Chronic Fatigue

Staring into a stranger’s eyes

I spent a wonderful weekend at the Wise Words festival in Canterbury. Just by chance, I joined a workshop, in a yurt, run by Jamie Catto. It was uncomfortable at times, and I guess I was not the only participant to put my blocks up against a guru-type figure who might just think he had the answer to everything. Before the workshop started, unsure if I would have the energy to stay the course, Jamie Catto told me that I had to commit to the full workshop; there would be no coming and going. I wondered whether the doors would be locked, we’d be deprived of food and drink, have our personalities erased and emerge as smiling beings, having signed all our earnings and belongings over to Jamie Catto. Despite these fears, I stayed.
One of the exercises was to stare into the eyes of a stranger for six minutes without talking. I have been having trouble with my eyes, and feel self-conscience about them. I have just been diagnosed with thyroid eye disease, and have one eye that stares wider than the other, plus a swelling over that eye. I spent several weeks hiding away, not wanting to be seen, wearing dark glasses when out. The eye consultant tells me that my eye might not go back to how it was before. I cannot hide for ever; this is something I have to get used to.
So, being asked to stare into someone’s eyes opened up a whole Pandora’s box of vulnerability. I wept, my staring-into-eyes partner and I smiled and giggled. But, she didn’t turn away in disgust, and the physical discomfort in my back and stomach shifted as we sat. It’s something that came at just the right time for me; to realise that maybe my eye is not as horrendous as I think it is, and even if I do look different from how I used to, I am still the same me.
There is much that I gained from the workshop, a great deal of it challenging my behaviour around my illness and my ‘suffering’. Here comes the but … at the beginning I did that thing I do, telling Jamie Catto that I might not be able to stay or do everything required because I have chronic fatigue. Later in the workshop, he asked how my energy was – it was OK; I managed to stay the course. Then came the suggestion that I would leave the session with better energy, that if I took on board the things I learned that afternoon, I would recover.
I pushed myself to stay, and am glad that I did. Today I have the aches, tiredness and fuzzy head that I get when I do more than I should. I know that these will persist into the week. Chronic fatigue is no more about wrong-thinking than having diabetes, a broken wrist or cancer.
A student osteopath asked me, last week, why did I think I had thyroid eye disease. Her suggestion was that it was caused by the mind, by stress, by my body reacting to wrong-thinking. It took a deep breath before I could say, calmly, ‘I understand what you’re trying to say. I accept that there is a mind-body link with illness. But I have thyroid eye disease because me thyroid isn’t working properly.’ The same goes for chronic fatigue – my body isn’t working properly. It is less easy to pin this to a particular cause. Osteopathy helps me to manage the pain of the musculo-skeletal problems I have; it’s not going to cure or manage thyroid eye disease, nor will it cure chronic fatigue.
The link between these two things – the workshop leader’s and the student osteopath’s comments and beliefs – is people that feel they have the answer. I have not so much an allergy as an intolerance of them. And I do get tired of people feeling they can comment on my illness like that – it’s like being pregnant and strangers thinking it’s OK to touch your bump.
posted 16 September 2013

Success without a hearing

Five days in advance of my tribunal date, I received a letter from the DWP. They have reconsidered their decision on looking at the appeal evidence, and I have been placed in the Support Group for ESA. I do not have to go to the hearing. It has taken 11 months to get here, and I am relieved, but also angry that I have been put through this, that it has taken so much out of me. I am not sure if the new assessment will go ahead; the letter said I will be reassessed within 12 months. When I can pluck up the courage, I shall phone the DWP and ask. But for now, rest and recovery are the order of the week. Thanks to everyone for their support through this process.
posted 8 July 2013

Tribunal date

A quick update – the date for my ESA independent tribunal hearing is 10 July 2013, just about a year since my Work Capability Assessment, which placed me in the Work-Related Activity Group. I have the good fortune to have a friend representing me. We have gone through all the papers and believe we have three grounds to have the decision overturned, including Regulation 35, ‘exceptional circumstances’, which covers cases where being asked to take part in work-related activities would be a substantial risk to the health and wellbeing of the claimant or other people. This is the reg. that people with CFS/ME need to know about.
My new claim form for ESA is with Atos, and I am expecting a new Work Capability Assessment date soon. I am hoping that, if the tribunal finds in my favour, they can make a recommendation to stop the new assessment. I am not sure this is within their powers, though I have heard they can recommend that claimants are not reassessed for a couple of years.
posted 20 June 2013

