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.

IMG_1839

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.

 

Big Birthday Incoming

30

Thirty

Dertig

Dreißig

Trenta

Trente

שְׁלֹשִׁים

No matter how I try to dress it up. 30 is happening. Two weeks today is my thirtieth birthday. Or in my dodgy estuary English accent, firty. Turning 33 will be a linguistic nightmare.

I’ve been thinking a lot about what this birthday means to me, if it means anything at all. It’s drilled in to us that turning 30 is a big deal. It’s a big birthday. But why? What will I be on the 10th July that I wasn’t on the 9th?

Is it because we’re programmed to think that 30 is the age at which one is properly an adult? That we’re supposed to have our shit together by 30? House in the suburbs, married, kids and a golden retriever?

Times change. Most of my friends don’t have children. In fact, looking at my closest circle, none of them have children. Those in relationships are in no hurry to get married. Choosing instead to enjoy hard-earned money on holidays and experiences. Singletons in no rush to settle down. I fell feet first in to my career but even if I hadn’t, I’m still young enough to start afresh and find something.

As for me. I don’t have children. I’m in no rush to have any, if any at all. I was asked recently by a woman at work, in a room full tired, stressed looking parents, what my secret was to looking young. Not having children, I joyfully chirped back. That and glycolic acid.

JP and I have been together just over 6 years now. We only lived together for the first-time last year when we purchased our flat. We clearly like to take our time with these things.

I don’t feel any pressure to do any of these things. Thankful to come from a family and be part of an extended family who put no pressure on us. No asking “when are you giving us a grandchild?” or other such questions that should never be asked.

I’m approaching 30 with my shit together. On paper at least

So why is 30 still such a big age? Why do I still feel like it’s supposed to be a turning point? Am I to wake up on my birthday and find I’m suddenly an adult? I doubt it, I’m going to be waking up at the happiest place on earth, Disneyland, where I can continue to live a Peter Pan existence.

What the thought of turning 30 has done for me though is that it’s made me question everything. The status quo and that’s never a bad thing.

I am deeply unhappy living in Aberdeen. What was supposed to be me living here for the 4 years it took me to gain my degree, turned in to me dropping out of Uni and now approaching 10 years here. I’ve put up with this without question for so long but now? Nah. Life’s too short to put up with this. So we’re working out where to go, what to do, when to make the move. I’ve always wanted to dye my hair some ludicrously unnatural colour, like pink. So guess what? A week after my birthday I’m starting the process to lighten my hair and will hopefully get my wish by the end of the year. Whilst fortunate that it pays well, I don’t enjoy my job. And my current questioning of the status quo has raised the question of am I happy to stick with my job? Is money everything? No. And no, but it helps. So I’m starting to think about dropping to part time, to give me the time to do something I enjoy. I’m a great believer that everyone has a marathon and a novel in them. I’ve done the marathon, so…? Questioning the status quo is always a good thing, but sometimes it takes something like a ‘milestone’ birthday to bring it about. So I will thank 30 for giving me the kick up the bum to get myself in to gear.

But 30 no longer feels like a milestone birthday in terms of achievements.

From speaking with friends and extensive research (ok, ok, I used google once), I’ve come to the conclusion that turning 30 is now more likely to be a time when people question the existential as opposed to the physical. What is my purpose as opposed to when will I pop a kid out. Questioning the norm. Termed the midilife crisis. Although if my arthritis and health continues to go on the way it is, it could well be a mid-life crisis.

Questioning who I am and the world around me is something that has been happening since I first got sick 2 years ago. My tolerance for bullshit, already incredibly low, became even lower. I suddenly didn’t have the time or the energy to listen to or engage with petty people and what they had to say. Living in Aberdeen I’m surrounded by the oil and gas industry, and am guilty of being part of it myself. Oil and gas has given a lot of people (perhaps not deservingly so) an awful lot of money. I work in an office of people who love nothing more than to show off with, especially with their cars. In work, in agony, close to tears, I shouldn’t have to listen to imbeciles whinging, close to a nervous breakdown, distraught about how a seagull pooped on their freshly cleaned car. Like seriously, get a fucking grip and stop being so pathetic. Some people have actual real problems. It doesn’t make me angry, in spite of how it reads, it just baffles me how people get so wound up about something that doesn’t even deserve a second of thought. Whereas before I perhaps would have listened, hmmed in all the right places and made appropriate facial expressions, now I just mutter something like ‘not good’ before proudly remarking that I’ve never washed my car because it’ll rain soon enough and that’ll wash it away. This is something that I’ll be taking in to my 30s with me. My zero tolerance for bullshit.

