Saturday, January 20, 2007

The Girl OR you don't have to be ill to suffer from chronic illness

P365, 19th Jan (I'm losing track of what number day I'm on now): The Girl proudly stands next to the coat stand that she put together herself, after going all the way to Oxford to collect it so that she could save the £10 delivery charge... Sadly, although my new XDA Mini S is fantastic and makes me incredibly happy, its camera does not seem as good as the one on my last mobile phone. I shall have to start carrying my real camera around with me again. The XDA is marvellous in every other way, though. I particularly love having my calendar, notes and Word documents all in one place. Now I just have to start remembering that they're there.

But I digress. Back to The Girl. She's wonderful, you know. (Nearly as wonderful as my XDA. *serious nod*)

Today we managed to have about a week's worth of stress in four hours. Her fantastic attempts to help me, by finding out information for me about the hospital to which I'm being referred for ME testing/treatment, were met by me having a helpful panic attack. I'm nice and rational like that. Then we went out for breakfast, got annoyed with each other and came home again without actually ordering any food. I half-collapsed on the way back, threatened to run off and stay with my dad, shouted and cried, and went to bed.

Where The Girl, without a single complaining word, brought me sausages, eggs and buttered crumpets.

I think it must be just as hard to be taking care of someone with a chronic illness as it is to be the person who has it. Maybe it's harder. I don't know, as I've never been on the caring side of things in this situation, but it certainly seems like The Girl puts up with a hell of a lot. Not only does she have a lot of the same stresses as I do - the 'will this ever end' stress, the 'how do we get to the shops this morning' stress, the 'why are doctors so crap' stress, the 'Nay's in pain and it's making her ridiculously cranky' stress... But she also has lots of other stresses, like having to make my meals, bring me tea when I can't carry things, clean up whatever I've spilled on the floor this time, sort me out when I'm in floods of tears, drive me places, sit through doctors' appts with me, help me get out of the shower when I'm worried I might fall, make all the little decisions when I'm too tired or cranky to choose what to have to eat or which DVD to watch, keep the house tidy when I'm not well enough to clean, push me around in the wheelchair when I haven't got the strength to walk very far, etc, etc, etc, etc...

Things are fairly simple for me, really, at the moment. I'm sitting around, taking things for the pain, waiting for appointments and seeing what happens next. It's not easy, but I'm dealing with it. The Girl, though, has to deal with all the fallout from all that AND get on with her own life (this afternoon she's off sorting out Production Week on the show that she's directing). It must be extremely stressful. No wonder we're getting a bit annoyed with each other. I'd like to be able to give her some kind of break, but my only choice is going somewhere like to stay with one of my parents, and that wouldn't be particularly pleasant. Hmm. This must be given some thought.

Anyway. I'd like to take this opportunity to thank her for everything she's doing for me. I can't do much else right now, but I can do that.

In other thoughts, I went to book group with former colleagues last night. It was fun: we had some good discussion, and it was nice to see them again. One woman, though, whose sister has ME, now seems determined to 'help' me. She's left a message on my voicemail saying that she's got the number of her sister's dietician, that she wants to give it to me so that I can go and see the dietician, and that her sister thinks I can "recover completely" from my illness(es) because I'm so young. Now, of course I appreciate the positive thoughts, and it's nice of her to want to help. But how do I tell her, graciously, that I really don't want to do *anything* that people 'recommend' just yet, until I have diagnoses and a treatment plan from my own practitioners? Yes, at some point it might be useful to talk about diet - but I will probably get that and more from the ME treament programme I'm soon to be going into, after I've had tests and been properly diagnosed. I don't want to mess with anything right now, while I'm waiting for that. Especially since this dietician thinks changes in diet can cure anything, and I just don't believe that (I think it can help a great deal, but it's by no means the only thing, especially when you have more than one complex condition with a range of possible specific causes), and I don't want to meet with anyone who will cause me more frustration and stress than I need right now. Any thoughts on kindly turning down this lovely woman's kind but overly pushy suggestion, anyone?


Tawn said...

thank you for your comment and how lovely to come "meet" you! someone recently gave me words for a situation similar to this:
"thank you so much for your offer. right now, i am content pursuing the treatment my doctors have given me. it's noce to know i can contact you if i'm interested in your doctors/treatment, etc." something to that effect anyhow. i hope this helps!

Carys (aka ~Cats) said...

i am so glad to see the girl! now we need a picture of you too you know! :)

i think in some ways it IS harder for them than it is for us, cause they have to do all the normal life stuff and then be caretakers on top of that and go thru all the stress and worry we go thru too, and deal with what the stress and worry and sickness does to us.

for your friend that wants to help, i would tell her the truth -- you're just had to stop working and in the middle of gettng dxed, your completely overwelmed, and right now meeting with anybody is more than you can do. if you wnat to talk to her sister at soem point you can ask for her number. DONT give yours out, since then you will have to deal with calls from them. they just want to help, but sometimes ppl just wanting to help can be too TOO much when you dont know yet what is going on.

diet can help LOTS, but i dont think i have ever heard of anybody claiming it can cure cfs before. i sort of thing if you get cured just from changing your diet, you probly did not have cfs in the first place, since it is so many diffrent systems out of whack, you know?

hughughug and lovelovelove from boomonsa

Naomi J. said...

There are pictures of me on my flickr page at - well, OK, one picture of me :)

Thanks, boo - good advice. I will tell her that I might be able to use the contact in the future, but not right now while I'm looking into things in my own way.

geeke mum - useful! Thanks. :)

Spitting said...

Getting a weeks worth of stress into four hours is time well spent =)

missfee said...

Hey there, came across your blog via straighttalker.

I too have chronic fatique, am in my 10th year or so of having it and it sucks but I guess you learn to manage it... I hope one day I'll get over it and have tried a variety of differnt things to get over it but persistance is key and I, am unpersistent...

Anyway, will read more of your blog :-) hope you manage your fatigue better than I do :-)

birdychirp said...

gah - blogger ate my comment...

I liked gekke mum's response to your over vigorous helper!

Thinking of you - hope the dr's come up with something helpful soon.