“Hey lovely, I have a great business opportunity for you”

Is there anything worse than receiving unsolicited advice or messages?

I appreciate that often it probably comes from a good place. Somebody with experience, somebody who cares.

But increasingly the unsolicited messages I’ve been receiving are trying to lure me in to joining their business. Work from home! Earn more money than a job can give you! Have your own business!! Retire before the age of 30!!

These are legitimate messages that I have received in my inbox on Instagram recently. Doesn’t include the hundreds of messages I declined and deleted.

  • “Hi lovely, hope you don’t mind me messaging you but I’m currently expanding my beauty business. Are you interested in earning an extra income that fits around your current lifestyle?”

I do. You don’t have a business. You work for a pyramid scheme. I’m very rich.

  • “Hi, I hope you don’t mind the message. I was wondering how you would like to make some money and join my global business with the potential of starting your own!”

I do. I have more money than you honey. Pyramid scheme. Bye gurl.

  • “Hi Rebecca. Bit random but I recently started an online business selling beauty products on social media which has been great!! Get in touch!”

Pyramid scheme. It hasn’t been. No.

  • “I had a huge improvement with my scalp psoriasis after using Monat. I’m a believer. If you want more information let me know”

No you didn’t. You don’t even have scalp psoriasis. Monat is a pyramid scheme, you sell Monat. COINCIDENCE?

  • “I love working with ladies who I believe can help their life through the magical business I have. It’s not a job, but can give you more than any job can”

It’s a pyramid scheme. You’re not Harry Potter. I don’t want to alienate my friends so all you’re offering is a a life of loneliness.

  • “Hi Rebecca, I’m looking for likeminded business ladies to join my business. Would you be open to more information?”


  • “Hey Rebecca, I ran across your feed through a hashtag about arthritis and I had to reach out. I have to share that I’ve found something that has helped tons of my friends and family with arthritis and a myriad of other issues. If you want more info, message me”

Translates to “Hi Rebecca I hope you’re vulnerable enough to allow me to try to sell my miracle product to you. I can help people because I’m better than doctors and medication”

Let’s clear a few things up.

I receive HEAPS of messages from people suffering from psoriasis and psoriatic and rheumatoid arthritis, or just chronic illness in general who reach out to me to say hi, for medication advice or just to say they’re so glad to know that they’re not alone. I try to reply to every single message even though I’m not the best at replying and sometimes it takes me a while (read also – comments on Instagram in general, I so seldom reply to them and it’s not personal I promise. I’m just a lazy human being). These messages mean the world. I know how it feels when you’re suffering, feel alone or unsure of something, just to have someone to connect with.

But messages such as the ones above wind me up so much I become practically Hulk like.

They’re not businesses. You’ve not invented a new product or company. You are not Richard Branson. You’ve paid an upfront fee to an existing company to buy some moisturiser/poison juice that you now have to flog to whoever you can convince to part with their money because if you don’t, you end up even more out of pocket.

A quick click on the profile of any one of the people sending these messages and it’s easy to see what the real motive is. Not because they can help. Not because they want to help. Not from any place of goodness. But because they need to make sales and recruit people to their scheme and what better way than to contact some of the most vulnerable people. People more likely to either not be in steady work, people in part time work to accommodate their health or unable to work in general, so of course, messaging with the promise of lots of money!!!!!!!!!!!!!!!!!!!!!!!! must look pretty appealing. But don’t be fooled. Anybody who asks you to contact them for more info is only looking for business. You want to join one of these schemes, although as I’m told by EVERY.SINGLE.PERSON who sends these messages “It’s not a pyramid scheme” (yeah sure thing Jan), that’s your choice but don’t keep sending unsolicited messages to people trying to exploit them so you can make 5p commission.

These are people who look at health related instagram hashtags and then purposely target those they think they can take advantage of.

They are trying to exploit what they perceive as your vulnerabilities and they are the lowest of the low.


Rant over.



Surgery Part 2

Hey all!

Four days ago I had my second round of toe straightening, this time on my right foot. But unlike last time when I had toes two and three corrected, this time it was just toe two. Why did I get my toes straightened? Hammer toes.

What is a hammer toe I hear you ask?

