Hypoglycaemia sucks too
Posted on April 6, 2008
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Ah, the joys of hypoglycaemia. Last night I was randomly surfing on the internet into the wee small hours, as you do. About one o’clock in the morning I suddenly started getting hot flushes, and began to feel as though I might faint. What’s this, I’m asking myself, another symptom of CFS? And then I got the hunger and the shakes. Uh-oh. I quickly did as best as I could to get a glucose reading, which isn’t easy when your hands are shaking and you’re getting a rising sense of panic. 4.4 mmol/L says my trusty OneTouch Ultra 2 glucose testing kit. 4.4? I shouldn’t be getting a hypo with levels like that, I’m telling myself. My shaking hands are telling me different, so I quickly swallow a glucose tablet and put a couple of slices of bread in the toaster.
It doesn’t take long before the sugar begins to work its magic and the unpleasant symptoms wear off. Unfortunately a whole new bunch of unpleasant symptoms are just around the corner, courtesy of chronic fatigue syndrome. The hypo has kicked off an adrenaline response, which leaves me feeling rougher than a dead dog for about an hour. My legs ache even more than they normally do, and my brain feels like it’s been sautéed. It’s not until 3am that I’m sufficiently relaxed enough to contemplate sleep. Six hours later and I’m woken by my delightful neighbours playing dub reggae at full blast. Isn’t Sunday supposed to be a day of rest????
Doctors and ME/CFS
Posted on March 29, 2008
Filed Under CFS | 1 Comment
Despite the World Health Organisation listing ME as a real neurological illness, many doctors - my own included - still think the illness is all in the mind. When I first became ill, it was clear that my doctor wanted to do anything but give me a proper diagnosis. Mention the words ME or CFS and he’d practically laugh in my face. It wasn’t until I’d seen a private consultant who confirmed the diagnosis that he begrudgingly began putting ‘chronic fatigue syndrome’ on my sicknotes instead of ‘exhaustion.’ Only the other day I mentioned to him that 88 gene abnormalities had been found in the blood of CFS patients and he gave a dismissive “Oh, really?” This is a man who watched me lose a stone in weight in two months, and who saw me so exhausted that I was unable to sit upright in a chair in his surgery.
What is it with these doctors? They are supposed to be helping people, right? Why the wilful ignorance? Grrr. At least I know that there are some doctors out there who take the illness seriously, and are trying to get to the bottom of the whole thing. Dr Kerr at St George’s university is getting close to developing a diagnostic blood test for ME/CFS. Maybe it won’t be too long before they come up with some sort of effective treatment. God knows there are people who need it.
Post-exertional malaise really sucks
Posted on March 25, 2008
Filed Under CFS | 2 Comments
In case you’ve never heard the term before, post-exertional malaise is basically the technical term for the delayed fatigue that afflicts ME/CFS sufferers. And when I say ‘fatigue’, I don’t just mean feeling a little tired: I mean laid flat-out on the sofa for hours, aching in parts you never knew you had. Such was my afternoon…
I had to go and see my GP this morning. Usually when I go out I experience an increase in anxiety, which then amplifies all my other symptoms. But today - for the first time in months - I actually felt reasonably okay. So while I’m waiting outside the surgery for my taxi to take me home I decide to take advantage of my new-found health by walking the 50 metres or so to the shops and back again. (That might not sound much, but it’s a big deal for me.) By the time I got got home I was still feeling okay. Wow, I’m thinking, maybe my health is better than I thought it was. So I decide to enjoy my new-found energy by doing some housework. When that’s finished I cook some lunch, tidy up afterwards and relax in front of the TV.
Fast-forward several hours and I’m still on the sofa, arms and legs aching, head aching, back aching, just about everything aching. The CFS Strikes Back! When will I learn? And why is it so hard to follow my own advice? I know I’m supposed to pace myself and not overdo things. But when you’re feeling good, it’s so hard not to enjoy it while you can, even if it means you might pay for it later. Ah well, at least I got my five minutes of relative normality. Here’s to the next five.
Top tips for coping with CFS
Posted on March 24, 2008
Filed Under CFS | 1 Comment
In my experience, chronic fatigue syndrome can have a devastating effect on your life. When the illness first hits you, you can be so overwhelmed with the sheer number of symptoms that it leaves you feeling totally helpless and vulnerable. Unless you have a good doctor who recognises early on what you’re suffering from and gives you the correct advice, you can end up making yourself worse. Here are some tips that might help you or someone you know who is suffering from CFS.
1) Pace yourself. This list isn’t in any particular order, but I’ll begin with what I believe to be the most important factor in coping with CFS. Early on, during those first few weeks when I didn’t know what was wrong with me, I unwittingly broke one of the golden rules of the illness: don’t overdo it. This might sound like a no-brainer, but with CFS it’s particularly relevant. Sufferers have to deal with something called post-exertional malaise, which basically means that any activity, whether physical or mental, will have a delayed pay-off hours or sometimes even days afterwards. Keep over-doing it and you’ll cause a relapse. The trick is to do only three-quarters of what you feel you’re capable of doing, so you can put that little extra in the bank. Need to go out in a couple of days? Expend as little energy as possible beforehand, so your body is able to cope.
