Wednesday, February 14, 2007

Why this illness is so hard to explain

My friend, who I've known for yonks, since third year of uni, has ME and suspected fibromyalgia. She has been ill for a long time. At uni we went to gigs together - always a key bonding experience for me! - and we really did get along very well. She's ill a lot of the time, although she still works part time. She likes to soldier on, and no one can tell her that it's sometimes better to rest than make things worse. That's her way. I accept that this is how she wants to live.

She's been questioning me. My need for a wheelchair, especially. Because she knows I can get around with a stick some of the time, she can't understand what the point of a wheelchair is. Also, my application for benefits is bothering her. She seems to think I should be working, and that I certainly don't deserve DLA, so why am I applying? She also wants to know why The Girl has to look after me so much - why I can't cook, why it's often hard to do my own laundry, why I can't clean my house, why I spend so much time in bed, why I can't get out more.

So this started to get me thinking, after I talked to her online for a while yesterday. This is the point I would like to make - although I doubt I'll be able to explain this to my friend. Here we go - my Explanation For Why I Am Not Like Everyone Else:

ME and FMS are different for every single person who has them. Some people can keep working; some can't. Some people can do some walking on some days but are bed-bound on others; some people have a more consistent level of pain and fatigue. Some people, like me, can do some things on one day that most days they wouldn't be able to think of doing. Some people get regular exercise; some people can't lift a teacup. IT VARIES. Everyone's different - and it's hard to explain the very weird, very mysterious and extremely varied symptoms that I, personally, experience.

I have a lot of fatigue, although my pain is more manageable than most people's. Yes, there are some days when I can walk into town. Not only are those days getting fewer and further between, but I PAY for those expeditions in a lot of pain and days of needing to stay in bed. I can't explain why I can't stand up long enough to cook a meal, most of the time, or why my hands don't always work well enough to make (or sometimes even hold) a cup of tea. I can't explain why the three stairs down to our living room are so difficult even when my legs aren't particularly painful. I can't explain why I throw things around all the time, dropping cups and plates and glasses, or why I bump into things (causing extreme pain when I do) all the time, or why I can't walk in a straight line anymore. I can't explain why I need The Girl with me in the bathroom when I have a shower, most of the time. I can't explain why I am having to type this from bed today, because walking around the house is just too much to contemplate, or why I probably won't be eating much today, because it would be a lot of effort. This is just the way things are. This is how I experience *my* illness.

I know that a lot of people like to soldier on. They like to live in denial, or hope that things will get better. Or they find that carrying on actually helps them - after all, some people really do respond well to the very controversial Graded Exercise Therapy that is inflicted on so many of us (and this friend of mine is indeed one of those few people who have benefited from it). I know that this approach is not really working for me. For a year after this started, I did soldier on. I took all of six weeks off work, then went straight back into it - part time at first, then quickly up to the usual, intense, highly-stressful full-time scholastic mania again. I had a very busy summer. I ignored the pain in my legs, my back and my neck - I told myself it was nothing and would go away. I ignored how tired, irritable and difficult I was getting as a result of ignoring it. When it *suddenly* hit me at full blast in October, perhaps harder because I had ignored the warning signs for so long, I had no idea what to do. I still tried to keep going. I told the The Girl "just one more week off work." I said I'd only use the stick when the pain was really bad. I fought and fought and fought to stay 'normal'.

Where has that got me? Deteriorating at an extreme rate, that's where. Barely able to leave the house for three months - finding myself extremely sick for days afterwards when I do. So now I'm trying a different approach. Yes, it does involve not working. Yes, it does involve applying for benefits (and on my DLA application I stated quite clearly that I have some better days when I can do more, and that I pay for those later). Yes, it does involve accepting that The Girl needs to do more around the house and to care for me than I would like (she does *at least* 35 hours a week of caring for me, by-the-by). And yes, some days it means going without that cup of tea I really want, because the walk to the kitchen would cause more fatigue or pain than the effort is really worth.

I am having real trouble accepting that I need the wheelchair that we're buying (can you tell? *grin*). I am terrified that friends won't know what to say when they see me in it, or that they'll subtly accuse me of not needing it. But, you know what? I'm not going to let that stop me from having my life and independence back. I can't always explain what's happening with me and why I need support. But I'm bloody well going to accept the support that I am offered or can afford (the very last of my savings will be going on this chair, and I don't care). If I don't accept these things, I will become someone that I don't want to be. I'm too worthwhile a person for that.


Anonymous said...

You can't live your life by what other people think. I can't believe she is being so insensitive. It's a simple matter of QUALITY of life. Taking a step back and relaxing when you feel like crap, I personally think it's better NOT to push yourself... It's better to slow down than to push yourself and be sick all the time!



Spitting said...

Excuse my ignorance but don't the conditions vary for the individual - periods when it's better worse - over time as well?

Don't get drawn into the benefits guilt - it's not like DLA pays a huge amount especially considering what you have to go through to get it!

lilwatchergirl said...

Spitting - The conditions for DLA, you mean? They can vary for the care rate (you basically have to need care more days than you don't), but not really for the mobility rate. However, if being mobile makes your condition significantly worse, it's counted. Since mine is made worse by walking more than 50-100 meters (depending on the day), they *should* take that into account. We'll see, I suppose! Yeah, you're right - I need the money, but it's not worth feeling guilty over. I have contributed a lot to society over the last few years, so I bloody well deserve something back. :D Can I ask what rates you get - if you get it?

Jillian - You are wise. Thanks :) Quality of life is indeed what I'm working towards here. I think it's far more important than most medical professionals would like me to think it is.

Spitting said...

I get *checks crushed bit of paper* The middle amount for 'care' and the low for 'mobility' which comes to £60.15 a week total. Plus I get incapacity benefit and my freedom pass =)

It's just the shit you have to justify even if you are completely crippled to squeeze a penny out of them.

And really - the actual amount of care someone needs - the amount my boyfriend puts in for example - would cost way more. So I refuse to feel guilty. I payed tax when I worked and will when I work again.

Crystal said...

All I can muster out tonight is the following: AMEN!!!!!