Main » March 2005

March 23, 2005

Chronic Fatigue Syndrome according to my doctor

So, I went to the doctor this morning and told him of my angry bum woes. He (and the student shadowing him) listened carefully (good brownie points earned there). Dr B reckons it's because of my anti-depressants which I've had to go back on recently. I'm on Citalopram and have been on and off for nearly five years (oh dear). He said it could be a side effect - and they can happen at any time even if you've been on the drug for ages. He has also said that he doesn't think it's a good idea to be on it long term (he tells me this now). He's concerned because it's only five or six years old (what was my old GP thinking?) and there is no knowledge about long term use. He's concerned it will become a bit like Seroxat and have nasty things found out about it. One good thing though, he reckons the reason I have found it impossible to come off is not necessarily me, but the drug itself. So perhaps I'm not chronically depressed! How wonderful to one day be free of the little pills.
So, I'm going to go back in a month and we're going to talk about changing onto another drug, which in time might be easier to come off. That of course means I will have a few nasty weeks during the changeover, but if it means I can come off the anti-deps totally, so much the better!

Posted by Sleepy Sal at 11:22 AM | Comments (0)

March 21, 2005

Chronic Fatigue Syndrome at work...

Well, my rather good mood was marred somewhat today by horrendous Irritable Bowel Syndrome - or as an ex once referred to it Angry Bum Syndrome. Either way, it was a pretty hideous way to spend a Monday morning at work. Dashing to the toilets is not an attractive trait and I found it very embarrassing. Have made an appointment with my GP and look forward to what he has to say. However, I refuse to have any more telescopes up said angry bum. Too many have been there before and found nothing! I don't really want to go on different medication either - currently on Colofac MR twice a day which sort of spreads itself throughout the day. So, in light of the above, I'm not quite sure of what I want the Dr to do. Wave a magic wand perhaps? I can only think it's been caused by (a) this virussy thing I've got, (b) the fruit juice that I've been drinking more of lately to be more healthy (!)
Will report back.

Posted by Sleepy Sal at 12:39 PM | Comments (0)

March 20, 2005

Chronic Fatigue Syndrome with a Virus

Well, I seem to be a bit ill again. I woke up with a sore throat on Friday and have been feeling decidedly virussy ever since. It's so annoying - and so unfair. Pants! Anyway, I managed to get through work on Friday and then spent the evening worrying about whether I would be fit enough for the gig I was supposed to be playing at last night. By the time it got to yesterday morning I was still stressing and not feeling any better, but in the end I decided it was better to be ill and happy than ill and miserable. I have been looking forward to the gig for months. I threw caution to the wind and went anyway.

It was fantastic. It took loads out of me, but I don't care. It was so much fun. I don't play music in public nearly as often as I used to and I've missed it. I played drums for a band for about an hour and it was really exhilarating. By the time it was over I could barely stand up and my legs were like jelly, but it was worth it. I just wish that I didn't have to think all these things through so carefully. I want to be young and foolish!

Well, today I feel better than I did yesterday, so the risk paid off. Hurrah! Let's just hope I'm ok at work tomorrow.

Posted by Sleepy Sal at 7:44 AM | Comments (0)

March 16, 2005

Chronic Fatigue Syndrome on Press day

Well, since my last posting a lot has happened. Now, I could write about going to a celidh with some chums and not being able to dance because it made me uncomfortably dizzy, or about feeling super-depressed on Monday morning again, however I don't want to. I've had a good today today.

One of the better decisions I've made of late is to change jobs. Newspaper work is very harsh and aggressive. It does not suit me at all - neither do the physical demands. And today, in the paper, there were three jobs that I like the look of. All community-based work. Something to feed my soul - which has come to feel a little hungry at the moment.

So, today I'm smiling.

Posted by Sleepy Sal at 10:19 AM | Comments (0)

March 8, 2005

Chronic Fatigue Syndrome is Du-u-ull

Oh how I hate having a chronic condition. Yes, it’s great because it’s not going to kill me, but I’m never going to be free of it. Or at least that is how it feels. When I was diagnosed about five years ago my neurologist said that in about two years I would be totally clear and never have to worry about it again. Oh how I wish that were the case.

