be in good health

I don’t want to count my chickens before they hatch but I have been feeling significantly better of late. I’ve been able to go out places and I’ve not just had to come home at the end of the working day and go straight to sleep. My vocabulary has returned too so I’m back to my opprobrious self. I’m counting this as done because, for now, I am in good health. I’m still very tired but I’m a million miles better than I was a few months ago, this may be because I’ve had quite a bit of time off work, it may just be that I’m feeling better and am over-coming post-viral CFS. Whatever the reason I am looking forward to enjoying the here and now where I feel OK, but trying not to go overboard as I shouldn’t push myself. The nicest thing is, after being completely removed from all my usual social activities is that I have not been forgotten by others, but rather have been greeted like an old friend that has been missed.

I don’t feel fantastic, but I feel OK, which is good. I have been secretly working my full hours at work and although to begin with it was a struggle it’s been do-able which is reassuring. Although it’s comforting to know that I won’t be doing a full week at work until after the new year and this is because I still have about five days leave left to take before the end of the year.
I’m having to stop when I feel really tired, but I know that with a little rest I can start again. I just have to pace myself. I feel quite positive at the moment and I feel ready to do some light-socialising, I think I’ll be ok as long as I don’t push myself to stay out late when I start to feel tired and if I don’t drink lots. I bought a new party dress yesterday as a little treat for myself and also to celebrate the fact that when I was at the hairdressers on Thursday my lovely hairdresser commented that I had “quite a lot of new hair growing in.” This is ace, the hair loss has mostly been stress related I think and although it might not be too obvious to others it’s pretty obvious to me. But I also love my new funky short hair at the moment. So things are a bit better.

Hmmmm, I went back to work today for the first time in three weeks. I went back because I’m feeling a lot better and I feel that I can cope with work again. My boss is being very understanding, in fact a little too understanding and I’m a little suspicious. My boss has suggested to me in the past that I reduce my hours of work. I don’t want to do this because I can’t afford to do this. I either need a full time wage, a very well paid part time wage or I need to be unemployed and receiving Housing Benefit. Now my boss is suggesting, nay insisting that I work 9.30 to 4.00 for the next few weeks and that my duties are significantly reduced, so basically I’ll be working almost part time and only doing about a third of the duties I’m employed to do, all unofficially. Now, my thoughts are as follows, 1. this undermines my position at work somewhat as my colleagues are having to take on some of my work load which I’m sure they don’t want to have to do. 2. This undermines my position at work somewhat as if I go along with this then am I admitting that I’m not capable of doing the job I’ve been employed to do, and by doing this am I setting myself up to be demoted? 3. If other people at work are doing more hours than me and more work than me but getting paid the same as me then this can’t be fair. 4. This undermines my position at work somewhat as if I go along with this does this mean that I therefore give up my rights to be promoted, get a payrise? Am I putting myself in a position where I’m effectively agreeing that I’m no longer capable of doing my role? 5. If I insist that I do my full hours and all my duties against my bosses wishes and then become ill will this then be taken as proof that I can’t do my job anymore and therefore I’ve given my employer permission to dismiss me? 6. If I insist on doing my proper hours and role and then make one teeny tiny mistake will this also be taken as proof of my incapability?
I’ve been trying to find out what my employment rights are under the Disability Discrimintaion act but it’s bloody complicated. I’d like to join my local ME support group so I can get help and advice on managing my fulltime job and my condition, but ironically they meet at 2.30pm on a Tuesday and so I can’t attend because I’d be at work and I don’t want to take more time off for all the reasons stated above. This is making me stress which is making my ME worse, in fact I’m panicking a bit as I don’t know if my boss is trying to be kind or trying to get rid of me. She’s being very firm in a “I’m going to bully you about this to make sure you stay well and fit” in a jokey sort of way, but it’s actually making me feel bullied in a proper sort of “You’re compromising my position at work with my colleagues, materially damaging my career and disempowering me in my workplace” sort of way. Help!
Oh yeah, on top of all this I think the NHS has made a mistake as instead of me getting a letter from the hospital about my appointment with the ME/CFS specialist I’ve got a letter about my appointment with the “Infectious Diseases Specialist” – unless my doctor isn’t telling me something… I’m going to ring up the hospital and enquire as it’s bad enough having ME let alone having to a) sit in a waiting room full of contagious people, thus running the risk of futher ill health or b)find out that as well as having ME I’m also syphilitic or something. Hmmmm.