The Kafkaesque world of reassessment

It’s exhausting, it’s crazy, it’s beyond belief. It’s 10 months since I lodged my appeal against being placed in the Work-Related Activity Group (WRAG) of Employment and Support Allowance (ESA). For those that don’t understand the complexities of this benefit, which has replaced Incapacity Benefit, there are two levels – WRAG and the Support Group. Support Group claimants get the benefit indefinitely (until the next assessment); WRAG only for 365 days if theirs is Contribution Based, longer if Income Based. I am Contribution Based and have been placed in the WRAG, expected to take part in work-related activity with a view to being fit to work by the end of the 365 days.
I am not capable of regular work. I get exhausted by activity. I have spent 5 of the previous 6 weeks unable to do much at all. Hence my appeal, asking to be placed in the Support Group. The upside of having an appeal pending is that the DWP cannot make me take part in work-related activity. The downside is the stress of having a sword of Damocles hanging over my head, and that the independent reviews tribunal service is backed up, so it may be over a year from when my appeal was lodged until it finally gets heard. My benefit will have run out by then, and I will get no money until (and if) the tribunal finds in my favour.
This week, I received a new ESA50 form, to make a new claim for ESA. I thought there must be a mistake. How can they reassess me when my appeal is pending? So I followed the branches of the telephone tree at my local Benefits Centre for 5 minutes (you have to type in your National Insurance number, a memorable date and the numbers of a PIN) and waited another 10 minutes to speak to someone. She sounded stumped by my question, ‘Why do I have to fill in a new form when the appeal is pending?’ The line went silent. I thought I had been cut off. She said she would get a colleague to phone me back. Said colleague spoke so fast I had to ask him to repeat what he said more slowly. I told him that my brain does not process things fast. I was desperately trying to write down what he said. He told me that I do have to fill in the form, as it assesses my work capability now, whereas the appeal will look at my work capability when I was assessed face-to-face in July 2012. He told me not to worry, to sit down with a cup of tea and fill out the form. He might as well have patted me on the head. I eloquently told him that it would take a lot longer than the time it takes to drink a cup of tea to fill out the form. The last application took hours over several days, with my husband filling in the form while we decided between us what to write. I became exhausted at each session and distressed and having to relate how my illness affects me day to day. It made me wonder why my husband would want to be with the person I was describing.
I have the choice not to fill out the form, but that would mean that my benefit would stop. It will stop on 24 August anyway if my appeal has not been heard. If the appeal finds in my favour, the new assessment will supersede it. All that I will get from the appeal hearing (if it finds in my favour) is being believed, and the satisfaction of knowing that Atos (who conduct the assessments) and the DWP got it wrong. The new assessment could place me in the Support Group and my benefit will continue; it could place me in the WRAG again, in which case I would have to lodge a fresh appeal, would get no money after 24 August, and probably have to wait another year until the new appeal is heard. Are you still following? I’m not sure if I am. I am a bright and capable person with people to support me in form-filling, attending assessments and appeal hearings. What about the people who are baffled by the process? Who can’t face filling in forms? Who have taken their own lives because of this harassment?
A creative response to the benefits situation is Fit to Work: Poets against Atos. You can look at their website by clicking here.
posted 17 May 2013

