Wednesday, 25 February 2015

The Invisible Balancing Act

First off thanks for all the support you guys have shown about the blog idea. I’ve had some really great messages, and it’s lovely to know you’ve enjoyed my writing.

This time round I’d like to talk about something a lot of people with chronic conditions deal with. The fact that most of us don’t actually look that sick. To be honest, most of the time it’s quite nice not to have everyone recoil in horror when they see you, but it does have it’s downsides.
The main one is that it covers up the Invisible Balancing Act that most of us have to go through every day in order to keep ourselves functional.
This is particularly fun (and sometimes funny) when dealing with strangers, but for now I’ll just talk about it in regards to friends and family, and leave all that for another time.

I said in my previous post that a baseline is what you can do consistently. Consistently really is the most important part of that.
Let's say that tomorrow, I get up and decide to try to go to my local town and go shopping. That would be monumentally stupid of me, but let's run with it.

With ME/CFS every single activity you do (even something simple like brushing your teeth) has Payback - a worsening of symptoms as your body adjusts to the energy it’s lost. It doesn’t always happen straight after an activity, you can also experience Payback a few days later (which can be really confusing).
Provided the activities you do are within your baseline, you can try to offset your Payback by resting. That’s really what a baseline is; being able to find an achievable balance between the things you do everyday and the amount of Payback you get from them. 
If you overdo it and go beyond that, Payback can really do some damage. 
They are not exaggerating when they call Payback a bitch.

Payback can come in a variety of forms; I’ll go into more detail on that when I talk about symptoms generally. The main thing you need to know at this point is that Payback makes you feel terrible when it’s not offset properly, and, if you really push yourself too far, it can tip into a full Energy Crash.

Energy crashes are bad news. They mean I’ve overdone it to the point where my body just gives up, and, because my body can’t store energy in the way it used to, it can take weeks, or even months, to get back to where it was.
So all the energy I used trying to go on my little trip to town (that had taken months to build) would be lost because of doing that one thing.
Then it would take the same amount of time to build my energy levels up as it had done before, if not more, and I would feel unspeakably awful while it happened.
In terms of my shopping trip, I wouldn't have even made it out of my tiny village before crashing, and you don’t need to be a genius to work out that it’s not worth the consequences just to try and go have a nosey in Primani. (No matter how cheap the leggings are.)

Trying to operate in this way (pushing yourself and crashing, and then repeating the cycle) is called Boom and Bust. I did this a lot to begin with, and it’s taken me longer than I’d like to admit to realise that it’s really not a good way to live your life if you can avoid it. The balancing act may be a lot more boring, but it’s also a lot less harrowing.

It takes a lot of effort (and a near superhuman sense of self-awareness) to keep this balance going on a day to day basis. Because Payback can be delayed I have to keep a detailed note of everything I do and how much I rest, so I can refer back to it if I have a reaction to something later, and adjust my balance or activities and rest accordingly.
It's very much like being on a permanent tightrope walk.
Sometimes, despite my best efforts, I still get it wrong. I'll fall off the tightrope, and I can’t see or talk to people. On those days I look awful. 
On those days I also do not go within a 5 foot radius of a camera, so no one ever sees my sick days. I don't really want anyone to; it's private.
On the days I get the balance right, however, I look okay, because I’ve successfully managed my Activities and my Payback. Go team me.

Now, bare in mind that all of that is happening behind the scenes. It’ll appear to others that I’m much better than I actually am, because whenever they see me I look fine. I look like me. A pale, tired me, but me nonetheless.

So why mention it at all?
Well, it can be a little dangerous when friends and family don’t realise how ill you are because they (understandably) expect you to be able to do a lot more than you actually can. 
The hardest part of that is that most of the time you really, really want to be able to do more. And, if you don’t keep the balancing act in mind at all times, it’s amazing how easy it can be to give into temptation, and ignore your own body in order to try and live up to other people’s (and your own) expectations.

If everyone knows that this is how I have to live my life, then it's a lot less likely that they'll expect too much of me or be surprised when I can't do things. And then I'm much less likely to push myself that little bit too far and set myself back in my recovery. Because that's the aim. I want to get better more than anything, even if it means tightrope walking every day.

Better stock up on leggings, Primark, I'm coming for you. Just... slowly.