“A hammer toe is a deformity that causes your toe to bend or curl downward instead of pointing forward. This deformity can affect any toe on your foot. It most often affects the second or third toe”

Hammer toes are often (although not always) associated with arthritis, which is what happened in my case. I’ve told the story many times before, but basically, my second toe on my left foot was my first arthritis symptom. It became rapidly very swollen and over a few months started to bend upwards, completely fusing at the joint. I affectionately call them my claws.

I was first referred to orthopaedics in December 2016, just six months after I developed arthritis. It would take a further year to have the initial appointment at the hospital, and another year before I would have the operation.

This time around, I only had to wait 9 months, due to already being ‘in the system’ and my surgeon himself bumping me up the list.

I saw my consultant at the beginning of June and it was agreed that the surgery would go ahead on August 30th. Admission at 7.15am (oh yay great joy early morning).

No food from 2.30am and no liquids from 6.30am. I struggle with this because a) I love to eat but mainly b) I drink a lot of water, probably a minimum of 5lt a day and I hate how I feel without water.

It was the same admission time first time around but I didn’t change for theatre until 3pm and I was so hungry I thought Bob Geldof was gonna burst in to the room at any moment and start a food appeal for me.

Hammer toe surgery is planned as a day case, but obviously you’re not allowed to drive and you need to have a responsible adult with you at all times (not sure why I took my Mum).

But this time, thankfully, I was dressed in my gown and found myself walking down to theatre at 9.30am.

First things first. Vital statistics taken. Very accurate.

“How tall are you?”

I dunno, maybe 5’5”?

“How much do you weigh?”

I dunno, roughly 11st?

“That’s good enough for me.”

Blood pressure great. Oxygen levels great. General health great.

Enter stage left, Colin, my anaesthetist.

I wasn’t worried about any part of the actual operation, but the anaesthetic part was what made me anxious. Last time I was given a sedative and a spinal (in my leg….so why is it called a spinal?) and to cut a long story short, I could still feel every part of my foot being prodded and sprayed and poked. So I was sedated again and given a general. When I came round I felt fine until I sat up and then couldn’t stop being sick for over 36 hours and had to spend the night on the ward and I remember feeling like I would honestly never feel well again. Especially as I’d never had a general before and had no idea if this was normal, or if this was how I was always going to be after one.

I explained my worries to Colin and he was baffled that someone gave me a spinal last time. He said that I would be given a general and then once I was out cold, he would inject my foot near the toes in three separate locations, completely numbing the foot. The idea being I would have no feeling in the foot for 24 hours and therefore no pain, negating the need for any painkillers (especially morphine) which definitely didn’t help me last time around.

The set up at Woodend hospital is different to the last time I was admitted, when I went straight to the ward. This time there was some kind of large waiting room with changing rooms. So once changed in to gowns, I was required to go back and sit on the waiting room chair, watching Judge Rinder like it was any other morning. It made me feel quite uncomfortable to be honest. I’m assured that this is normal, but still. I didn’t like it.

I also didn’t like the fact I had to walk myself down to the anaesthesia room. I felt a little like I was on death row walking to my lethal injection. Not helped by the fact that I wasn’t allowed to wear my glasses and as such was so disorientated, I had no idea where I was going. I was talking to nurses like I’d seen them before because they looked sort of similar to people I’d seen earlier in the morning, when truthfully, I’d never seen them before. All people look like blobs to me without glasses.

On to the bed. A few niceties about where we were all from (I’m from The Philippines, you? Somewhere just as exotic. Essex) and before I know it the mask went on, I was asked to do 4 deep breaths, I felt high as a kite and that was me.

I came round in the room at 11.04. I do not remember what I waffled on about this time but I did say to one of the nurses to check if the large spot on my cheek had gone? She lifted my oxygen mask, looked for a second and replied, nope. Still there.


I was wheeled to the ward at 12.15.

Where I promplty fell back asleep.

Until 2pm.

Where I woke for toast. Double toast. Plain.

And fell back asleep until 3pm.

What can I say. I was tired.

I also wore my oxygen mask as a very cute hat.

A nurse accompanied me to the toilet, I got back to the bed without feeling sick or dizzy and it was agreed that if I could dress myself I could be discharged. A DAY CASE AT LAST.

I dressed. I was wheeled to the car. And I was taken home.

All the fear and anxiety I had about the aftermath of the surgery gone just like that.

My foot, as Colin promised, was completely numb. And this was very, very strange. After hammer toe surgery you can only bear weight on your heel. Which is great an’ all, provided you can feel your heel. I couldn’t. I felt like I had a wooden block underneath my foot. I was very unsteady and had no idea if my foot was even on the ground, let alone what part of it.

