Bad Luck Girl

Of all of the ailments that plague me, the most troublesome has got to be my chronic bad luck. I trip, I fall, I drop, I bump, I lose, I break, I tip, I spill, I forget. Clumsiness and forgetfulness come hand in hand with fibromyalgia. For a while I thought it was just me. I would always say “I see an object, acknowledge it, avoid it, and walk into it anyway.” It was only until I went to a fibro clinic did I realise it was in fact a symptom. The physiotherapist who ran the clinic described it in almost the same words, and suddenly my clumsiness was validated. It wasn’t just a poor attention to my surroundings. It was a real and valid symptom, and not my fault. As for forgetfulness, that is attributed to fibrofog.
However fibromyalgia cannot explain why mine will be the train ticket that doesn’t work in the machines, or why I always set off the detectors at airports, seemingly without any metal on my person. My misfortune is like the rain during monsoon season, constant and relentless. I often wonder if I was cursed at birth or was I just a really horrible person in a past life? Maybe I’m just a giant, human shaped magnet attracting all the bad luck from a thirty mile radius.
It started as somewhat of a joke. I consistently drew the proverbial short straw. Constant eye rolls and sighs of “typical”. But then it grew into a trend. Something that would work perfectly well for everyone else would fail for me. But now it’s hard to always laugh at something that causes so much discontent.
I was never particularly superstitious, but now I find myself looking for ‘lucky’ objects to keep with me ‘just incase’. A couple of months ago a cracked mirror nearly brought me to tears. I don’t believe in it as such, but something in the back of my head constantly says “what if?” With the luck I have, I don’t want to risk it.
For the most part, my bad luck doesn’t impact my life greatly, more often it’s just an annoying inconvenience. Although as these inconveniences increase I find myself wondering if investing in a zorb ball to wear around the house would be a good idea. For now, all I can do is hope for a break in the bad luck cycle. Not necessarily good luck, but average luck would be nice. But a day in which I don’t walk into something could only be a dream.

Happy 1st Birthday!

What a year! One year ago today I wrote my first blog post, inspired by anger and frustration (as are most of my posts) I decided to give the world the resource I wish I had when I was first diagnosed. As if being a teenager isn’t hard enough my body took it upon itself to age 60 years. Days were filled with school and pain, exams and pain, hormones (aaaargh!) And pain along with a whole host of other things that are your world between the ages of 13 -19. Then when I was 18, my body kicked it up another notch. Not content with the pain I was already in, a back injury left it difficult to walk and I adopted a walking stick as a permanent extension to my arm. I started university and subsequently dropped out a few months later, I pretty much only left the house to go to the doctors or my boyfriend’s house. Basically my life had hit a low point.
My mam had taken me swimming, and after half an hour of bobbing along I got out to shower. I used the disabled washroom as I had a few times before, there were aids for me and most importantly a chair to sit on whilst showering. It was when I could barely lift my arms to wash my hair out of pure fatigue that I started thinking how unfair it was that this was my life now whilst my friends were out enjoying life and following my dreams. I started thinking how I could explain the baffling world of fibromyalgia to those fortunate enough not to have it. But to do this effectively I had to expand on my initial thought which was ‘it sucks.’
Thus, the Pain Princess was born! I told my story because it needed to be told. It is sad and funny and strange and tumultuous but I felt better for telling it. Truthfully, I didn’t think anyone would ever read my blog. Why would anyone care what I have to say? Why would someone be interested in the world according to me? – I still think this now, it baffles me that fibro folk from all over the globe have decided to listen to what little old me has to say! I wanted to validate what others were feeling about their condition but instead I received a whole heap of validation from beautiful strangers. Wonderful people like you.
There are a lot of things that are really rubbish about fibromyalgia, A LOT! But because of this truly sucky condition, I have made hundreds of friends on support groups and through my blog, none of whom I have ever met but they’ve supported me through the toughest, roughest of times. We are all connected by this stupid thing called fibromyalgia, whether we suffer from it, or just know of someone that does. And for this connection I am grateful and thankful to fibro.
Most importantly, I want to say thank you to you, my dear readers, the friends I have never met, but no less than true friends. Thank you to the fibro warriors that encouraged me to tell my friends and family that I was writing a blog. Thank you for believing in me when I didn’t, and thank you for making this blog a success.

