Monday, 30 March 2015

The Adventures of Anna Jones: Flying Solo (well, not really!)

For the first time in 4 years I have been away for a week without my family. It was a very big deal for know that they weren't there. I have managed a couple of weekends away with friends over the past few years, but my parents (god bless them!) always booked to stay in a hotel nearby. Just incase.

This time I was flying solo. As in, I was going away without a back-up plan (although my dad did say he would drive the 3+ hours to get me at the drop of a hat.) I went away with my boyfriend (I know!!!) and his family and had such an amazing time. If someone had said to me only six months ago that I'd be doing this I'd have rolled my eyes at them and laughed in their face.

I'll admit I felt like I had a lot to worry about. It's in my nature to worry but when you factor in the unpredictability of this condition...I didn't want to ruin the week for anyone by having to stay in bed and have my boyfriend stay with me to look after me. That just wasn't what I wanted for our week away. 

Just casually standing in a pond. The New Forest. March 2015
I was so well looked after! Everything was pre-empted. I was cooked for, washed up after, I was chauffeured around, brought lunch in bed, told not to lock the door when I showered incase I needed help, my microwaveable heat-pad-Panda was warmed up every night. All the things that happen at home to make my life easier and save me some energy were done/covered. It was as if he could read my mind. If it had been a test he'd have passed with flying colours. It's a testament to him that post exertional malaise I'm currently experiencing is so 'mild' that I might actually manage a shower tomorrow!

No-one batted an eyelid when I had to leave early or cancel plans or miss certain activities... There were a few tears when I couldn't fulfil plans I'd made. When your body won't allow you to perform the very basics it's hard not to let it get to you every once in a while. But I knew that no-one minded; that they wanted me to rest when I needed to. Monday afternoon and Tuesday were particularly poorly but I have a chronic illness so that's to be expected! 

Because I didn't have to 'waste' my energy on walking too far or cooking or cleaning  managed to join in with meals out and a trip to the seaside and even a couple of games in an arcade! Can you believe it?! The Anna Jones who had to sleep in the dining room again only last year was coherent enough to play Pictionary (albeit very badly!) For so long I have had to sit out and watch when it comes to group games. It felt so good. So normal! I managed 'a lot' by my standards and I know that I couldn't have done that this time last year.

Being able to walk to the sea! The best feeling in the world.

After 4 long years, I feel like I have finally turned a corner and I am walking, literally, away from severe M.E. Touch wood. In November 2012 (Milestone) my local CFS/ME clinic informed me that they considered me to no longer be a severe sufferer. Looking back I do not agree with that at all.
My quality of life has improved no end over the past couple of years. I feel like the luckiest girl in the world.

Don't get me wrong. I am still suffering every day. People look at my photos and don't take into account that I am only showing you one side of things; the side I choose to focus on. You don't see me being helped up and down the stairs. Or having to sit and rest every 5 metres or so when walking up a slight incline. You don't see that I'm dropped off and picked up from the door so I don't have to walk further than I sensibly can without suffering too much. You don't see that I become so exhausted that I cannot speak after a short game of UNO. 

I'm aching but I think it's a good, healthy, almost normal ache. I feel like I was sensible. I had rest breaks/Purple Time every day. I didn't push myself or rush to get up with everyone else in the mornings. Infact I was sent back to bed to rest if I tried to. I was brave enough to say no when something didn't fit with my pacing plan.  

I have no desire to boom and bust (where you do absolutely everything on a 'good' day and then absolutely nothing on the bad days. And repeat. Over and over again.) or run before I can walk. But I will cherish this improvement for as long as it lasts. And, if things slip again, I hope the memories give me hope for further progress.

I FEEL a bit better and it actually takes guts to admit that. Because 99% of people then assume that I AM better, as in fully recovered. I don't believe I ever will be. I believe I will always have to be mindful and careful of my health. But I do not feel like I am in desperate need of an ambulance very often anymore. I rarely have to wear my ear defenders to combat the sensory overload. I can make my own coffee almost without fail. Often I can make my own lunch now. Progress is frustratingly slow. It has taken four long years to turn this corner. But it's wonderful when it happens.

Now if you need me this week I'll most likely be found resting in bed! Body did good. It needs its reward.

Monday, 16 March 2015

Explaining ourselves

"So how do you feel right now?"

My answers:
Not too bad.
A bit worn out.

The truth:
Like I've been poisoned.
As if my body has been pumped full of concrete.
Like something is crushing my skull.
As if my muscles are being scraped off my bones.
Like I'm so exhausted I fear my heart may suddenly stop beating because it's taking up too much energy.

We've all been there. Where we're asked a question about our health and then we're left wishing we'd explained ourselves better. I get this nearly every time I meet someone new and the topic of M.E. comes up. And I need to remind myself that people cannot read my mind and won't automatically look for the subtext in my answers.Its such a fine line between coming across as brutally honest and down right depressive though. 

I've found that 99% of people will ask "So what do you do for a living?" or something along those lines. The best response I could come up with once was that I watch a lot of CSI... I hope that I learn to ask people whether they're having a nice day, rather than asking how they are. And maybe asking "Do you work?" rather than "Where do you work?" 

I rarely give out the name of my illness. Instead I'll say that my health is a bit dodgy or that my body doesn't produce energy properly anymore. Or that I have a neurological illness that has had a huge impact on my life. Alas, because of the nature of this illness I can rarely think quickly on my feet and sometimes I could kick myself for not expressing myself better when it comes to the topic of my health. I get a bit tongue-tied and am never sure how much to say. I think that's largely down to the stigma that is still attached to this health condition, and some days I just don't feel brave enough or feisty enough to digest and respond to people's (inaccurate) remarks. 

I've mentioned it before but The Spoon Theory really has helped to explain to a lot of people what it is I'm experiencing when I say I have a chronic illness. 

It's a bit bleak but I have tried to explain myself this way before: "Imagine your car is running low on petrol. The petrol light has already come on and so you need to do everything you can to conserve that petrol and make it last until you get to the petrol station. That's what it's like. My body has run out of 'petrol' only there is no way to refill it or save it or make it last. Other than to not drive..."

Do you have any useful ways of explaining things?