My experience of cosentyx

So every four weeks on Instagram I post a photo of my wee face and my cosentyx injection. Every month without fail this photo is my most liked and commented on. Lots of fellow users and new users with questions about my experience on it, and it occurred to me I don’t think I’ve ever done a post on this topic.

There are so many taboo side effects that occur after using cosentyx, and it’s so important to realise what you’re going through is normal. You are not alone. As always, if I have to be the one to say “Once after I injected, I pretty much pooped my pants” so be it. Because chances are you, or someone else on cosentyx, has gone through the exact same experience.

So here we go.

*DISCLAIMER it goes without saying I am not a medical professional (I am barely professional in my actual career), that my experiences are mine and mine alone and that every body is different.

What is it?

Cosentyx (proper name secukinumab, good luck on pronouncing that) is an immunosuppressant that reduces the effects of a chemical substance in the body that can cause inflammation. Cosentyx is used to treat moderate to severe plaque psoriasis (raised, silvery flaking of the skin), ankylosing spondylitis, and psoriatic arthritis in adults. It comes in a pre-filled injection (like an epi-pen)

How often?

I am fortunate (*touches wood*) that I only inject one 150mg injection every four weeks. I can sometimes feel it wearing off a bit towards the end of the month but by and large one jaggy a month does the job. Some people inject on the same day every month. There is no clear-cut answer as to what is right and wrong as we’re all told different things. But me, every four weeks.

How do I get it?

Being UK based I don’t need to worry about insurance etc. My rheumatologist decided to put me on cosentyx and a few months later I had a lovely nurse round for a cuppa tea helping me do my first injection. Lloyds Health at Home are responsible for my deliveries. They phone me from Glasgow every so often, ask a few security questions and then ask how many pens I have in stock and do I require a new sharps bin. We agree on a delivery date and the day before the delivery arrives I get a text message confirming the two-hour delivery slot. My Mum will very kindly go to my flat during the delivery slot to take my delivery. It needs to be signed for and only by people who I specify can sign. So, it’s me, my Mum, JP and my next-door neighbours. The box is then popped in the fridge but never against the sides of the fridge. Don’t want them freezing. It’s not an ice pole. If I need a new sharps box then I seal up the full one and hand it over to my driver who gives me a new one. I work with a girl who gets her biologics delivered to the office as there is nobody at her home during the day, so this is also an option if you’ll have nobody at home during the slot.

Pre-Injecting

I take my pen out of the fridge and leave it on my lounge table for approximately 20 minutes until it is no longer cold to touch. (Pens that are really cold tend to hurt a lot more than those at room temperature). I also inject after I have eaten my evening meal and always on a Friday night so that I have the weekend to deal with any side effects (I appreciate I am super lucky to not work weekends which allows me to do this).

The Injecting

I choose to inject in the top of my thigh. Either thigh will do, but if I’m able to remember which I injected in the previous month then I will inject in the other. But I seldom remember. In fact, I never remember. When sitting down and after I’ve wapped my trousers off, I place my palm flat on my thigh, with my fingers touching my knee and the part of the thigh touched by my wrist is the area I’m gonna aim for.

I then use my thumb and middle finger to mark the spot I’m going to inject by pulling the skin taut. I go through my required checks (is the pen in date? Has the seal been broken etc.), remove the cap and then press the injection down in to my leg.

Hold for around about 10 seconds until you hear the injection click off.

Remove, pop the pen and the cap in the sharps bin.

I sometimes have a small spot of spillage, but I wipe this up with a piece of toilet roll and pop a plaster over.

Does it hurt? Nope. Not really. Sometimes it feels a little bit stingy, and some are more stingy than others but honestly in the grand scheme of pain, it is a walk in the park.

After Injecting

I always take a bath. There is no real reason for this other than I really love baths.

After I have injected I start to feel a bit ‘groggy’. A bit tired. Just…groggy. I don’t feel sick, I don’t have a headache, nothing like that. I just feel like I want to get in to some comfy pyjamas, snuggle under a blanket on my bed, cuddle my cat and read a book.