Yesterday when I got into work I felt awful. I felt so down, I just wanted to go back to bed and stay there and wake up in the summer. It has been suggested to me on a number of occasions that hibernating would be an excellent plan. Slowly the day improved and I felt the black cloud over my head receded.

My friend R invited me to a party on Saturday night. I really want to go, but at the moment I find myself really tired at weekends. It seems that I can either go to work and rest all weekend, or go to parties at the weekend and not go to work. Much as the latter is preferable, I have to be practical. I want to go to the party. I feel like Cinderella. Part of me wants to take the risk and go, but part of me can see me on Monday morning dragging myself out of bed feeling like death.
Today I was feeling quite a lot better than yesterday thankfully. After lunch I was sent out on a job on the other side of my small rural town. What follows is the conversation I had:

T: So, you can go on your bike.
Me: I’ll walk
T: It’s too far to walk, you need to cycle.
(I actually considered lying at this point and saying my bike is broken, but plumped for honesty)

Me: I can’t cycle at the moment, my energy levels aren’t good enough yet.
T: (displays puzzled look) ok

Me: I’m quite happy to walk, I’m quite capable of walking, I just can’t cycle at the moment.
No one seems to get the fact that it doesn’t just get better and go away. It’s always there, hovering over me like the afore mentioned cloud. In everything I do I have to consider how I am feeling emotionally and physically. Sometimes it’s almost non-existent, but sometimes it takes over completely and I have to surrender. Coping with CFS on a day to day basis is something that at times I barely notice. But if I dissect my life, I can see that every single day there are small things I do to maintain my health. It’s such hard work.

Now, after that rant, I’m going to slump on the sofa and watch TV. I have a headache. Typical!

Posted by Sleepy Sal at 11:47 AM | Comments (0)

March 5, 2005

Chronic Fatigue Syndrome in the Snow

So, today there have been several variations on the weather. Rain, sleet, hail and snow and then rain again. All this coupled with an icy wind made me seriously consider rethinking my plans. But no. After an anxiety-filled hour I decided that I would have a very dull day if I didn’t leave the flat. So I got on a bus and off I went. For some reason every time I am on a bus at the moment there is always a group of slightly noisy teenagers behind me. Luckily I had my mini-disc with me so I could drown out the effing and blinding. Oh dear, am I getting old? But surely I wasn’t like that. Was I? I remember people who were, but if I remember rightly I was quite a good girl. I certainly never swore. Yes, I had my rebellious moments, but mostly in a good and just cause. Or at least what I believed to be a good and just cause. In reality I was a bit of a goody-goody.
I swear quite a lot now. I think it comes from working in a newspaper office, it sort of dawns on you that you’ve become a stereotypical hack. Really must stop that, I’m sure it doesn’t suit me.

Talking of suiting me, I bought another skirt today while I was out – that totals three new ones in the space of as many weeks. Now this is truly adventurous. Since the age of about seven (will have to confirm that with mum) I haven’t worn skirts on a regular basis. In fact for years if anyone brandished one in my direction I would actually cry – real tears. It was a major coup when I agreed to be a bridesmaid for my aunt’s wedding when I was nine. I remember the dress and ballet shoes and itchy tights even now. I also remember changing into jeans and a lumberjack shirt as soon as the ceremony was over much to everyone’s amusement. I think I thought I was a cowboy. I was obviously persuaded against wearing the hat though.
After going into two shops (so I’m not really a dedicated shopper) I needed a rest, so I popped into the Fair Trade café I like so much. It was delightful. I drank tea (only one caffeinated cup a day) while reading the Guardian. I felt suitably left wing as I did so. Then, taken in completely by some health food ad I bought a fruit drink to boost the immune system. It cost £1.85. Even as I handed over my hard earned cash I knew it was a con. It was just fancy orange juice really. But it was nice to know that the slightly odd tasting liquid travelling down my throat was doing me good.

I am now safely at home wearing a jumper with the word Plumber written across it. Someone saw me in it once and actually believed I was one.

Tonight I’m supposed to be at a party, well, in fact two parties. One is miles away and the train drivers in this part of the country are on strike. Replacement buses for some reason only travel at 4.5 miles per hour. I’ve never worked out why. The other is closer to home, but the hostess has two cats and, on top of everything else I am allergic to them and they make me wheeze. It’s just not worth taking the chance on as I have to work next week. I think I might open a beer though. Only one mind, I’ll lose consciousness completely if I have more than one! I wish I was someone who could stay up partying all night and then be fine the next day. Never have been though.

