And it doesn't feel as bad as I thought it would.
To say that life has not gone as I thought it would seems somewhat of an understatement. I have long forgotten what it's like not to wake up poorly and exhausted every single day. This is my normal now.
I still see this journey as a life changing experience. Few people get the chance to have one of those; be it good or bad. As a family, we still feel that if M.E. was going to strike, it did so at the 'best' or most convenient time in my life - after school and university, before full-time employment, and when I had moved back into the family home after university. It all could have been far, far worse.
I have spent some time this week looking back over the last 6 years and trying to remember the girl I was; that 21 year old History graduate who was working at my parents Summer Camp, lining up interviews and researching different careers.
Regardless of my health, that girl would have been long gone anyway. Life is transient and while I cannot imagine what it would be like not to have M.E, I am certain that it would have changed in some way from the life I had as a 21 year old, because that's just what happens.
Looking back through my photo albums of the last 6 years I was immediately struck by one thing - I look so happy in each photo. Even the ones that have been taken of me during The Dining Room Days and my days stuck in bed. That's not to say every day was happy and jolly. But hand on heart I think there was something good about every single day - even if that something was as trivial as having an Internet connection so I wasn't completely isolated from the world.
|A mix of pre-diagnosis days, Dining Room life, and wheelchair adventures|
|Post haircut - to allow myself to maintain an ounce of independence in washing my own hair|
|Still all smiles - even in spite of the neurological symptoms that meant I needed to 'protect' my head with a hat|
Early on I noted that I would see these life changes as a comma in my life story and not a full stop. And now I feel that perhaps these years of illness can be compartmentalised further into chapters. Several chapters in fact. Just as every life is. So while they have become The M.E. Years perhaps now, six years in, it is time to stop calling them that. For I believe my health will never be what it was - in the same way I will never again by a toddler, or go to Primary School, or sit my GCSEs, or be school netball captain, or deputy head girl. Those things are gone.
Maybe now I will start to look at life as not The Healthy Years and The M.E. Years. Perhaps this current chapter will be called The Time I Became Well Enough to Move Out of My Parent's Home..
If I have M.E. for the rest of my life, which I may or may not, that is okay. I'd rather I didn't have it but it is out of my hands, and we must make our peace with that now. My point is that it would not be wise to dismiss or reduce these years down to being just The M.E. Years. Instead, I hope that there will be hours and days and weeks, and hopefully even months, that will become chapters in my life in their own right - independent of the constant health battles that I may or may not face.
I think it will be hard - it involves me viewing myself as more than my illness, which is something I struggle with because of the huge impact my health has had/still has on my relationships, hobbies, activities... It can be a living hell. It is a nasty, soul destroying, all-encompassing illness...
But I am going to make a conscious effort.
You must understand that this will all be easier said than done haha!
So, 6 years ago today I sat in an opticians assessment room and we tried to work out why my vision had suddenly become out of focus and blurry despite my prescription being correct. And then my best girl pals and I had, what would be, our last night out together before I disappeared from the life I'd known for 21 years. 10th September 2010.
Within weeks I'd have seen several doctors and received no answers. Within weeks I had had to quit my part-time job, move my bedroom downstairs to the dining room, stop driving because I physically and cognitively couldn't do it, cancel job interviews. Within weeks I could barely walk.
Yet here I am, 6 years in, getting the chance to do things in life for the first time again - use the stairs, read a book, dress myself, wash and style my own hair, go to the Post Office BY MYSELF(!!!)
I think that makes me quite lucky actually.