M.E Recovery: December 2013

Sunday, 1 December 2013

Stringing the days together

When I started on my rigid up and down schedule and walking in water for 5 mins three time a week about a year ago I felt sick as a dog most of the time, exhausted, adrenalin pressing on my chest, the drive to get flat dominating my time upright and generally unable to function. I could see no cause and effect in how I was feeling and be unable to predict bad and worse days. I would spend the time I had to be up longing for it to pass so I could crawl back to bed and, whilst loving my daughter, simply wishing she, and all other human beings who made any demands on me, were elsewhere! So where am I a year on?

I remember the South African physio who has been advising me through the past year told me that what would hopefully happen is I would get a better day, then bad days, then another better day and slowly the better days would get closer together and all going well eventually more and more better days would get strung together like a necklace. It was very difficult to believe this and it felt very very far away at the time. I have struggled sometimes to hold onto hope and struggled sometimes to stick to my schedule – remember me going up the Mountain in a distressed moment last summer? But now I feel a year has made a big difference, it is easier to look back over the past twelve months and see the progress I have made. And I know it isn’t just time, I know this progress is a result of the disciplined approach I have taken to my illness and to the healing effect of getting in that water 3 times a week regardless of how I feel.

20 minutes in the Pool Now

Last week I got to 20 minutes in the pool. I swim lengths for 3 mins and then walk in water for 2 mins. I can drive myself to the pool fine, I can shower and dress without feeling like I am close to dying. I can swim a length of breast stroke and a length and half scullying on my back before putting my feet back down again for 2 mins. I wear my heart monitor and not only stick to my time to the second regardless of how good or bad I feel, but I also keep an eye on my heart rate and if it is going silly as it sometimes does for no reason, like hitting 130 bpm rather than the average 106 when I swim, I swim very very slowly and glide as much as possible.

Walking

A few months ago I also started very slowly to walk on the days I am not swimming. I employed the technique used for swimming, ramping up the time once I had stabilised for 3-4 weeks. So in this way I started by going to the first gate and back, then the field beyond the gate and back, then the next gate and back and now I can get over that gate and walk a few hundred yards out on the mountain. It is wonderful!

Extending my rigid schedule

And last week I re-jiggled my schedule so that now I am more or less up for 1.5 hrs and down for 1.5 hrs so I’m not staying in bed for 2 hrs at a time in the afternoon.

Since reaching 20 mins in the pool and spending less time in bed I have taken another leap forward in how well I feel when up. For the past few weeks I have had NO SUGAR CRASHING and less and less adrenalin. These are the last two symptoms, apart from the inevitable ‘tiredness’ , that I have been getting for the past few months. When I am up I can cook and teach my daughter, do my self -employed work and act quite like a normal person to the outsider, so long as I go back to bed when I’m meant to. I even coped with visitors the other day, cooking dinner for them and talking to them - the most exhausting thing I find - but of course after 1.5 hrs I went to bed, then got up and saw them after my stint in bed.

This all indicates to me the importance of keeping the pressure on pushing just a little at the edges of what I can do, so long as I have been stable for a few weeks at that point. Being stable doesn’t mean I feel brilliant all the time, doesn’t mean I am symptom free before moving on, it just means I haven’t gone crashing backwards before I push at the edges once more. The additional movement and exercise must be helping my body function better so having a positive knock on effect and I have been using Gupta to chase away any fearful or negative thoughts about potential recovery or focusing on symptoms.

Sometimes a year feels like a very long time to have worked so hard and have come a small way, sometimes it feels I’ve come miles and miles and can truly believe that if I keep this discipline up I will make a full recovery before my daughter’s childhood vanishes before my eyes!

Any questions feel free to comment or share what’s been helping you recently!

Six Things I Wish I'd Done at the beginning!

1. STOP - if you haven't ground to a halt of your own accord then stop now. If are limping on and keep pushing at it so you yoyo up and down STOP. STOP & rest and find a proper schedule, learn to PACE, get other people to do as much as possible!

2. Not been frightened - I spent the first 6 months pretty terrified while I identified what on earth was my body doing now, thought about what if it were something fatal and believed all the M.E stuff that you mustn't move, that there is good reason to be frightened. This pushed my brain into further fight or flight mode. I now know I am not going to die of M.E. I am not going to damage my body if I do too much. The fear is more damaging than anything, but of course this isn't to say you or I can just push through it. That sadly, is simply not possible, but being terrified all the time that one is damaging oneself is the opposite extreme from pushing at it. As my aunt showed, from even a bed bound place one has to try to slowly build in movement else the body just gets iller.

3. Learn to PACE properly- I think this is the hardest thing to do and I have only learnt properly with the help of a SA physio who helped my aunt make a full recovery. I will be doing a detailed post.

4. Use meditation to both help your body/mind heal and to assist you in learning to cope with what is undoubtedly one of the most mentally challenging thing you will ever experience. And I put it top of my life above childhood trauma, infertility & miscarriage and near death illness. www.getsomeheadspace.com is brilliant and you can start with 10 mins a day for free.

5. Use water therapy. It sounds like hard work, it sounds counter intuitive and just another graded exercise. IT IS NOT. I will be posting about how to do this properly and the difference it makes!

6. Read Faces of CFS if you can get a copy to make you understand the facets of the illness and help you feel less insane. And Painful Yarns by Lorimer Moseley - available on Lulu.com to give insight into how the brain might be working against you!