My Side Effects

(Remember my experience of side effects is not representative of everybody)

  • Sinus problems. I’ve always had problems with sinuses but as soon as I started injecting they went up a notch. I had sinusitis, genuinely, for about 9 months solidly after I started injecting. I’ve visited my GP on many occasions and was prescribed numerous nasal sprays. After this initial never-ending bout it did start to subside. I do still sometimes suffer from sinusitis (I spend about a day feeling like I’m getting a cold and panicking that I’m getting a cold and then going to die from flu before I remember, it’s my sinuses) but between nasal sprays, decongestant tablets and just accepting the fact my face will hurt a bit, I;m now able to just get on with life.
  • Yep I said it. Poopy. Within about 30 minutes of taking my injection my tummy starts to feel churny. Churny is the only word I can use to describe it. A bit like a washing machine on a gentle spin. It growls a little bit and spins some more. The next morning I would then proceed to be really quite ‘poorly’. This however started to creep into a few days after my injection. I would have little to no warning of needing to go. I mean literally I sometimes had as little as 30 seconds before thinking I needed to go poop and then doing poop. This then started to occur on random days during the month. I saw my GP and he had a good feel of my bowel and said it was inflamed, likely IBS triggered by cosentyx. Poo is up there as one of the, if not the number one side effect of cosentyx. It is very common. I proceeded to send my poop off in the post (sorry royal mail) to confirm it wasn’t cancer and then monitor my symptoms. I can now narrow it down to being triggered by certain foods (garlic, onion and peppers). The day after injection, sometime between 12-24 hours after, I do still have these ‘toilet troubles’ but I know to expect them and can manage my life around it
  • Again, I’m going there. Cosentyx gives me wind like you would not believe. Even my cat runs away. This mainly occurs for the first 24 hours after my injection.
  • Lip infections. What do I mean by lip infections? Well, it occurs exclusively on the left side of my lips. It’s not a cold sore and it’s not just dry lips. It’s a really weird one. It does get dry and it does crack but it’s also prone to then sort of…weeping. Horrible I know. And it causes me *a lot* of pain. GPs in the past have prescribed different topical creams and nothing seems to really work. If I am more than 1 meter away from a lip balm then I honestly start to panic. I apply it pretty much every 15 mins. My lip balm of choice, because you were wondering if Blistex Med Plus. Accept nothing less.
  • Weight gain. This is a controversial one. The side effect leaflet does not say weight gain. Medical professionals are split on this one. Some people find they lose weight on cosentyx. But not me. I am not that person and if you ask other people online (not just cosentyx users but biologics in general) this is very much a very real side effect. I have gained a mammoth 2.5st/16kg in weight in just over two years. The majority of this on my tummy, the rest on the tops of my legs, my boobs and my chin. The word I use to describe this weight gain is uncontrollable. I simply do not have any control over it. I last weighed myself at the end of December and know that if I went to weight myself again today I would be heavier through no doing of my own. I am always very conflicted over how I feel about my weight gain. On the one hand, I accept the weight for what it is because cosentyx has given me my life back. But I am also a girl with a history of disordered eating and body image issues, so it’s also very hard for me. It took me a very long time to ‘accept’ that I had gone up quite a few dress sizes and no sooner did I buy size 14 trousers do I now find myself in the position of likely needing to go up a 16. As somebody who was a toned size 8-10 just prior to my diagnosis this is still something I am getting used to. But then when I weigh everything up (pun very much intended) then I’m ok being chubby, wobbly and soft, because I am living life again.

 

General Observations

  • Speak to your medical team if you want to get pregnant whilst using cosentyx. This is not a conversation I’ve had because I think children are the spawn of Satan, but I think you need to be off of it for a certain amount of time etc.
  • Compared to methotrexate I have pretty much ZERO fatigue
  • Whilst I don’t have any inflammation I do still have ‘general joint pain’ and need the odd painkiller or two, and this is absolutely ok. Cosentyx doesn’t cure all.
  • I haven’t required any regular blood work on cosentyx but some people find they do. Your rheumatologist will be able to advise

 

If I have missed anything or you have any further questions please get in touch with me. I’m trying to get my head around how best to film myself with my trousers down (steady on now) and injecting so that I can show you guys how it’s done.

“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?”

No.

  • “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.

GTF.

Rant over.

72619579_10157396250451745_8942494691958456320_n.jpg

 

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.

Charming.

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.

Bye.