Working and resting – managing to write with limited energy

This last month I have been laid low by a relapse of Chronic Fatigue Syndrome. I missed out on the Poets in the Orchard event, which I had organised; I gave away my ticket  for The Staves gig in Ashford. Nothing to be done but rest and wait, take a little exercise when I could, and hand over some tasks to other people. It’s hard to think that life goes on, events happen without you, but they do. And things can wait a while. As I was becoming more tired, before I stopped and rested, I committed to giving a talk at the July meeting of the Kent Writing and Wellbeing Network. The theme is to be writing with limited energy. At the last meeting of the network, the speaker, Reinekke Lengelle, asked us to write a question about a dilemma. Mine was ‘How can I work in a way that doesn’t drain my energy, creativity and my own writing? How can I get help to do this? How can I break the fear that work is going to be as horrible as it was before I got ill?’ In writing my own presentation, I am coming to realise that I seldom follow my own advice. I still write until exhausted; I think I am the only one able to do certain tasks: sometimes I don’t write at all when I could; I don’t always ask for or accept help. It’s an all or nothing approach to work, which perhaps led to my illness.
I am hoping to learn through writing my presentation, or to relearn and practise the things I already know. I am referring regularly to Michael Nobbs’s blog: Sustainably Creative for tips on how to manage creativity on limited energy. And I have been offered help and support with the presentation by another member of the group, which I shall accept.
Thanks are due to my husband, Bob Carling and a few good friends (hello, Anne-Marie!) who have taken on some of my Cultured Llama tasks and kept me company during my recent relapse.
posted 26 April 2013

ESA appeal update

Six months after I appealed the decision to place me in the Work Related Activities Group for ESA, I have received the DWP’s decision. The decision has been upheld, and my appeal will now go forward to the independent tribunal, which could take a further eight months, so I am told. My contribution-based ESA stops on 23 August. I asked what happens if the appeal has not been heard by then, would I still receive ESA pending the tribunal hearing. The answer was no, but ‘Not to worry, as it will be all done and dusted by then.’ Easy for her to say, when I know the appeals system is clogged up, and this could take a year to be heard. If I were placed in the Support Group for ESA, then the benefit would be continuous; Work-Related Activity Group ESA last for only 365 days, by which time you are expected to be able to work full-time. I wish I could receive a miracle cure, to make this possible. I’d like to have their crystal ball that they could foresee the future for me. 14 years of debilitating chronic illness suddenly gone! How marvellous of them to predict such a bright future for me!
I feel disbelieved, helpless, hopeless and angry in turns. What part of the following do they not understand? I cannot do more than a couple of hours of activity without getting exhausted. Some days I can do nothing at all. Activity can exhaust me for several days. Yesterday, I felt like giving up. I wondered if they were right, that I am capable of working, that if I just tried everything would be fine. Rubbish. I have tried part-time work before under the Permitted Work scheme, and ended up exhausted. I worked 10 hours over 3 days, and had to sleep in the afternoons for the equivalent number of hours that I had worked that day. I could not work two days in a row. I tried, I just couldn’t.
I understand that the independent appeals tribunal overturns around 40% of the DWP’s decisions about ESA, so I must live in hope of being believed, of receiving some compassion, to have this sword of Damocles removed from over my head.
posted 15 February 2013

A change of GP, and a respite in DLA reforms

Due to the problems I have had with my GP (see below) I wrote to him about the lack of care and management, asking him to do three things for me, which included adding the letter to my notes. I received no reply after 11 days, and had come to the point that I never wanted to see him again. A doctor is supposed to  make you feel better; every time I saw him I felt worse – disbelieved and dismissed. So I set about finding a new doctor. This is supposed to be easy; patient choice has been extended this year. You should be able to change GPs without giving a reason, and surgeries should take you on as long as they have space on their list. This proved not to be true. Two surgeries would not take me on, as I already had a GP. The Primary Care Trust said the only way to get round this would be to to deregister, wait two weeks, and try again. I could not cope with the stress.
At last, I found a surgery to take me on. They said yes to all my questions on the phone, so my husband and I went straight there and registered. Thank goodness I never have to set foot in the old GP surgery again.
One of the problems with CFS/ME is feeling a lack of control over the condition, and the couple of days when it seemed impossible to escape a poor GP added to this feeling. So it’s out with the old and in with the new – whilst in the mood I took a load of old Christmas decs to a charity shop and bought some new ones, and changed energy suppliers. Onwards and upwards and into the new year.
I am cheered to hear that the changes in Disability Living Allowance have been delayed. All existing claimants (I have been awarded DLA indefinitely) will now be left until October 2016 before being assessed for the new PIP (Personal Independence Payments). As the migration from Incapacity Benefit to Employment and Support Allowance has been difficult – personally and for many, many claimants – a respite from the new changes is welcome. I doubt that I shall be eligible for the new benefit. I am tired of the goalposts being narrowed.
posted 17 December 2012