Yes, I’m going to a Faith Healer! No, not really, I have no faith to heal, however, I do want to get a massage one that will take away some of the stress in my body at the moment, I can feel it malingering away in my back as I type. I have the number of a good place in North Shields called Sanctuary House, so I’m going to call them sometime this week.

I really want to be healthy, grow old being in good health, and die from old age and not sickness.
Of course, you can live “healthily” but it doesn’t prevent you from falling seriously ill.
So I don’t know whether I can “achieve” this goal in the future (being seriously ill once in a lifetime seems enough, doesn’t it?); but I can at least hope for it and try to do my share.

Most of the people I have spoken to about not feeling well have responded with “But you do so much stuff, no wonder you’re tired”. Now I actually didn’t think that I did that much, in fact I spend about 90% of my free time feeling guilty because I’m not using that time in a productive way. Maybe I got too much life coaching or something?! Maybe I over motivated myself so that now I can’t relax properly because I’m stressing over the fact that I’m wasting these hours as I’m not doing something to improve my life etc. I don’t know, anyway, I need to learn how to relax again. Maybe this will help me a bit. I’m trying to find some good alternative therapies that might help me out, I feel that as I’m an artistic sort of person then my mind and boby will probably best respond to therapies that are artistic or in someway sensually stimulating.

It’s all smashing with regards to my blood. Which is good right? I mean I don’t have anything seriously wrong with me. However my doctor says I have ME. I thought ME was just soft people mooching around feeling sorry for themselves. Maybe I was wrong. I really should tell work, at least tell my boss but then I don’t think it will go down that well and I don’t want to tell anyone in the real world just yet. So I’m back off to the doctors in another couple of weeks for my on going monitoring and stuff and I have to do something called “pacing”and maybe have CBT although I really don’t want CBT. In fact I won’t have CBT I don’t think…Hmmm. I wish I wasn’t in work today.

Oooh, what will it say? Probably nothing. I still feel like a big pile of poop at the moment. My favourite phrases being “Is it just me or is it cold in here?” “Is 8.00pm too early to go to bed?” “I think I’m losing my mind.” I’m going to stop typing now as I’m too tired! This is getting a bit silly now.

Well, it hasn’t spoken yet. Although after I had my blood taken on Thursday the nurse called me the next day to say please could I come in again today (Monday) to give more of my blood as they either need to check for more stuff or re-run one of the tests – I can’t rememeber. However, the nurse did say today that my “biochemistry” is fine. Great! Any idea what/where/whom my biochemistry is?

I’ve felt this way for about a year now to be honest, and over the last few months I’ve really not been that well at all. Mostly I’m just cold, confused and exhausted all of the time. The thing is, a lot of people find the world confusing and exhausting, so for a while now I’ve been just trying to push through these feelings thinking along the lines that maybe most people feel like this and it’s just that they just shut up and get on with it! But I’m at the stage now that I spend some days at work with a headache, shaking and sometimes vomiting just because I’m feeling so tired. Or, increasingly I’m finding that there are small portions of my days that I can’t account for, or I have no recollection of doing particular things at work. It’s stressing me out quite a bit now, which is probably a bit of a vicious circle. Also every time I’ve tried to discuss this with a Doctor they have usually told me it’s probably my hormones or that I’m a bit depressed. I don’t feel depressed at all though, the only thing I feel depressed about is the fact that there is loads of stuff I want to do but I’m just too exhausted to do it or else, I’ve forgotten that I was meant to be doing it.
So, I went to see another doctor today and she’s actually taken me seriously, she’s also taken about two pints of blood off me so she can test it (well, not her personally, but some lab person) to see if there’s anything weird going on. It’s bizzare, now that I’ve talked about this to a doctor I feel both relieved and more concerned. But hopefully, I’m not going crazy which is what I was starting to feel like, as if I was a 27 year old woman trapped in a 90 year old’s body. Let’s see what my blood says…