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

One Year, Three Years.

Friday at long last! It has felt like a 48,674 day long week this one.

April 22nd was one year since The London Marathon. Crazy to think about how quickly it has flown by and how I can remember every moment and feeling of the day. I can remember every text I sent and received probably word for word, who I spoke to on the phone, photos I sent and photos I received. I can feel where the tears ran down my cheeks. The sheer feeling of being overwhelmed that I had achieved my impossible.

I would have dearly loved to have run it again this year, last weekend, but it was not to be. Which is just as well as I am currently nursing a broken toe. More of that later.

In the year since the marathon I have hardly done any running and unlike in years gone by when this really depressed me, I am ok with this. Of course, I would love to be running 4 times a week like I used to, but I achieved the one thing I thought my arthritis has robbed from me, The Marathon. And I feel ok. Which isn’t to say I don’t want to run it again. I do! I REALLY DO! And will continue to enter the ballot until I am successful again, but for now, I have the closure I needed.

Last week I marked 3 years of having arthritis.

Happy arthritis birthday to me!

The 23rd April 2016 was not the day that I was diagnosed (that wouldn’t come until the August) but this is the day when I first noticed that something was very, very wrong. The aches and pains after my running the previous few weeks hadn’t subsided and this was *the* day I first noticed the toe. We all know how this story ends.

Instead of being sad and wallowing in my own self-pity (which I do pretty much every day as standard anyway), JP took me out for a celebratory Nandos (as it was Nandos we had after the marathon a year before, and because the boy really likes chicken).

In general, life is exactly like David Byrne sang, same as it ever was. But yes, I broke a toe. A new toe. I broke one of my new toes and it was probably more painful than the immediate aftermath of my op itself. I went to walk around the end of my bed just a bit too quickly, didn’t give enough room between myself and the bed leg, and whack. I absolutely clattered my left foot in to the frame and fell to the floor crying in pain. Can honestly say it was a 10/10 pain level. The only toe that seemed to have been knocked was my middle toe and by the next morning the toe was swollen and black. A quick trip to the GP who assured me that yes, whilst she was pretty certain it as broken, that no, I hadn’t snapped the toe. In the 5 months since my op (bloody hell, ‘they’ weren’t joking when they said time goes quicker the older you get were they) my toe has healed to the level of a normal toe. So that was good. A big prescription of tramadol, 4 days of rest and back on my feet. Still sore three weeks later but walking a lot better and it’s now a fetching shade of lavender as opposed to black.

Wrist and hand pain getting worse, clicks becoming louder. Knuckles now crack. As do shoulders and elbows and a big toe. I would now be the worlds worst burglar. You’d hear me coming about 4 years before you saw me.

Open Uni year two is nearly at an end and I’ve come up with this great idea that I should stop doing PPE as it doesn’t challenge me and do History of Art instead. Someone please talk me down from this ledge. I can’t keep changing my mind.

Enjoyed some lovely weather here in Scotland and spent a wonderful weekend in beautiful St Andrews. 24 degrees and I was covered in factor 50 on the tiny bits of my skin I allowed to be exposed and head to toe in clothes. Sun damage causes premature aging kids! I’ll thank myself for roasting alive under layers on the beach when I still look 25 at 90.

What else? Anything else?

Tickets booked to see Doves in June which I am VERY BLOODY EXCITED ABOUT. Molly cat is still a big brown ball of malting fur and I love her so much it’s almost painful. JP and I have no holidays booked for the first time in our entire relationship and this is very weird. As well as our normal trips to Holland later in the year we’re thinking about Lyon. But sadly, operations get in the way of being able to book anything. BOOOOOO. Having said that a summer trip to Liverpool and Cornwall has been booked for my Mums 60th birthday shindig. Work is still the bane of my entire existence. Wedding planning is the most stressful thing in the whole world and I don’t even wanna think about it let alone write about it. I completed my 2019 Goodreads challenge of 15 books already. I’m now aiming for 35, though I suspect if I wanted to I could easily hit 40.

And so yeah. That’s me.

Also coming to the blog very soon are the things I’ve learnt in the years I’ve learnt sine my body gave up on me.

Sensible Shoes is 2!

Sensible Shoes is 2 years old!

