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?

Anxiety Anxiety Go Away

It’s not just you.

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

Anyway. Let’s get straight to it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

The Hardest Thing I’ve Ever Written

When I write and publish a blog post, I am often praised for being open, honest and brave. From friends who text me to complete strangers who reach out to me, the support I receive after each post always features those words. I have often found this hard to understand, because for me, I am merely being myself and I don’t see myself as any of those things because I’ll talk about and share anything!

Nothing feels off topic. There isn’t anything that I wouldn’t talk about. What I write about in my blog about my struggles with my arthritis are exactly the same conversations I have with the people in my life on a day to day basis. I am a total open book.

Or am I?

Because there has been one topic that I haven’t yet tackled. One issue that I have struggled to tell anybody about at work (just two people know). Something that only a handful of people closest to me in my life know about (just the seven people). And why is this? Because I haven’t been open enough. I haven’t been honest enough. And I certainly haven’t been brave enough. Until now.

We live in a society now where we are encouraged to talk about mental health. We all have mental health, both good and bad. But we still live in a world where it takes a lot to stick your head above the parapet and say “Hey, I’m struggling”. But I’m big enough and old enough and ugly enough to be that person.

So here we go.

My name is Rebecca, and today I had my 6 month review of my first ever course of anti-depressants.

There. I said it. It’s out there. Do I feel better for it? I don’t know.

I should start by saying that I don’t need to make this blog post and I don’t even need to share with you all what’s been going on. But I am going to because I do have the strength of character to share and to put myself out there and because I know there will be a lot of you reading this who have been going through the exact same thing and have maybe felt alone and maybe even a sense of shame about it. But also because writing has been my form of therapy and saying all of this ‘out loud’ allows me to accept it, embrace it and crucially, move on.

So. How did this come about I hear you cry?

Well as anybody with a chronic illness can attest to, waking up one day sick, and realising that you will never, ever EVER get better is quite a hard thing to take in and to accept. And I neither took it in or accepted it.

The first few months after my diagnosis were not easy. I was upset, tired, confused and scared of what the future would bring. Who wouldn’t be! I could barely walk and I had never in my entire life felt pain like it. So I got signed off work by my doctor for a fortnight and it was the best decision I ever made. It gave me time to research psoriatic arthritis, to rest, to sleep, and even to see some of my friends all of which perked me right up. The anti-inflammatories I was prescribed started to kick in, I was walking again, heck, I even ran and entire half marathon!

I started on methotrexate the week after the half marathon in mid September. I had such high expectations! It should help your joints and clear your skin I was positively told by every medical professional I met! Life will go back to normal!!

Only it didn’t. The methotrexate didn’t work. My skin became worse. More joints became inflamed at an alarming speed. The dosage was increased. Still nothing happened. The pain became unbearable. The higher my dosages went, the worse my fatigue became. I would take the methotrexate on a Friday and literally spend the entire weekend in bed. Either asleep, or crying. I couldn’t be trusted to drive when I was this fatigued. I couldn’t go out of an evening because I literally couldn’t do it.

By the November I became withdrawn, quiet and a shadow of my former self. I didn’t want to talk to my boyfriend so what little conversation we managed was mainly me moaning, crying or shouting at him. We had just purchased our first home together, were living with each other for the first time in our 5 year relationship and the poor boy had just had a pacemaker fitted, he really didn’t need to have to deal with Moaning Myrtle too. Sorry Jack.

Christmas was a DISASTER. I spent the entirety of Christmas day in floods of tears. I refused to speak with Jack on the phone. Sorry Jack. I couldn’t eat, I couldn’t speak, I just wanted to cry. I hurt, I hated my life and I hated everybody in it. I was due to travel to see Jack and his family on Boxing Day and I refused to go down. Sorry Jacks family. I wanted to just stay locked away in my room with my cat and never see the world again.

New Year came around, and my methotrexate dosage increased not once, but twice. I was now at rock bottom. My fatigue was now so severe that I couldn’t work on a Monday morning because I was still recovering from the Friday night. How life can change! I used to spend weekends recovering from wild nights out, a wild night out now consists of going to bed past 9pm!

