Five Stages of Grief

I recently completed a CBT (Cognitive Behavioural Therapy) course at the RNHRD (Royal National Hospital for Rheumatic Diseases) with the aim of find better ways of dealing with my emotions. Which I know I have a tendency to squash. I’ve found it extremely helpful, but now that I’ve come out the other end and have stopped trying to bury my feelings I have to deal with them instead. Something which is not at all easy.

The Kübler-Ross model or Five Stages of Grief suggests that when we grieve we go through five distinct stages. These are Denial, Anger, Bargaining, Depression and Acceptance. We experience these when we grieve for anything or anyone. Whether that is the loss of a friend or the loss of our life or just the loss of our life as it was.

Denial is the phase where you say ‘I’m fine’, and refuse to admit there is anything wrong. I think for me the denial phase was short lived.

Anger is when we ask ‘Why me?’ and start placing blame. I’m not too good at dealing with anger, of all the emotions, I find it the most difficult and I hid a lot of my anger in my mind in places where I didn’t have to see it.

Bargaining is where we try and change things: ‘I’ll do anything to change this’, personally I go through bargaining stages quite frequently, but they are usually short lived because I know the futility of it.

 
Depression is when we retreat into sadness. When people cry and grieve. In some ways I think this is the most important part of the process. This is the stage that you must participate in fully to move on to acceptance. The very fact that there are feelings of sadness shows the start of acceptance, the true realisation of loss. You wouldn’t stop someone grieving for the loss of some they love, and it is just as important not the stop yourself from grieving for the loss of your old life.

Finally there is Acceptance. The point where you are ok with it, whatever it is.

With CFS/ME there is a great sense of loss, or there was for me, particularly in the early stages. I felt very much that I was grieving for my old life which had disappeared or ended suddenly. I went through all the stages, some quicker than others, and reached a level of acceptance. What I did not fully understand is that this model is not linear; you can revert to earlier stages. It is only through CBT sessions that I have accepted that I am allowed to go backwards. And in fact, that I have lost the acceptance I had.

 
The part of my brain that wasn’t accepting my illness I’d buried carefully as dealing with it was too inconvenient. Now, having let it out I am now experiencing feelings of anger and depression again. Feelings that I have to allow myself if I am ever to move on to the acceptance phase again.

 
The sense of loss is not as immediate as it once was, time has softened it to something less sharp and painful, something blunter and duller, but it is still there nonetheless. I grieve for the loss of my independence, my career, my life as it was. I am angry with my body for letting me down. At the moment I cannot accept that I might never get my life back. Which is strange because I have accepted this in the past and been content with that, although I now wonder if this was a true acceptance.

 
I am at long last allowing myself to really grieve for what I have lost. Not forcing myself into acceptance and burying the parts of my mind that didn’t agree. I hope that true acceptance isn’t far away.

To Pace, or not to Pace? that is the Question

Very early on in my illness I was advised to ‘pace’ myself. Which very simply means: don’t do more than you can cope with. Pacing is one of the main pieces of advice given to CFS/ME sufferers, but whilst it sounds simple it is actually quite difficult to do. I think most of us like to finish a task before we sit down with a cup of tea. However when pacing, you must sit down and rest before finishing the task and then go back to it.

In the first few months of my illness I did an experiment to see what happened if I continuously pushed myself to do things. I tried pushing through the tiredness and the pain. I pushed myself for a week. After which I could take it no more and collapsed into bed, so far beyond the point of exhaustion I didn’t know what to do with myself. But I knew that fighting it was not going to help me. I had tested it – and it hadn’t worked, in fact it set me back a long way, and I was in bed for some time.  For me it was quite easy to decide that pushing myself was not an option, but putting it into practice is not so easy. I know many people with CFS/ME live their lives by pushing themselves to their limit, before collapsing with exhaustion, recovering and then doing it all again.

I am convinced (although I have no real evidence) that continuously overdoing it is detrimental to me and would delay my (hopefully) eventual recovery. So with this thought in mind I set about trying to pace myself. I had fairly mixed success to begin with. It requires a real change of attitude to leave tasks half done and come back to them later, and I can see why people struggle with it. My real breakthrough came when I went to some sessions for CFS/ME sufferers at the Royal National Hospital for Rheumatic Diseases (RHNRD). They gave me some fantastic practical strategies I could use to control and monitor my activity. They suggested an activity log that you coloured in differently for high energy activities, low energy activities, rest and sleep. Each person decided what was high or low level for them. Rest meant not actively doing things like browsing the internet or watching TV, but maybe sitting quietly with a cup of tea or listening to music. Everyone had to work out what was a suitable amount of high level activity per day for them. This was half of what they could do on a good day. The aim is to intersperse high and low level activities with rest throughout the day. You can see one of my better pacing weeks below. Ideally some of the blocks of yellow should have been broken up a bit more.

The CFS/ME service at the RNHRD have very kindly allowed me to include a blank copy of the activity log below if anyone wishes to use this to help with pacing. Or contact me through the comments section or facebook page and I can email you a copy.  There is also a copy available here with some more information.

Having established a baseline for high energy activity you can monitor how much high energy activity you do each day. And then you can gradually build up. So say you can do four hours a day (in a sensible and paced way with rests in between) after two weeks of doing this without any adverse effects you try adding on 10 or 15 minutes, if it’s ok you do another two weeks and then add on a bit more. And you just keep doing this. If you have a setback, you get a cold or something stressful happens, just reduce the baseline to a level that is ok and start gradually building up again. 

I have to admit that as my energy levels improved I’ve relied less and less on the activity log. But when my baseline was only two hours it was very useful. It also helped me develop a feel for what levels of activity were ok and what was too much. 

Action for ME have more information on Pacing here.