Chronic Fatigue

Least helpful comment of the week...

At a party this weekend, I became a bit weary and needed to lie down. It was a warm day, and everyone was in the garden except one person who was sitting on the sofa I needed to lie on.

'I need to lie down,' I said.

'On here?'

'Yes. I've got ME, and I need to rest.'

'ME? What does that stand for?'

'It's Chronic Fatigue.'

'Yes, but what does ME stand for?'

I understand that people are curious, but questions about the illness when you just need to rest aren't helpful. Next time, curious person at the party, ask me if there's anything I need, then leave me in peace.

‘Bloody hell Maria, what are you playing at?’

The words of a soon-to-be-ex-boyfriend when I told him I wasn’t well enough to go to the pub with him. It’s a common reaction to people in the early stages of Chronic Fatigue Syndrome (CFS or ME), and to be fair it was hard for him to understand how this lively 39 year old woman had gone from full-time work, caring for two teenage children and enjoying a full social life to someone who became exhausted crossing the room, struggled to string a sentence together and couldn’t bear noise or company.

For two years, my GP wrote certificates varying from ‘Debility’ (my employers didn’t appreciate that one) to ‘Tension’, and ‘Anxiety and Depression’. Stuck at home without the energy or money to distract myself from the illness – he’d have been depressed too.

A change of GP brought a diagnosis of a severely underactive thyroid amongst other ailments such as anaemia. In fact the only box that wasn’t ticked positive on the blood test results was diabetes. And, yes, my new GP said, you are chronically fatigued. It was a tremendous relief to have a diagnosis. I had been saying for two years that I thought I had ME, and the reply I received was ‘Depressed people do feel tired.’ I had worked for a mental health charity; I knew about the lethargy, the lack of motivation that goes with depression. I also knew that depression alone doesn’t cause fatigue as severe as I was experiencing. Not being believed can make you feel that you are going mad; my new GP’s diagnosis confirmed my sanity.

I was euphoric. Then I discovered that diagnosis does not equal miracle cure. Medication for the thyroid condition had some effect. My metabolism worked better; I shed the three stone I had gained, whilst eating next to nothing; my skin and hair regained their old lustre; I no longer looked ten years older. But the fatigue continued, albeit at a more manageable level. I went from zombie to toddler, walking to the end of the garden, then to the end of the road, and gradually building up. I had to relearn all my social skills. I had become afraid to leave the house, and could only overcome this by forcing myself to step out the front door every morning, as early as possible, before I lost my nerve and ran out of the limited store of energy I had for the day. I also had lost the skill of speaking on the phone. Phone calls exhausted me. Holding the phone gave me pains in my wrist and arm and my voice had little strength, so I either left calls to voicemail, or asked my children to screen them: Mum’s resting, can I take a message? Friendships were pruned down to those who understood. Some I ridded myself of deliberately, weeding out those who drained me emotionally and gave nothing back. Not everyone understood my need to do this. And I could be demanding on those friends that remained: only able to focus on my own difficulties, unable to hear about theirs.

It’s been nine years since my ex-boyfriend said those words. There was a film out at the time in which Jack Nicholson plays a man who has Obsessive Compulsive Disorder. There is a scene where he comes out from seeing his psychiatrist and addresses the people in the waiting room: What if this is as good as it gets? I’ve accepted that this may be the case for me; progress is slow and setbacks are frequent. Yet there are many blessings. I no longer have a stressful job; I have been able to study part-time, which I would never have been able to do when working; I have a fantastic circle of friends and family; I no longer let people that drain me into my life; I am now a writer. Sometimes when I wake from my afternoon sleep, groggy and aching, I haul myself upright, make a cup of herbal tea, lean back in my recliner chair with a book until teatime, and I think of all the people at work who would love to be doing what I’m doing.

Symptoms, treatment and advice – a personal view

It’s estimated that 250,000 people in the UK have CFS/ME. Symptoms include poor concentration or memory, overwhelming exhaustion, muscle pain, sleep disturbance, fluctuating body temperature, flu-like malaise, headache, dizziness, problems with digestion, burning/shooting pains, fibromyalgia and nausea, low tolerance to noise. I also have skin rashes, and have developed food intolerances and low tolerance to the effects of caffeine and alcohol.

