Wednesday, 6 November 2013

What is recovery?

In the last few days, I've seen a few posts both on blogs and on facebook from people who have stated that they consider themselves to have recovered using a particular approach, which has been individual to them and some have felt unable to discuss the reasons behind their recovery. Here's another update on Martine McCutcheon who has shared some of the secrets behind her recovery.  I don't fully understand why people would want to keep it a secret and not help others... Anyway I've been thinking about what recovery is and how it seems to mean different things to different people.

For me eleven years on, I don't consider myself to be 'recovered'. To me being 'recovered' and 'well' is how I felt ten years and eleven months ago. Although I manage to work part time and look after a house (it doesn't resemble the glossy magazine pictures I aspire too though!) as well as looking after my boy and managing to do activities, I still suffer symptoms albeit mild. I'm aware that some schools of thought are that recovery doesn't always mean a return to pre-illness health especially if that lifestyle contributed to you becoming unwell but I would still like to be able to think that recovery could mean that I could still have the option of running a marathon if I wanted to?ha ha!

The question is what can help with recovery?  I've tried a few things over the years. Some more helpful than others and I plan to do another post about those later. Should I have done/be doing more to help myself get well?? A (short) graduated return to full time shift work a few months after getting sick was never going to help my recovery...  but in my defence I was beginning my longed for nursing career and had financial commitments. I was also in denial for a long time. I carried on trying to live the life I had been previously until somewhere along the line I began to accept what was wrong and alter my lifestyle and thought patterns.

Despite this I don't believe that changing your thoughts and taking an exclusively psychological approach to this illness will work (certainly not for me). When I can, relaxation and yoga definitely do make a difference to my fatigue levels and outlook but they are far from being a cure. Examples like the 'lightening process', 'mickel therapy' and 'reverse therapy' do seem to have worked for some sufferers but in addition to the lack of an evidence base for them, the costs involved are pretty significant. One approach I have been attracted to however is that taken by The Optimum Health Clinic. I have watched the DVD and follow them on facebook and I do believe that a holistic approach could offer some benefit. However until I win the lottery I will have to just make do with what the NHS is offering, which is graded exercise and cognitive behavioural therapy.

I could certainly do with letting go of a lot of the guilt and pressure I put on myself on a daily basis. I have to believe that it's not my fault and I am doing my best given the circumstances. Who knows, maybe it will be me telling you my recovery story some day....


  1. I think this is a great post and a topic we should be discussing. In my opinion, I would classify 'recovered' as when you are able to lead a 'normal' life (eg. work full-time, socialize, go out, etc), but I also believe that for many of us, we will never fully recover. Chronic illness is something that has to be taken into account for the rest of our lives, though of course I wish the best to everyone who has managed to recover.

    When it comes to how to improve our health, I completely agree with you that a holistic approach is necessary - we need to take into account the physical, psychological and emotional. I'm not following any specific plan to recover and I sometimes wonder if I should, but I've found simply researching it wears me out and depresses me to the point that I seem to go backwards. For now I am focusing on leading a healthy lifestyle by eating better and attempting to exercise (currently around 2 mins a day as I'm only just starting to be able to include exercise again), as well as making sure I don't allow my situation to depress me too much.

    Sorry, I seem to have rambled on a bit, but your post sparked so many ideas in me so thank you for writing it.

  2. What an important topic! I really struggle with guilt around my recovery, too. It's easy to hear what works for others and somehow feel inadequate about my own choices and efforts. But you're right that guilt only holds us back, makes us depressed and maybe even less motivated as a result!

    In the end, what works best for me (when I can manage to do it) is to try not to see things in such absolute terms. I concentrate on doing what I can do, making small choices every day, every hour, that I know are good for me--whether it's drinking a glass of water or walking around the block to get some fresh air and the blood flowing. The tricky part is celebrating these small things rather than focusing on the overwhelming task of "recovery." Much easier said than done.

    Thanks for writing this, and to Tamara for pointing me here, as well as for her thoughtful comment! It's dialogues like this that keep me feeling sane.

  3. Hi thanks to both of you for your comments :) @Tamara Epps - Glad you hear you are feeling well enough to incorporate some exercise and feeling as though you are a bit more accepting of your illness. I think there are so many approaches out there and the feeling that if you aren't trying them then you aren't committed to your recovery but when you are so fatigued, its really tough to find the energy to change your lifestyle or commit to a low GI/ gluten free/ paleo diet etc. Its already enough of a battle trying to control the symptoms!
    @Maddie Ruud - I'm terrible at planning too far into the future and worrying about other people (and my) expectations. I've learnt over the years to let that go a bit though. In most areas of life having goals like 'I'm going to be doing 'x' in however long' is helpful but not always in our case. It's likely to end up in disappointment! Like you say celebrating the things we have been able to do in a day or over a week is a more sensible approach.
    Thanks again for your comments and I hope you will both pop back to look at the blog again :)

  4. Hopefully you can tell us all your recovery story one day, hopefully we all can! Meditation is great and I've been giving 'bed yoga' a try recently, aside from that rest, pacing, and general taking care is what I practise, am yet to he convinced on CBT or any of that.
    Also, thought I'd let you know I gave you a shout out / wonderful spoonie blogger nomination type thing over on my blog :)
    Hayley-Eszti @

  5. Thanks again for the shout out and the compliment! I got the Beat Fatigue with Yoga DVD from my local ME group library and used it the other night. It has a section which is very gentle. I haven't checked it out yet. I did the 'normal' routine thinking it would still be pretty easy going considering it was designed for people with fatigue but it was so fast paced and went on for ages... I felt it the next few days!
    Re CBT, I have a pretty good understanding of it as I use it at work and have adopted some techniques myself so I'm guessing I will know quite a bit already. I'm dubious about the fatigue clinic that I'm currently on the waiting list for but am willing to give it a try. Nothing ventured...
    I've got a friend here this weekend who recovered using Dr Myhill. He swears by her. Her website is quite an interesting read.
    Anyway sounds like a good approach you are taking. Hope you are having a nice weekend :)