Much love to you all 💕

Housebound and Hopeless

Just before the beginning of the new year I developed what seems to be costochondritis. For those unsure if that’s a condition or magic spell, sadly it is the former. It’s an inflammation of the breast bone causing chest and rib pains, sometimes mistaken for a heart attack. Fortunately for me, my pain was far enough over to the right that I didn’t worry it was my heart, and having a friend that suffers with this chronically I had a pretty good idea what this pain could be.
Since developing fibromyalgia I’ve always had tender ribs, even a small amount of pressure caused an immense amount of pain. I was not unfamiliar to the pain of the constricts of a seatbelt. It was often uncomfortable and painful even if an emergency stop caused the belt to lock, but the pain usually disappeared within 10 or so minutes.
I was travelling to Ireland by coach, and as per usual the prospect of a long trip had my anxiety spinning out of control. “I’ll be fine when we get there.” My catchphrases for such journeys. The cold wasn’t helping my fibro and coupled with the stress, my body was particularly susceptible to pain. Unfortunately for me, our coach had particularly tight seatbelts, at first I worried it wouldn’t fit, but it was the belt, it was so stiff. It took a while to drag enough of the belt over me to click in. I can’t say I noticed the pain at first, discomfort definitely, but I expected that. I’m not really sure what then caused so much pain, did the coach break suddenly? Or did the continuous tight pressure push my discomfort into pain. The one thing I do know, in the weeks following I was taping heat pads to my chest and was not able to lift my right arm up.
Since then I’ve had an electric heat pad over me like a bib and it’s been on me pretty much every waking moment that has access to a plug socket. The pain has been bad, even for someone who is used to daily pain, this was really bad, but the worst side effect was hopelessness. When it was bad I couldn’t use my right arm, my dominant arm. I couldn’t cut up my food properly, brush my hair, dress myself easily and I was pretty much housebound.
My body was in too much pain to do anything but my brain was still in a semi-functional state. I yearned for the times where my thoughts were so clouded with fibro fog all I could manage was a day in bed watching Disney films. This was the ideal time to have fibro fog. But my brain had other ideas. Without any mental stimulation my emotional state was spiralling down. I over thought everything, simple messages from my boyfriend turned into a minefield of hidden meanings. I was paranoid and I’ve regressed back to being afraid of everything and everyone. Talking has become daunting, the outside is scary. I’ve been out a handful of times, always accompanied by my parents and still the internal shaking feeling was always present.
Without jinxing it, today my chest has been a little better, and has taken a back seat to my usual ailments. I’m going back to my volunteer work tomorrow. I’m very nervous there’s no denying it. Even on a good day walking into a classroom full of twenty odd seven year olds is intimidating, but tomorrow is going to be an even bigger challenge. I never realised how much isolation can effect your mental state, I wish I’d never found out to be honest. But now I have, fingers crossed I’ll be me again soon.

Fibromyalgia in the Media

The first doctor I saw after my diagnosis told me fibromyalgia didn’t exist. I was in my early teens about seven years ago. Over the years I’ve encountered many sceptics, from those who have denied it’s existence outright to well wishers telling me they know of someone who had a “touch of fibromyalgia” who almost always has been miraculously cured within a few weeks.
Historically, fibromyalgia has been viewed as merely an inconvenient condition or worse, a scammers dream come true. It’s very difficult for fibromyalgia to be proven through tests, a truly invisible illness. A diagnosis is reliant on symptoms dictated to a medical professional, in conjunction with tests ruling out something “more serious.” It’s the type of condition a lot of people associate with an excuse for laziness, or more worryingly an easy way to claim benefits either as disability payments or to subsise the inability to work.
This stereotype is continually perpetuated in the media. Whether it’s an episode of ‘House’ where pain medication is substituted for a placebo which eased the patient’s symptoms. Or the comedy film “Identity Thief,” which depicts Melissa McCarthy, dramatically falling to the floor crying out about her Fibromyalgia. As much as I adore and admire her work, to me, this scene was problematic. As the title suggests, she plays a character who has stolen multiple identities and supports her lifestyle by conning and scamming the people around her. Although not expressly stated in this scene, the background of the character adds to the suggestion that Fibromyalgia is a made up illness or at the very least a convenient condition, used to get out of something or to gain sympathy.
A feature segment on ITV’s popular program ‘This Morning’ where a lady claimed that dressing as a doll helped her deal with Fibromyalgia. The hosts asked questions in depth about her clothes, her shoes, how much she had spent on her collection. The one thing that was missing… proper questions about fibromyalgia. Quite rightly this received a lot of backlash from the Fibromyalgia community as it was seen to trivialise the condition and omit all the relevant factual information or delve into the way fibromyalgia can impact a person’s life. I agree with the interviewee, ‘distractions’ can be a great way of coping with pain, but in a time where the media seems to be against us, I worry how this will impact the fibromyalgia community as a whole.
In the relatively short time since I was diagnosed with fibromyalgia, the condition has gone from extremely obscure, to something people have at least heard of. Not only has it become more widely recognised, funding and research is helping sufferers better deal with the condition and it’s limitations. In many ways 2018 is the year of acceptance. The terms ‘invisable illness’ or ‘hidden disability’ are regularly used and mental health awareness seems to be at an all time high. Maybe one day Fibromyalgia will be taken more seriously, and we won’t have to ‘prove’ our pain. Maybe it will be recognised as the life altering and in many cases devastating condition it can be. I for one certainly hope so.