There is no definitive diagnosis, as CFS is a syndrome, a set of symptoms. GPs are not always well-informed and there are some that do not believe the condition exists. This can cause difficulty when applying for benefits such as Disability Living Allowance (DLA). My former GP wrote just one word: ‘Depression?’ on his section of the form when I applied for DLA. I discovered this when I appealed (successfully) to try and get a higher rate. It was at this point that I decided to find a new GP.

Referral to a specialist may depend on where you live and other factors. I have never been referred. I was told that there was no-one in my area, and the only way to qualify for an out-of-area referral would be if I were younger and caring for children.

I have been offered a low dose of anti-depressants, which I declined. I also had Cognitive Behavioural Therapy (CBT), part of a package offered to me by a Community Mental Health Nurse who visited me at home once a week for several years. It was the initial mental ill health diagnosis that gave me access to the nurse; I probably would not have got this if I had the CFS diagnosis alone. CBT gets you to look at the positive side of every situation. I found that I had to get angry and look at the negative side sometimes, and CBT discourages this. I also did co-counselling, through a group I was already a member of, which encourages release of emotion through crying, shouting etc. I found this more helpful.

I was advised to build up activity and exercise slowly, and to find a balance between over-exertion and taking too much rest. This is something I’ve had to work out for myself. Exercise, when you have CFS, is like making a withdrawal from the energy bank: if you overdraw, there will be none to use in the days to come. Do a little more on your bad days, and a little less on your good days, and eventually it will balance out. Like love, you can’t hurry CFS; you just have to wait.

Complementary therapies

People who endorse complementary therapies can be evangelists; I am more of an agnostic. I have tried some supplements. These were costly at a time when I was living on state benefits. My GP was fairly supportive of my decision to take St John’s Wort, but advised me to find a good quality source and to stick to the same brand. He also warned that herbal medicines can have side-effects.

Supplements are sold with little or no information. They range from placebo, to helpful, to dangerous if taken in too high doses and without regard to how they react with conventional medicine. I would say, if you’re going to take that route, then see a herbalist or whatever for a proper consultation, don’t just go on a spree in Holland and Barrett’s. What this will give you is a good hour of holistic attention, which is all too rare in the NHS. I do wonder whether what people get from complementary therapists is lots of attention, never mind the supplements or therapy they prescribe. If GPs were able to offer this, maybe not so many people would feel the need to go for help elsewhere.

Hypnotherapy was useful for relaxation, though at around £30 a session I could only afford it when I was still employed. I have tried meditation, which promised recovery if I stuck at it; I didn’t stick at it. I went to a one day course, which was great, but I needed regular sessions. I saw a poster for a free meditation class. It seemed ideal. I sat and listened to a spiel about how the soul is located in the middle of the forehead, and that there is a fixed number of souls that are reborn when someone dies. Then the leader told us that disabled people were like that because of something they had done wrong in this or a previous life. I didn’t stay to hear any more.

I have had one session of Reiki, which had some effect, releasing tension and emotions, but I am unconvinced that this was the actual healing rather than having the attention of the healer. It had no affect on my energy levels, even though the healer said that she had opened the chakra, located between my legs, which would allow me to draw in energy from the earth. Apparently it was closed.

I am sceptical of those therapies that promise cures, and that their way is the only way. The argument is that you just need to have, or do, more of their particular answer to all ills. If you don’t get better, it leaves you feeling that it’s your fault; you haven’t worked hard enough. I have spent enough time blaming myself for my illness; I don’t need any help with this.

Self-help

I have already mentioned striving towards a balance of rest and exercise. I like to walk, but there have been times when I’ve pushed myself to walk too far, and have suddenly slowed to snail’s pace. It’s like when a runner ‘hits a wall’, except you can’t push through it with CFS. You just have to stop.

I take a yoga class once a week. I like its non-competitive nature. On a bad day, I can still go to class and be around people, even if I don’t manage to participate much. ‘Work to your measure,’ my yoga teacher says. On a good day I feel pleased with what I have achieved.