I have always had grand plans for the blog and truthfully, they’ve never materialised due to my own laziness. As we know already, this is a recurring theme of my life (“Rebecca could have achieved so much if she could have been bothered” is probably a quote about me from playgroup).

Having said that, lots has come of this blog, more than I could ever have imagined. Opportunities, meeting people and so much more.

In my last post I debated whether to continue blogging or not. My symptoms have pretty much plateaued and I think I’m almost (if not totally) in medication induced remission. Which isn’t to say I don’t still have some problems, but for the most part, I’m as normal as I ever was (stop laughing in the back). The overwhelming response to continuing the blog however was yes yes yes. And so, I shall give the people what they want!

I’m going to get the blog diary up and running again, where I wrote down all blog ideas and a publishing schedule. I think I managed 2 posts this way before…well…you know how it goes. I also don’t know where the notebook now is. Probably thrown in to a corner of my spare room where it shall never be seen again. Like my hopes and dreams.

At the start of this week wordpress notified me that it was 2 years since I started the blog. It went through a through iterations before I settled on Sensible Shoes and this is likely to change again shortly due to be painfully indecisive.

So, to celebrate turning 2 I’m going to share the highs of the blog and the mixed bag of my life over the last 2 years

Highs

  • The London Marathon. Sure, it wasn’t fast, and I spent most of my time walking and talking (me, really?) and making new friends, but it really was, to date, the most profound moment of my life. I grew up just outside of London and spent my entire childhood wishing I could run it. As I grew older, I set myself the goal of running it before the ae of 30. Aged 25 I took running up and became pretty good. I had realistic ambitions of running it in 4hr20. Then age 27…well, we all know how it ends. I was told I would never run again. And they were kind of right. It’s more of a slow jog shuffle. But I kept moving, and I completed 26.2 miles on the hottest marathon day in history. And I didn’t die. Truly. The best experience of my life to date and (whisper it quietly) one I hope to achieve again
  • Two Great North Runs. Neither fast or pretty. But both post-arthritis. I have one more to go this year and I’m already looking forward to it
  • I was contacted by the fab-u-lous Juliette who took my story of staying in work with arthritis to The Guardian where I was a 2 page spread in the magazine. Juliette sent me a copy of her AMAZING book which was one of the things I meant to review on the blog, and never did. So, I promise I will get to this soon
  • As well as The Guardian I was also published in The Mirror and The Sun (sadly, not page 3) as well as local newspapers and arthritis websites
  • Connecting with some of the most amazing people through the power of the internet. Whether it be through emails, comments or a good ol’ Instagram friendship, these would never have presented themselves to me if it weren’t for being a little bit broken
  • Cosentyx changing my life. Psoriasis free for the first time ever (I cannot stress enough just what an impact this has had on my life) and my arthritis is almost totally controlled. Cosentyx I love you please don’t ever leave me
  • My wee cat Mo. Who, even though to some people is ‘just’ a pet, has helped to change my life for the better. On those days when I either couldn’t or didn’t want to get out of bed, Mo meant that I had to, because she wasn’t going to feed herself. On the days off from work sick or depressed, she was there with me, providing me company. My wee shadow. I can’t even go for a wee without her either being in the bathroom with me (you’ve not lived until you find yourself having a wee with a cat on your lap) or is sat outside the door crying for me. She has the most amazing intuition for when I am poorly or sad and she really was supposed to be adopted by us. The universe wanted her to come to us. She is my best friend and I can’t imagine life without her.

Fair to middling

  • Still trying to work out what I want to do with my life. I know it doesn’t involve me living in Aberdeen, and I know it doesn’t involve me continuing in my current job. I know all the things that I don’t want, but I don’t know what I do This isn’t a new feeling, this is something I have had my entire life. Hence the long list of jobs, flats, cities, degrees etc etc that I’ve embarked upon to try and find the life I want. But all those years ago when I was just bumbling through life I was still young and free enough to not have to worry about what I was doing. At 30, nearly 31 (sweet Mother of Moses where does the time go), I feel like I should know. Like I shouldn’t be walking out of a job without one to walk in to because responsibilities. But other times…I think that’s exactly what I should do. Or I’ll be in exactly the same position in 10 years time wondering when the change will happen
  • I picked my Open University studies in Politics, Philosophy and Economics back up. The good thing about this is that I’ve almost finished year 2 (out of 6) and have done pretty well mark wise. The bad news is that I’m aware once again at how frivolous it is, to pay all this money for a degree I neither want or need. I’ve come this far so I should see it out. Just to find the motivation to do so and hope that it’s all worth it
  • Still working on the ol’ self esteem. Some days I feel like my old self again. Some days I look like I should be the before photo on a makeover show
  • Toe straightening surgery. Sure this is what I wanted and longed for, but I’m still unsure if it was worth it. Toe two in particular is very sore but I suppose in the grand scheme of it, it could be worse. But it felt like I went through a lot for something that might not be worth it. Is this going to stop me going through with op 2? Hell no. Operations = time off work.

