Monday, 19 September 2016

Outpouring

I will be frank. Last night I had an almighty panic attack. I haven't had many of them before and they are only something I have experienced since being ill.

So today I am frail and fractured and fragile.

I felt it coming, so much so that I told Mr Tree Surgeon before it hit me "I think I might have a panic attack." Yet it wasn't a choice. It just came. And boy did it come. 

My face and arms went completely numb. My jaw locked. It was incredibly physical. I couldn't breathe properly. My temperature fluctuated. 

And then the tears started and they wouldn't stop. 

I was conscious that Mr Tree Surgeon had a big week at work ahead; that he needed his sleep. And yet he couldn't get it because I was in quite a state. I started to worry it wouldn't stop. I wondered if I was mad. I knew I must look awful with tears and snot and sweat everywhere. And so thinking about all of that made it worse.

I'm not sure why it happened or whether there was a trigger. But I wonder if I have been becoming a little overwhelmed by life recently. Something as simple as the online food order feels too much for me. What if forgot something or order the wrong quantity or the wrong brand? Silly things that suddenly feel incredibly important. I worry about how socialising is always such a bitter sweet experience; wonderful yet likely to make me very ill afterwards. I worry about being too 'busy'. That I have so much to do and so much going on. I worry about being 'enough', about pulling my weight around the house, about being a flakey friend. I even worry that my wonderful progress will lead people to think I am fully recovered; that I have to prove otherwise. That my benefits will be taken away because of that progress even though I am still incredibly unwell. I feel under pressure but the only person putting me under pressure is myself. 

Yesterday should have ended in celebration. I made it to my dad's birthday gathering at my parents's new house and lasted two and half hours! But perhaps that's what got me in such a pickle. The house was full. I didn't know who everyone was and I think I felt rude that I didn't have the energy to socialise and chat and introduce myself to the people that were there. I hid myself away in the corner or outside behind the chicken coop. And yet I had been so excited to go and to be able to go. And eager to see all of my parent's friends who I've known nearly all of my life. But I wasn't as well as I'd hoped I would be and so my energy levels wouldn't allow me to be myself. I left early and felt embarrassed and shy at having to interrupt my own dad while he was chatting in a large group to tell him I flagging and so Mr Tree Surgeon was taking me home. And I held it all together until I got into bed and then it got to me. 

Today I have been hit with the usual post-exertional malaise (PEM) that comes after every and any activity when you suffer with this particular health condition. I have an incredibly fuzzy head and feel groggy and spaced out. Yet I can write this which shows how much I've improved over the years. (Ever the optimist?) My arms are stiff and sore and heavy and 'empty'. I am typing with two fingers. On top of the PEM I feel incredibly vulnerable somehow. 

I have made a little fort for myself on the sofa. I would have stayed upstairs but I was worried the doorbell would ring when the postman came and I wouldn't be able to get there in time, which would then lead me to panic again. Another case of making a mountain out of a molehill perhaps. I can't find the words to expand on that right now but it's something I must revisit as since moving out of my parent's care and essentially into my own home I have noticed how I put myself under pressure to do the things I feel a young woman should be able to do in her own home. How silly to do that to myself when I am still so poorly. Yet I do. 

The cavalry have been called once again. My mum is calling in after work and my dad is on standby ready to come to me at the drop of a hat. 

I need lots of TLC today. I am scared that it might happen again. 

Saturday, 10 September 2016

The girl who was

Today, the 10th September, marks 6 years since the start of my M.E. Years. 

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. 

The girl who was - 1 month before M.E.
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. 


The girl who was - 3 weeks before M.E.
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.

6 years ago to the day. That final night out.

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. 

Almost 6 years in at this year's Blue Sunday fundraiser

Wednesday, 7 September 2016

Those Dining Room Days Revisited

Today (apparently) marks two whole years since my last stint in the dining room. 

If you've only recently joined my 'M.E. myself and I' journey this may well mean absolutely nothing to you, but quite simply, there was a time during the last few years when I was too unwell to walk up or climb the stairs. Crawling was beyond me too. I just did not have the physical strength to do it. 

And so a bed was set up for me in the dining room. More than once.

Anna vs. The Stairs

The onset of my M.E. was incredibly quick. How ironic for an illness that essentially turns you into a sloth and leaves you living life in the slow lane. The first time I found myself setting up camp next to the dining room table was way back in October 2010. In 'The Beginning' as we've come to call it. I was there until Christmas time I believe and then I was able to return to my lovely bedroom upstairs.

In the Summer of 2011 however I found myself back downstairs and for much longer this time, although the dates escape me. It came as a crushing and disheartening surprise, although I know by now that there is often no rhyme or reason for the things we must endure with M.E. It was at this very poorly time that we decided to cut all of my hair off to allow me to keep a tiny bit of independence and not have to have someone wash my hair. Anyway, I digress. 

The third and final time I needed to be in my makeshift dining room bed came it August 2014, almost four whole years into my recovery journey. Looking back at my own blog posts of these times I can see a change in my attitude and how much I had already learnt about myself and my 'new' ill-heath. 

It is not a case of being proud of oneself, although I can't deny that I am. It is not a case of grit and determination; at keeping myself from using my dining room bed. It was essential. It may well happen again. For now, though, I shall celebrate having two whole years of being able to use the stairs in whatever way I need to - crawling, shuffling, sliding, hoisting myself up, being pushed or pulled or carried, or simply climbing by myself with the help of the handrail.

Some days it is still incredibly painful to do so. Some days it takes hours to build up the energy to climb that wooden hill. Some days I can't do it on my own. Some days my legs cave in half way up. But I must look back and remember that there was a time when it was actually impossible to even get onto the first step; for my legs were too weak to lift my feet to the height needed to do so. 

Progress is possible. And I am continuing to make it.