Knackered Again

Chrnoic fatigue syndrome and sleep

Fri, 16 Sep 2005 07:48:55 -0800

I had forgotten how healing sleep can be. By the end of yesterday I was thoroughly exhausted. I had a hot bath and was in bed asleep by 9.30pm. At 8am I woke up feeling so much better and have had a lovely day. It's like magic!

Chronic fatigue syndrome forgotten for now...

Wed, 14 Sep 2005 07:59:26 -0800

Well, since I last wrote I have had my driving test, and failed it. I didn't maim anyone you will be pleased to know, I just hit the kerb. Surely that's what kerbs are for – telling you where the road ends!
I haven't been thinking about my health very much, more that of others. My friend's two-year-old daughter has been diagnosed with acute leukaemia which can only be treated with a bone marrow transplant. She hasn't much time, so her family swung into action and got themselves tested. Unfortunately none of them was a match, so today I decided I would see if I could register on the Anthony Nolan bone marrow transplant register. The idea was that even if I can't help little S, I can maybe help someone else in that position. However, it seems that because of my chronic fatigue syndrome I am not eligible. Apparently if you have had an episode or in the last 12 months or a relapse, you can't register. My last relapse was in January, extending to February. I feel so disappointed. I so wanted to do something practical to help.
A friend came to see me last night. She told me how hard the last few months had been and how depressed she's feeling. She reeled off a list of symptoms that fit with clinical depression. I gave her a stern talking to about how she needs to see her GP and get some counselling or medication or something. I don't know whether she will though. I've told her this before.
If I ran the world life would be so much easier...

Chronic fatigue syndrome on Friday

Fri, 02 Sep 2005 08:41:49 -0800

At last, the end of the week is here. I am officially pooped. Commuting and me do not get on so well... As a result I had an appallingly bad driving lesson today, nearly crashing twice. God bless dual controls...
Oh well, back to my homeland - the city - once more after work. Can't wait. It's Friday so probably will be eating out. A nice treat for the end of the week.
Obsessing a bit about the new house - interesting how anxiety strikes when the defences are down. Convinced it is going to blow up or something. All will be well once I've arrived, housemate R has a calming influence on me. He is delightfully laid back. Leaves the toilet seat up slightly too often though!
P.S.
I split up with said love-interest from a couple of months ago. She was wearing me out. Her life was so erratic and unpredictable it took a real toll on my emotional health. I was very reasonable about it and explained she clearly had too much on her plate right now. I just couldn't deal with the inconsistency I had to face. She never seemed to know what she was doing and why from one minute to the rest. When I needed support, she was often too busy to listen. And to be fair, all that most of us want is someone to listen.

Chronic fatigue syndrome at work.... shhhhhh!

Wed, 31 Aug 2005 07:36:37 -0800

OK, I'll keep my voice down, but here I am writing my entry from work... I did finally get clearance from the NHS occupational health bods and so have resigned from my job at the most parochial newspaper on earth. Hoorah!
I moved house on Saturday. By mid-afternoon I was flagging. I made the sensible decision to pay people to move me, so I didn't have to do any carrying or lifting. Some people would call that lazy. I used to argue with them, but now can't be bothered. Packing and unpacking are my two least favourite things (along with unreliability and actions not reflecting words). I always feel like such a weedy wuss and run out of steam and then can't do anything. Luckily I have moved in with R, someone who gets all this. When I got back from work last night he had dinner on the table. Fabulous!
Today another friend e-mailed me and asked me to help with her move... I paid people to do mine, I'm not wasting my limited energy on someone else's. I feel bad saying no. I'd love to be someone who can heave and heft things anywhere - my friend K is like that. She's a forklift truck driver. I just have to accept the fact that I am a hothouse flower, not a hardy annual.
Am commuting now I've moved, so super-tired each evening. Will be glad when my new job starts - just down the road from where I now live.
Another thing about living there is the stairs. Hate stairs - nearly as much as packing and unpacking. I've lived in single floor flats for the last eight years and now I live in a house where if I plan badly I have to go upstairs and fetch things. That's really quite tiring and a bit annoying. Maybe I'm just unfit.
Nothing much else to report really - too tired to remember!

Chronic fatigue syndrome and occupational health...