Lows

  • Methotrexate. Never been so tired or fecking miserable in my entire life and still trying to pick myself back up mentally from this draining experience. Sleeping from Friday night to Wednesday morning and still feeling like I was clinically dead. Miserable, grey and tired. The fact I got through 9 months on it is testament to me having the patience to give it the time to work. Alas. It didn’t work
  • Sulfasalazine. Never been so ill than when I ate those yellow pills. It caused me to break out in guttate psoriasis from my forehead to the soles of my feet and had me rushing to the GP to be told I was suffering a severe allergic reaction. My lips were swelling, I was short of breath and my joints were swelling alarmingly fast. All this in 6 days. If you don’t know how this story ends, get me to tell you it one evening over a drink. It involves me driving (In the aforementioned state) to no fewer than 5 pharmacies in Aberdeen, crying my eyes out, trying to source a steroid injection that was to be administered to me by a doctor who then slapped my bum at the same time as jabbing in the steroid injection to find out which hurt more. This is just the tip of the iceberg and genuinely, one of the best worst experiences of my life and one for ‘the book’
  • Depression and anxiety caused by my feeling like I was unable to cope with life. Not helped by the fact I was suffering a panic attack almost every day. I’ve always been a *little* highly strung but when I went on to methotrexate and it changed how I could live my life I sunk in to a deeeeeeeep depression of which I struggled to cope with. I literally couldn’t cope with life. My toothbrush broke. Cue a meltdown at work for which I was sent home. I was incapable of parking my car because I was petrified I was going to smash in to other cars. Unable to spend even a few hours at home alone and needing my Mum to provide me with near constant care. Two bouts of happy pills later and I’m less anxious (though I will never be completely anxiety free, it’s basically 90% of my DNA), and able to cope with life much better
  • Weight gain. I cannot even begin to explain. I went in to this cosentyx journey at one weight and 16 months later I’m a stonking 14kgs heavier and officially overweight. I hold cosentyx responsible and it’s not fun. I look like a misshapen soft potato (you know the kind that sprouts when left in a dark cupboard too long) and my wardrobe is slowly becoming emptier as the clothes that fit me become fewer and fewer. I find myself contemplating going keto and even though this scares me (because, crisps), something has to give. And not just the buttons on my trousers.

 

So what does the future hold? Where do I see myself in another 2 years time? What do I want to achieve? Who do I want to be? What do I want to be? Where do I want to be? What people will still be in my life and who won’t make the cut? Who am I yet to meet? What am I yet to do?

Short and Sweet

So little muffins, it’s been a while since I posted anything meaningful and this post shall be no different. Meaningless.

But short by my standards though so that’s good.

All those promised blog posts are yet to materialise due to being busy catching up with my Open Uni studies (why did I think this was a good idea again?!), numerous holidays, being back to full time at work and general life getting in the way. And by general life, I mean alternating between sleeping and watching RuPauls Drag Race.

I am now 12 weeks post pin pull. The swelling around the ‘new toots’ has subsided a fair bit but is still rather puffy and a little purple. With each passing week the pain has become less, although when I have stubbed them or caught them the pain has bought me to tears. Thank god for waterproof mascara. The best worst being when I went to step into my bath, didn’t bring my foot up high enough and smashed the toes on the side of the bath. The pain taking me by surprise so much I then proceeded to fall forwards towards the bath and fell in. Double whammy of pain and water getting splashed around the bathroom like an orca doing belly flops.

