Monday, 27 May 2013


When someone with CFS/ME pushes their body beyond its limits, they suffer from an increase in symptoms known as payback. For me personally this tends to present itself as dizziness, loss of balance, feeling generally lifeless with lack of strength, fatigue and severe pain.

Sometimes payback is worth it. I had an amazing day on Saturday which was totally worth the payback I've had yesterday and today. I knew I'd get payback but sometimes you accept that as a fact and choose to have a day that you know you'll suffer for later. My choice, my body. The payback has been rather brutal though, and I'm hoping it won't drag on too much longer..

The difficult thing is knowing that probably 99% of people my age would not even have any difficulty doing what I did on Saturday. And the payback lasts so much longer than the initial exertion, which seems mightily unfair.

You also have the problem of medication side effects if you end up needing stronger pain meds because of the increase in symptoms, and then it seems almost a waste to be using pain meds to simply lie in bed dozing. I also have the issue of medication interactions now that my medication regime is getting increasingly complex.

What also makes it hard is that payback is worst in the mornings (for me anyway), so you get to the evening and think tomorrow will be ok, but then sleep is normally disturbed because you have nothing to distract from the pain and payback flares back up again in the morning. You feel much worse than expected, and the comparison with the symptoms you expected is what is difficult to tolerate.

When I've had an amazing day and knowingly pushed my limits I have no problem with being stuck in bed in the dark dozing the next day. These days I accept that, and I have learned to expect it.

The psychological pain comes when you don't seem to be coming out of the payback as expected and you fear that you may have triggered a relapse, or the payback seems worse than you anticipated or you can't get your pain even vaguely under control.

Payback is a tricky thing to get your head round, because you have to anticipate it to be able to expect and accept it. You don't know at the time what the severity of the payback will be, so you can't always judge whether doing something will be worth the payback it causes.

There's also the fear that you may be causing long-term damage by triggering payback, although no-one can know for sure at the moment whether it's a detrimental thing to do, because the mechanisms of CFS are not sufficiently understood. I trigger some degree of payback in addition to my constant symptoms most days because I am continuing with my studies and I have continued without any real adjustments so far (although this is currently being discussed and I am finally looking at ways to reduce the strain on my body). I don't see the point in constantly avoiding causing payback at the expense of quality of life though. Personally I don't see the point in constantly living within my limits in order to get my symptoms as low as possible, because I would simply have no life. Yes, some would see this as being reckless with my health, but it isn't really- no doctor has ever said that what I'm doing is wrong or dangerous and they have been supportive of my mindset. When I walk too far and injure myself it clearly is a stupid thing to do and isn't good for my health, but the day-to-day pushing of my limits isn't as clear-cut. Yep, it probably has caused a worsening of my condition over time, but that wasn't necessarily going to be my body's reaction to it, and without trying I wouldn't know what my body could and couldn't cope with. To know your true limits, you've got to test them.

I'm not saying that my approach to my illness would be right for everyone, but it's the way I chose to deal with it. I might need to change my approach and pander to my illness more in the future, given that my condition is deteriorating, but I am looking into ways to make life more manageable and will be responding appropriately, so I'm not mindless with my illness, I just choose to have a life sometimes, and suffer the consequences.

Sunday, 12 May 2013

Update 12/05/13

Just thought I'd also post a quick update for anyone that cares ;)

It's been a busy few weeks with appointments and meetings. I saw my consultant a couple of weeks ago and we had long discussions about lots of things including pain control, my course, reasonable adjustments, occupational health, disability awareness, weakness, wheelchairs.. We discussed the deterioration of my health at length and I left feeling empowered and positive and could see a way forward. However, this way forward involves adjustments, and adjustments don't happen overnight and would involve increased awareness of my condition, which is tricky for me to accept.. But we'll see. I've had a few meetings and things are creeping along, so we'll see what happens. My consultant was very clear that I need to put my health above my concerns about what others might think about me or my want for privacy, so I'm going to have to grit my teeth and accept that I need help.

