Hours Sleep in 24 hours :
Today so far : – 8 hours in 1 session 🙂
Headache intensity / pain level : 4 / 5 😦
Nausea level : 0 😀
Joint / muscle pain : 4 😦
Fatigue : 6 😦
Brain Fog : 4.5 🙂
This week has been chaotic. I can really only manage about one activity per week which is normally my acupuncture appointment. I’ve been surprised by how well I’ve been coping with adding the intense Cognitive Behaviour Therapy session every 3 weeks. This week I’ve had –
Monday : Dentist;
Tuesday : help put shopping away;
Wednesday : Acupuncture;
Thursday : CBT;
Friday : Appointment with Doctor
This may seem like a nothing but this is the equivalent of running one of those consecutive day marathons. The 1st day you’re raring to go and tired by the end, the 2nd day you start slightly worn down, the 3rd day you start tired, the 4th day you start exhausted, the 5th day you don’t start !!
I’ve been having a really amazing burst of good health recently so I am working on not overdoing it. My instinct is to rush out and start working on projects for as long as possible every day but that is a really, really, really bad idea when you have ME. Even if you feel great you have to watch your activity levels. This is in part because most sufferers don’t feel the aftereffects of an activity until 24 or 48 hours after said activity. So on a big day out you can feel tired and in pain by the end of it but the next day feel reasonably ok, the day after that you completely crash. This makes it very hard to regulate your activity level on instinct because on the day after you’re thinking ‘oh, I’m feeling better than I thought I would. It will be fine to do … (strenuous activity).’ This leads inevitably to a much worse backlash than if you had simply rested even though you were ‘feeling’ fine.
In fact this generally leads into a pattern of behaviour called the boom and bust cycle. Sufferers feel sick and are frustrated by not being able to do things. When the sufferer experiences a good day or good period they immediately start to try and catch up on the things they can’t normally do. They might go out for dinner, or do a bit of gardening, or start writing a book – for example. Because of the pause in backlash they will continue to do tasks without taking into consideration the toll previous activities will take on them that they are not currently experiencing. This is called ‘But I feel fine’ thinking. By overdoing the backlash, when it arrives, is much greater than it could have been and after one or two of these backlashes the sufferer falls back into a much worse state of health, perhaps even worse than they may have been before the good period.
Unfortunately this is a very common pattern for ME sufferers. From my experience in person and on forums most of the ME sufferers I’ve spoken with are overachievers. If they were healthy they would happily be running around all day doing tasks with no rest. One of the good symptoms of ME is that brain function is often suppressed during bad periods so that in general I don’t that frustrated about my lack of productivity because I simply can’t get up the energy to care. One of the downsides of this is when a good period comes along it feels like a light bulb has gone off in your head, the power plant comes back on and you’re raring to get back to your old habits of work til up drop.
One of the major therapeutic avenues for sufferers with ME is to focus on pacing – the structuring and management of activity levels – both in bad times but in some ways more importantly in the good times. The bad times tend to take care of themselves since you’re too tired and in too much pain to do anything. It’s when you’re relatively well or at least operationally well that you can do some serious damage to your recovery by overextending yourself.
I have personally experienced at least 3 major relapses each one taking me even further down the capability scale so that my health level on a bad day after the first relapse would be considered to be a good day now. Two of those relapse were not my fault since I was only doing what I had to. The 1st was after my GSCE exams and the second in the run up to my 2nd year A level exams. However I’ve had numerous minor relapses where I could probably have extended periods of good health if only I hadn’t pushed myself so hard.
You would think that being a rational, sensible human being and being well aware of the problems of this cycle that I would not make the same mistakes over and over and over again. But it is one thing to talk about it and another thing to do it. Because when you start to feel well and the world opens up again it is like all those movie cliques – the sun comes out, everything seems brighter, food tastes more delicious, your friends are more funny. Your brain is sparkling away with ideas and conversation and if you try and hold it in you might just burst.
The problem is that you know that you are courting a relapse but you don’t really care. You think ‘sod it. I’ve been trapped inside my head for so long, chained down by the pain and fatigue, so careful of what I do in case I set of a major migraine – I just want to be happy and excited and do what I blooming well want to’. This, of course, leads to a couple of days or even weeks of wonderful activities interspersed with an increasing number of bad days. Now when the bad days start again the obviously sensible response would be to slow down and take a break and make sure you keep on an even keel. But in reality what happens is I panic. Suddenly you remember what the migraines felt like, what it felt like to be trapped and zombiefied, and the knowledge that this could happen to you again at any time drives you to ignore the bad days. I end up pushing through the pain, justifying it by thinking ‘it’s just a headache, you’ve had worse.’ and more terrifying ‘Best to get this done while you still can.’
I’m more likely to massively overdo towards the end of a good period simply because it is the end. Of course by overdoing I make it the end of the good period so it is a self fulfilling prophecy. And I tell myself every time I won’t do it again but I do – over and over again. It’s why the ME Clinic insist on their clients having Cognitive Behavioural Therapy to try and help us come to terms with our anxiety issues relating to our health so that we can try to take a more rational approach to our recovery.
When you have been as sick as I have for as long as I have – 16 years this year – your hope for a full recovery tends to go in jagged spikes of total disbelief in the long bad spells and ecstatic, blinding hope in the good times. It’s the hope that kills any recovery because trying to hold onto it causes you to keep pushing for more and more recovery rather than being satisfied with a level of health that is slightly improved. The more you improve the more impatient you are to improve further. When you are really bad all you want is for the headaches to be less but once the headaches are less you want them gone. Once they are gone you want to be able to read more, or work more. When you can work more, you want to be able to work even more. If in the bad times you want to be able to go out to the cinema once a every couple of months I can guarantee that if you reach a good time you will want to go out once a week.
I think part of this is because in the dark times we hold onto certain key activities that we associate with ourselves as being healthy again. For me it is writing. If I can write then I can do everything I want to in life. But of course it is not that simple and in the desire to hold onto that activity it is easy to push myself back into a relapse.
So as I experience this miracle of health this week I am trying very hard to keep in mind the consequences of pushing too hard too fast. Hopefully I’ll make better choices this time around. Wish me luck !