Marshmallow

I like to compare myself to a marshmallow. I’m gooey and squidgy on the inside and on the outside – pretty much the same. I don’t have a thick skin, so like a marshmallow my exterior is only slightly more resistant than the inside. Oh and in the sun I go pretty pink.
I’ve always been a sensitive soul, I take things to heart. Even things from people I completely despise cut deep. Being young with an invisible illness, I need to develop a thicker skin, thicker than most people. People are quick to judge others, especially if you don’t ‘look’ disabled.
The truth is, most of us with invisible illnesses become pretty good liars. We hide the pain from the outside world. Like Elsa we “conceal don’t feel” (if only I underwent a glamorous transformation every time I had a flare up.) It’s not easy to hide the pain, it’s for the benefit of others mostly. People don’t like seeing others in pain – understandably so. However not being visably in pain, causes others to doubt my credibility. I’m seen as a hypochondriac “there’s always something wrong.” People get fed up of me cancelling plans or not being able to do everything an able bodied person can. Yes there’s “always something wrong” it’s called Fibromyalgia, it’s always there and will always be there. Also, if my condition is annoying to you, imagine how annoying it is to me.
I’ll be the first to admit I’m pretty accident prone. If there’s an object near me, you can guarantee I’ll walk into it or trip over it. On top of the symptoms of fibromyalgia I’m usually covered in bruises and potentially limping. I’ve always been clumsy, although it’s a symptom of fibro, I think it’s just a symptom of being me.
You can’t argue with a black eye, an arm in cast or a missing limb. You can argue against generalised pain, anxiety, nausea, fatigue, headaches and pretty much all the symptoms of fibromyalgia. Just because you can, doesn’t mean you should.
I recently used a mobility scooter for the first time in a supermarket. My body was fatigued, my feet turned inward and I started waddling like a duck – a tell tale sign that my body has had enough. I thought about using a wheelchair but my body was too fatigue to self-propell. I’m well aware of the stereotype of a mobility scooter user. It’s assumed that you’re either lazy or too fat to walk or both. They think of the people in Wall-E flying around in futuristic vehicles that are reminiscent of a mobility scooter. As someone who is more Michelin man than Barbie girl I knew what people were going to think. Although no one said anything derogatory to me, I could feel their judgements. It seemed to me that people went out of their way to make it difficult to get around. A lot of it was probably paranoia, I felt self conscious using the scooter so I over analysed the body language of other shoppers. But at least some of it wasn’t my anxiety getting the better of me.
I love the phrase “those who mind don’t matter and those that matter don’t mind,” and most of the time I’m surrounded by the people that ‘don’t mind’. But I still find myself caring deeply what the stranger I passed on the street thinks. My marshmallowy mind muses constantly on other people’s thoughts but really, why should I care? Do their doubts make my pain any less legitimate? No, then why do they matter so much to me? It’s very difficult not to take it all to heart, I have tried not to care what others think but I just can’t seem to do it. So I am trying to shed the marshmallowness in favour of another of my favourite foods. Goodbye Miss Marshmallow, hello Tough Cookie!

Sensory overload

Sensory overload is a condition often associated with forms of Autism. In recent years we’ve seen more ‘autism friendly’ movie screenings and shopping hours, as well as more children wearing ear protectors. As a symptom it is becoming more accepted but not necessarily more understood.

Many of us with fibromyalgia also suffer with sensory overload, ranging from a mild dislike of loud noises to be effectively isolated because of it. For me, the biggest issue is sound. It doesn’t affect me in the same way all the time. Some days I could enjoy busy bonfire night celebrations, the bang of fireworks, the smell of bonfire smoke and toasted marshmallows and people rushing around to find the best views. Other days however, I’m stuck in bed with the TV volume and brightness turned right down and hiding under the covers.

