Thursday, 29 August 2013

My Life is More Than Tick-Boxes

Being sick/disabled produces so much paperwork! The acronyms go on and on: DSA, PIP, ESA... How else am I meant to get enough money to live off? Filling out all these forms and attending all these appointments turns into a full-time job.

My latest form has been the PIP. PIP stands for Personal Independence Payment and has taken over the DLA (Disabled Living Allowance) in the government's attempt to save money. They have aimed to save this money by allegedly only giving money to those who really need it. But it depends on your definition of 'need'.

Unfortunately, the government's idea of 'need' is very literal, which may sound fine to you as 'why should we pay to help people do things that they want to do? There are things I want to do but can't.'

As someone with CFS/ME I cannot walk for more than 15 minutes a day, extremely slowly. And that is with my parents being my carers and doing most things for me while at home. No one wants to walk that slowly so I walk alone. I can't walk to the shops and back so I have to make do with what I can buy cheaply online and without being able to choose. I can't walk from and to a normal parking space when going out somewhere.

So yes, I can eat and wash myself, but I can't do most things that make life at all interesting. I become some invalid waiting for people to come visit me. And they don't. I'm 19, and it's hard enough having to forgo things that I should be doing and that I want to do as a 19-year-old without being told that I really can't do them ever because either a) I'm not really disabled enough or b) we don't have enough money.

I hate being told that I'm not sick enough for things. Am I in some inbetween bracket? I'm not actually, I have most of the same symptoms as diseases such as lupus and MS and yet I am treated with much less respect. It is literally all in a name.

And so how do you convey these everyday challenges into answering questions with 3 tick boxes labelled 'YES', 'NO' and the ever vague 'SOMETIMES'?

Saturday, 24 August 2013

The Fear of Stopping

Many people without CFS/ME find it difficult to get their head around the behaviour of those with CFS/ME. Sufferers can sometimes be spotted walking around, looking perfectly fine, sometimes for days on end. You may meet up with a friend for lunch who has CFS/ME and they may look as if nothing at all is wrong.

Well, it's not called an invisible illness for nothing, and may in fact be one of the most invisible due to the presence of what is known as Post-Exertional Malaise (or PEM for short).

And what's PEM when it's at home? All it means is that symptoms flare up even more than usual and dramatically out of proportion after any kind of activity. So a meal out with friends may leave a healthy person very slightly tired but nothing more and the tiredness at the end of the meal doesn't get any worse unless you do more. Whereas, a CFS/ME sufferer may go to a meal, feel very tired by the end but then feel 20 times worse the next afternoon. And this feeling worse may last a few days.

So the consequences of activity are hidden. Your friend with CFS/ME going out with you yesterday is not a good reason for being able to go out today - in fact it's the opposite!

Now I don't want people to pity me and fuss, but some little understanding of this can go a long way. Treasuring the time with people with CFS/ME is vital as socialising is something that can only be done periodically.

There is also this fear of stopping. This is because a sufferer can run for a limited amount of time on empty but it always catches up with them (i.e. PEM), just like a short-term bank loan with a high interest rate. It's when you stop that the problem occurs, and there comes a point where you have no choice but to stop.

There are two ways to deal with this fear of stopping:

1. You stop loads, like every 30mins or so. And you do very little. Makes for a boring lifestyle I know, but personally I think it's worth it to actually feel well for most of the time. Someone doing this may be constantly saying no to outings and activities and appear anti-social, but for the vast majority of people, they wish they could join in and pay a high price for their healthy feeling. This is called pacing.

2. You run on empty for as long as you possibly can so that the stops are further apart. This makes for a much more 'normal' lifestyle but only for some of the time. More time must be spent recovering and the sick feeling (understatement here) is very strong. Personally, I think this is a very unhealthy way of managing the symptoms but it can make you feel more normal. Someone doing this may appear to be perfectly normal when you see them and you may wonder how they are sick at all. I think this method is only possible for mild CFS/ME but I may be wrong.

There is also the possibility of an inbetween method where most of the time you do 1 but a special event comes up and for a short while you do 2.

I wanted to write about this because people with CFS/ME are very easily compared and seeing people who follow 2 can make people who follow 1 more weak, when in fact both methods, or even having this condition at all, makes you a very strong person.