“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.

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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.

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?

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.

 

Toenail and I.

*WARNING*

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

Here we go.

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

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

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

Why?

Psoriasis of the nail.

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

The Fingernails

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

 

 

 

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

IMG_1847

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

The toes however. A whole new level of pain.

The Toenails

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

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

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

The History

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

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

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

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

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

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

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

The Logic

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

The Procedure

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

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

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

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

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

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

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

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

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

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

The Aftermath

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

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

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

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

The Aftercare

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

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

IMG_1850

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

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

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

Things to Note

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

I use the following:

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

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

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

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

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

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

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

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

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

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

 

 

 

 

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

IMG_1839

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

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

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

 

30

30.

Thirty.

Trente.

Dreißig.

Trenta.

Dertig.

Trinta.

Or, in my strange accent. Firty. (33 will be a nightmare, that’s all I’m saying).

This time last year I set out trying to complete 30 things before I was 30. Life got in the way. I like being lazy, I think I achieved 3 things. Maybe I’ll do the 30 things before I’m 90….let’s not hold our breath.

Why is 30 seen as such a watershed age? I feel like 30 is the first age that sounds like you’re supposed to be an adult. At 30 you’re supposed to have your shit together, right?

I feel ok about turning 30. Not least because I still look impossibly young (thank you filters for allowing me to believe this illusion). I was asked recently by someone at work what my secret is to not looking my age, “Not having children”, I smugly replied. That and glycolic acid. Try it out. Superdrug do a really good glycolic acid which is a great introductory to acids and for the price, do a smashing job.

https://www.superdrug.com/Naturally-Radiant/Superdrug-Natural-Radiant-Glycolic-Toner-100ml/p/729356

I digress. I could talk about acids all day but I won’t.

Am I a fully functioning adult? I suppose on paper I am. Homeowner. Great career. No financial worries. 5 foreign holidays a year. CATS PROTECTION SAID I WAS ADULT ENOUGH TO HAVE RESPONSIBILTY FOR A CAT. It doesn’t get much more adulty than having a cat.

But do I feel like an adult? Hell no. What does an adult even feel like?

For the big day itself I’m going to be spending it at Disneyland Paris with my beloved family. I can think of no other way to spend my big day. Disney clothes, Disney singing, Disney rides, Disney everything.

————————————————————————————————————————————–

By the time you read this, I’ll be 30. I’ll be enjoying spending time with my Mum, JP, my sister Rachel and her boyfriend James at Disneyland. Hopefully we’ve all stayed friends and we’ve not fallen out. After all, you can’t fall out at the happiest place on earth! As well as Disney, JP and I will be enjoying a few days in Paris, my first time. At time of writing, Belgium have just beaten Brazil in the World Cup and will be playing France when we’re there. Allez les blues!

Anyway. Back to birthdays and the fact that I am possibly almost an adult now.

When I was growing up, people always used to say that one day Rachel and I would be best friends.

I refused to believe it. I would ignore them and go back to biting chunks out of her, punching her in the face and pulling her hair. I was 18.

I’M JOKING. I was 22, she was 18. Trolololol.

That’s a tad extreme but it turns out that those people all those years ago were correct, I adore my Rachel. We speak every day and I can’t imagine life without her.

Which has got me thinking about other things I heard when I was younger that turns out, were true

  • That spot on your face you think everyone will notice? They won’t. It’s not as bad as you think. Nobody will notice
  • You are nowhere near as fat as you think. You will look back at how ‘fat’ you were at 18 and wish you were still like that
  • You will turn in to your mother. Whether you want to or not. It might be gradual, it might be sudden. But one day you will find yourself carefully putting an open cucumber in a food bag before putting it back in the fridge wondering when you became her (FYI I was 21)
  • Even though you think you’re dying, trust me, time really does heal a broken heart
  • Nobody knows what they’re doing. This applies to life, work, relationships and friendships. Everyone is winging it
  • If a man acts and says he’s unavailable, believe him and run a mile
  • Early nights really are the way forward. My parents begging me not to stay up too late. Getting told off for staying up until goodness knows what time laughing at people who go to sleep before midnight. I now consider it a late night if I’m still awake at 9pm
  • When you’re young, elders will remark “you’re so lucky you can still eat what you want and not gain weight, wait until you get older”. You’ll laugh. You’ll always be able to each 25 courses at every sitting and never gain weight. You’ll always be slender and have the taut body of a gymnast. And then you’ll turn 28. You only have to look at a cake and you’ll gain 6lbs and you’re body shape morphs more and more in to that of a potato