I've also had an appointment with a CFS-team physiotherapist. It went well and he had some good advice, although putting it into practice is always harder than it sounds. I know literally all there is to know about activity management and pacing, but he had other advice more specific to my current problems, particularly with regard to my grip weakness and my facial pain. He's keen that I reintroduce breakfast, which is going to be a serious challenge, but one that I'm going to attempt head-on. It's been a long while since I've been able to eat in the mornings due to really severe nausea but I need to do everything I can to give my body the best chance of coping.. I've tried loads of different medications and none of them work (apart from one that sends me to sleep) so it's going to be a case of gritting my teeth and hoping my body gets used to it.. So fingers crossed..!

I'm feeling fairly positive about things at the moment. My pain levels are only just tolerable, as are a few of my other symptoms, but I am still going and still managing things. I'm discussing ways to make things more manageable moving forward and I've got some new ideas for hopefully reducing my symptoms a little and managing my condition a bit better. Hopefully, this will all help to move things back in the right direction :)

May 12th: ME/CFS Awareness day!!

Today is ME/CFS Awareness Day and the first day of ME Awareness Week! This post is to raise awareness about the full spectrum of severity of ME/CFS.

There is a huge difference between the most severely affected and the most mildly affected, as would be expected with most conditions. I fall pretty much exactly in the middle. Sometimes I would be considered mildly affected, whereas at other times (particularly during significant relapses) I am severely affected. This variation is the case for a lot of people whose condition isn't stable, or those who push the boundaries with their illness perhaps a little more than they ought to..!

At the mild end of the spectrum, a sufferer will only have mild symptoms, or may only have symptoms when they have exerted themselves more than normal. They may exhaust quicker than their peers and may have to limit what they do to some extent. Even those that are mildly affected are likely to have to be mindful of their limitations, and they may still be living with constant, unrelenting symptoms. 'Mild' ME/CFS can still be life-changing and very difficult for the sufferers and their families to live with and come to terms with. They also have to live with the fact that their condition could go in either direction, they could improve or they could deteriorate, and the medical profession can't currently predict which is more likely, prevent it or stop the deterioration if it happens.

The very severe end of the spectrum is remarkably different. There are patients who have been bed-bound due to ME/CFS for years or even decades. The suffering is intense and unrelenting. Some cannot tolerate anyone else in the room for longer than a few minutes, and must lie, day after day, alone in darkness. Most are in very severe pain and often this pain cannot be relieved even by the strongest possible pain relief. Often these patients have to be tube fed and need round-the-clock care. Hospital care would make them sicker, as they are often unable to tolerate light or sound or smells or touch; stimulation of any of their senses can cause their condition to deteriorate further, making their symptoms even more severe. Imagine lying in bed, in the dark, day after day, for years on end, with constant severe symptoms, knowing that there was nothing that could be done to improve your situation, and even thinking too much could make your suffering worse. Imagine lying there knowing doctors could do nothing more to help you, yet there wasn't a huge research effort to try to understand how to help you, and others like you. Some sufferers have died from the effects of ME/CFS and others have taken their own lives because they could no longer tolerate the suffering.

25% of ME/CFS sufferers are classed as 'severely affected', i.e. reliant on a wheelchair and either house- or bed-bound. There are 250,000 ME/CFS sufferers in the United Kingdom alone. ME/CFS is a major cause of suffering.

I have spent many a day over the last 3 and half years unable to get out of bed for a vast majority of the day. It's a frightening place to be. It's not like a well-understood illness where you've got the reassurance that if you go into hospital they will be able to treat you and make you better. The only thing you can do is lie there, in silence, in the dark, hoping that your body will be able to fight back and get you back to where you were. There's also the element of blame with CFS, if you end up bed-bound and in agony, with the room spinning, your muscles twitching and cramping, feeling inexplicably sick, you blame yourself for doing too much; your doctors ask you what you had been doing in terms of activity in the days, weeks and months leading up to the relapse, and they too insinuate that if you'd done less this perhaps wouldn't have happened. The truth is that there's no way of knowing.
Please help raise awareness of ME/CFS today- we need there to be interest in CFS, to encourage research, so that the future looks brighter and there is reason for hope. In the meantime, awareness helps us to feel recognised and understood, and reduces the isolation and alienation faced by many sufferers.