Me & Chronic Illness

Oh boy, this is going to be a long post! Please bear with me, as all of this is rather confusing and muddled – my life is never simple yet alone my health! For those who have followed me a while, you will know that roughly 2 years a go my life changed forever. Fast forward a year, and I was finally diagnosed with two illnesses – Ehlers Danlos Syndrome and ME/CFS.

A Bit Of Background

An important thing to bear in mind before I start this story is that I have had problems with my joints since I was 10 years old – particularly with my feet. At the time, I was diagnosed with Plantar Fascitiis and was then dismissed as being attention-seeking by my GP. The next 10 years were a muddle between my ankles collapsing, muscle fatigue and pain, a shoulder injury, a wrist injury, and the list goes on and on. When I was 20, I starting getting episodes of unbearable knee pain. Knee pain so significant that I couldn’t walk for days, had to miss University lectures, and had to miss work more than once. I knew something was wrong, that no normal young person should be suffering in this way. A couple of blood tests later, I was found to be severely deficient in Iron and Vitamin D. Taking supplements for a couple of months and there was no improvement in my condition. From then, it’s a blur of various NHS GP’s and multiple diagnosis of depression. Being incredibly stubborn that I am, I chose to continue to seek an explanation for my symptoms – a physical reason.

Admittedly, this is now the confusing part. During the latter mentioned process, I got sick with some kind of virus. No-ones sure what, but it was similar to a flu. Weeks went by and I didn’t bounce back like normal, I still felt exhausted. This little surprise complicated what was already going on, leaving both me and my doctors very confused. I decided to take the next step and go to a private practise rather than relying on the NHS, hoping that they could give me some answers. Eventually I persuaded them to refer me to a General Consultant, who was… incredible. One appointment later, and he immediately recognised the signs and diagnosed me with Post-Viral Fatigue Syndrome (a form of ME/CFS) and Hypermobility Ehlers-Danlos Syndrome.

What is EDS?

Ehlers-Danlos Syndrome, oh Ehlers-Danlos Syndrome. EDS is a group of connective-tissue disorders, all focussed on mutations of the gene that produces collagen. Connective tissue is responsible for supporting skin, ligaments and bones, largely acting like glue. With the Hypermobility type of EDS, the joints are affected by having a wider range of movement than they should.

In most cases, this causes dislocations and subluxations. The lack of support within the body leads to muscle fatigue and joint pain. There are also other symptoms such as easy bruising, gastrointestinal dysfunction, and mild mitral valve prolapse.

You regularly see ‘bendy’ people on talent shows like Britain’s Got Talent, demonstrating being ‘double-jointed’ however it is important to note that this doesn’t necessarily mean they have EDS.

How does it affect me?

 I’m only fairly mildly affected so far, my legs being the worst affected. I have unstable ankles, the ligaments just don’t function properly, so I have to wear lace-up braces to keep everything in place and to help me to walk. I have chronic knee pain which means it is sometimes too painful to walk. My hips are very hypermobile, which makes my whole leg feel unstable, and means they are likely to dislocate in the future. I’m working with a Physiotherapist to increase the muscle tone in my quads in a bid to stabilise my legs. The hypermobility causes my muscles to seize up, so I have regular sports massages to unknot everything.

What is ME/CFS?

Chronic Fatigue Syndrome is also known as Myalgic Encephalomyelitis, and in America there is a movement to rename it Systemic Exertion Intolerance Disorder. As the name suggests, it is characterised by debilitating fatigue, which is not improved by sleep or rest. It’s a different feeling from just being tired, the fatigue makes it very hard to do everyday tasks. It’s normally made worse by exertion, which leaves you with ‘payback’ that could last for an hour to days later. 

How does it affect me?

I have CFS/ME fairly mildly compared to others. I can still just about get on with my normal activities, still go to University. I normally get my ‘payback’ about an hour after, and it hits me particularly hard after being in Uni. I get home, and I crash. And by crash, I mean sitting down and not being able to move for another 3 hours at least. There is no magic pill to take to make me better.

Now What?

Hooray, now I know what’s wrong I can work to get better! Unfortunately, I’m not that lucky. Neither illness has treatment or a cure, mainly due to the lack of research into the cause of either. But, it’s ok. It is what it is, there’s no point crying over spilt milk. Just because I’m sick, it doesn’t mean that I’m not going to have an incredible life. And you know who’s taught me that? The absolutely increadible people who make up the spoonie community on social media. It’s been a whirlwind couple of years, but they’ve supported me to come to terms with it all, and to continue living. I owe them a lot, I’ve certainly made friends for life, and hope to make more along my journey.but they’ve supported me to come to terms with it all, and to continue living. I owe them a lot, I’ve certainly made friends for life, and hope to make more along my journey. but they’ve supported me to come to terms with it all, and to continue living. I owe them a lot, I’ve certainly made friends for life, and hope to make more along my journey.

I’m currently in the middle of a couple of referalls, so will hopefully be able to post soon on how they have gone.

Bye bye for now,

Nikii xxx