I’ve also developed zero tolerance for fakery. Fakery of myself even. I no longer feel the need to try and be something that I’m not, both physically and personally. Sure, I’m packing more pounds of weight that I’m currently comfortable with, but I feel so much less pressure to look a certain way the older I get. I’d always read it’d happen, you know when people asked to give advice to their 18 year old self, usually it’s “you’re not as fat as you think you are” but I’ve never really related to it until now. Christ, I thought I was enormous in my teens and early twenties. I developed an unhealthy relationship with both my body and food, despite weighing less than 110lbs. Always thinking people wouldn’t like me if I was fat. I’m a good 40lbs heavier than that now but you know what? I don’t hate myself and I actually think there are people out there who like me, just the way I am (feeling like Bridget Jones with that one). Hell, I even have a man who loves me no matter what. Who would never dream of putting me down, and who supports me when I try to eat healthier and move a little more. Even if he does encourage me to have that portion of sticky toffee pudding when I probably shouldn’t. (Jack, if you do ever read this, thanks for introducing me to sticky toffee pudding. Let’s go to Marks and Spencer and get some).

In my early twenties I wore clothes because I thought it was what I was supposed to wear. My go-to outfit for a night out would literally involve me wearing nothing more than a pair of knickers and a bra. Any photographic evidence that I have of this, and believe me, there is a lot, won’t be making an appearance here. But I no longer feel the need to fit in. I’m not somebody who will ever look traditionally sexy. I am cute and I am proud. I don’t wear jeans. I don’t know how to wear denim full stop, which seems to be the staple wardrobe of so many people. If I wanna wear Disney sweatshirts and animal print dresses then I’m going to. And I do. And I don’t care. I remember years ago reading in a magazine that women over the age of about 25 (I think) shouldn’t wear glittery nail polish. And I don’t know why but that’s stayed with me all those years. I love glittery nail polish. Why should I give it up at a certain age? For the record, I haven’t and I won’t. I always have glittery nails and will until the day I do. In the 10 or so years since I read that article I am at least grateful and thankful to be part of a generation who are sticking two figures up to the old established ‘rules.’ I’ll wear what makes me happy. It won’t please everyone, but these tend to be the same people crying because there’s a seagull within 200ft of the car, so their opinion is irrelevant. Life is too short to pretend to be something that you’re not. If my Instagram feed is anything to go by, everyone I know has recently been to see either Ed Sheeran or Beyonce. In years gone by I’ve listened to Beyonce (I WAS PROBABLY DRUNK OK) but I no longer need to pretend that I fit in. I’d rather eat dirt than listen to either of them. And that’s ok.

When I google turning 30, the internet is full or articles telling people (women I assume, I’m yet to meet a man having a breakdown over turning 30 or one jittery enough to google it) what they should be doing and what they should have.

A personal fave is from the Huffington Post, ’12 Financial Goals You Should Reach by Your 30s”.

“Your 30s are meant for building wealth, not digging your way out of debt” it proclaims. Actually, my 30s are going to be about taking even more foreign holidays than I already do (although admittedly I have no personal debt) and I’m always going to prioritise holidays over saving. I’m particularly enjoying point 2, “No more student debt”. Hey Huff Post, I checked my student debt amount a week ago and I still owe Student Loans England £14,000, despite the fact I pay a lot of money each month towards clearing the balance. So guess what Huff Post? Fuck you and your stupid rules. I’m going to be entering my 60s and still have student debt and I’m not going to care at all.

I guess that I’m going to be entering my 30s content with who I am but perhaps not quite so content with my surroundings. Still got some toxic people to say goodbye to, maybe a more enjoyable and fulfilling job to find. But I’m no longer sweating the small stuff (GOD I sound exactly like my Mother).

If you’ve made it this far then I salute you, but out of curiosity, what’s the one thing you’d like to go back and tell yourself?

I’ve written before about ‘Always Wear Sunscreen’ by Mary Schmich, immortalised into a song by Baz Luhrman, and I’m going to leave you with the lyrics posted here in

 

MIA. My Self Esteem.