Fri, 19 Aug 2005 13:49:44 -0800

Well, what to tell? About a month ago I got a new job – working for the NHS would you believe! It’s a great job, great money and in Leicester – where I’m moving in the next week.
Anyway, I hoped to hand in my notice to my current job a couple of months ago, but I am currently jumping through endless hoops for occupational health. It is so frustrating. I have not had a single day off work through illness in six months. Not only do I have to suffer for being ill when I’m ill, but afterwards too. So desperate to start this new chapter in my life, but as ever my illness holds me back.
Someone told me there must be a reason for it. Perhaps it’s character building. Although, I have to say, my character is fully developed thank you, NO MORE!

Chronic fatigue syndrome and workaholics

Wed, 29 Jun 2005 10:07:14 -0800

Today I am going to have a serious rant about…. workaholics.
I have had quite enough of people who seem to pour untold energy into work, do without breaks, come in early and leave late. There is a new chappy in my office who is doing this, and as a result everybody thinks he’s the best thing since sliced bread. I must look like a complete lazy pants compared to him – coming in at 9am, taking a lunch hour and leaving at 5.30pm. Heavens to Betsy! How could I be so bold?! The thing is, I still get all my work done, often before deadline. If I worked like that I would last about two days then drop with exhaustion. I learnt a long time ago that I can only usefully work for short intense periods, then I need a break. After the break I am then fit to work again. But somehow, in order to gain brownie points in the office you have to martyr yourself to the company and chain yourself to your computer terminal. Frankly I am not paid enough to do that. I’m not physically equipped either. If I hear another word about how dedicated this bloke is I might just scream. What people don’t realise is I cam dedicated, I am just painfully aware of my limitations!
It doesn’t help that I am currently going out with someone who appears to be able to work seven days a week, 20 hours a day, have medical issues, yet still manage. How does that work? And where do I fit in? I suppose I have spent so long planning my time down to the last minute, timetabling in rest, fun, sleep, food and recovery, I have ceased to understand those who don’t do it. I guess I am the exception.
I am more tired than usual this week due to my GP… On Friday I went to see him for a check-up. He was interested to hear about my mental state (slightly frayed since entering into a relationship – I know how to cope alone, with someone there somehow it is more complicated). Anyway, generally things are fine, so, as discussed a few months ago, he suggested changing over the fluoxetine. To recap, I’m currently on citalopram, an SSRI, but he is concerned because I have been on it for five years on and off and the long-term side effects are unknown. I have to say, when he said it was time to change I was filled with horror. New anti-depressants mean new side effects. But that was put in its place by his suggestion that I have recurring depression and I may have to accept being o this medication for some time to come. He hinted that I may just have to live with this for the rest of my life. I was, perhaps naively, shocked by this. It threw me into turmoil for the next couple of days, and if I didn’t feel fragile before the appointment, I certainly did afterwards.
I know it’s just the same as someone taking blood pressure pills or something, but you cannot help change the view of yourself when someone tells you that you are a chronic depressive.
So, thus far, the only side effect seems to be extreme sleepiness. I went home to watch some tennis at lunch time today (marvelling at the energy these athletes have) and virtually dropped off. Luckily I woke up soon enough to get back to work in time.
The boss has been very understanding thankfully and knows I may take a while to come back down to earth. This is lucky because I am struggling to explain things to people at the moment. It is like my brain has been filled with treacle and is working a bit slower than usual, which is somewhat annoying. Speed of wit, writing and work is one of my better qualities. Patience is not.
Anyway, moan moan, whinge whinge, such is life.