Personally, I hate crutches. They really hurt my hands. I’m spending the first few weeks not bearing any weight on my heel at all, but keeping the foot off the ground, which is fine for now as I’m only in the flat.

After I arrived home, I got straight on to the sofa, petted my cat, had three bags of bbq beef hula hoops and had another nap. I woke up to a Chinese takeaway and could have eaten for 12 hours straight. I was famished.

No pain in the foot because I couldn’t feel anything. Propped up on 4 pillows. Like last time I’ll be sleeping and living on my sofa.

I woke the next morning with the foot gaining some feeling back. It was short bursts of burning pain. Nothing I couldn’t cope with. But gradually this pain increased. The toe was throbbing and worse, the pin felt like it was going to burst out of the top of my foot. I couldn’t medicate the pain away and spent the next two days feeling very sorry for myself.

But here I am four days on. The painkillers (dihydrocodine) seem to be working slightly better and the pin no longer feels like it’s gonna shoot out Alien style. I remain glued to the sofa, keeping the foot elevated for at least 22 hours a day. My Mum helped me to take a shallow bath yesterday, followed by a hair wash, and I feel like a whole new woman. I’m not planning to take another until Thursday so I’ll be smelling like stale milk again by then.

Foot itself feels ok. Much like it did before. I’m not aware that the pin is there, until I slightly catch it or knock it and then believe me, I am VERY aware of that inch of metal jutting out my toe. The bandages feel hot and itchy already but again, it’ll pass. The toe hasn’t been covered with any kind of gauze, this time just a clear film. So when I go to pull the (loose) bandage back, I can see the toe in all it’s very bloody glory. It’s not pretty. But I’m not freaked out by it. When I have my two week check up I’m going to ask to not have it re-dressed. Check up will be my first trip out of the house.

Sick line requested today for 6 weeks, with it likely to be extended for a further two.

So what to do for the next 6 weeks?

Firstly. Rest. Every little task becomes exhausting. I have been limiting my liquid intake because having to haul myself up to get to the toilet takes more energy than it is worth. The painkillers also add to this fatigue, so I’ll spend a lot of my days drifting in and out of sleep. Spending time with Mo, who hasn’t left my side.

I’m going to spend my time reading, watching bad tv and stitching. In a few weeks time my philosophy degree will start so I’ll use my time wisely to get my assignments done in ample time. I say this now but I bet it won’t happen.

I’m hoping to fly back to NL after about 4 weeks to spend some time with friends and that’s about it I think. Just resting, not overdoing it, and making the most of this time off as best as I can.

I woke up at 11am this morning feeling like I’d gone ten rounds with Tyson.

Mike. Not Fury.

Any books or tv show recommendations then please send them my way!!

Guess who’s back….back again

Hello much neglected blog,

I feel like I start every post with a ‘why I haven’t written anything in months’ introduction. As always, I have little excuse other than sheer laziness.

To summarise.

I turned 31. Although if anybody asks, I’m 29.

I took a much needed break to Liverpool and loved it so much I’m house hunting and job searching online as we speak. I took my Mum away to celebrate her (early) 60th birthday. Neither of us had ever been before and it was amazing. We started by going to Crewe to watch Crewe Alexandra v Plymouth Argyle (our team) in the opening game of the season and the lovely Alex gave Maw a wonderful halftime birthday shout out. And we won 3-0. Great day all round. Shame about Crewe but no day can be entirely perfect. Then on to Liverpool where we did everything Beatles related. I actually cried stood next to the Penny Lane road sign. And I don’t know why. I don’t even like the song. It was a week of tears because I went on to sob, violently, at the Museum of Liverpool at the John and Yoko exhibit and again, I don’t know why. John’s my 4th favourite Beatle. I wasn’t even hormonal. I was just an emotional wreck. As a lover of architecture, seeing the Royal Liver Building had me welling up. Trekked over to Port Sunlight to see a collection of Rembrandt (my favourite artist) sketches on loan from The Ashmolean and I was so moved by the sketch of him and his wife Saskia, a sketch I have read and studied so much about, that seeing it in front of my eyes, yep, you guessed it. I cried. My Mum is an incredibly patient woman. Also helps that she has a constant supply of pocket tissues in her bag. We ended the trip by going to Morecambe (again, 10/10 do not recommend) to see the statue of Eric Morecambe. My favourite. I will never get tired or bored of watching Morecambe and Wise. I almost cried. But unfortunately, we wanted to get out of Morecambe as quick as we could. So instead I sang Bring me Sunshine at the top of my lungs and got straight back in the car and on my way to civilisation.