 

Self-esteem

[self-i-steem-]

Noun

  1. A realistic respect for or favourable impression of oneself; self-respect.

Has anybody seen my self-esteem?

Last seen around July 2016.

Belonged to a girl about 5’6”, size 8, usually wearing a cute dress, full fringe, lashings of black eyeliner and generally happy looking.

No?

No, I’ve not seen her either. She’s been missing for a while now.

When self-esteem disappears, where does it go? Is it gradual? Or is it there one day and gone the next?

I can pinpoint why mine started to disappeared. It went when my toes started to deform. When toes are bent due to dactylitis, like mine are, shoes don’t fit. Initially I could still wear a variety of flat shoes and boots. Loafers, sneakers, pretty pumps, these kinds of things. Shoes that I would happily wear with dresses. But as my toes started to become worse, I could no longer wear these shoes. A brand-new pair of Adidas Gazelles, bought in April 2016, didn’t fit by the June. My beloved and battered Fred Perry pumps were so tight on my new feet they would bring me to tears. I had no choice but to buy skechers. A brand and a shoe type I wouldn’t have given a second thought about before. But now they were the only thing that would fit (aside from my running trainers, but I was far too much of an emotional wreck initially to wear anything that reminded me of running). So, with black flat chunky skechers, suddenly my style changed.

My vast array of dresses got put to the back of the wardrobe. Why? Because not only was it easier and less painful to wear trousers and not tights (I live in NE Scotland after all, bare legs are for the foolish), I simply didn’t have any shoes to wear with them. Everything I wore suddenly revolved around the same, elasticated pair of black trousers, which I am still wearing today. Shirts for work, sweaters for home. Repeat until the end of time. My style of dress, which I so closely associated with my sense of femininity changed overnight.

All of my shoes and boots that didn’t fit got put in to the attic. I.e., every singly pair. If I couldn’t see them, they couldn’t make me cry. I have on many occasions walked in to a shop and gone to try shoes on. Believing that one pair will fit. Maybe a wide fit pair of pretty ballerinas? A pair of sandals for holiday? The answer every time is no. I have cried in shops more times than I care to admit to. So truly upset that not only do shoes not fit, that the majority of people would have no idea why. That when I say to people how upsetting it is, that they think I’m being petty.

But it wasn’t just how I dressed that changed. My style generally became more relaxed. And with that, so did my approach to personal care. I no longer wore my contact lenses, opting instead to wear my glasses because it meant that I didn’t have to bother wearing make-up and could just hide behind them. I stopped having my fringe cut in, choosing instead just to scrape my hair back every day. All of this coupled with a two-stone weight gain has led me to barely recognising myself anymore. The irony being that I had higher self esteem when I was covered head to toe in psoriasis.

75e08f7b-8e91-446b-8026-0f8e74fb2e9a-1

Same person but two very different people. Just 2 and a bit years apart, but worlds apart. (*must not cry looking at photo 1*)

Why should I make an effort? I wasn’t worth any effort. I’m still not sure how much of me is worth an effort.

Put simply.

My self-esteem became pretty darn low.

But why has my physical appearance had such an impact on my all-round self-esteem? Is it really a reason why I retreat further and further in to my shell with each passing month?

Why is my self-esteem so closely linked to how I look? If I had never had arthritis would I have continued to care for my appearance and I would have still had great self-esteem? Is it as easy as that?

I have my fair share of faults and flaws but I like to think as a person I’m pretty ok. I’m kind (although don’t tell anybody this, I have a reputation to uphold), I’m fairly affable and I like to think I’m the funniest person most people will ever meet.

Yet when I think of my own self-esteem I don’t think of these things, I see only what I perceive as negatives. Shy, reserved, fewer friends than I have unbent toes, a constant feeling of being left behind in life which surely must be my fault. Never feeling good enough, always feeling a burden. One of the biggest problems for me is a constant need for reassurance. I can never do things right. I spend most of my time locked away in my flat, not having the confidence to do anything. On a Monday morning, work colleagues no longer ask what I did at the weekend because they already know the answer.

One of my most favourite people in the entire world has a cripplingly low self-esteem. I have tried on many occasions to tell him that I think he is awesome, but I know it’s not as easy as that. And if it was, why can I not listen to my own advice? Why can we never see ourselves through someone elses eyes?