A bit of a slump

My health is poor at present. I tell people that I am unable to come to events because I am ‘unwell’, or that ‘my health is not good at the moment’. It’s strange, saying I’m ill at present when the truth is I am ill all the time, and have been for 13 years. More ill than usual would be the correct description.
Following a heavy cold and a crop of cold sores that each felt the size of the Tower of London, I have an outbreak of Erythema Multiforme (EM), a skin condition from which I have suffered since the day that Tony Blair came to power ( May 1st 1997). Yes, it was on that day that the first unsightly, painful sores arrived on my hands, and I have had doses on and off since then. Sadly, the condition did not clear up when Blair stepped down, and this proved to be a cross-party illness, resistant to new regimes. The current outbreak is the worst I’ve had in about 10 years. My hands are covered in lesions and my feet have some too. There are also sores in my mouth. I am typing this using middle fingers only, as sores on my other finger joints prevent me from bending those fingers.
I shall try to keep the saga brief, of mis- and lack of treatment. GP number 1 gave me steroid cream, which I have discovered only this week should never be used. GP number 2 diagnosed Erythema Multiforme, and at one point put me on oral acyclovir for 6 months, which broke the cycle of repeat outbreaks. GP number 3, as is his wont with any of GP number 2’s diagnoses, said GP number 2 was not qualified to make the diagnosis, that it probably wasn’t EM. He argued with me throughout the consultation, when I asked for a referral to a dermatologist. He gave me a referral and, right at the end of the consultation, he actually looked at my hands and said ‘Oh, that does look like Erythema Multiforme.’ Dermatologist appointments – brief, abrupt, blood tests and a biopsy. Only management advice was to take no painkillers other than paracetamol. He also put me on two kinds of anti-histamine for three months, which had no effect except to make me more tired. The tests did not turn up anything sinister (it is difficult to pinpoint any specific cause for EM). He discharged me without telling me, as I discovered when I phoned the clinic as I had not been sent a follow-up appointment.
With this current outbreak I am feeling let down and without hope of any proper treatment and management by the medical profession. The most helpful person has been the village pharmacist, who recommended some cream for my hands and feet, and some lotion for my mouth sores. He looked up the condition and said that it is either viral (hence no steroids) or auto-immune in origin, which is more than any GP or consultant dermatologist has told me in 15 years. I wonder if my CFS is connected to the EM, since the EM predated the CFS, but as neither condition attracts much (if any) research funding, I shall never know.
Apart from the pain and the unsightliness – it looks like a plague of boils – my independence is compromised. I find it difficult to prepare food, to lift a kettle to make myself a drink, and I can’t wash my own hair. My husband is patient, helpful and tender, but I hate having to ask him to do so much. A friend came over to help and we dealt with it with good humour, when I asked her to get my change out of my purse etc, but it was frustrating to have to ask her. When I do things for myself it takes twice as long, working out how to hold things without bending my fingers and avoiding knocking the sores against worktops, the sides of my handbag etc.
A couple of people have suggested that I have a bad outbreak because I have been overdoing things. This may or not be true. It doesn’t change things now, if this is the case. It doesn’t help me manage my health at this very moment. And if I were to only stay within the limits of my energy, life would be very boring indeed. I have the right to overdo it if it gives me feelings of achievement and enjoyment to balance out the times like these. Having said that, I appreciate the concern and love of those people who made the suggestion that I should do a little less when I am ‘more well than usual’. I know they are trying to help, as are those that have given multiple suggestions as to how to manage my multiple illnesses. I can only hope that one of them can come up with a miracle cure, or one little thing to make my life more bearable, but I’m not holding my breath.
Re the DWP and ESA (see below) – I have yet to hear about my appeal, sent in three months ago.
posted 21 November 2012