I wanted to hate Liverpool, what with being terribly Southern, but I couldn’t. Between us we couldn’t fault a single thing. It was great, it was beautiful and the people went out of their way to help us (Mother has very visible mobility issues. Apple doesn’t fall far from the tree). Woman had a great time away which is all I could ask for. It wasn’t quite the 60th birthday in St Petersburg she had suggested (she was very easily influenced watching the World Cup in Russia), but there’s always next year for that.

House hunting has gone up a notch anyway as I prepare to say goodbye to the flat. 11 years is too long in Aberdeen. I’ve had enough. I’d had enough after a week. I’ve done well to last this long. Until recently it’s always been Edinburgh that the search has focused on, but I don’t think the budget will stretch to buying what I want….Liverpool however….watch this space.

I received the date for my second foot operation (30th August) which can’t come soon enough. This does mean that I have now stopped injecting cosentyx and my knees are already screaming out in pain. No inflammation so far, so I’ll keep my good fingers crossed that it remains that way. I’m in two minds about starting again due to the crazy weight gain that is continuing to occur. I started my cosentyx journey almost 3 stone lighter than I am now. And it shows. And I feel it. And it’s 100% down to the injections. Will discuss with my rheumatologist at my annual review in a few weeks time. Otherwise all is ok. ‘New toes’ feel quite achy but generally feel ok. Did I ever write about the fact I broke one of them? I forget. Good times. It’s more general aches and pains that I feel of late. I guess this is what comes with old age, what with being *29* and all.

Having said that, my fingernails are riddled with psoriasis again, and have been for a while, and I always find my nails to be an indicator of my arthritis in general. Bad nails = bad arthritis. I’m out of ideas with what to do with them. I keep them super short, I gently buffer away the ridges, but still they get worse. Even when the nails are super short it doesn’t stop the psoriasis from destroying what little is left. Any ideas? My GP won’t refer me to have them permanently removed (believe me, I have BEGGED) unless it comes to that last resort. But I’m fed up of them. HELP ME.

I got a new phone which I still have little idea how to use so for every message I’ve potential deleted without replying, or which didn’t transfer over, my sincerest apologies.

Molly cat had to have 4 teeth removed and was a very brave girl. But apparently so sassy she ripped out her IV drip within 10 mins of coming round. That’s my girl.

Been absolutely stressed to the max with a lot of life happening at once. I can’t wait for 2019 to be over so I can start 2020 afresh. And just when I thought I couldn’t get any more stressed or flustered, I’ve been called for jury duty. Exactly 6 weeks after my op. Pin pull and sheriff court. What a time to be alive.

Work is still mind numbingly dull and unfulfilling but I’m yet to work out what I want to do (or can do) instead. Although it’s debateable just how well I can do my current job anyway. I feel like my brain is wasting away in this office. In this job. In this industry. If you have a job for me, send it my way. I make a very good cup of tea.

I’ve read 40 books already this year. Another sign I should get some friends.

I passed my second year of Open University. Just. Heavy, heavvvvy emphasis on the just part with relation to the exam. Not my finest moment. However, I passed politics as a whole strongly and am now onwards to philosophy. Much excite.

After 13 years since I turned my back on it (long story, it involved me passing my driving test and buying £20 of pick n mix from Woolies to celebrate, very retro) I’m making the transition back to being vegetarian. I hate waste, so I don’t want to chuck the meaty food I already have, hence it’s a transition, but it means what I’m buying going forward is veggie.

I’ve stopped wearing make up because my skin has been in terrible condition and I *finally* feel a little bit more like myself in general. I’ve started to wear clothes that feel a bit more me. Dodgy outfits as documented on my Instagram. And if you don’t follow me, why not? I’m very funny. Today I look rarther fetching at work in a pair of black polka dot joggers and a grey nasa hoody. I haven’t showered or brushed my hair. It’s a strong lewk. I dyed my hair purple but because I am the worst at anything to do with hair care it became ginger due to the bleach pretty quickly. But. I discovered toner. And it’s now a purple auburn. And I aint mad at it. I look less pale if noting else. It’s a slow process, and I’m still trying to get my head around being 2 dress sizes bigger than I’m used to, but I feel…better. A lot of the dress size expansion should be attributed to the fact that for the first time in my entre adult life I have boobs. And not just boobs but massive ones. I’m not a fan. I miss living life like every day was pancake day.

