Sunday, 8 September 2013

How many neurologists does it take to change a lightbulb?

You have a neurological condition. A neurologist can and will make you better. Right? 


 I have huge respect for all medical professionals, I think the job they do, day in, day out to help and care for people is inspiring. However, when I became ill I realised one important fact:


Unfortunately, despite three weeks of being acutely, physically ill in hospital, my complete and devastating physical illness was first diagnosed as a psychiatric problem, and I had to undergo months of 'talking therapy'.

Being the sensible soul I am, and being desperate to get better, I promptly attended my appointments with my neuropsychologist. To sum it up, my experience of talking therapies varied from hysteria (on my part) to indifference (also on my part) and all states in between. Three things were becoming very clear.

1) I really like talking. 
2) It felt good to get things off my chest.
3) It was not making any difference to my symptoms.

After gradually becoming worse, I lost the ability to walk, talk and chew and many other unpleasant symptoms, so on the advice of the neuropsychologist, I saw a different neurologist. 

He immediately diagnosed me with the neurological disease known as Myalgic Encephelomyelitis, or M.E.

M.E is often descibed as a 'functional disorder'. A functional disorder, by the way, means that the hardware is ok but the software is not functioning properly, all the bits are there, they're just not doing their jobs, slacking off, on strike. That's how my neurologist described it to me anyway. But there is a strong evidence base for M.E being organic, i.e. NOT functional. It affects every cell in my body and plays havoc with my immune system. The idea that this devastating illness can be cured by talking about it is absurd and crazy to me. I want to be better. I have done everything any doctor has suggested I do. I am still not better. In fact, some of the advice I have been given by medical people has been very damaging. 

M.E is not just 'feeling tired'. It renders me unable to do even the simplest of tasks and has ripped apart my life. And for some reason which is entirely unknown to me, there is no significant money being spent on research.There is no cure.

Welcome to the world of M.E.

So! Time to begin.....

Location: Bed. Master bedroom, aka my 'night bed'. It's the afternoon, so I shouldn't strictly be here, but they're my rules so I can break them if I want. Just one month before 'The Event' when I became very unwell indeed, we moved house. There are three double beds in my house, three sofas and numerous chairs, most of which I can only sit upright on for a short time. Lots of options. Lots of lying down. Sleep itself can be elusive though, so I try to keep actual sleeping for my night bed. I think they call it 'sleep hygiene'. Yes- it is a thing.

You see, like many people with an invisible chronic illness, you only see me on the good days. Because on the bad days, I'm lying in bed groaning. Every movement or swivel of my eyes causes me pain. A trip accross the room leaves me breathless and exhausted. My limbs ache as if full of poison, my head spins, I struggle to string together a sentence. I can't remain vertical so have to lie down. These are the bits you don't see, the bits I like to keep for the lucky people looking after me. 

On a good day- I may make it out for a coffee, or out to a friend's house or a quick spin around the shops (pushed in my wheelchair), but the aftermath of this is up to a week of increased symptoms and general rubbishness. On a good day I always look much better than you expect me to look.

You won't hear me telling you about my symptoms, you might not know how much pain and discomfort I am in. I may have made it out the door one day, but please remember, even if I look good, It does not mean I feel good or are better. I only wish that was the case.