Right, hungry now, am going to stick a potato in the microwave and open a tin of tuna. See, I cook too.

Posted by Sleepy Sal at 10:30 AM | Comments (0)

March 4, 2005

Chronic Fatigue Syndrome at the End of the Week

Well, it’s the end of my first full week at work since my relapse. I am sitting in my rather small flat, listening to Scissor Sisters, wearing an unflatteringly large woolly jumper (stolen from my dad) and some old trainers. Ok, so not attractive, but comfortable. I got in from work at 5pm feeling tired, but happy. I have survived the week. A few weeks ago I didn’t think I’d ever be able to go back to work or complete a full day. But somehow it has happened and I’m feeling stronger physically and emotionally.

The weekend beckons and I have made a plan. I always have to have something to look forward to, otherwise I end up lazing around doing very little, then all of a sudden it’s Monday morning again. So, tomorrow I’m going to catch the bus to a neighbouring town, do a spot of shopping and then have a cuppa in a nice Fair Trade café. Mmm. Naturally I won’t be spending very much money due to the pittance I earn, but I can buy a Saturday Guardian which is always good value!

Posted by Sleepy Sal at 11:20 AM | Comments (0)

March 2, 2005

Chronic Fatigue Syndrome on a Tiring Wednesday

Hello and welcome to my world. It’s a slightly dopey one this evening because it was press day at the newspaper where I work. Busy is not the word! Anyway, I ought to introduce myself properly…

Well, there are many things I can say about myself. I am small, noisy, political, a writer, a photographer, a musician and I have chronic fatigue syndrome. I was diagnosed five years ago by a very nice neurologist. Before that I had spent 18 months lying on a sofa in my parents’ house watching the world pass me by. I had gone from being an undergraduate student living independently at university away from home, to being dependent on my parents for everything. My symptoms (and this is by no means an exhaustive list) included: fatigue (ok, that’s an obvious one), irritable bowel syndrome (not sexy), period pain (not sexy either), loss of balance, vertigo, anxiety, depression and the ability to catch every bug that was going round.

During that rather dull 18 months, leaving the house entailed a wheelchair and a willing pusher (mostly my dad, poor sod, I gave him a very hard time). The loss of independence was nearly as debilitating as the condition itself. Between daytime television and being pushed round town I was a regular at the hospital, having tests galore. There is no orifice in my body that has not been investigated by a doctor with a very long telescope… and the less said about that the better. I also had the misfortune to endure a week as an inpatient. There is nothing more frightening than having a group of doctors at the bottom of your bed looking confused while every test comes out negative, you continue to get worse and nothing they do helps.

So, after many tests, two gastro-enterologists, a haemotologist, a surgical team (who didn’t operate), three GPs, several sympathetic nurses, a handful of unsympathetic ones and a neurologist I finally had my diagnosis. In all honestly I was tested for everything else (and I do mean everything) and frankly there was nothing else that could be wrong with me.
I started a course of anti-depressants and physiotherapy and within six weeks my life was transformed. I think one of the most wonderful things was knowing that (a) I wasn’t going to die and (b) chronic fatigue syndrome is treatable. When I say transformed, I don’t mean I was 100 per cent fit, but I was on my way. I was walking again, talking on the phone and venturing out without my mum and dad looking after me. My independence was once more becoming a reality.
Slowly I began to regain my strength and I went back to university to start a second degree, which this time I finished. There were of course set backs, as I knew there would be. Depression at times, fatigue, anxiety, but the last five years has seen me really improve physically and emotionally. I’ve learnt what is good for me and what is not.

What inspired me to start this diary was the fact that just before Christmas I began an insidious slide into the first serious relapse of my condition. I have been working as a journalist since June, my first proper grown-up job and this came at a very bad time. I was off work from the middle of January until just last week. It was utterly terrifying. I had images of losing my job, my home, my independence all over again. But, difficult as it was, I have slowly started to rebuild once more. I am lucky in that I know what I need to do to get better and luckier still that this time it only took a few weeks to get back to relative normality.

So, here I am, home from work after a long day. I’m tired, but capable of writing this. Things aren’t so bad really!

Posted by Sleepy Sal at 12:43 PM | Comments (0)