Tuesday, 19 July 2011

Coping with emotion.

This post sort of follows on from Kooky's post, we must both have been on a similar wavelength today.

People with CFS have to deal with all kinds of emotions in relation to dealing with chronic illness, theirs and their partners/families lives can be turned totally upside down, which in turn puts immense  strain on relationships and mental well being.

Add to this the fact that some degree of emotional lability is not uncommon in CFS and what would normal be small things can upset someone with CFS greatly or make them angry. I think the main base of this is frustration and grief for your former life. Frustrations that you cannot do what you did before and anger as you want to be able to do things. Grief is a strange emotion not just appearing when you lose someone, I find I almost mourn for my old lifestyle, the old Carrie.

This is not uncommon in any chronic health problem and does not make CFS a mental illness such as depression as some believe, it is just part and parcel of the condition and learning to accept your limitation.

I also find that outbursts of emotion, be they positive or negative exhaust me, which adds to the difficulties of coping with challenging times. I try and hide my emotions which in turn make them build inside me and make them more likely to explode at an inappropriate time or in an inappropriate way. It is important that emotions are faced and expressed both in healthy people and those with CFS.

There are also a lot of wasted emotions that eat up valuable energy that is best spent elsewhere, I find this particularly hard to put into practice, emotions such as guilt do not help us in any way yet a lot of people with CFS get the feelings of guilt for not achieving what they believe they should have done. Expectations are usually self inflicted and often unrealistic...

For example I was asked by my Physio to set a 6 month goal to aim for with my rehab physio therapy, I wrote down that I want to be back at work and I want to be keeping my house perfect all the time. I then got a strange look and asked if I thought this was realistic when I cannot walk even the shortest distance without great pain and severe fatigue and quite often struggle to manage it without falling over.

I then felt anger and guilt that I was not going to get back to work in the foreseeable future and left that meeting thinking a goal of walking around a supermarket for half an hour, doing half an hour of light housework and some stretch exercises a day was hardly a goal. Two years on I am still struggling managing to cope with this without exhausting myself and have recently stopped going to the physio as he believes I reached the level he could get me to with exercise alone.

This brought along a lot of tears and a lot of anger from my last appointment with him. I felt hatred towards the physio that he had told me during the appointment that I was not going to get any better, that I had reached my attainable level of activity and this was as good as it gets. I have always maintained that I will get better in time, I don’t know how long it will take, but with these comments and the report from a medical assessment that said it is unlikely I will make any significant improvements in the foreseeable future, left me totally despondent and depressed.

I spent time talking to my husband after bottling up inside and working myself into a frenzy and to Roger who both said I have proved doctors and my physio wrong before and that it would just take time and the right treatment. GET is not the answer to a lot of CFSers problems (is anyone helped by GET?) and that with the changes I am making to my diet, health regime and state of mind (relaxation techniques and meditation) and trying to improve my sleep, there is every chance in time that I will make improvements. 

I said 'but I hate the physio for doing this to me and writing me off' and it turns out that hatred is another wasted and even damaging emotion, it builds resentment and anger inside you. It seems it is better to acknowledge that the person you feel hatred towards is just misinformed and someone to feel pity towards rather than anger. Pity uses a lot less energy that hatred which will only destroy you and no doubt hinder any progress you might make.

The question is how do we control our emotions? I think the answer lies in accepting that you feel a wide range of emotions and that it is natural to experience them. The problem lies in how you deal with them. Meditation and relaxation can help calm an anxious or over active mind to the stage that it is slowed down enough to deal with what comes along one thing at once. When your mind is racing at 100mph it is impossible to see what you are thinking and what emotions this is leading to. Slowing the mind and body down lets you recognise the thought processes that happen within your head all through out the day and night if you are not sleeping, and then you can challenge them, sometimes you need help in doing this from someone close to you.

It was only when I stopped and took a step back that I realised all my negative thoughts and feelings and my expectations were all put on me by myself, no one else was doing this to me or expecting me to achieve what I thought I had to. If I had not slowed down, I don’t think I could have spotted what was going on to make me so stressed, upset and angry and therefore could not have dealt with it.

So in summing up, we all have emotions and they must be acknowledged, but if these emotions are unnecessary they can severely drain your energy and cause a spiral of negativity that will hamper any recovery attempts. Slow down, accept your misgivings and be realistic. No one expect you to be super human. If they do, then it is them that have the problems not you.


  1. Wow! A great post straight from the heart, and you are so right. Well done you.

  2. Can I echo what kooky just said, carrie - you're going through a hugely difficult time at the moment, and despite all your other problems, you're handling it brilliantly. You really are an incredible lady and I admire you tremendously.

  3. Thanks but you know I couldn't do it without you lot behind me! I am blessed to have the family support I do and the wonderful support from everyone on the forum.