Chronic fatigue syndrome in hiding

Fri, 10 Jun 2005 10:20:10 -0800

Hello, well, have been living a prety normal life of late so have neglected my blog. To Toy, who asked about anti-depressants again, sorry it's taken me so long to reply, only found your message today. Yes, I am still on citalopram. My doctor reckons I need to be stable for around six months before considering changing to fluorexetine (spelling optional). So, as I feel I have probably been stable for about eight weeks or so, I still have a way to go. Then it's back to those withdrawals for a while during the time the new drug takes hold I suppose. I read an article in the Guardian on Saturday about someone who has had the same problems as me coming off SSRIs. It's comforting to know I'm not the only one, even though medical evidence is limited on the subject. Also, just so you know, I was put on the drug in the first place to deal with the anxiety and depression that resulted from being ill for so long without answers.
Anyway, back to my progress. Yes, things are going well. I went on a camping holiday last week and flopped a bit though. I guess it was relaxing for the first time in a while. It's the first genuine holiday I've had for about four years. It did scare me a bit though how sleepy and lethargic I was for a few days. Poor old dad suffered too. I'm never quite sure who suffers more when I'm ill - me or him. Sometimes I think it's easier being the one who's ill rather than watching it happen. Sometimes!
The job is still fine, but still struggle with my colleagues at times. They are all very narrow minded at times. The irony is that I'm gay and I'm totally open about that, but am not 'out' at all about my illness. The only person who knew was my old boss, but he's gone now. I know I really ought to tell my new one, but I am scared. What if he doesn't believe in it? What if he thinks I'm a malingerer? What if he thinks I'm lazy? I can hear the whispers of 'yuppy flu' now! I think they think that when I was off work I was depressed. And of course I was, but that wasn't the primary problem. The sheer fatigue and lack of energy started it all. Gosh, isn't life hard sometimes.
On top of all that I do have to remind myself that I do have this condition and not go back into denial, as I believe I was before the most recent relapse. I have to take it seriously.
Other news... Have recently started seeing someone new. Actually, she's not that new. I've known her for around five years. She's seen me good and bad, ill and fit. All my relationships in the past have stumbled due to me being ill and putting a strain on things. But, for once, I think this will not be a problem this time. Obviously, there is a plethora of other things that will go wrong - cue anxiety, neurosis and paranoia. It that a symptom or is that just me? And where do the two separate?

Chronic Fatigue Syndrome and migraines

Tue, 12 Apr 2005 11:01:37 -0800

Another day, another symptom... On Thursday night I was in a meeting when suddenly my vision went a bit funny. Everything appeared jumbled and I couldn't read (not a good thing for a journalist...). Anyway, on Friday I went to see a nurse at my surgery who reckons it's a migraine. My blood pressure was fine and I'm not on the pill so apparently I have nothing to worry about. Hmmm.
I have to say, with the arrival of Spring I am turning into a very happy bunny. I had forgotten how wonderful the Spring is. It's like I've been wasting away all winter and now the flesh is returning to my bones. I feel very much alive, positive and happy. It's an incredible feeling and has even rejuvenated my enthusiasm for my job. I am still looking out for other things, but I don't feel nearly so desperate to get out now, which is much better.
Well, I have some pork chops to eat. Ta-ra.

Chronic Fatigue Syndrome on druuuugs

Mon, 04 Apr 2005 11:05:51 -0800

Hello dear readers... I had a question e-mailed to me today about citalopram and my opinion on it. It's a difficult one to call really because without a doubt I would say it dramatically improved my quality of life relatively quickly about five years ago when I was first diagnosed. However, since then I have tried to come off the medication several times and it's all gone horribly wrong each time. I've found myself very anxious and then depressed and then physically ill again. So it's a conundrum really. I think all-in-all they have changed my life for the better, but it is now very difficult to move onto the next stage - i.e. living drug free. I think I will probably follow my doctor's advice and go onto Flouroxetine - apparently it's similar but there's more research and it's easier to come off.
As I sit here writing today I am feeling quite good. I'm still job hunting - which is hard. On the last form I filled in I had to declare how much time I'd had off due to sickness. Oh dear. I'm not convinced I will hear about that one again. It's very hard having a disability that to those outside looks like I'm a person who is ill a lot. In the last two or three years I've had hardly any time off due to illness, however in the last relapse in January, I was off work for five weeks, which of course looks shocking on an application form. Another question I dislike is 'how would you describe your health?' How on earth to I answer that??! I have finally thrown in the towel and started ticking the 'I have a disability' box, because when it comes down to it, I gues I have. Just because it is variable and most people can't see it, doesn't mean it's not there.
Anyway, I'm off to do an internet job search.

Chronic Fatigue Syndrome according to my doctor

Wed, 23 Mar 2005 11:22:55 -0800

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!

Chronic Fatigue Syndrome at work...

Mon, 21 Mar 2005 12:39:36 -0800

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.

Chronic Fatigue Syndrome with a virus

Sun, 20 Mar 2005 07:44:49 -0800

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 adn 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.

Chronic Fatigue Syndrome on press day

Wed, 16 Mar 2005 10:19:06 -0800

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.

Chronic Fatigue Syndrome is du-u-ull

Tue, 08 Mar 2005 11:47:28 -0800

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 working, 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!

Chronic Fatigue Syndrome in the snow

Sat, 05 Mar 2005 10:30:29 -0800

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.