I have a postcard at home (which will eventually be framed, probably when I get round to it in 45 years time) that says “Love yourself as your cat loves you” and this should be my new mantra because Mo adores me. She loves me when I’m happy, when I’m sad, when I haven’t washed my hair for 5 days, when I’m anxious and well, she loves me no matter what. Apart from when I refuse to give her an extra serving of dreamies.

The internet is awash with people advocating ‘self-care’ but how effective is self-care when self-esteem is so low? Especially when self-care varies so much from person to person. The internet is also a reason why people, and probably myself included to some extent, have such issues. I spend a good 90% of my time at work aimlessly scrolling through Instagram, seeing everybody else’s great lives, but we all know of course that this is merely what the person wants you to see.

I have no real conclusion to this entry. It’s still something that I am trying to get my head around. My arthritis has changed so much for me physically and it continues to change me as a person. It continues to challenge who I think I am, to question my own self-worth and happiness, it continues to push me to my limits. Even now, 7 months in to cosentyx, 7 months of living an almost ‘normal’ physical existence, why does my arthritis continue to have such a hold on me?

Please somebody else with chronic illness tell me that this will get better? Or if it doesn’t, please tell me I will be ok.

When did life become so difficult?

But, as always, it’s not all doom and gloom.

I am due, at some point in the future, to have the surgery to straighten my toes. But of the three toes that I desperately need doing, I have so far only been approved for surgery on the one. I am forever hopeful that my surgeon will give the green light to have all of them done at the same time. I won’t know until my final consultation if the operation will allow or prevent me from wearing heels ever again. But I’m honestly ok with not. I wasn’t a prolific wearer of them pre-arthritis, and really, I just want to wear some pretty flats. I never want to wear those black skechers to a wedding (least of all my own) ever again.

In fact, the first thing I’ll do post-surgery?

Burn the shoes.

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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Support Groups

I should start this post by saying that it is very much intended to be tongue in cheek and is based on my own observations, although I have no doubt that most of these are recognisable to anybody who’s a member of a health related facebook group.

Support groups have offered me just that. Support. I have only very briefly met one other psoriatic arthritis sufferer, an amazing guy called Paul who works at The Hydro in Glasgow, and who kindly moved my Mum and my seats for Black Sabbath to the accessible section when he saw that I was struggling up the one million stairs. Top Bloke. So support groups, linking people together when the otherwise may feel quite isolated is great.

They do however also drive me absolutely nuts at times.

So today I introduce to you:

The 5 People You Meet in Online Support Groups

  1. The Attention Seeker. This person posts things that are usually unrelated to any kind of health condition, and is probably the same person who posts on their personal facebook “OMG can’t believe it” What’s wrong? “Can’t say on here hun.”. They post a few times a day. Things like “OMG I can’t believe I forgot to put sugar in my tea today, what am I like”. Thanks so much for sharing with us all your truly terrible ordeal Susan, sending thoughts and hugs your way during this difficult time. These people are the ones that drive me the craziest and I block the worst, most annoying offenders.
  2. The ‘I have it worse’. Whilst this person does exist in the world of arthritis, in my personal experience, this type of person is the absolute worse when it comes to psoriasis. “You have like two tiny spots, 234674% of my body is covered”. These kinds of people. Can’t offer any kind of advice without telling you theirs is worse. I always find their comments quite spiteful and feel that they are both trying to undermine the original poster, and also win at life for having it the worst. They are the real life psoriasis version of The 4 Yorkshire Men from Monty Python. And I hate them. The people. Not Monty Python.
  3. The ‘I can’t be bothered to google’. These people are very closely related to The Attention Seeker, and they can be hard to tell apart, expect that this person tends to post more on topic. But posts about things that google, mediation information leaflets or you know, their doctor, could answer (but why do that when you can get attention online! See. Closely related). “I took 2 paracetamol this morning, can I take 2 more tonight?” “I’ve been struggling to breath and have tight chest pains and I coughed up a lung earlier, any ideas what it could be?”. Nah, no idea. You tried google?
  4. The Joker. The joke teller. The meme poster. Loves a quote of words posted on a picture of a Minion. Trying to keep the spirits of the group up when all we want to do is roll around in deep heat and cry. I applaud them for their optimism. But they still drive me nuts.
  5. The Superstar. The person who knows the right thing to say. Who knows the answer or knows where to point you in the right direction. Full of reassurances and level headed. Knows the best products to buy and try and what to avoid. Can always be relied on no matter what question you posed. Every group has a few and they also happen to be my favourite people in the group.