Earplugs are a staple in every bag I use. I buy them in big multipacks for when I inevitably lose one. I use them in every situation imaginable. In the cinema, at home, in a restaurant. I could be wearing an elegant ball gown (theoretically – can’t see that happening any time soon) and you’d still see the bright orange sponges sticking out of my ears.

It does embarrass me, having to use them, but I feel worse thinking other people will think I’m being rude. The sound of loud, shrill, crying children, is one of the worst I’ve encountered. It’s like it burrows into my head and consumes my thoughts. It is a sound I cannot ignore or tune out. I’ve tried. It’s like a pneumatic drill, hammering into my brain. Either I remove myself from the situation, which isn’t always possible or I put the earplugs in.

I always worry the child’s guardian will feel bad because they can’t stop their child’s crying and the practically luminous orange earplugs are hardly inconspicuous. They’re like bright traffic cones popping out of my ears, signalling that I am uncomfortable. I understand that the parent can’t always stop their child crying, it’s not their fault, and it’s not their child’s fault either, it’s just what children do. I would hate to think that they feel uncomfortable because I’ve had to put my earplugs in, but the sound is so uncomfortable for me that I have little other option.

My sensory overload symptoms ebb and flow in correlation to my anxiety levels. If I am calm and feel safe, I am much more able to deal with everything. If I’m having a panic attack or if my anxiety is bad, it is like the world has been turned up to 100. Whispers seem like screams, a sepia environment is as bright as children’s TV. Colours are garish and intense. Soft feels rough, cool feels like ice, and warmth is like fire. Sensory overload can be debilitating. Like living in a nightmare where everything is distorted and confusing and just too much.

Sometimes I have to wait it out. Sometimes I have to hide in a corner or under a duvet until it’s all okay. Sometimes I have to fight against the people telling me “it’s just a noise.” At that moment it is not just a noise. Not to me, not to millions of other people who deal with the symptom. It’s a sharp pain, it’s a gunshot, it’s a fire alarm, it’s an explosion in the ear – it’s only a creaky floorboard.

Fibromyalgia Fashionista

As I’ve mentioned in other posts I’m a bit of a fashion fanatic. To quote Carrie Bradshaw “I like my money right where I can see it.. hanging in my closet.” I always had a bit of a ‘no pain no gain’ attitude to fashion, high heeled boots, tight skinny jeans, glittery mesh fabric that was beautiful but didn’t half itch, that sort of thing. Although I tried to keep up-to-date with current fashion fads to an extent, I maintained my own sense of fashion. A sort of classic and vintage style. Think Audrey Hepburn but a bit more casual and a lot heavier.
A lot of people don’t understand how much fibro can effect your life. Symptoms have a knock on effect on life, family, work, confidence and less obviously style. Comfort becomes key, which can in turn mean boring clothes, but I’m not prepared to join the beige brigade just yet. So for all my fellow fibro fashionistas I have compiled a few tips that help me stay feeling like me, whilst being (mostly) pain free.

I know a few people that swear by FitFlop shoes, but as a self proclaimed bargain hunter, I just couldn’t justify the cost. With many of the shoes upwards of £80 I was reluctant to part with that much money. Luckily for me a wonderful thing called a ‘sale’ was invented! With my first purchase still over £40 it was still fairly pricey but based on the reviews I thought I’d give them a go. They were comfortable, stylish and well worth the money I’d say. A few years ago, when first investigating the option of FitFlops they all seemed a bit dowdy, they looked ‘comfortable’, not appealing to a teenager. Now they are as attractive as they are comfortable, with different styles to suit all tastes.
Like many chronic pain sufferers I’ve put on a fair amount of weight, mostly from the cocktail of medications I take and a little because I have an insatiable addiction to chocolate. It can be very difficult for plus sized people to find flattering and affordable clothing, but when you add in the fibro restrictions it can seem near impossible. For me, M&S or Next provide the most comfortable, affordable and fashionable plus sized clothing. I tend to buy clothes a size up nowadays, and soft fabrics are a must. Trousers I always buy a size up to allow room to move, and stops buttons, zips or elastics digging into my skin. Stretch fabric is also essential, it’s much less restrictive, comfortable and allows me to move as ‘freely’ as my body allows.
Leggings and long comfortable tops or jeans and a cosy jumper are my go to outfits.