ESA update

There was quite a response to my piece on ESA and ‘Disabled or Faking It?’ (below). I have never had so many people look at my site in a day. I received several messages from people in a similar position, feeling bullied by this process and by the way that Atos is handling the ESA assessment process. There were some very moving stories and messages of support. In a short update to the piece, I received a letter telling me that I have been placed in the work-related group, meaning that the DWP expect that I shall be able to return to work after a year. I wish I had their crystal ball and powers of healing for a condition that I have suffered from for 13 years. I have put together an appeal letter with the help of an advocate. It was very tiring and stressful to do this, and I would much rather spend my time and limited energy on doing things that I enjoy and that help my health.
I received a detailed report of the face-to-face assessment (Work Capability Assessment). This is called the ESA85, and I would recommend that anyone going to appeal gets hold of their personal ESA85. I agree with many statements made by the assessor, but there were many omissions. She had given me zero points for mental health, whereas she asked me nothing at all about my mental health. It was also surprising to read comments about how I was dressed and how well-kempt I was. She even noted ‘could easily reach into her bag to get a tissue’. This was when I became tearful. I was greatly surprised that with her assessment of my physical health, pain and fatigue that she still placed me in the work-related group. Though, from what I understand from the Panorama and Dispatches programmes, assessors are being told to only place 12% of people they assess in the Support Group (who will not be required to undertake work-related activity). Atos and the DWP deny that this is the case.
I shall update this page when news of my appeal comes through. I am told that it can take about 3 months to review a decision and a year to get a face-to-face tribunal
posted 24 August 2012

Taking up our beds and walking – ‘Disabled or Faking It?’

Last night I watched a Panorama programme ‘Disabled or Faking It?’ on ESA (Employment and Support Allowance), which is replacing Incapacity Benefit. I have been on the latter for 12 years and am being ‘migrated’ to the former. I have kept quiet about this in my public life. There will always be people that think that I do far too much to be languishing on disability benefits. They see my Facebook and Twitter updates about the positive things I do; rarely do I complain about the days of being unable to do much at all, about staying at home when I send my husband off to parties and other celebrations that I can’t go to because I can’t sit upright for a whole evening, about cancelling lunch dates with friends as I’m unable to cope with a short journey. But today, after watching the Panorama programme, I am coming out of hiding and having my say.
As I write, I await a letter from ATOS, the company charged with assessing claims for ESA. The process began several months ago when a long form arrived for me to complete. I did this with the help of my husband. It took several days, going through it a couple of hours at a time. It was extremely exhausting and stressful. I had to describe myself at my worst. My husband filled in the gaps, pointing out things of which I was not aware; he apparently tells me things when I have woken from my afternoon rest that I later have no recollection of. My concentration is poor in the afternoon, I knew that already. I don’t take phone calls after lunchtime as I know that I will make little sense.
Last month I had a medical assessment for ESA. I was very stressed at the prospect, feeling sick and shaky. As my husband and I waited to be seen at the medical centre in Chatham, a woman stood alone, shaking and crying, clearly in no fit state to be attending a medical, let alone be found fit for work.
I have to say that the assessor, who was a disability nurse, was very empathetic and understanding. She gave me to believe that I would be placed in the ‘support group’ and would not be seen as fit for work. In my case, I could not sustain a regular pattern of activity to make work viable. Her findings will now be with a decision-maker, and I await a letter.
The Panorama programme stated that only 0.5% of disability benefit claims are found to be fraudulent. We all see the stories on the news of claimants seen running marathons, scuba diving or (worst of all) dancing. Well, I may not be capable of running or diving, but I do like a dance now and then. I pay for it for days afterwards, but I enjoy it at the time. What we don’t see so often are stories of people who are severely incapacitated being found fit for work. This programme highlighted some tragic cases, including a man suffering from heart failure who was found fit for work and, in an effort to try his best to do some activity, died of a heart attack.
There were also several instances of people being found fit to go ‘back to work within a year’ (the idea is that they will get support to do so), who then appealed successfully against the decision, only to be reassessed within months. Chris Grayling MP, who spoke on the programme, accused the medical tribunal judges of failing to see that these people were actually capable of work and would benefit greatly from being back in work. It’s hard to see the veracity of this with the man with emphysema who cannot walk more than a few steps without having to stop, who is unable to climb his own stairs; with the man with bipolar disorder who was in hospital, sectioned under the Mental Health Act, when his letter arrived declaring him fit for work.
Chris Grayling seems to be under the impression that those of us with incapacitating conditions lead unfulfilled lives, stranded at home – lives that could only be improved by being back in the workplace. Do you know what, Chris Grayling, many of us have worthwhile lives, taking part in activities within the limits placed on our day-to-day living. As for me, I write, I occasionally lead creative writing workshops (even though a two-hour workshop will leave me laid up for several days), I organise arts events, I am an editor for an indie publisher. I pace myself to do these things; sometimes I don’t and I suffer the consequences. My husband does much of the work that requires stamina and time that would cost me dearly.
For the past few months I have lived in fear of the Department for Work and Pensions. Would someone see me going to the gym, where I do a gentle Pilates class and then sit in the jacuzzi when I am well enough? Would someone see that I am editing an anthology for Cultured Llama, which I do for an hour or so at a time when my concentration is better than usual? But now I feel it’s time to come out – I am disabled, but I don’t spend my entire life lying on the sofa in a darkened room with a damp flannel on my forehead. I make a valuable contribution to my local community and (I hope) to the world of writing. But I am not capable of working full-time, nor of sustaining a regular pattern of part-time work.
As I write this morning, the BBC Today programme on Radio 4 mentions a report  by SCOPE that attitudes towards people with disabilities have worsened over the last year. I would go as far as to say that the demonization of the sick and disabled is underway.
I do hope that the government reconsiders the path of ESA assessments. A welfare rights worker on the Panorama programme said that around 90% of the ESA appeals he attends with clients are successful. Even by the government’s figures, around a third of appeals overturn the ‘fit for work’ decisions. Yet Chris Grayling believes that the appeal decisions are wrong, that the judges don’t see that these people could go on to work with the right support.
The stress of this process is affecting the health of people that are already fragile; some will be bullied into withdrawing their claims, others will attempt to do their best to try working, sometimes with tragic results.
Get real, Chris Grayling. Spend some time with some of these people and see how limited their lives are, and then say that their lives will be enhanced by taking up their beds and walking.
Meanwhile, I await my letter from ATOS…
posted 31 July 2012