Special shout outs to the runners up.

  • The Childs Farm advocate. No the cream didn’t cure or clear your psoriasis. It’s just a moisturiser. I bet the Child’s Farm marketing team can retire now thanks to you all.
  • The cbd oil potential user. I think we’ve all seen enough to know that the one from Holland and Barrett tastes like poo. And no, it’s not good enough to help you.
  • The over-sharer. Shares every intimate detail of their life. Probably the same person who posts hundreds of daily photos of their toddler potty training on their personal facebook page.

Who have I missed out? I’m sure that there are probably 50 types of people you meet! Let me know who I’ve forgotten and who your favourite is!!

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!

 

 

 

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.

 

The Greatest Instrument You’ll Ever Own

“Enjoy your body
Use it every way you can
Don’t be afraid of it, or what other people think of it
It’s the greatest instrument you’ll ever own”

I sit here, at my work desk, listening to a song that I haven’t listened to in a very long time. A song that has stuck with me for nearly 20 years, Baz Luhrmann: Everybody’s Free (To Wear Sunscreen), the lyrics of which came from a 1997 column written by the journalist Mary Schmich.

I have had a life long love hate relationship with my body. Your body is one of these things you take for granted. We all do. It’s something you never really, truly appreciate until it’s not the same anymore. As with most girls, I wasn’t exactly a big fan of my body when I was in my teens. I have starved my body beyond any recognition. I have abused my body in more ways than I’m currently strong enough to admit. I have purposefully hurt myself. I would wake up in the morning and cry because of how I looked. Or how I perceived I looked. These negative thoughts came with me in to my early twenties.

It was only in my late twenties, when I was at healthy weight for the first time in my adult life when I really started to appreciate my body.  That I realised my body was, as the song suggests, the greatest instrument I’d ever own. It took me on long, hilly walks across the wild Scottish countryside. It took me around the country running. My legs travelling vast distances. My lungs and heart working overtime to keep me going. I’d never taken the time to thank my body for all that it allowed me to do, until it was too late.

Until my legs couldn’t move. Until I couldn’t put one foot in front of the other. Until even breathing took so much effort it would bring me to tears. When constant inactivity, coupled with the constant eating and the odd course of steroids would cause me to gain weight, I went back to hating my body. Self-care went from treating myself to a facial to remembering to brush my hair. I would bury my body under baggy clothes, so people couldn’t see me. I didn’t want people to look at me, trying to see the disfigured joints. Trying to see what was wrong with the girl who couldn’t lift her feet off the floor. The one who kept her head down and shuffled. Don’t look at me. Don’t look at this body.

My body had let me down. And only then, when I could no longer use it, did I realise how much I should have enjoyed my body when I had the chance. That I had been given a second chance of appreciating my body.

Now, I have a body that continues to react well to cosentx. A body that is about to take me to my 30th birthday.

I never, in my wildest dreams (or nightmares) imagined that at 30 years old, I would love my body. I never imagined that I would accept my little rolls of tummy fat. That I would wear a bikini and not give a damn how I looked. I never thought I would spend most of my days make up free. That I would no longer worry about what complete random strangers would think seeing me without a full face of make up. Even though they’d never see me again. That I would wear my glasses full time and not bother with contact lenses like I used to because I thought they made me look prettier. That I would actually LOVE myself with glasses. That the thought of wearing contact lenses would be horrifying. I never thought I would appreciate going for a short walk. That even that would be an accomplishment. That walking 100 meters would be great. Way to go body! You the best!

This creaky body has taken me around the world, to places I could only dream of visiting. It has taken me 13.1 miles around the Great North Run half marathon. It has taken me to weddings, to parties. It has taken me on road trips, on last minute trips abroad, without a care in the world. This creaky body has introduced me to me. This creaky body is about to take me on the greatest challenge I have ever tackled…..The London Marathon.

It took aggressive arthritis to teach me to love and appreciate my body. The irony.

I wish I could go back and tell my 14 year old self to love herself just the way she was. To tell her that at (almost) 30 years old, she would be not only content, but happy, with exactly how she is.