When occasionally I decide to dress up, I choose ‘Snag’ tights. At Snag they have made it their mission to cater to all body types, tall or short, big or small, they make tights to comfortably fit everyone. They make tights with different sized waistbands rather than just changing the length, making them better fitting for a cornucopia of shapes and sizes. Personally, I like my tights to be big, the bigger the better. If I can pull them up to my shoulders I consider that a win. I bought the biggest size, and they reached just above my waist, so when they started to fall down a little (as all tights do) I was able to avoid the webbed effect turning me into a penguin. They slipped to just above my hips and rested there for the remainder of the day. Comfortable, well fitting and affordable – certainly gets a thumbs up from me.

The garment I have had the most problems with have to be bras. Underwires are a complete no no for me. My ribs are so sensitive that the wires would be agony for me. After disbanding with wired bras I first tried so called comfort bras. Whilst they are comfortable they’re unsupportive and quite often a rather unattractive shade of beige. Then I moved on to non wired sports bras. These were better I must admit. I found Matalan a good source of sports bras. The issue I found with them, was that they were often so obvious. You would either see the Racer back or the chunky straps poke out of my clothes. Whilst this isn’t a major issue, it can detract from an outfit when you want to look special. The answer? Bralettes!!! An amazing invention by the comfort fairies, and they are often so pretty. I struggled to find one in my size, but recently Primark have begun to stock non-wired bralettes in large bra sizes, making it more accessible to more people. They come in a variety of colours, with pretty lace and other embellishments. Finding these just helped me feel a bit more normal again. I didn’t have to stick to boring plain underwear, which was often expensive and ugly. These bralettes cost me £6 each and they were far from ugly. Having such a wide choice took me back to days before fibro.
As I am fairly lucky and don’t have too many problems with my clothes, I called in the cavalry. My Fibromyalgia Facebook family – Fibromyalgia Warriors Cymru (FWC) who have very kindly let me share their stories and suggestions.

“I can’t be doing with buttons and zips. I suffer with my wrists and arms so trying to pull up a zip or doing buttons on a shirt is a toughie for me. Have a dress on today and funnily enough there’s 2 buttons at the back of my neck, I’ve been walking around with the buttons undone all day, but the lovely girls in the chemist decided to do them for me when I went to collect my tablets!!!!” – Sara Preece FWC

“I think fastenings like buttons and bra hooks can be a struggle and getting shoes on and off. I can only wear cotton as I find anything else makes me sweat like Lee Evans! Plus of course they have to be low care, I’m not going to iron or hand wash things! I pretty much live in leggings, t-shirt bra, big granny knickers and loose fitting pull on tops with no buttons or anything and my all time fave.. pjs!!” – Tesni Rivers FWC

“Shoes are a problem, I only wear orthotic flip flops or ugg type boots. Leggings and loose tunic tops in cotton from Seasalt or Joules (On mailing list so sales and special offers) and pjs. Comfort over style anyday!” – Jo Jones FWC

“If you can’t cope with wired bras, buy maternity, feeding or post surgery bras. These are soft and supportive, whilst being pretty!” – Louise Jane FWC

“Can’t wear heels anymore now , so wear them when I’m in my (wheel)chair” – Sammi Delphia FWC

“I was born with a club foot so I’ve always struggled with pain when walking. I’ve had multiple operations to try and help the problem but it hasn’t done a lot. No matter what type of shoes I wore, none reduced the level of pain. I’ve recently bought a pair of Fit Flop trainers and they’re probably the best ones I’ve tried. They’re really comfortable and help reduce pain. They offer a good level of support and adapt to the shape of your foot to add extra comfort.” – Jacob Morris*

Here are a few links that might help you.
http://www.fitflop.com
snagtights.com
http://www.primark.com

Some retailers of plus sized clothes
http://www.next.co.uk
http://www.marksandspencer.com
http://www.jacamo.co.uk
http://www.simplybe.co.uk
evans.co.uk

If you want some money back from shopping sprees, check out Quidco and Topcashback using the links below. They offer cashback for a multitude of websites for a multitude of things. **

https://www.quidco.com/user/8048227/

https://www.topcashback.co.uk/ref/Member220582316324

Big thank you to everyone that shared their stories and advice. Please feel free to comment with your own suggestions or problems ☺️


*Not all contributers have fibromyalgia but share similar clothing requirements
**Sign ups from cashback links may provide me with additional cashback, however I only recommend products and services that I think are beneficial.