Category: disability

hEDS and Me

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Gather around it’s time for a story. Nah, I’m kidding, I just thought that would be a different and fun way tp start a blog…lockdown is clearly getting to me. I’ve used this blog a lot to write about my life with chronic and mental illness over time. It’s been an important place for me to not only get my own feelings out there but also raise awareness of my conditions.

For those of you who have been here for a while you’ll know that when I was 20 I was in a horse riding accident, fracturing 4 parts of my spine, after a long recovery I didn’t get that much better and was diagnosed with Fibromyalgia. For the past few years I’ve dealt with that and learned to accept it, but something still didn’t make sense to me.

I’ve had issues with my joints since childhood, my first set of physio was at 10, then from 15 onwards I was on and off crutches for knees that seemed to keep trying to dislocate themselves (I didn’t know that at the time), I was constantly at A&E for a simple trip or fall which would leave me not able to walk from joints feeling far more painful than a bruise, unexplained stomach issues for a long as I could remember. Fibro, in theory, is triggered by some kind of trauma so why had I had joint trouble my whole life?

Nothing was a red flag to any of us, surely I was just a clumsy kid with a sensitive stomach? Last year though I realised, while in lockdown, when I wasn’t pushing myself I’d still get these issues. I’m a part of the Spoonie community and something came up that was like a lightbulb in my head – Hypermobile Ehlers-Danlos Sydrome (try saying that quickly). It made so much sense, but I also knew I’d have to get back in front of my Rheumatologist to get any help or advice. Luckily I have a good GP who knows my history and she was more than happy to refer me, I also had put some money away so I could pay to see him, instead of waiting for a year/a year and a half to see him.

I know I was in a position of privilege to do that, we’ve been living with family for a few months so I’ve been able to put a bit of money away. I went back to see my incredible Rheumatologist, because I knew he would listen to me. Once I find a doctor that actually listens and tries to understand I try to go back to them. I felt I could go to him and say ok, here’s what’s been going on, I’ve worked out this much can you help me please?

Since getting the diagnosis I feel so much better. I know that sounds strange, let me explain. Firstly, I always, in a way, blamed myself for the way my spine broke. I’d seen people fall and get up fine, it must have been something I did when I fell for this to happen right? I told a friend this and he laughed at how ridiculous this sounds and he was right! The fact that I now know that my body is more prone to sprains, fractures and breaks, that it’s probably part of the reason it happened. In fact, the ‘self-help’ sheet that I got says to ‘Try to prevent falls and burns; fractures, wounds, cuts and bruises may take longer to heal and may scar poorly’…well there goes my plans for the weekend.

In other ways too this makes so much sense. I didn’t have the greatest school experience, in fact it was pretty terrible. I was constantly ill with an upset stomach and we could never find a reason for it – it just happened. I was in and out of A&E a lot because I’d fallen over playing and sprained a ankle or wrist. Like I said before I was on and off of crutches for years and people definitely thought I was being dramatic or putting it on. It’s a lot of weight to carry.

It all makes sense now and having that knowledge has given me a sense of calm now I know that’s going on and that this is real. I still have Fibromyalgia too, one hasn’t disappeared because of the other even though symptoms do overlap this is my life now. I’ve also come to the conclusion that I refuse to apologise for my disability or change myself to make people feel more comfortable. This is who I am.

To document my life with my illnesses I’ve also started a new Instagram account, woo! It’s to share the ups, the downs, all of it and if you’re interested you can have a look here.

If you have any questions drop them below! I’d be more than happy to answer them!

5 More Things You Should Know About Living With Chronic Pain

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Back in 2018 I wrote a blog titled 5 Things You Should Know About Living With Chronic Pain, 3 years later I’ve learnt a lot more so I thought I would do an updated post with 5 more things you should know.

Yoga doesn’t fix chronic pain

Please don’t suggest yoga, I can’t take any more suggestions of yoga. It might work for some but it won’t ‘fix’ us.

Medication isn’t taken to be pain free, it’s to be able to function

There seems to be an idea that medication makes us pain free or we like the feeling it gives us. This is so not true. Honestly, medication normally has some pretty awful side effects if it even works. I tried a lot of medication over the years and didn’t have much luck.

Someone may start with one condition and be diagnosed with others

There’s a lot of overlap with chronic conditions, we don’t always know why but it happens. Symptom crossover is a bitch. So while it may seem like people with chronic pain also have a list of other issues, it’s not for the fun of it I promise you.