The same thing goes for the household chores. Don’t try and do it all at once. If it’s not possible to get other people to lend a helping hand, then take things easy. Better that your home gets a little dusty than you push yourself over the edge and up bed-bound for weeks. When you need to cook, make enough so that you can store some of it in the freezer, saving yourself time and energy in the future. Put a stool in the kitchen so you don’t have to stand in front of the oven. Anything you can do to ease the workload will help towards your recovery.
2) Eat a healthy diet. Again, another apparent no-brainer. But CFS sufferers often have symptoms very similar to those of irritable bowel syndrome, or IBS. Cutting out all the rubbish from your diet can have a direct effect on the way you feel. Many CFS sufferers find that cutting out dairy products and foods containing wheat or gluten substantially improves their symptoms. Another reason for eating a healthy diet is that it supports your body’s already-weakened immune system. The more nutrients you eat, the less work your body has to do in order to heal itself. Taking high-quality nutritional supplements is also a good idea.
3) Learn to say no. A major problem for people with CFS is a lack of understanding from others. Sometimes you might not actually look very sick, when in fact you’re experiencing a whole load of unpleasant symptoms. This often leads people to assume that you’re not as sick as you say you are, or even worse to try and cajole you into doing things that you know will cause you considerable discomfort. Only you know what you can and can’t do. Don’t let well-meaning friends and family members inhibit your recovery. If they call on the phone and you’re really not able to hold a conversation, don’t be afraid to tell them. Explain you’re not feeling well and promise to call back later. If you get an invite to an important function, don’t worry about turning it down. Just explain gently what your limitations are, and if they’re a true friend they’ll understand.
4) Avoid stress. Even relatively low levels of stress can lead to a substantial worsening of symptoms. You need try and cut out any unnecessary factors in your life which are causing you to worry. Don’t let any unresolved issues boil away under the surface. If you feel up to it, try to meditate regularly, even if it’s just a couple of minutes a day. Meditation has been shown to have significant beneficial effects on the body.
5) Don’t fester indoors. For the bed-bound, this isn’t an option. But the moderately-affected should be careful not to end up withdrawing into themselves. This might seem at odds with some of my former points, but it’s not. Although you mustn’t over-exert yourself, you should try and take advantage of any window of opportunity, whilst being careful that you stay well within your limitations. Getting outside and doing something, no matter how trivial, can provide an important psychological boost. Many CFS sufferers simply don’t have a social life, and so any activity which adds a sense of normality to their lives can be extremely beneficial.
6) Take each day as it comes. CFS is an unpredictable illness, for which there is currently no cure. Some people recover relatively quickly, within a year or so. Others go on to live with it for the rest of their lives. There really is no way of telling when you might recover, if ever. This might seem a daunting and depressing prospect for the newly-diagnosed patient. But there’s nothing to be gained to from trying to kid yourself that you’ll be recovered by such-and-such a date. The likelihood is you’ll only be setting yourself up for a disappointment.
This doesn’t mean that you should just give up on life and take a defeatist “what’s the point” attitude. Instead, think of your journey to recovery as a winding road, with many twists and turns. Some days, you might find yourself back where you started. Other days, you might find yourself within sight of the finish. Through it all, just accept each new day and what it brings you. Stay positive, and remind yourself that there are always other people who are worse-off than you.
Introducing … me!
Posted on March 20, 2008
Filed Under CFS | 1 Comment
Hi folks. Jon’s the name, pleased to meet you. One day at work in January 2007 (exactly a year after being diagnosed with type-2 diabetes) I suddenly felt very ill. Literally within half an hour I went from feeling okay to feeling absolutely terrible. I’d already had influenza twice in my life, and that’s what I thought it was, as the symptoms were very similar: sudden onset, weakness, shivers, headache etc. My boss didn’t need much convincing to send me home - everyone who saw me agreed that I looked terrible.
So off home I went, thinking I’d be back at work in maybe four or five days at the most. Ha! Fourteen months later and I’m still not working. Little did I know at the time that I was going down with an illness which would change my life - Chronic Fatigue Syndrome, otherwise known as CFS, ME, ME/CFS, PVFS, CFIDS, fibromyalgia … I’m sure there are other names for it but that should do for now.
The symptoms were numerous and extremely unpleasant. I won’t list them all here, but the main ones were extreme fatigue, weakness (especially in my legs), poor sleep, weight loss, anxiety and nausea. And when I say extreme fatigue, I don’t just mean feeling really tired - I mean fatigued to the point where even talking for more than a couple of minutes was enough to leave me feeling breathless and worn out.
My doctor didn’t really know what to do with me. I had blood tests, x-rays, ultrasound scans, ECGs - everything came back normal. But there was clearly something wrong. I was pale and I’d lost nearly a stone in weight in just a few weeks. My mother nearly started crying when she saw me. I looked and felt like death. I honestly thought I might be dying. Eventually I was referred to a wonderful consultant who diagnosed me with CFS. At the time I felt an odd sense of relief. I wasn’t dying after all, and I could finally put a name to the illness which had left me a shambling wreck.
Fast-forward to today. I’m still unwell, but not quite as bad as I was during the early, ‘acute’ phase of the illness. Okay, so I still can’t walk very far and the list of symptoms is still impressive, but I’m hanging on in there. Having a warped sense of humour tends to help A LOT. That, mixed with a healthy dose of cynicism and a philosophical outlook, gets me through the day.