If there is one thing I’m not very good at, and I hate myself for it, is that I’m not very good at maintaining friendships. I am by nature a pretty solitary person, I like being alone and I like my own company, and I tend to want to be by myself than be with other people. Even my favourite people. It’s not personal, it never has been, I just can’t explain it. A born introvert (hard to believe, but true) I was probably the only teenager growing up who’s mother WISHED they would go out all night. Just go out Becks. Get out the house. Go out all night. JUST GO OUT. But I have tried very hard (well, maybe not very hard) to try and spend time with my friends. This year I’ve had my two best pals from Uni come to stay and I hope they’ll be back soon. Friends round for cuppas. I’ve even made friends at work. This is a big deal. I am reminded of the expression that best friends are like stars, you don’t always see them but you know they’re always there. And it reminds me that I have out there, in this big wide world, a select group of people, one in particular and she knows who she is <3,who I love more than life. I don’t see her often. We don’t speak often. But we don’t need to. Because it goes deeper than friendship. So I’m going to keep working on myself and working on keeping these priceless friendships going.

Man, that got slushy quite fast.

And other than that, things are much the same as they ever were.

Still always debating whether or not to continue with the blog. Given how life is less arthritis-y and medication-y it seems a bit….futile? I don’t know.

I disabled my facebook page for a while, which was great, only it meant I disabled the blog facebook page as well. Does anyone know if I can keep the blog part and not the personal part? It’s such a life zapping pointless app to me now. Says she, who loves Instagram. Nobody is perfect ok.

And that, ladies and gentlemen is a wrap. I make zero promises about another blog post any time soon but I will try and document my foot surgery a bit better than I did last time. 2 weeks today.


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!

This one time, I appeared in the UK Pharmacy Review

I have been the absolute worst at keeping the blog updated over the last few months. I would love to say that it is because life has been so hectic and I have barely found the time, but the truth is more like ‘I had 10 weeks off work after my surgery, watched shed loads of tv from the sofa, ate my body weight in Christmas chocolates, and then slept on the sofa in a sugar induced coma’.

So here we are. February 2019.

I’m sharing something now that I should have shared all the way back in November, DOH!

Fair warning, there are quite a few things from last year that I never shared, all of which will *hopefully* be coming to the blog shortly. Including life post pin pull (FAB-U-LOUS), a few more appearances in national newspapers (no, not the magistrates page), a short film I made in conjunction with Channel 4 about running the marathon and that one time I was invited to appear on BBC Breakfast to talk about myself (duh!)….but I was in France and slept through the alarm waking me up to do a 5am French time skype interview. DOH AGAIN. My 15 minutes of television fame so close and yet so far.

Anyway, back to the point.

In October of last year, I was invited to share my experience of living with psoriatic arthritis with The Northern Ireland Healthcare Review, Scottish Pharmacy Review, and Welsh Pharmacy Review – quarterly publications which are distributed to a broad audience of healthcare professionals. Which, is probably the most highbrow sounding thing I’ve ever been mentioned in. Shame there’s no photo of my bonny wee face.

I of course, never one short of a few words to say, jumped at the chance, and the attached two photos are the finished article (I hope that you can see the words, I’ve had an absolute ‘mare trying to convert the PDF to a readable image)

Over the next few months I’ll continue my work with my fave charity, Versus Arthritis, including working with them on upcoming tv adverts…have you seen the ones currently on tv? What have your thoughts been on them? Each advert is made with the real-life experiences of people just like me and are hopefully relatable to you all.

In the meantime, I’ll try and not neglect the blog and messages and comments and everything quite as badly as I have been (although let’s be real, I’ve been saying this for the last two years…old lazy habits die hard) and if I have ignored you please get back in touch and I PROMISE to reply.

NIHR Nov 2018 Psoriatic Arthritis - Copy-1NIHR Nov 2018 Psoriatic Arthritis - Copy-2

2 Week Surgery Check Up


Happy new year all! This post should have been shared 4 weeks ago but in that time I have been doing more resting, some holidaying and a lot of christmassing. So forgive me!!