I am still slowly but surely trying to increase the amount that I walk and know that I need to focus on stairs a bit more (the rolling forward of the foot with toes touching the stair, still hurts). Set myself the daily target of 7,500 steps which is easier said than done when you’re office based. I’m not confident enough to start running again on them just yet because I think they’re going to smack in to the floor with such impact they’ll break. I could be being dramatic, but I suspect I’m not. Otherwise, the toes feel generally ok. They don’t feel like they’ve been flattened, the scarring has almost totally faded and I’m used to how they look. I am still wary to try on a normal pair of shoes though because I’m not emotionally ready enough to do this. Maybe I’ll wait until I’ve had the right foot done too I can wear a pair. During the immediate weeks after the op, and a few after the pin pull, I had doubts and regrets that it wasn’t worth it. I have to believe that it has been worth it, but only time will tell. Still only wearing trainers and my doc martens though. Looking forward to wearing something different (Please, Dr Roberts, if you read this, schedule my second op in soon. I promise I’ll behave this time.)

Being full time at work is exhausting. Lots of decisions to start making with regards to staying full time, going part time or leaving work altogether. It’s only money, right? I’m having to get up from my desk and have a little walk around roughly every 20 mins to stop my body seizing up. There’s only so many times you can get a cup of coffee or go to the toilet before people start thinking you’re a caffeine addict who can’t stop weeing. There’s only so much self-delusion I can try and kid myself with before I have to admit that both of the aforementioned statements are true. Despite being caffeine intolerant. That’s why I drink it so much. It makes me nuts. Shaky and nuts.

Also think I might have carpal tunnel which is high on the list of things I could do without and also on the list of things I thought only old grannies got. Yet another example of being 30 years old with the body of a 90-year-old. Although carpal tunnel could mean an operation and operation means time off work. So I’m cool with it. Does mean I have to continue my Ali G booyakasha impression to relieve the pain though which try as I might, I can’t make it look ironic.

I’m now three cosentyx injections to the good this year and they’re finally starting to kick in. No psoriasis, no inflammation, just the occasional odd sore and stiff creaky joint which could be more to do with old age (trolol) than arthritis. Now to hit the fatigue on its head and I’ll be back to being unstoppable.

In other news:

  • It’s coming up for one whole year since I ran the marathon. Still blows my mind that I completed the course and didn’t die
  • Went to Sunderland for a lads weekend of football. And survived
  • Enjoyed Blue Planet Live in Glasgow with friends and had the latest night I’ve had in years which was swiftly followed 4 hours later by the earliest morning I’ve had in years for….
  • A flight. I went to Berlin for a week and am still undecided if I liked it or not. Food great. History great (if you like that sort of thing. Unfortunately, I am allergic to WWII and spent most of the trip queasy and sat down trying not to get too sad). Art galleries SUPER GREAT. Going during International Break and Germany playing The Netherlands in Amsterdam and Holland losing 3-2….really not great. Returning my Virgil Van Dyck shirt as we speak
  • I finally came up with the premise of my novel. Now to find the motivation to write it
  • General mood is alternating wildly being one of generally antipathy to life and ‘meh-ness’, a restlessness making me question if this is all my life will ever be, to one so manic I need an elephant strength tranquiliser dart to bring me back down. Unfortunately, the mania seems to come out at work which is probably the place I need to be at my most ‘meh’, much to the irritation of my new colleagues who don’t quite know what to do with me yet
  • I got weighed at the doctors and am now officially overweight. Celebrated this achievement by ordering the world’s largest Chinese takeaway
  • I completed my 2019 reading challenge of 15 books by the first week of April. I really need to find some friends that are people, and not books
  • I’ve been shadowbanned on Instagram which is the absolute epitome of a first world problem but until this is rectified (which it bloody well better be) there is little point in publishing big new blog posts as I can’t publicise them. Which makes me wonder if I should keep the blog going. As my arthritis and general problems get better, I have less to moan write about. Do I keep it going? Do I start posting everything which I’ve been meaning to do and never have? What to do what to do?

So that’s all folks.

It’s Friday. I have a full fun packed weekend of studying ahead of me (don’t be jealous) and if I’m feeling fancy may change from one set of pjs to another.

Hope you all have a lovely pain free weekend and let me know your thoughts on if I should continue with this or not.

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!