I try to eat well and drink plenty of water. I am mainly vegetarian (some fish), and I eat fresh food as far as possible, though I do have ready-meals on bad days, rather than exhaust myself cooking. Some people with CFS follow an anti-candida diet, eliminating sugar, alcohol, and a range of foods. I have tried to avoid wheat and dairy, but saw no improvement. In fact I was working so hard to find replacement foods that this made me more tired. Moderation is the key: I don’t binge on sugar or alcohol, but when your life is already limited, a piece of cake or a glass of wine can be cheering.

Getting up and dressed, even on the days that you can barely walk, gives a psychological boost. It’s so much better than staying in bed all day. You may have to lie on the sofa after the effort of getting dressed, but at least you have achieved something. My bathroom is downstairs. I used to take my clothes down with me in the morning, so I didn’t have to climb the stairs again until bedtime. Do things in short spurts. Wash up the breakfast things, but don’t try to clean the whole house. Have short spells on the computer, keeping in touch with people by email.

I haven’t joined any support groups. There isn’t one for CFS in my area, though there is one for Fibromyalgia, which welcomes people with CFS. I prefer not to focus on my difficulties, rather to engage with ordinary (and extraordinary!) life. I do have friends who have, or have recovered from, CFS, and talking to them can be helpful. Sharing a holiday with one of these friends meant that we supported each other and understood each other’s limitations whilst having a jolly good time.

Don’t sink into self-pity. It’s OK to be miserable or even angry at times; it’s an unfair illness. But don’t stay sunk. Do something, no matter how small, to pick yourself up. And most of all get help. I now have a cleaner, which leaves me with more energy to do the things I want to do.

How friends and family can help

For the first eight years of my illness, I didn’t have a live-in partner. I lived with my two daughters, who were in their teens when I first became ill. It was tough on them, and limiting when I couldn’t tolerate noise or company. I tried not to make them into carers. I probably went too far. I could have asked for more help. They both went to university, learned to drive, have careers and hobbies. I am proud that they managed all this, particularly when money was so tight. I believe that if you really want to do something you will find a way to do it. And both of them sure know how to budget.

At my worst, I couldn’t cope with long phone conversations or visits; what I wanted was short visits or calls. Letters and emails were even better, as I could read them when I had the energy, not have to respond to a call when I was too tired to hold the phone.

When practical help was offered, that was best of all. This included: doing the ironing, then taking my daughters ice-skating; taking me shopping, so I could stock up the cupboards and freezer, whilst the friend lifted the items off the shelves, packed the bags and unpacked them at home; cutting the hedge in my garden then taking me to stay at the friend’s house for a holiday; helping me to start socialising again. I had become fearful in crowds and closed-in places. A friend helped by taking me to pubs and cafes for ten minutes at first, then building up to half an hour and so on until I could manage, and enjoy, a full evening out. It’s a cliché, but it’s true: you find out who your true friends are.

I worry that I may not have been a good friend or mother. I could be either too demanding, or not demanding at all: not asking for help, so that situations got worse than they might have. I have had to learn to ask for help, and ask for it in the right way.

I now have a wonderful partner. I have to stop him from doing too much for me. It’s important that he looks after himself, and this includes doing some of the things that I can’t participate in, like late nights out. There’s no point in him staying home when I’m asleep soon after nine o’clock. And besides, when’s a girl to wax when the chaps are around?

***

People I meet for the first time ask what I do. I say that I write, but that I’m not able to do much because of chronic illness. Some reactions are: ‘You must be able to do some kind of work’; ‘How did you get it? Did you have a bad dose of flu?’ Or they know someone who has CFS and is totally bedbound and barely able to blink: they are always much worse than me. Could I work? I’ve worked part-time, and had to sleep for three hours after working for three hours. How did I get CFS? A combination of stress, failure to rest when I was ill, pushing myself to work too hard, the untreated thyroid condition, maybe a family link, as my brother has had CFS too. It doesn’t matter how I got here; finding out isn’t going to cure me. I just need to deal with the here and now.