April came and I didn’t recognise myself anymore. Not in any way. I didn’t wear make up, I barely brushed my hair, I took no effort in my appearance at all. I didn’t speak at work, I didn’t smile, I stopped laughing. My arthritis was not only any better on the methotrexate it was getting worse and worse and worse. As was I on a personal level. I was at rock bottom  And so, one Saturday on a shopping trip with my Mum, I said the words “I think I may be sad and I think I need some help”

Over a cup of tea.

In Greggs.

GREGGGGGGS.

For Gods sake why couldn’t it have been somewhere classier? Literally my one and only time in a Greggs and it had to be the setting for the most important conversation of my life.

Anyway I digress. My Mums response was “Yes, you are”. So I told her I was going to go to the doctors and she reassured me I was doing the right thing. I told boyfriend the exact same thing, he had the same response as my Mum. I clearly surround myself with very similar people.

So off to the doctors I went. Jack kindly and selflessly left work early and accompanied me to my appointment. Only to be left in the waiting room by himself because I decided to go in alone. Sorry again Jack, nothing personal.

“I’m not depressed. I’m just struggling to cope with this situation. With my body. Struggling to cope with life right now. I just need a boost to get me back to who I was and then I’ll be ok”

And that was it. 20mg of fluoxetine a day for 6 months and you’ll be back to your normal fabulous self. Within two weeks my appetite had completely disappeared and I suffered my first of a serious of crippling panic attacks. Side effects clearly listed in the 10 foot of leaflet but scary nonetheless. Appetite quickly came back. *Sigh*.

But then I also started to come back.

A hairbrush here. Some nail polish there. I came off the methotrexate in July and my energy increased. I started to cope with normal, everyday situations better. I was no longer a crying mess unable to cope with even the simplest tasks. I started to come out of my shell again at work. I started to talk to Jack again. He possibly preferred me when I had less to say. Sorry Jack. You just can’t win. I wasn’t unnaturally happy (heaven forbid) but I was normal. As normal as I could ever be.

So now I feel almost strong enough to take on the world again. As my arthritis continues to cause me new pains and new problems, it isn’t to say I won’t have the odd wobbly moment, but I know I can cope. If not cope perfectly, but cope better. When asked today how long I’ve been told to wait before my new medication, cosentyx works, my response was “how long is a piece of string” so I’m going to stay on the pills until Christmas to get me over the first few weeks of self-injecting cosentyx (coming to another blog post to you soon) and to see how my body responds, I think that’s the best thing for me.

So if you’re reading this and you feel a little less alone, feel a little bit like you’re not the only one who has these feelings, that you’re not the only person going through it or a little bit closer to admitting to yourself or others that you need a bit of a pick me up then I’ll know that finding the strength to put myself out there has been worth it.

The 5 things I wish I’d been told when I was newly diagnosed.

It’s been 18 months since I developed Psoriatic Arthritis and 14 months since my diagnosis. I don’t think I knew anybody who had arthritis. I didn’t really understand what it was. What it is. I didn’t know that people my age, and a lot younger could be affected so terrible by this terrible condition.

I had nobody to turn to. Nobody to ask advice. Nobody who I could relate to. I had a terrible medical team who threw a few leaflets my way and expected that to be sufficient. I feel very much that in the beginning I had to make it up as I went along, with varying degrees of success.

I eventually discovered a whole community of people who suffer from chronic illnesses and disabilities through Instagram. Though these people are not directly in my life I take a lot of strength in knowing that there are others out there like me. But my experience of feeling lost in this world of chronic illness was what led me to blogging. Especially when it comes to Psoriatic Arthritis, which is so poorly understood or even known about.

So in todays blog post I’m going to list the 5 main things that I wish I had been told when I was newly diagnosed. I hope that some of you can relate and I’d love to know what you wish you’d been told when you were first diagnosed with your chronic illness.