UPDATE 3 August 2012

I received my letter from the DWP today, and have been placed in the work-related group. I shall be appealing.

Are Drugs the Answer? (Part Two)

This is an addendum to the post below on other health problems and chronic fatigue. I visited my GP this morning about a minor complaint. Without asking me why I had come, the doctor asked why I am not taking the statins he prescribed six months ago, for raised cholesterol. I said that I have lowered my cholesterol through diet and exercise; the last reading three months ago showed this, and I have just had another blood test this week. I expect it to be down again. I then said that my husband had done some research (he has a doctorate in Pharmacology, so not just a quick search on the internet), and discovered that statins are contra-indicated for Chronic Fatigue Syndrome. The doctor replied, ‘I’ve not heard that. In any case, Chronic Fatigue Syndrome is an enigma to doctors’. By which he means that he doesn’t really believe in its existence. I’ve heard this kind of comment from him before; veiled CFS-denial.
I can understand that a GP might not trust a patient who has done their own research; there’s some crackpot stuff out there on the internet. But could he not check this out for himself? If I drop the research papers into the surgery, would he then take me seriously?
This isn’t just about having CFS. At no point did the GP or Practice Nurse advise me on diet or exercise; they just urged me to take statins. At no point did they ask why my cholesterol had risen to that level. Some of the reason was enforced immobility in the seven months prior to the blood test that showed the high reading. I had a minor op at the beginning of that period, and it took me several months to regain my usual level of functioning, energy-wise. I then had sciatica and several months of severe back pain, which limited my mobility even more. The high cholesterol reading coincided with my osteopath advising me to walk as much as I can to help repair disc degeneration. Three months on from the exercise regime, which I continue to follow, and major changes to my diet, my cholesterol was down. My back is also much better, no thanks to the doctor who prescribed very strong painkillers, told me to rest completely, and dismissed the comments of the osteopath who said I should keep moving as much as possible.
I would like to change my GP, but I live in a village with just one other single-doctor practice, the same as my current practice. That GP is not so good either, from what I hear. It will be worth the inconvenience of travelling to the nearest town to get better attention to my CFS and to just be heard and taken seriously. But how do I find out which doctors are knowledgeable and sympathetic?
posted 16 November 2011

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?

***
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.

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