P.S. Another great article that explains the balancing act (with the added bonus of cutlery metaphors) is the Spoon Theory. It's written on a blog actually called "But you don't look sick", which is amazing. This article is also why I, and others with chronic illnesses, refer to ourselves as Spoonies.

If you have time, I’d really recommend checking it out.

Tuesday, 17 February 2015

The Big Bad Tired


My name is Hannah and I have ME/CFS.

The main idea of this blog is to give me an easy way to keep my friends and family informed about my road to recovery, and to help them understand my illness. 
This is primarily because whenever I have to talk to someone about my situation, I suddenly become Monty Python's black knight, cheerfully insisting I'm fine no matter how much I'm bleeding all over the forest floor.

That’s not necessarily a bad thing; I don’t want to be one of those people that whinges about their life every moment of the day, I don’t always want to burden my friends with what can be some pretty heavy stuff, and, slightly more selfishly, it’s really depressing talking about it ALL THE TIME.
The only problem is that is if I continue to act like I’m fine then people get pretty confused when I say I not up to seeing or talking to them. 
And if it’s a choice between my friends thinking the reason I don’t always see or talk to them is because I don’t want to (which is most definitely Not The Case) or being thought of as a moaner, then I’ll take moaner any day.

So, if you don’t know what ME/CFS is you can take a little look to your right where there is a (very) brief explanation. As you might've guessed from the title of the blog (you clever thing, you!) it means I'm exhausted. All. The. Time. 
Basically, somehow (and no one really knows how), my body seems to have forgotten how to store energy, so everything I do wears me out, and sleeping doesn't make me feel any better. 
It's a bit like being in a Duracell advert, but everyone else has the good batteries and I have the rubbish ones that someone got at a dodgy looking corner shop that smells a bit weird and stocks things like "Nezcafe" and "Androx".

It’s a condition that’s called a lot of things (ME or Myalgic Encephalomyelitis, CFS or Chronic Fatigue Syndrome), but, when I’m not calling it a string of expletives, I like to call it The Big Bad Tired. 

There are varying degrees of the condition, usually measured by a percentage. Some people are only marginally affected and can carry on pretty much as normal, with some minor adjustments to make sure they don’t overdo it (they’re the 90-100 percenters) and some people are completely bed bound (0-5%).
I currently level off at around 15%. 
I wasn't always, for the first year or so of my illness I went from zero to 40% fairly quickly, but unfortunately it's an unpredictable little sod, and now I'm back at 15%.
I’m housebound, and have been for a few months now, but I get up out of bed every day, and I can sit in the garden for short periods provided I wear as many layers as I can fit under my BMO onesie (I'm a classy bird).

My current rest ratio is 2:1, so any activity I do (and I rarely do more than half an hour at any one time) is followed by twice the amount of rest. And by resting I mean lying down, with my eyes shut, in silence, while I meditate or focus on my breathing (but not sleeping, as that would mess around with my sleep patterns). It's fair to say that that is about as much fun as it sounds.

Activity counts as anything that takes any effort, be it physical, mental or emotional. Whatever you can do consistently without making your symptoms worse is called your baseline.
I can normally manage about three small non-strenuous tasks in a day (not counting getting up and dressed, having my hair washed for me, brushing my teeth etc). This is normally things like ordering something I need from Amazon (more on how I'm certain my postman is judging me another time), writing emails, reading, writing blog posts etc. Any more than that and (somehow) my mind gets overstimulated and I can't sleep, and, as you can imagine, sleep is pretty important.
I can manage about half an hour in the company of one person (who is not one of my parents) and then I get tired. It's roughly the same with video calling (although video calling is slightly easier). 
I'm still trying to work out how often I can do this. I tried twice a week but I could feel the warning signals start, the harbingers of doom that promise retribution if I don't stop what I'm doing immediately, so once I stabilise again I'll try once a week.

Essentially my life is like a very boring version of Groundhog Day. Which probably sounds really depressing to you, but I'm kind of used to it by now.
It still sucks, don't get me wrong, particularly as there's not a cure. You can improve and manage the symptoms given time, and sometimes it just leaves of its own accord (please, please, please!), but there are no guarantees.
But it's my life now, and as much as I miss that person I was (so, so much), there's no point wishing it had never happened. I just have to grit my teeth and try and work my way back up to 16%, 17%, 18%...

And hey, if all else fails, I could always try Bill Murray's way: kidnap Andie MacDowell and get a groundhog to fall in love with me... Wait...