Chronic Fatigue
Staring into a stranger’s eyes
Success without a hearing
Tribunal date
The Kafkaesque world of reassessment
Working and resting – managing to write with limited energy
ESA appeal update
A change of GP, and a respite in DLA reforms
A bit of a slump
ESA update
Taking up our beds and walking – ‘Disabled or Faking It?’
UPDATE 3 August 2012
Are Drugs the Answer? (Part Two)
Re-framing Disability
There is an excellent and thought-provoking film accompanying the Royal College of Physicians’ exhibition Re-framing Disability, featuring my writer friend Jane Stemp-Wickenden. In my (paid) working life, I worked with people with physical disabilities, those with severe learning disabilities and, for seven years, ran a mental health advocacy scheme. I then became ill, and acquired a label of disability for mental ill health and chronic fatigue syndrome – both invisible disabilities. I also grew up with a disabled sister, in a family where her disability was at best not acknowledged, at worst seen as an inconvenience by our parents. My nephew, who has a disability, is also coming to the end of his schooling, and has opted to find his own way in the world of post-16 training and work, rather than be part of a ‘special’ training and work scheme. So this film rang lots of bells for me, and made me wonder how far the world has come since my sister was young, and since I first worked with people with disabilities twenty years ago.
posted 21 April 2011
Other health problems and Chronic Fatigue – are drugs the answer?
In recent months my health was been worse than usual. Last September, I had a septoplasty (nose op to correct a deviated septum); an attack of sciatica that has been going on for 3 months and counting; and now I have a high cholesterol reading. So how has the NHS been helping me, and understanding these conditions with reference to chronic fatigue? The answer is… hardly at all.
The consultant surgeon – whose bedside manner consisted of one phrase: Good for you – said that I would recover from the op in two weeks, and that my chronic fatigue would not be a factor. My husband silently fumed: on what evidence did he base that comment? He could find no research on the effects of general anaesthetic or surgery on chronic fatigue. Of course, it took me three months to recover, and the consultant had to admit that chronic fatigue was probably responsible for the longer recovery period.
For sciatica, I have been treated by the European School of Osteopathy in Maidstone, by a lovely student, supervised by her tutor. My chronic fatigue has been taken into account all along, and some additional treatment and advice has been offered, as well as treatment for my back. It’s the first time that any kind of treatment has taken into account all my health problems. I have been in tears in some sessions, just because the whole me is being treated. A few weeks into treatment, I saw my GP to talk about pain relief. He was dismissive of osteopathy, didn’t want to know what their diagnosis was, and instead gave me a 30 second physical examination and some very strong painkillers. These made me feel so weird, I decided that the pain was better.
And now I have been diagnosed with high cholesterol, despite having a fairly good diet. There is a family connection of heart problems and stroke, so it is not to be taken lightly. And it’s possible that my enforced sedentary lifestyle over the last six months is a factor, with the health difficulties listed above plus the ongoing fatigue problem.
The GP has suggested Statins, which are known to have side-effects including muscle aches. This is something I already suffer from. Is there any research on how statins affect people with chronic fatigue? I shouldn’t think so. But I have decided to address my diet and up my exercise rather than risk the statins. In the meantime, I intend to find out more about statins and other ways to reduce my cholesterol.
I’m not anti-GPs or conventional medicine. I have an under-active thyroid, and was almost in love with my last GP when he put me on thyroxine. But please treat me as a whole person, Mr Doctor, and don’t be blinkered by your training and the idea that drugs are the only answer.
posted 21 April 2011
Being Invisible
I have written before on this page about access, but not about being invisible. That is, being visibly able-bodied, but actually disabled: having an invisible disability.
This week I wanted to buy tickets to see Fleet Foxes and Villagers at the Eden Project. There is no information about disabled access on their website. On phoning their box office, I was told ‘There is no seating’, then ‘There is a platform for wheelchairs’. I explained that I am disabled and need a seat, plus one for my carer, and that you don’t need to be in a wheelchair to have access needs. The woman on the telephone went off to ‘ask someone’, and after several minutes said, yes, I could have a seat and a free ticket for my carer. I have not had an answer to further questions I sent by email: do I need proof of my disability and further ticketing to access the disabled platform? One ticket is just an ordinary ticket, and the other says ‘Carer’; I am concerned that there will be no seat for me when I get there.