 

There was also a few things I was told or believed as a child that turned out not to be true:

  • My Mum always encouraged me to wave to the people on planes in the sky. It was only after I had been cabin crew for about one year did I realise this was in fact a massive lie. I was 23
  • That plucking out a grey hair means that five new ones will appear. Jokes on you all. I plucked out two and ended up with a full head of grey hair by the age of 28
  • Cracking your joints will give you arthritis. Even bigger jokes on you all. I’ve never cracked a joint in my life and look at the state of me

 

What things were you told when you were younger that turned out to be true or not to be true?

————————————————————————————————————————————–

Looking forward to writing a far more health related post on my return to Aberdeen. 5 days after I return I’m straight back to hospital for my next bout of minor surgery on my toes and as this will be my second to last trip for this procedure, I’m going to blog about it. It’s not for the faint hearted so I won’t go in to detail here but if you suffer from psoriasis, and you have it in your nails, then you’ll get my drift and hopefully my next post can be of you some use for you.

For now, I’ll say goodbye. I’ve got a date with Mickey.

 

How to (unofficially) survive a sinus infection

How to (unofficially) survive a sinus infection

If you follow me on Instagram then you’ll probably have seen that I have a severe sinus infection.

It first occurred just after I started my cosentyx, and a quick read of the side effects shows you that sinusitis is pretty high up the list of things. Why are side effects never things like beautiful glowing skin or impossibly soft and shiny hair?

I’ve had sinusitis for over six months now. It has been unrelenting. Every time I think it’s getting better, it attacks me again with a vengeance.

I first saw a GP about it a few days after Christmas. As soon as I uttered the words “I’m on cosentyx” the tone of the appointment change. A quick check of cosentyx in the medical version of google and I’m told it’s a side effect. Get on with it. Just one of these things I’ll have to put up with. Trying to explain to her that I have been getting on with it but I’m here because I can take no more. Only to leave with no advice, no sympathy, nothing.

I continued to just get on with it as best I could.

But barely a day went by when I didn’t feel the symptoms. Painful forehead. Painful cheeks. Blocked nose. Headache. Earache. Sore throat. Sniffly. Runny nose. Sore nose. I knew it wasn’t a cold because even when auto immune supressed like I am, colds do get better. This wasn’t ever getting better. It was only getting worse.

2 days ago I was enjoying a nice weekend at home with my boyfriend, spending some time on the sofa slobbing out watching the World Cup. Out of nowhere, and I mean out of nowhere, I became so run down. All of the symptoms I listed above came on in seconds. I knew at this point I had to go back to my doctor and was lucky enough yesterday to get a same day appointment.

Being the pessimist that I am, I was expecting the doctor to fob me off like I have been all of the other times. How wrong I was. A quick inspection confirmed that I have been suffering with a severe sinus infection that I shouldn’t expect to clear for about 6 weeks. I returned to work after the appointment but the symptoms got the better of me and I headed home to rest, which is where I still am now. Feeling that usual guilt of wondering what colleagues think of me being off again, trying to rationalise it all with the knowledge that I am unwell and that I really do need the rest.

I woke up this morning with the worst skin and dry chapped lips due to the constant blowing of my nose. I described myself to a friend earlier as both feeling and looking like ‘day old bread’. Can’t wait to get better and feel better and look better. It doesn’t just happen by itself however.

So. I’ve decided to share with you my personal guide to dealing with a sinus infection.

Let’s get steaming

  • Great for both trying to breathe again and for sorting out horrible lizard skin. I use a toner tab from Lush and a few drops of eucalyptus oil. Add to a bowl, mix with a kettle full of water that has been boiled and voila. Don’t stick your head to close to the water, giving yourself a steam burn at this point really would be the worst. Head over bowl, towel over head, and breathhhhhe. I steam my face for about 20 mins and follow with a good moisturiser. Hot baths are also great. I’ve had 2 so far today and will have one shortly before I go to bed. Again, I add a few drops of the eucalyptus oil to the bath.
  • Nasal sprays are a godsend. You will fall in love with one. And as tempting as it is to stick it up your nose 100 times a day every day for as long as you live, this is not recommended. Don’t use one for more than a week. This is definitely a case of something where I should practice what I preach. It’s not my fault it feels so damn good! Sterimar is a great nasal spray and I know a lot of fellow PsA sufferers swear by the stuff.