  1. You will feel overwhelming grief
    This one was a hard one to get my head around.  The first few weeks after my diagnosis I couldn’t stop crying. I kept thinking about all the things I could no longer do. I couldn’t run, which was my favourite thing. I couldn’t go out dancing. I couldn’t do the things that made me happy. The things that made me, me. They were gone The old me was gone. All I could think about was the things I probably could never do again. The things that I was going to do in the future that I would no longer be able to do. Thinking about things that I’d never even considered doing but now I couldn’t do them it destroyed me. I grieved. For a very very long time. For who I was. For my old body. The Rebecca pre-diagnosis. She’s gone. She’s never coming back. I still find that hard to come to terms with even now. But the grief for your body and your life pre-diagnosis is perfectly normal. But never spoken about. I have never heard any kind of health professional mention it. But it was the first emotion I ever went through. An emotion I’m still going through. But what I have learnt though is that the grief doesn’t have to be all negative. The process enables me to accept who I am now. Saying goodbye to who I was and hello to who I am now. My new life. My new body. The new Rebecca. So if you feel grief, don’t beat yourself up by thinking you shouldn’t feel these things. Feel it. Live it. Cry it out. Scream it out. But say hello to the new you, give yourself a big hug and know that you’re still the same person you were before.
  2. You will feel sad
    Similar to the feeling of grief, you’re likely to feel sad and again, this is perfectly fine!! I spent an entire year feeling sad before I could admit it. I called it my ‘situational sadness’. I was sad because of the situation I found myself in. Sore, stiff, off work, stuck in bed, depressed. I tried to fight it for so long. I thought I was supposed to just get on with things as they were before. It never occurred to me that I was ok to be sad because I had arthritis. But of course I was! It’s ok to cry. It’s ok to say you’re not as happy as you were before. It’s ok to admit this to not only  yourself but other people! Sadness isn’t a weakness and ultimately, sadness will pass. If you want to cry, cry. Sometimes that release of emotions through crying is all you need to feel better.
  3. Painkillers will be your best friend
    I never knew I could hurt so much. I didn’t know what pain was. Doctors and specialists will talk to you about what medication to take but they don’t tell you that sometimes you’ll be in so much pain you can’t even get out of bed to go to the toilet. I felt like I had to just suck it up and get on with it. I was so busy thinking about the pain and the limitations it was giving me it didn’t always occur to me to take painkillers. But you know what? PAINKILLERS CAN BE AMAZING! Don’t feel guilty for taking them. Don’t think that they make you weak. Don’t think that you shouldn’t be taking them and that you should try and be brave and fight through it. Take them painkillers. Keep some with you at all time because you never know when you might need them. Painkillers will become your best friend. Love them and they’ll love and help you back.
  4. People will annoy you
    I could make a whole blog post just about these people. I may well go on to do so. Be prepared to hear “you’re too young for arthritis” “it could be worse” and “ahh I’m sure it’s not really as bad as you say”. I’m not too young, it’s already pretty bad and actually, I only tell you about the tip of the iceberg. These people will annoy you. You know who else will annoy you? People who know what’s caused your condition and know just what can cure you. “It’s because you drink milk, become vegan and you’ll be cured!” “I sell products through my pyramid scheme business that will cure you” “Have you tried taking a supplement for joints? I had a sore knee once and since I started taking these tablets it hasn’t come back”. Whilst I’m sure a lot of these people do mean well, it really annoys me. I don’t care if your friend ‘has it worse than me’, you don’t know my situation. Also, I’m going to eat and drink whatever the hell I like. NOTHING caused this. NOTHING will ‘cure’ this. Learn to smile at these people and give them some kind of sassy, but polite response.
  5. You will be ok
    That’s right, you will be! It might not feel like when you’ve just been diagnosed, and there’s no real telling how long it will take for you to get there as everybody is different, BUT YOU WILL BE OK. You will smile again. You will enjoy life. You will laugh and love and have fun. You might be a bit slower than you were but the good times will return. Embrace the new you. You’re ok.

Rheumatology. Expectations vs Reality

Rheumatology Expectations vs Reality

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

It was a disaster.

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

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

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

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

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

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

The Expectation

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

The Reality

I was ignored, dismissed, argued with and humiliated.

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

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

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

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

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

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

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

Clearly working. Clearly working. Clearly working.

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

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

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

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

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

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

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

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

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

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

Negatives: Everything else.

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

So where to go from here?

