Friday, 5 October 2018

Chronic Fatigue Syndrome

What is CFS?
 Chronic fatigue syndrome (CFS) is a debilitating disorder characterized by extreme fatigue or tiredness that doesn’t go away with rest and can’t be explained by an underlying medical condition. CFS can also be referred to as myalgic encephalomyelitis (ME) or systemic exertion intolerance disease (SEID).

So, what's it like?
I am tired, all the time. Think of a time where you've been felt absolutely whacked, maybe you'd been on a day out or travelling somewhere for a long time? Normally you would only feel like this every so often and it may take a day or so to recover, but imagine feeling like it all the time, and it just becoming normal?
I get bruises everywhere, all the time, for no reason. I'll wake up and my legs will look like I've been attacked! I can grab my arm and within a few hours have finger print shaped bruises, and it doesn't look great.
I am really sensitive to temperature change, especially the cold. If the air conditioning is on at work, I will sit there in my coat shivering whilst everyone else is a comfortable temperature.
Loud, sharp noises hurt me. You know when you hear a loud bang and it makes you jump, just like that but to the point where it physically hurts!
I catch just about every bug/virus going. If there's something going about, I'm going to get it. Oh and any recovery time from these illnesses is doubled.
The worst by far has to be the joint/muscle pain. I've always got some form of a bad back, my legs always feel like I've run a marathon.
Some days just feel impossible, when you feel so rubbish physically, it affects you mentally too.

CFS is something Doctors are all too reluctant to diagnose, but they have their reasons. It's a long drawn out process of elimation. They have to be sure the symptoms aren't part of any other potential conditions before they can diagnose CFS. There are thousands of things the symptoms of CFS could also relate to so it can be a difficult, frustrating process not just for yourself but for the medical professionals as the responsibility falls on them to tell you what's wrong with you! During the process I've discovered I am deficient in Vitamin D, and probably other things we cant put our fingers on just yet too! But that as a whole isn't the answer to everything. So as time goes on, the more you find/don't find the more complex it becomes.

Unfortunately, there isn't really much as far as treatment goes for CFS. It is all about management and making sensible decisions and learning to adapt your life to living with it. It's something I've already had to learn to do with my epilepsy, but this is whole different kettle of fish. This can't be controlled with medication. Instead its gradual, specialised exercise plans and therapy. I've had enough therapy in my life, and quite frankly sometimes the thought of exercising with the pain I get is devastating, but then I sound like I don't want to help myself, right? Feels like a never ending battle. I refuse to take painkillers every day and constantly feel like a zombie but sometimes that's the only way to get through the shifts at work.

I've become so good at putting on a brave face, sometimes you wouldn't even know half of the above was going on unless I moaned about it. Apart from the fact I sleep, a lot. In all honesty I don't manage this well at all. I'm in denial and try to think I can be like everyone else when in reality that just isn't the case. I'll have a wild weekend and stay up late, maybe even go out on Saturday night and do something Sunday during the day. Sounds normal doesn't it? Reality is I'll be suffering the consequences until at least Wednesday.
The biggest problem with CFS is people are so ignorant towards it, you cant see that someone is suffering from it so from the outside they look perfectly normal. I for example would seem fine to anyone else, I live a seemingly normal life, I go out when I want to, I go to work etc. But the consequences I deal with as a result of trying as hard as possible to just be normal are so overwhelming. There are some days where I'm too exhausted to get out of bed, to function and to go to work. I'[m so scared of losing friends I refuse to let it get in the way of things I want to do, but ultimately I suffer as a result. I refuse to cancel on plans with a friend because I'm too tired, so I'll go out with that friend, and feel horrendous after.

I'm such a stubborn person, most of the time I persevere and carry on like nothing's wrong. I'll do everything I want/need to do and just take the hit. I fear that this way of life for me won't last for long though if I don't find better ways of management. I'm probably just making myself worse, not allowing my body/mind the time it needs to recover, which although hard for me to accept, is a lot longer than most. The truth is, I feel shit most days but just push through it.

I am still researching and learning lots everyday about CFS and some days are better than others. On my good days I push myself and then the not so bad days turn into impossible days... it's unhealthy but my thought process ends up being 'today is a good day and I must not waste it'.

1 comment:

  1. Hi Lisa your blog is very moving. Am here for you always x mum x