 

Softly Softly

  • I love love love using Eucerin Replenishing Face Cream with 5% urea. This one is the ‘night’ formula which is a lot thicker than the day cream. A little goes a long way. It can leave skin greasy after it’s been applied but this is a small price to pay. (Side note, all Eucerin products with urea in worked wonders for my psoriasis so give it a go)
  • Egyptian Magic Cream. Sure, on the surface, it’s just a tub of very expensive Vaseline. But this is a life saver. I apply to the skin that’s been abused by nose blowing and to sore lips.
  • When everything starts to get better and skin is less sore, Origins Never a Dull Moment exfoliator gets you back to beautiful glowing skin. Plus it’s microbead free so seals and turtles benefit too.

General Points for Survival

  • See a doctor. I was prescribed antibiotics and a strong nasal spray. If you’re on a biologic like I am, check with your doctor if you can take antibiotics. I did not check this. I took my first two antibiotics yesterday, and then that evening took my monthly cosentyx shot as planned. With hindsight, probably not something I should have done. I’m taking antibiotics to fight infection before immediately injecting a drug that heavily reduces my bodies ability to, well, fight infection. Not my finest moment. Hoping that the antibiotics will still do the job BUT YOU MUST CHECK WITH YOUR GP.
  • Lots of rest. Recovery is quicker if you have a cat to keep you company and provide limitless cuddles. Dogs work just as well. My rest right now involves me in my dressing gown, laid out on my sofa, propped up by memory foam cushions and under a comfy blanket. World Cup on TV, cup of tea to hand, endless supply of chocolate buttons.
  • Painkillers. If you need ‘em, take ‘em. Right now my painkiller of choice is co-codamol. My sinus pain is most severe in my forehead and when it flares I want to bash my head against a wall. The co-codamol does a good job at relieving this. I hate people who claim that painkillers are bad. Who preach for you to not take painkillers. These are the same people who claim that things like biologics are poison and natural is best blah blah blah. If you need painkillers, you take them. Don’t listen to fake martyrs. I hate these people. I love tramadol. Life goes on.
  • Lots of water. I am powered by rooibos tea.

 

A bit like florals for spring, I’m sure my survival guide is literally ground breaking. The abused skin around my nose is already getting softer so by the time I intend to face the outside world I hope to be looking fresh and healthy.

If you’ve any advice and tips for how you survive sinusitis and other ailments, then please let me know. I doubt this will be my last bout!

 

Products

Toner Tabs https://uk.lush.com/products/spot-treatment/tea-tree

Eucalyptus Oil https://www.boots.com/botanics-aromatherapy-pure-essential-eucalyptus-oil-10ml-10031672

Eucerin Facial Moisturiser https://www.boots.com/eucerin/eucerin-top-10-favourites/eucerin-dry-skin-replenishing-face-cream-night-urea-with-lactate-50ml-10065361

Egyptian Magic Cream https://www.feelunique.com/p/Egyptian-Magic-All-Purpose-Skin-Cream-118ml?gclid=EAIaIQobChMInuGczLfg2wIVFrcbCh30uwYlEAAYASAAEgLrRPD_BwE&gclsrc=aw.ds

Origins Scrub https://www.origins.co.uk/product/15343/11869/skincare/cleanse/exfoliator/never-a-dull-moment/skin-brightening-face-polisher-with-fruit-extracts

Sterimar Nasal Spray https://www.boots.com/sterimar-stop-and-protect-cold-and-sinus-relief-20ml-10191795

 

 

 

 

 

MIA. My Self Esteem.

 

Self-esteem

[self-i-steem-]

Noun

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

Has anybody seen my self-esteem?

Last seen around July 2016.

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

No?

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

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

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

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

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

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

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

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

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

Put simply.

My self-esteem became pretty darn low.

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

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

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

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

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

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

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

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

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

When did life become so difficult?

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

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

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

Burn the shoes.

Support Groups

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

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

They do however also drive me absolutely nuts at times.

So today I introduce to you:

The 5 People You Meet in Online Support Groups

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

Special shout outs to the runners up.

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

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