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

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

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

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

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

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

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

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

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

But mainly……

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

It’s ok to not be ok

Hey everyone, hope you’re all getting on ok. I’m about to have my third piece published on The Mighty! I don’t think it will be on the website for a few more days, but here it is below for you. I’m sure that a lot of you can relate, would love to hear your thoughts on it.

 

It’s ok to not be ok.

How are you today?

Ok? Alright? Fine?

But what if you’re not ok today? Would you feel as comfortable replying to that question with “actually, I’m pretty down today, I had a terrible night’s sleep filled with pain and I’m on the verge of tears?” Probably not.

I’m guilty of simply replying ‘alright’ every time I’m asked how I am. On a day with good mobility, minimal pain and with a high level of energy? I’m alright thanks! On a day where I can’t walk very well because of my psoriatic arthritis and my ankle has become so swollen so quickly I’ve had to cut the bottom off my trouser leg so that it fits? I’m alright thanks!

Those of us with chronic illness often think that we must be strong all the time, that we need to show the world a brave face, to make people believe that everything is ok with us. It’s easier that way. It saves us from having to answer questions about what is wrong with us. It saves us from having to explain for the 100th time what we’ve been diagnosed with. It saves us the blank stares from people who don’t quite understand what’s wrong with us and who think fatigue is the same as being tired from a lack of sleep. Saying that we’re ok is the easy option. But it’s exhausting having to keep up the act. We’re all exhausted enough as it is without having to pretend that everything is ok.

Here’s the thing. It is ok to not be ok all the time.

I shouldn’t feel guilty for hurting and for being in pain. I shouldn’t feel guilty for feeling a little bit low sometimes. I shouldn’t expect to be ok all time. And neither should you.

There is no shame in admitting that things are hard. There is no shame in asking for help. There is no shame in not managing to go somewhere or managing to do something. It’s even ok to sometimes feel that life is falling apart. A chronic illness is life changing. It took me a very long time to come to terms with this, and truthfully, it’s still a battle. For every one good day I might have where I feel super happy and confident about my life and my future, I have two other days where life feels a struggle and I am fearful for where my life and my body might be heading. But it’s ok to feel like that.

I have also developed what I like to called chronic illness anxiety. It’s a condition that I have totally made up but one that I’m sure lots of us can relate to. It’s the anxiety caused when thinking about how your chronic illness will impact upon a certain activity or social situation. Before my diagnosis I wasn’t a particularly anxious person. Sure, I had the odd worry like everyone else, but I enjoyed a generally anxiety free life. Now? I suffer from chronic illness anxiety, caused by my crippling arthritis most days, especially on bad days or during a flare. It’s often the first thing I think of in the morning and the last thing I think of at night. From trying to work out how many hours I can manage at work based on how good a sleep I managed the night before, to trying to establish if I should go out with friends on medication day or if I’m better off staying at home to rest up and sleep it off. Everything seems to worry me. But it’s also ok to feel overwhelmed by it all. I have two diaries. One for general day to day activities and one purely to keep on top of my medical appointments. I don’t know if I’m coming or going most days. Blood tests. Consultant appointments. Physiotherapy. Podiatry. Doctors appointment. More blood tests. Not to mention trying to keep on top of taking all my numerous medications at the correct dosages. But it’s ok if it takes a while to get your head around everything that is going on. It’s ok if things seem overwhelming. It’s ok to have the odd worry here and there.

On my down days, I often wonder why I occasionally feel as low as I do. I feel guilty for not feeling ok and for feeling a little bit sorry for myself. I forget that I am ok to feel like this sometimes. My body has drastically changed and with it, my entire life. I like to think of these low moments as ‘situational sadness’. I feel this way because of what is happening to my body and what it is putting my mind through. I feel this way because one year since I developed arthritis, I’m still trying to come to terms with my new body and my new life. I am sad and a little bit low sometimes because of the situation that I find myself in right now. I don’t know for how long I’ll feel like this, but what I do know, is I’m ok to feel this way. It won’t last forever. I will be ok.

So, the next time I’m asked how I am, I’m still going to reply ‘I’m alright’, because I am. I’m alright.