Two years ago I went to see Neil Young at Hyde Park. Ticketing was handled by Live Nation, and I had a personal service with a box office person dedicated to disabled access. I had to provide a copy of my entitlement to Disability Living Allowance (DLA), and was supplied with a ticket for the access platform, a free carer’s ticket, and was given details of a designated gate for people with access tickets, so as not to queue for too long. All good, so it seemed, until our taxi driver tried to drop us off near this gate on the day. Top marks to him, he turned the tariff off and drove around for ages, eventually driving in where it said ‘No Vehicles’ and asking a steward with a buggy to give us a lift to the gate. It would have been a long walk from the road. Then, whilst in the queue, a young steward challenged us loudly, asking if one of us was disabled, because we didn’t look as though we were. I explained my disability to her, but felt crap, as if she had accused me of stealing or buying the ticket off someone who really needed it.
Last May, as part of a short break to celebrate our anniversary, my husband and I went to Hever Castle. The man selling tickets at the gate shouted across to his colleague when I asked for a concession. He shouted back ‘Is she in a wheelchair or blind?’ these being the only disabilities that warranted a disabled concession. I shamed him into giving me a concession, but by this time the entire queue knew why I needed it. Truth is I could not enjoy all of Hever Castle’s attractions, as I got exhausted after a short while, and because I was so angry at the ignorance and lack of respect.
The Disability Discrimination Act came into force in 2004, and was replaced and incorporated into the Equality Act 2010. So, we are six plus years on from legislation, and how far have we come? The people I dealt with, mentioned above, should have received training in disability awareness, but have they? I don’t think so.
More about the Equality Act and disability here.
posted 20 February 2011
What’s been useful, and what’s not in 2010
The things I have done this year that have been useful: taking a weekly yoga class; doing daily yoga stretches; getting a regular massage (not always relaxing, but really getting to unknot those years of tense and aching muscles); joining a community choir; eating better with a low GI diet; having my own room made in the shed at the end of the garden, where I can get away from the world and its pressures.
Not useful: the ‘helpful’ suggestions of some people. The most outlandish was from someone who claimed that her friend had cured himself of chronic fatigue syndrome by pretending to be a horse and carrying people on his back. This might not be my cure, she added; she urged me to act out my own fantasies. Another person suggested that my success in writing competitions this year could be just the thing to make me recover from my illness. As if eleven years of illness could be swept away by some good news.
posted 22 December 2010
Research and other news
There has been news this week that Chronic Fatigue Syndrome may be linked to a virus (research carried out on young people with CFS). This could lead to more research regarding diagnosis and treatment. So many people are disbelieved by the general public as well as the medical profession, so if a definitive diagnostic tool could be developed, that would be a great thing.
I finally got my diagnosis confirmed in April this year, after nearly 11 years of illness. A former GP diagnosed me about 9 years ago, but now a consultant has confirmed it. So am I any better off for having the diagnosis confirmed? It was useful to hear the consultant say, ‘I do believe that you have these problems, and I apologise for some of my colleagues in the medical profession who don’t believe CFS exists.’ He then discharged me. Nothing he can do. This brings me back to the point that the majority of chronic fatigue sufferers just don’t get monitored or supported.
As for self-help, I am trying to improve my sleep. At night, I wake several times and stay awake for long periods. In the day, I have to rest in the afternoons, and sometimes sleep for a couple of hours. I saw a TV programme recently that recommended that daytime naps should be restricted to 30 minutes, so now I am setting an alarm for my afternoon nap. I still have to rest, but read or watch TV rather than sleep. So far, after a week, I am still waking in the night, but on the whole I can get back to sleep rather than lie awake for hours. Thank God for Radio 4 and the World Service, which I listen to in the small hours.
posted 11 September 2010
An update…
I’m most grateful to those readers that have got in touch with me about this page: some who have CFS themselves; others who are just interested.
I have had my appointment with the consultant physician at the William Harvey Hospital in Ashford: a very nice, human man, who gave me nearly an hour to go through past and current symptoms. The numerous blood tests that he ordered have all come back ‘normal’, so nothing else going on that I didn’t know about. He was quite concerned about my chronic sleep problems (of 10 years standing), and felt that I should have been referred on for this before. I am due to see him again in April. I fully expect that the CFS diagnosis (made by a GP in 2001) will be confirmed, and that there will be little else that can be done for me. So has all this been worth it? Digging up past and current health and symptoms has been very painful for me, not to mention exhausting. On the other hand, this hour with the consultant is the most time I’ve had from a health professional in over 10 years to look at all my problems (not just mental health). It does make me feel like someone cares and that I am being taken seriously. People with CFS are so often disbelieved, and having a consultant confirm my diagnosis gives it more validity.
posted 28 January 2010
On GPs and benefits
I recently went to see my GP, as my symptoms have been getting me down. My former GP was very good; he would give me time to just talk, even though there is little that can be done for chronic fatigue sufferers. It helped me to know that someone cared, and that I was doing all I could to manage the illness. This new GP immediately told me that he couldn’t deal with this in a short appointment and that I should come back for a longer appointment with a written account of all my symptoms. He also picked out ‘depression’ from my old notes and said that a diagnosis of Chronic Fatigue Syndrome was controversial, as some doctors don’t believe it exists. He doubted that my former GP was qualified to make the diagnosis (which was the case), and suggested, I felt, that I had decided I have CFS, and that I was really just depressed.
