list.

 

Although if anybody reading this has been to Iceland when in an arthritis flare can you please let me know your experiences because my impression of it from a disabled point of view, Reykjavik especially, was not positive and this was reinforced when I was speaking to a woman in a wheelchair who seemingly had had a terrible time of it. So I would be genuinely curious to know what others thought of it.

I also started running again and training for the dreaded marathon. 33 days to go FYI. Link to why I’m running is below:

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?pageId=823987

Anyway, I digress.

I started writing this post when I was scrolling through instagram, and noticed quite a few of the accounts I follow had posted that a lot of photos tagged #getyourskinout had been removed due to them violating the community guidelines.

There is nothing about these photos that breaks the rules. They are often very personal photos, posted with immense courage by people who might otherwise be too embarrassed to share with the world just what their psoriasis looks like.

For the record, I have never once been embarrassed of my psoriasis. Sure, I hated it with a passion (mainly my scalp) but I never hid it away. I went on hot holidays and got my skin out in swimwear. Bare legs. Bare arms. I often wore sleeveless shirts to work without a care in the world. I was often praised for this, which whilst I appreciated (receiving compliments is second only to my love of holidays) I also felt baffled by because there should be nothing to compliment. It’s just arms.

So back on whatever day I first drafted this post, I decided to reshare a photo of my legs, covered in guttate (caused by sulfasalazine, but that’s a whole ‘nuther blog post), alongside a photo of my legs as they are now. My legs (and scalp, and arms, and tummy, and boobs and bum and face and well, ALL OF ME)  have been completely changed by cosentyx. No psoriasis. A wee bit of scarring but who cares. I certainly don’t.

I wish I had taken more photos of my psoriasis in the days and weeks after I started cosentyx, but it really did happen so rapidly it was too overwhelming. I think I have been completely clear for 5 months now. I still sometimes gaze down at my arms to check how bad they are only to be met by clear, soft, skin. I still occasionally scratch my scalp, expecting to feel something, almost wanting to feel, scratch and remove the plaques, and I’m still baffled that there is nothing there. Having my first haircut psoriasis free made me cry. That was how much of a big deal it was. I sat in the hairdressing chair and I was so overwhelmed by what was happening all there was to do was cry and hope that my muffled words of “just a trim please” was not swallowed up by tears. Thankfully I didn’t turn out bald so she must have got my drift.

Enough bumbling on from me. Spring has almost sprung. The days are getting brighter. I am looking forward to a great week ahead, finishing it off with a few days in Edinburgh where I am hopeful I will be able to do something that I love that I haven’t done in almost 2 years……dance.

To be continued.

Hospital Anxiety

I hate hospitals.

I hate going to them even more.

I hate not knowing what I’m going to hear. Not knowing if I’ve gotten progressively worse. Not knowing what to expect. Not knowing if I’m going to see the nice side of my specialist or the nasty side. Not knowing if I’ll cry. Not knowing if I should go alone or if I should take support. Not knowing what’s to come.

I hate everything about them.

So if you couldn’t tell where this post was going…today I had my first appointment with my specialist since I started cosentyx.

I spent the day at work writing, then re-writing, lists of the positives and the negatives. Scared that I’ll forget something, that I’ll retreat in to my shell and panic and not know what to tell him.

Positives

  • Clear skin
  • Less stiffness
  • More dexterity in some fingers
  • Almost walking normally
  • Fatigue levels manageable
  • Green light from orthopaedics about having my toes straightened
  • 5 toes have had work on them in minor surgery, just the 5 to go.

Negatives

  • Perpetually full of cold
  • Ankle continuously swollen
  • Knee becoming swollen
  • Some fingers still so bad I swear they’d feel better broken in two
  • An elbow that has started to refuse to move
  • Anti-inflammatories not working
  • Orthopaedics will only operate on me when I can prove that my symptoms are under control. Which they’re not.

Do I go alone? I’ve always found my specialist was less of an asshole when I went alone. But if I go alone I’m liable to forget most of the things he tells me. If I take someone with me, then at least that person can listen and give their opinion on how the appointment went afterwards and tell me any key points that I might have missed. But on each occasion I have taken someone with me, Dr Evil has been vile and I’ve ended up in a heap of tears every time. What if I have to go for testing and x-rays and all manner of procedures and I’m by myself? If I ask for support, does that make me weak? If I expect support to be given without asking, am I being needy?

So I went alone. Not least because it’s a logistical nightmare trying to leave work without leaving too early and then picking up my hospital buddy and driving there and getting parked and oy the struggles. But also because each time I go alone I get a little stronger. At least this is what I tell myself. I am an adult. Adults do things alone. Adults don’t always have the support that they might want. Adults can go to appointments by themselves and cope.

But adulting is very hard.

I spend far longer worrying about how the appointment will go, and what the potential outcomes of each imagined situation will be than in the actual appointment itself. I spend too much time worrying that I’m not sick enough to warrant the attention. That maybe the symptoms are still in my head as he made me believe for so long. That maybe those fleeting, infrequent new symptoms are the M.S I’ve been warned about. That it could also be fibromyalgia. That my inability at the moment to process food is caused by more than just a psychological worry. That maybe I am the problem. That maybe there are lots of problems.

I worry immensely about that dreaded weigh in. As someone who has always had problems with body image and weight, getting told what I weigh is hard going. I don’t weigh myself. If I don’t know how much I weigh, I can’t obsess about it and adjust what I eat, or don’t eat, accordingly.

But I keep those worries to myself. I’ve been told off one too many times at the hospital for talking about things my specialist doesn’t care about. That numbness in your hand? Not interested. The fact that sometimes you can’t remember how to spell your own name? Definitely not interested.

The appointment today?

It went….well. Although the nurse didn’t listen to me when I asked her not to tell me what I weigh. I am officially the heaviest I have ever been. This is hard to deal with and will take some strength to not act on. Like Ross Geller in Friends before me, when asked how much he weighs “I’d prefer not to answer that right now, I’m carrying a little holiday weight”.

I have the green light for surgery. It took a lot of strength not to cry at hearing this.

My inflammation levels are no longer alarmingly high. Just high. Which is good. Increase some meds and it should continue to subside.

“Keep going as you are, I’ll see you in 6 months….You even look like you’re doing very well Rebecca”. Words I never thought I’d hear him say to me. My specialist was almost nice to me.

The anxiety has gone…for now. Only to reappear when the next appointment letter comes through my door I am sure.

But right now?

My bags are packed. My flights are booked. I’m going home for a few days to put my worries behind me. To spend some well deserved time with my Sister. To give my city, the city that made me, the love it deserves. To spend a few days being me. Just me.