Wednesday, 24 August 2011

Be nice to your Fibromite.

Believe it or not I can cope with the pains in my body; although not the pains in my neck and head.

However, it's the tiredness that really gets to me.

I used to be an early bird; jumping out of bed at 7am and starting that days work immediately, whether it be my job or housework. Multi-tasking was a given. I'd frequently be ironing, cooking, cleaning and helping with homework all at the same time.

I was the person (and actually still am) who you needed in an emergency. Whatever happened, however bad it got I dealt with it and my friends used to turn to me in an emergency. That's a characteristic of FM; being the first responder in times of trouble, taking control, leading from the front.

However, although I'm still good in an emergency situation because the adrenalin kicks in, I can no longer multi-task and recalling words or even what I'm doing is becomming more of a problem.

The mental stress of giving a presentation, or analysing data can now knock me flat for the rest of the day.

The most frustrating thing is the tiredness, in fact that word doesn't come close to describing how I'm feeling.

I imagine that athletes, when they hit the wall, feel how I do, yet I get the feeling by walking up the stairs, or hanging the washing out.

I'll normally wake up tired, and I'll either manage the day, or by about 11am I'll run out of batteries. It's like my body drains of energy from my head down to my feet and it can come over me quite quickly. I might be walking and suddenly drain and then it's hard to put one foot in front of the other.

It's like I'm swimming in thick mud, moving is such an effort. In fact thinking and talking is sometimes too much of any effort. My family can tell when I'm tired, because I go quiet, and things that would normally irritate me, like if one of the kids leaves the porch door open for the hundreth time today, I have to ignore, because I don't have the energy to tell them (again!).

When I'm at my most tiredest, sleep still comes with difficulty, why oh why can't I sleep when my mind and body want nothing more than this?

I feel like I'm trapped in my body sometimes, I'm so tired but my mind won't settle and I can't make any sense of the jumble and complete mess that's still whirring around in my head.

 It's at these times, that I really have to be kind to myself, I have to find somewhere quiet and comfortable, (people talking in the same room will irritate me). I normally take myself off to my room, put on my ipod (soothing music), my eye masks and the fan and try to meditate until I fall asleep. A positive focus also helps; I know this will pass!

I find the body scan technique quite useful in helping me sleep but sometimes it's difficult to focus enough to do it.

It would be really nice if someone could bring me a nice warm drink or at least ask if there is anything they can do for me. Unfortunatley, I don't have the energy to stand and make my own and talking can be the last thing I want to do so I'll often go without and wait until I feel able to do it myself, or able to ask someone for it.

It's the little things that help alot; in fact the thing that helps most is a kind word. 'Are you alright love?' 'Do you want anything?' 'How are you feeling?' They go a looooooong way, especially when I'm feeling fragile.

So for all you FM families, be nice to your fibromite, ask how they're feeling or if there's anything you can do for them? They'll really appreciate it.

Stay well.


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