So remember, arthritis or chronic illness and all, your body really is the greatest instrument you’ll ever own. Thank if often for achieving the little things we take for granted. Don’t be hard on yourself. Don’t worry about other people. Celebrate every little achievement, no matter how small it may seem. You live your own life, and give yourself a pat on the back. You deserve it.

Rheumatology. Expectations vs Reality

Rheumatology Expectations vs Reality

2 days ago, I had my 4th rheumatology appointment.

It was a disaster.

Before I elaborate, let me give you a brief background.

On my initial appointment seeing Dr Evil in August 2016, I explained that my swollen toe was the first symptom I ever had of Psoriatic Arthritis. I said that initially I wasn’t too concerned, because I possibly stubbed it or maybe I had hurt it when I was running. In short, it wasn’t an alarming injury. He leapt on this and kept accusing me of admitting that I caused the injury to myself whilst running, which was not the case. His accusatory tone really annoyed me and my Mum, who I took to the appointment for support, had to calm me down and stop me from really shouting at him. Eventually, he conceded that it wasn’t a running injury and was PsA after all (WELL DUH). He threw me a leaflet for methotrexate, sat me on a bench in the corridor, and that was it.

Appointment number 2, December 2016. This time I take Boyfriend with me as moral support, and to see what he thinks of Dr Evil. What would happen is Dr Evil going out of his way to tell me that I have nothing wrong with my feet. The pain I feel is probably because I ‘walk funny’ (he went through how many years of medical school for that diagnosis?!) Only for me to read the letter he sent to my doctors surgery sometime later saying “severe tissue damage and inflammation in feet”. Which doesn’t tie in to when he fobbed me off. I was told to stop taking anti-inflammatories my doctor had prescribed me as they were giving a false reading.

Appointment number 3. April 2017. This time, I opt to go it alone. He was rude and dismissive in front of both my Mum and Boyfriend, maybe he’ll be different if I’m by myself? He was. Just. In what was the worlds quickest appointment, he asked to take a look at my psoriasis and my feet. Admitted that the methotrexate wasn’t working and that if my psoriasis hadn’t cleared up by my next appointment and my toes were still swollen, my medication would be changed. I was, however, told off for the fact that I had stopped taking anti-inflammatories even though this was exactly what I was told to do at my last appointment *sigh*.

Which leads me to appointment number 4, 2 days ago.

I decided to be big and brave and go it alone. I wrote up bullet points about everything that I was feeling and going on in my body since I saw him last. I knew I was going in to this appointment with the knowledge that my Doctor was concerned about my arthritis and more critically, my crippling fatigue, and my Nurse was increasingly horrified by my high levels of bruising, my inability to fight even simple infections and my constant dermatitis. My psoriasis not only didn’t improve over time, it actually became worse. I felt sick for 3-4 days after my increased methotrexate dose and the fatigue was impacting me worse than before. The swelling in my toes and right ankle still wasn’t controlled with either the mtx or the anti-inflammatories. I had a long list of new symptoms ranging from numbness in my hands that spread the length of my arm, to stiffness in my neck and shoulder so severe it would be hard not to vomit. Add to that, my psoriasis was now present in my fingernails as well as my toenails. In a nutshell, I wasn’t good.

The Expectation

I would sit in the chair, calmly, precisely and succinctly tell Dr Evil of my symptoms and how I have been feeling. He would take each one on board, remember what he said the last time about changing my meds, take a quick look at my psoriasis, go over the new medication options, and bid me a kind farewell.

The Reality

I was ignored, dismissed, argued with and humiliated.

I had hoped that the fact a student was in the room with him on this occasion would work to my favour, how wrong I was.

He started by asking how I was. I replied that instead of feeling better on 25 mg I didn’t, and I actually felt worse.

I have severe fatigue I explained. I no longer make it to my office on a Monday morning because I am a zombie. It is destroying me. My Doctor is increasingly concerned with how little energy I have, we’re hoping to get me off the mtx so I can go back to normal.

“Fatigue is nothing to do with your arthritis or the mtx. That doesn’t concern me”

(If you go on to Arthritis Research UK website aka the holy Bible on arthritis, you’ll see that fatigue is one of the more challenging symptoms and side effects I’ll have to deal with. Dr Evil is also Dr Liar).