Naps aren’t a luxury, sometimes they literally stop you from passing out

I have to nap. Before I worked for myself I’d get so sick that I’d go into the staff car park and try and get half an hour on my lunch break. Even last week I was really, really struggling to the point I felt faint. I gave myself an hour between calls and it turns out I really needed it.

A lot of people joke they wish they were that ‘lucky’ enough to take naps or joke about laziness. I honestly wish I didn’t have to nap, that I didn’t just crash out or have fatigue so bad at times I can’t focus on anything.

We don’t have many silver linings, but there are some!

This will vary from person to person. I find standing still for long periods of time incredibly painful which means going to theme parks/gigs etc can be really tough BUT with a letter from my doctor I can get support. It’s because of this, I can usually get a pass (some places are better than others) to go into shorter lines or be able to take seated breaks when possible. Also, having a radar key for a disabled toilet is a life saver when you’re bursting to pee. Small things that make life with a long term illness a bit less shitty.

Are there any other things you’d add? Let me know below.

Livin' The Vida Lockdown: Day Sixteen - Life With A Chronic Illness Right Now

Livin’ The Vida Lockdown: Day Sixteen – Life With A Chronic Illness Right Now

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I woke up this morning properly and about 90% of my body hurt. I knew what was happening before I even opened my eyes. I’d spent most of the night tossing and turning, fully aware of what a pain in the arse I was being but I couldn’t get comfortable. Fibro has been rumbling along during all of this but today, again, it decided to kick my arse.

I’ve been debating about whether to write about Chronic Illness right now when so much has been going on health wise. Does it matter? Fibro doesn’t put me at a higher risk (asthma is another story) but as with any illness, Fibro would put up a fight at the same time taking me longer to get better. So I’ve been relying on family, friends and food deliveries.

That said, pandemic or no pandemic I’m still living with it every day. I know things could be worse, but that doesn’t take the pain away. Right now I’m not taking my painkillers of preference as they are part of the ibuprofen group which people have been advised to avoid. So I’m plodding along with paracetamol – which doesn’t do much at all.

I’ve felt for a while I couldn’t talk about Fibro or how it is right now, despite the fact that stress is a huge trigger for a lot of people with the illness. I thought, well when people are dying I can’t seem like I’m complaining but that was incredibly isolating. Slowly, I’ve seen other spoonies say that they feel the same way.

So I guess I wanted to write for my fellow spoonies or anyone living with a long term illness to say that it’s ok to still feel frustrated, sad or fed up with your illness right now. It’s ok to struggle with your health in another way because our illnesses don’t care if there’s a worldwide crisis, our bodies are doing what they’re going to do.

Am I Disabled?

Am I Disabled?

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Being able-bodied and minded is something I think most of us take for granted until it impacts us in some way. I’ll admit it wasn’t something I thought much about myself until my accident. There’s a grey area though when your life changes in a physical or mental way that – at what point are you disabled? Who decides?

I (wrongly) thought that you had to be recieving some kind of disability assistance to be classed as disabled, however Citizens Advice states that:

“The definition is set out in section 6 of the Equality Act 2010. It says you’re disabled if:

  • you have a physical or mental impairment
  • that impairment has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities

I have a long term condition that impacts most of my life. At my worst I struggle to move, to walk, have bad fatigue and am in so much pain I can’t concentrate on anything else. I’m not looking for sympathy that’s just the way it is sometimes. It meant I had to change a lot of things and reconsider how I was going to live the life I wanted to live with certain limitations.

Disabled is such a loaded word. We’ve been shown certain images of what disabled looks like – even if, slowly, we are becoming more educated about invisible illnesses but we’re not quite there yet. People still eye me when I sit in a seat for those who need it if I don’t have my walking stick. There have been times that I’ve taken my stick when I’m feeling ok just so I don’t get dirty look.

To me, I am disabled and I refuse to be ashamed of that. I still feel strange saying that out loud – I worry about not seeming ‘sick’ enough. I worry that I won’t be taken seriously but I’m working on it. Talking about invisible illness is a great start to making sure more people are heard and understood.

Changing the narrative is something we can all do together. Instead of seeing disabled people as those who are to be pitied or always seen as ‘brave’ for simply doing things anyone else would do. Does it often take more effort? Yes. Is it annoying? Definitely.

I’d love to hear your stories below!