Published in InterAction 71, Spring 2010
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Dear Doctor: All I do is sleep and work
I have had M.E. for some time now. In the beginning the symptoms were quite prominent, whereas now it is just the tiredness and lack of energy. For a while I was receiving benefits which stopped after an examination by the benefits agency. I did appeal but got nowhere. For the last five months I have had to go to work to make ends meet, doing 30 hours a week. All I do now is sleep and work which is not much of an existence. I sleep until I go to work in the morning and sleep after lunch for a few hours if doing a later shift. If I did not do this I would collapse with exhaustion. I am at my wits end so if there is anything I could try to help my symptoms then I would be happy to give it a go. My symptoms are deteriorating whereas before I was able to manage them a lot better.
Sharon, Norfolk
Professor Tony Pinching replied:
I am sorry to hear this story; it is all too familiar. Your letter says it all. You had obviously been managing your illness well and had started to see reduced symptoms and improved function. This looks as if you were on a good trajectory towards longer term improvement, or at least steady despite your illness.
And then the benefits people mess it all up! They seem to have assessed you as being better than you actually are (that’s what they often do). What they usually fail to do is to assess what I call sustainable activity – ie. what you can do each day and still be OK in the days after. Because setbacks from overdoing things are typically delayed, they tend to assume that you can do all the activities that they assess (in combination and repeatedly) and without detriment. Even if you tell them, they tend to ignore it, although their guidance says they should take it into account.
They have a points-based system, but quite a few that I have seen seem to bear no relation to reality. In quite a few cases, specialists or GPs can help you get the decision overturned on appeal, but it sounds as though that wasn’t an option for you (or it failed).
The mindset of many staff employed by the Department for Work and Pensions (DWP) seems to be that (a) work is good for you (maybe it is, but only if you are well enough to do it), (b) that they need to cut the Treasury cost of benefits, and (c) that all the people they assess are cheating the system. They seem to have completely lost sight of why the benefits are there for disabled people in the first place! Most people are honest. Surely ill and disabled people should be treated as truthful unless there is clear reason to think otherwise?
Your story shows that work isn’t always good for you – not if it is at the wrong time or in the wrong amount, and certainly not if it is making you ill again, reducing quality of life and interfering with your recovery. It sounds as though you have no work-life balance, and that your symptoms are returning. This may lead to a relapse and may also jeopardise your longerterm recovery.
The Incapacity Benefit / Employment and Support Allowance system is supposed to allow you to start working at low levels, voluntary or paid up to a certain limit, without losing benefits. That can smooth the path back into the work setting and avoid exactly the sort of problems you describe. You may well be able to do a lower level of work, but it sounds as though 30 hours is too much.
Job Centre Plus and Pathways to Work are supposed to help with this process of returning to work after periods of disability. You don’t seem to have been guided or advised by them, or they have misjudged your situation. It would have been much better for everyone if you started at a low level, checked if it was sustainable and built it up with careful monitoring until it is seen to be manageable before benefits were withdrawn.
Reset your activity level
You ask if there is something that could help your symptoms. My feeling is that pacing is going to be the main answer, re-setting activity at a sustainable level. If the work situation can’t change, can you cut back on anything else by getting help with other tasks?
If your night-time sleep is disturbed, then you may be able to try something to help sleep quality, such as low-dose tricyclics, which may mean that you recharge your batteries a bit more and have more energy in the day.
I can understand that you are at your wit’s end, but don’t let the understandable frustration or upset drain your battery even further! Emotional energy is one of the biggest drains on it. If it is hard to change that on your own, seek help. If the specific symptoms that have returned – such as pain, migraines or vertigo – are themselves further draining your energies, then you could see if there are treatments that could control those better.
To be honest, I think you will really need to see if it is possible to modify or reduce your work level to something that you can sustain, and that would enable you to continue to recover. One option would to rearrange the work hours and days, so you can have more breaks in-between, such as putting a day off in the middle of the week, or working shorter days. If you need a rest or a sleep in the day, try to make it at the same time each day, to help maintain body rhythms. After all, in many places, a siesta is normal, and is at a time when the body normally has a slight dip in function! If you have to travel a long way to work, can that be adjusted to reduce its impact?
You will need to seek advice as to how to make changes in hours of work and to explore the possibility of getting back onto some benefits to reduce the financial pressure. These discussions would be with DWP/Jobcentre Plus, your employer, or both. I think that you can clearly make the case that you tried to work, but that it isn’t working out. Advice from Citizens Advice Bureau or welfare rights organisations can help with navigating the process and ensuring that you know what is possible. A letter from your GP and/or specialist can help in making your case.
It is vital that you do something to get back on track and to avoid undoing the progress that you had previously made. Time to regroup!
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