He asked me to tell him where I hurt. I HATE this question. Where do I hurt? Sometimes I hurt in my toes, sometimes my knee hurts, other days my neck hurts. Sometimes I don’t hurt at all. What does the pain feel like? I HATE THIS QUESTION EVEN MORE. I don’t know. Having never been on fire I don’t know if it burns, tingles or whatever. It just hurts.

Put on the spot, I replied my left foot, but with a new, very prominent pain in my big toe on my right foot. So, it was straight on to the bed for me to have the ultrasound on my toes. No inflammation. Chronic dactylitis. Osteoarthritis in the big toe. Methotrexate is clearly working. Off you go.

Clearly working. Clearly working. Clearly working.

This was what pushed me over the edge. Clearly working. Stay on mtx.

At this point, I started to cry, pleading with him to take me off of mtx. I’ll refuse to take it I screamed. My tears fell harder, he threw a tissue at me and told me I couldn’t change meds because I only have arthritis in 3 toes and nowhere else (hahahahahahahahahaha best joke I’ve ever heard). What about my side effects? The pain? The stiffness and the swelling I am feeling? It isn’t real. It’s in your mind he replied. Maybe you only feel pain because you are depressed.  Depression is causing you to feel pain. Not arthritis. The pain isn’t real. Depression explains your problems. It you weren’t depressed, you would feel none of these ‘pains’. You only feel tired because of it.

For the record. I’m not depressed. I’m just fed up of hurting and a body getting worse, not better.

I won’t take it, I won’t I continue to scream. He left the room and returned with a leaflet. Sulfasalazine. Stop mtx and take this. You’ll take it daily. Wait in the corridor for the nurse to take your blood.

And that was it. Exactly the same outcome as my first appointment almost a year ago.

I sat on the bench and my tears turned to wails and my wails turned to uncontrollable emotion just pouring out of me. People passed me in the corridor and didn’t even stop. A slew of nurses walked by and ignored me. Dr Evil himself walked past me without a care in the world to get his next patient. I opened up my phone to use the selfie camera to see how bad my make up ran. I see now that I accidentally took a photo of myself. My face is etched with pain. I’ve just been dismissed, again. Accused of making problems up. My credibility is in tatters. Again.

The nurse came for me, sat me down, and asked me what was wrong. My tears fell harder. I managed to splutter that Dr Evil Liar didn’t believe me, he thinks I’m a fantasist, he says there is nothing wrong with me. She calmly stroked my arm, and told me everything would be ok. Don’t apologise for crying she said, I am just sorry that I cannot help you. She could tell I wasn’t making it up. She took my blood and got me a glass of water. She sat with me, silently, whilst I drank the water, making sure I was ok. And as I came to go, some 30 minutes later, she softly took my arm again, came close to me and said “You will be ok my darling”.

Well, all my hard work to stop crying went out of the window. Enter from stage left more tears!

I managed to drive home, tell my boss I couldn’t come in to work, and reflect on what had happened.

Positives: I did at least manage to get off mtx.

Negatives: Everything else.

For a split second, I began to wonder maybe I am making it up. Then I pulled myself together and realised, I’m not. I’m many things in this world, but I am not a fantasist.

So where to go from here?

I’m going to see my GP and explain to him how this god awful appointment went. I need to research my symptoms and ask for his help (though I hate this, what if it’s MS? Fibro? What if I’m dying? I can’t be trusted to look up symptoms).

I’m going to get a calm head on me again. I’m getting there. I’m no longer planning to make a voodoo doll of him, but I am going to through the procedure to change rheumatologist.

I’m going to embrace sulfasalazine with open arms and hope for the best. But expect the worst.

I’m going to need a few more early nights to sleep off my Kim Kardashian crying face. I’m almost there.

I’m going to eat copious amounts of donuts and not care.

I’m going to enjoy my first weekend without methotrexate.

I’m going to worry about what my body will do to itself in the down time between meds.

I’m going to look back at this appointment and laugh. To make it in to a chapter of my book. To tell stories to other people about how bad my treatment has been but to laugh at it.

I’m no longer going to have expectations about what my appointments will be like, what will happen and what the outcome will be. But I will be quite sure I’ll never have an appointment as bad as this ever again.

But mainly……

I’m going to find Karla, that wonderful nurse who took time out of her busy day to look after me, and apologise for pretty much blowing my nose in her hair mid cry.