Sunday, 13 November 2016

Normality

All I've really, REALLY wanted for the last six years has been a bit of normality; a bit of the Real Life that I'd lived for 21 years but I couldn't be a proper part of anymore because even leaving the house for an hour would have a chain reaction on my health and write off the rest of the week or month. I wanted to do normal things like watch television without it setting off the nausea and sensory overload and therefore leaving me bedridden again. I wanted to be able to see my friends and my cousins and my siblings whenever there was a get-together. I wanted fun. I wanted independence. I wanted spontaneity. But mostly I just wanted to be normal, to be like those unrestricted healthy folk, and to be like the girl I was for 21 years.

Last night I got to do one of the most normal things of all; celebrate my birthday at a restaurant with some of the most important people in my little world. And it was masterminded by a man who has taught me to love myself at a time when I felt the least loveable. A man who chose me. A man who's given me so much of the normality I craved, only to find out that what we have together isn't normal at all; that normal doesn't do it justice. He told me we were going out for an early-birthday meal but when we got in the taxi I learnt that a 'couple' of my friends would be there to join us. I'd had NO idea. And I consider myself to be quite hard to surprise! 

Mr Tree Surgeon is camera shy so this is the best I could get!

The people around that table will all know that that's a big deal for me and that it means so much. But it all means more than I can put into words.

I have a skewed impression of myself and my self worth now. It wasn't only my health that I lost back in 2010. But with the help of the people round that table, and more besides, I am learning that the core of me is still the same. And I'm still worth giving up a Saturday night for, worth going to all that effort for, still worthy of friendship and love.

It wasn't just a surprise meal out, it was all I've really wanted for the past 6 years. 




Friday, 11 November 2016

Periodic Paralysis?

Although it's been some time since I mentioned it, you may remember that I am currently on a quest to see if I have Periodic Paralysis on top of the usual and delightful M.E. symptoms.

London Calling
The National Hospital of Neurology and Neuroscience

My Wonder GP referred me to the National Hospital of Neurology and Neuroscience after I flippantly mentioned to her that I still have periods where I become 'stuck' and cannot move or speak. As an M.E. sufferer you are largely, if not wholly, left to navigate this new path through life on your own and without medical help, advice or intervention. Therefore I had come to see these episodes of 'paralysis' as normal and just another symptom to add to the already extensive list.

Alas, my Wonder GP seemed horrified to think that I was experiencing these bouts of what sounded like Periodic Paralysis.

So off I went to Queen's Square, London for a day of godawful tests.

My follow up appointment in August was cancelled by the hospital and a new one was made for me for October. It became clear that I wasn't well enough to travel to London (awful place at the best of times!) and get across the City to the hospital. So Mr Tree Surgeon phoned and asked for the appointment to be held over the telephone instead. Huzzah!

I spoke to a different neurologist from the Muscle Channel team to the one I saw back in February but this one was equally as nice. It's always such a lovely surprise when medical professionals treat you kindly as an M.E. sufferer!

To cut a long story short, my test results aren't back yet. Infact my samples haven't even made it to the lab. Yet I refuse to feel frustrated at the NHS or speak badly of it. We have no idea how lucky we are to have such a system. My results will hopefully be ready by the time I have my next appointment in May 2017. Again it will be over the phone.

At this stage we are still unsure if I 'fit the bill' for Periodic Paralysis. The fact that I can never speak during my 'attacks' means I am not a "classic case". I can also swallow a sip of drink if someone puts a straw in my mouth, which again isn't something that's considered to be typical.

So we wait and I continue to ride the wave.

The most wonderful thing to take away from this appointment though is that the doctor was genuinely confused and concerned that I have received no treatment or help or support regarding my M.E. since I was discharged from the CFS/ME clinic in 2012. I informed her that that was quite normal and that really there is no proper help or treatment yet. But her concern will stay with me for a long time and perhaps means more to me than the test results will.