I duly booked a long appointment and came back with a written account of the history and current symptoms. I found him a bit more respectful towards me this time, though he clearly doesn’t know a great deal about CFS. So, for the first time in 10 years of chronic illness, I have been referred on to see a general physician. If there is anything going on that hasn’t yet been diagnosed this will be investigated, or I shall just get a second opinion on the diagnosis I was given by my former GP.
I accept that not much can be done for people with CFS, but it would be good to have some monitoring and listening from a health professional on a regular basis. So many people are diagnosed, then left to their own devices.
I also received a lengthy form regarding my Incapacity Benefit. This happens every two years: a long form to fill in, most of which has little relevance to my illness; a report requested from the GP, which confirms what is on my form; then I get called for a medical, so a doctor (who doesn’t know me) can check again all that’s on the form and the GP’s report. The first time I was called for medical, my community nurse wrote to the DWP and said I was far too ill to attend a medical, and it was cancelled. The next time, I went along to the medical with my nurse. It lasted all of five minutes. I think the doctor took one look at me and saw no point in testing my fitness for work. The last time, I went with the nurse again and was given a full medical lasting about 50 minutes. It was exhausting, and I was asked the most strange questions: what do you do first thing in the morning; what do you drink throughout the day; do you stand up when you do the ironing? All was well, in that the doctor decided that I was unfit for work and my benefit continued. But later in the day, after the medical, I felt totally worthless. Why would anyone want to live with the person I’d described to the doctor? What sort of life did I have? Most of the time I don’t think about being an ill person, I just get on with my life. Having to examine my illness that closely did me no good. And here I am again, having to go through the whole process once more.
posted 13 December 2009
Support groups
I was introduced to another Chronic Fatigue sufferer at a party this weekend. Someone suggested that we could start a support group in the area. My heart sank.
Before long, we were sharing symptoms and terrible stories – a support group could only be more of the same. Any sufferer I meet seems to be worse than I am, which makes me want to apologise for my recovery. So I am happy to start or take part in a poetry group, or a writing class, or a gentle exercise class, but ME support groups – no thanks. There is more to me than my illness. I have better labels to live up to – writer, mother,lover, friend.
posted 22 June 2009
Special assistance, or ‘Isn’t being disabled brilliant?’
I used to be too proud to ask for special assistance, but have found it has worked out well at times. At a gig, for which I had won tickets, I discovered that it was standing only, but on asking for help I was given a seat in the disabled enclosure with a brilliant view of Seth Lakeman (who is worth looking at!). I have also booked tickets for Neil Young’s concert at Hyde Park in June, and have received a free carer’s ticket, plus a guaranteed seat on the raised platform. The South Bank Centre also has a scheme that allows carer to go free. It is always worth asking; assistance can usually be offered on proof of receipt of Disability Living Allowance. Sometimes it is taken on trust; in Padua, Italy, I recently got concessionary tickets to an exhibition just by saying I was disabled.
So I decided to ask for special assistance at the airport on flying to and from Venice for my honeymoon. On the outward journey, new husband misjudged how long it would take to get to the airport, so I missed out on any help and had to run through the terminal to book in two minutes from the closure of the flight’s booking. I was not amused – yes, I can run, but it takes it out of me, like withdrawing too much from the energy bank. Plus remind me to wear a sports bra next time.
On the return flight, after speaking English loudly to an Italian Easy Jet staff member, I got the assistance I had booked. This caused tutting from the woman behind me in the queue, and the man I sat next to on the plane remarked, ‘You didn’t look disabled when you got on the plane’. Once again I had to go into the short explanation of Chronic Fatigue Syndrome, good days and bad days. I wish that people would understand – you don’t have to have a stick or a wheelchair to be disabled.
At Gatwick a very nice man met me from the plane with a wheelchair. He wheeled me through the terminal, going to the front of the queue at passport control, and only relinquished custody of me when we got to the car. It was excellent service (even the honeymoon innuendo, which was quite funny). I couldn’t help wondering, though, if anyone had seen me running through the terminal the week before…
posted 28 May 2009
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?
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