It’s been a quick two weeks since I had my toe straightening surgery.

What have I done in the last fortnight? Pretty much nothing. I’ve spent a good 22 hours of each and every day with my foot elevated on 3 pillows. I’ve ate, slept and lived on the sofa all day every day. I’ve done as little walking as I can get away with. Kept bathing to a minimum and have only ventured out of the house twice, once for a flu jab and the other time to purchase the all important Christmas tree. Walking hasn’t been easy for me. I often feel quite nauseous and I’ve taken to keeping the foot entirely off the floor when I’m walking with crutches as opposed to heel weight bearing. But other than that I’ve not had a lot of pain at all. I can feel that the pins are there if I try to flex my toes but other than that I would have no idea that they were there.

On Tuesday (3 days ago) I returned to hospital for my two week check up. I had possibly the loveliest nurse I’ve ever had.

She carefully cut through the many layers of bandage – I was shocked to see how slim my foot is without the bandages! Then using a cool water like solution she applied it to the dressings to help them be removed.

Early indications? Foot looks great. Better than great. Foot looks perfect.

She then carefully cleaned away the toes, they were all caked in congealed blood, and she got to work on removing the stitches.

The stitches on the top of the foot, where the joint was released, were dis-solvable, the stitches in the toes were not.

First the dis-solvable stitches were cut. She very gently pulled them upwards, a quick snip of the scissors and they were gone.

She then cleaned the toes before picking and cutting out the stitches. This was the part I was a bit worried about, I was quite fearful it’d really hurt. But no, just a slight jaggy pain where she was pulling it ever so slightly upwards, and that was it. There was nothing to worry about! Kind of like having a long leg hair pulled.

The toes themselves are looking great, she even used the word exemplary. She puts this down to my near constant bed rest. There’s no pain, no redness and no swelling. So if you’ve having toe straightening surgery my advice is to rest with your feet elevated as much as possible!!

The nurse then re-dressed my foot and gave me a tubigrip to wear over the top to keep the toes warm. She then got me another support sandal. Despite the fact the one I had was a ladies large, it wasn’t long enough to support my toes (FYI my feet aren’t giant, they’re a standard size 6!) so I was given a mens large (how we lol’d) and instantly the extra support felt fantastic. I was no longer having to work hard to keep the toes away from the floor, the pain and strain of which was probably adding to the nausea.

So where to from here? As it stands I’m not having the pins removed until the 9th of January, which is another 5 weeks. They may look to bring it forward a a week, inline with the initial 6 week plan, but as it’s Christmas and New Year, I may just have to get on with it for an extra week….which if nothing else means an extra week off of work, hoorah!

I’ve spoken to my biologic nurse at rheumatology and have been told to not start cosentyx again until January, which is exactly what I wanted her to say! So far I’ve not flared and I’ve had no return of my psoriasis. I have slight aches and pains but nothing I can’t cope with. So far so good!

Toe Straightening Surgery


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.


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.



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.


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.



Toes cut and pinned back together.





Happy Anniversary to me!

2 days ago was my one year cosentyx anniversary.

I have successfully administered 15 cosentyx injections.

Three days after my first injection my scalp psoriasis had almost completely cleared.

By the end of week one my scalp was entirely clear and my arms were about 50% clearer.

By the end of week three I had only a couple of patches left on my legs.

By the end of week 4 I had only a tiny amount of dry skin, not psoriasis, on my legs.

My knees were better. My toes were a bit bitter. My fingers were improving week after week.

The scarring on my legs eventually faded.

Over the months I have cleared out my bathroom. First the tube of sebco, the one I used to get through every 4 days was binned. Then the medicated shampoos. Then the numerous creams and ointments and moisturisers, and only last week I binned an out of date tub of coconut oil.

Psoriasis wise, having a clear scalp was the most life changing improvement from cosentyx. My scalp psoriasis controlled every aspect of my life. I became aware of it when I was about 14/15 years old in Malta and I realised had a small ‘bite’ on my scalp. I thought it was a mosquito or something and didn’t think too much of it, but over time, it got worse and worse and at some point I must have realised it wasn’t just a bite. I went through my late teens without seeing a GP. I worked a series of jobs that would often require me to wear black tops and it was pretty embarrassing. Constant flaking. But I don’t remember my scalp being super bad. It was probably just a few small areas of psoriasis. I could cope. Life went on.

When I moved to Aberdeen in 2008 my scalp must have become so bad that I made my first ever GP appointment for it. I remember the doctor looking at my scalp and exclaiming he’d never seen anything quite like it and that the plaques were larger than cornflakes. That description of them has never left me. Nor did it ever put me off eating cornflakes. I was prescribed cocois and told to sleep with it on my scalp over night. I stank. Rotten eggs. It was horrible. I sound so attractive. But, to some extent I guess it must have worked. I don’t remember being chained to the shower, I was able to have lots of very drunken nights out and I don’t remember being in constant pain from it.

I don’t remember it being really bad until about 2013. When suddenly it took over my life. My scalp was covered from the base about 2/3 up the back of my head. I went from treating it once, twice a week, to every single day. I went from being able to manage it to having to take days off work because it had become infected. Holidays would be dictated my by scalp routine. A family holiday to Florida not enjoyed to its full extent because I couldn’t jump in the pool and frolic with everyone else because I couldn’t get my hair, and therefore scalp, wet. I could only get in the pool when it fell in to the hair wash routine. Being in Italy and having an early night every other night so I could get back to the hotel and put the 3 hours aside I needed to keep on top of it.

I have, it has to be said, the most patient, understand boyfriend (well, fiancé now!) in the entire world. A man who would cut evenings short with me so I could get back to do my scalp. A man who wants to take me back to Florida so I can jump in the pool without a care in the world.

My joints have improved too. I have no active inflammation. None. Nada. Nothing. This isn’t to say that I am without pain, I’m not. I still suffer from pain in my feet and recently in my fingers and hands. But I am moving. I can walk without pain and move around. I recently spent a great afternoon with my nephew, rolling around on the floor with him, ducking down low to hide behind things and dance around with him. A year ago this would have been impossible for me to do. When I held him for the first time I was covered in psoriasis and I struggled to hold him confidently, my pain was so bad I thought I was going to drop him.

The fatigue still pops up every so often but it’s never connected to cosentyx. The fatigue I have now occurs when I’ve overdone it, as opposed to when I was on methotrexate and the fatigue was so bad I was pretty much in bed for 4 days trying to recover.

Not having scalp psoriasis still blows my mind, almost one year on. To know that I have gone almost 365 days without it. To be able to sit on colleagues chairs at work without leaving a trail of flakes behind me. Not having to sit on a scarf on my own chair. Not having to vacuum after myself every moment of the day. Cleaner house, cleaner car, cleaner desk space.

I struggle to remember now how it felt. How painful it was. How inconvenient it was. It feels like a distant memory, one I hope to never revisit.

Having said that, over the last few months I have started to wonder if the cosentyx is becoming less effective. My fingernails are showing signs of developing psoriasis again. My fingers are hurting. The underside of my toe joints starting to feel a lot like the very pain that started my whole arthritis journey.

I was due to inject on November 5th but because of my upcoming operation I but I have skipped this one, and maybe the next, injections. This fills me with dread. I don’t know if or when I will flare, but I’m expecting it. I know I’ll hurt. I know it’ll be difficult. But at least by not being at work I can ride the pain out at home.

I have what I think is a small patch of psoriasis already returned on my arm and my feet don’t feel like they have as much ‘movement’ as they did before.

My toe straightening surgery comes next. I was denied the surgery so many times over the last two years because methotrexate and sulfasalazine weren’t controlling my inflammation. I am able to have my surgery in two weeks time because cosentyx is doing what those two couldn’t

When it comes to injecting, I am the living embodiment of ‘If I can do it, anyone can’. I was petrified of needles. Even just thinking about one was enough to make me almost faint. But now I can inject without a seconds thought. I know that cosentyx is the only biologic I’ve had but I understand it’s one of the (if not the) least painful injections. I never thought I would find myself looking forward to injecting myself, but I do.

In the one year since I started cosentyx I completed the London Marathon, I turned 30 at Disneyland Paris, I saw the Northern Lights in Iceland, I went to Holland to see my best friend for the first time in 9 years, I’ve just returned from another trip to Paris and will be heading back to Holland shortly. I’ve been to see my favourite bands live, seen shows I love at the theater, spent time with my Sister and been on days out. I got more involved with Arthritis charities and continue to work as an advocate for those of us with psoriatic arthritis.

It’s not been easy.

But it’s been ok.