New Year - New Me?

Well a very Happy New Year to you all. It's been a while, largely because (as per last post) I have been busy writing something else. Then there was the Christmas busyness and here I am again. I, like many, have been of reflective mood entering 2012. It is actually inspiring for me to look back at this time last year and the state I was in, and just remind myself how far I have come. Between Christmas and New Year 2011 I was bedridden for a day and rather unwell either side of it. I should point out, it is very rare for me to take to my bed and stay there. Around about this time 2011 I was trying very hard to not think about CFS. I booked myself in for blood tests for vitamin D and B deficiency and anaemia. They all came back negative of course. I finally caved in and went to the doctor in March to have my fears confirmed, and I strongly recall coming out of the doctor's and ringing my poor mother and crying almost hysterically as I stumbled home, telling her this was the worst thing that could happen. It isn't of course. There are far worse things. But I am fully self-employed and to be diagnosed with a potentially long term illness with no cure and that could become debilitating without warning is quite a shock, so do indulge me a little hysteria.
Throughout 2011 I made it my mission to take control of it. This was a mistake. Unfortunately, my nature is a little controlling, okay it was a lot controlling, I'd like to think that has reduced now. I spent months being frustrated and angry. Not recommended as this uses vital energy. Then I managed that wonderful word: acceptance. Funnily enough, things calmed down a bit after that. During 2011 I tried homeopathy, nutritional therapy, acupuncture, shiatsu, reflexology, reiki, meditation and Tai Chi. At the end of 2011 I started with  Bowen and have the last session next week. I noticed as I progressed that the therapy I used needed to change. The one constant has been what I learned from the nutritional therapist: avoidance of refined sugars, using dark choc, fruit smoothies for breakfast with powdered high strenght vits. I also cut out soya and quorn and have never reintroduced it. Sleep was a massive problem for me on and off through the year and this remains the one stubborn symptom. I gave in during December and went back on the Amitriptyline, but I aim to ditch that again sometime soon. Currently I am pain free, getting just a niggle in my right foot if I am still awake after 5 hours. I can walk on the flat without my stick for about ten minutes. I can walk with my stick (slowing to a granny shuffle on inclines) for upto an hour, providing I have a quiet day before and a couple of quiet days after. I start the day with meditation, reiki, an energy breathing exercise and the Tibetan Rites moves with a teensy bit of Pilates - that latter lasting 10 minutes, now having doubled from when I started it. I intend to go back to swimming this month. I have come a long way, but I know I still have a long way to go. I no longer wish the illness away, it is futile. It will be here as long as it is and any weakness it leaves after it's departed will have to be accepted. That's that. Seems simple, but it took me nearly a year to be able to admit it!

A Write Story...

Having been away on a lovely retreat and dipped my toes in the healing pool at the Chalice Well (try everything - you never know) I discovered last Monday I have got myself in a pickle of potentially writing approx 50,000 words in just over three weeks. Hmm. After some thought, I decided to go for it. This has been an interesting 'experiment'. Generally, sitting in front of the computer is classed as an 'activity' and I have to pace myself - limit it to so long and rest either side of it or at least after it.
I had wondered, since on the first night at the retreat I have one of  my 'night episodes' (shivers, burning up, palpitations and a stomach dump just for good measure) and was awake until about 4am with it, if things were backsliding. Had I actually achieved some credit in my health bank or had it been showing a false balance and I was about to lose it all again? I recovered rather well from it, even managing to attend the Carnival in Glastonbury on the Saturday and stand (leaning on my stick) for most of it (sitting on a doorstep of a handy charity shop in between). I had also that day managed to walk up and down the high street doing a bit of shopping. The following day I wandered round the Chalice Well and gardens and then returned to the retreat, sat in the steam room and them swam for a bit. Ordinary for some, but quite a degree of activity for me. I would previoulsy have expected to pay for it. Other than sleep being annoyingly disturbed this week by a strange patch of numbness on my left hip (a whole new symptom in case I was getting bored or missing the ones that have gone) which then turned into foot pain just for good measure, there were no other repercussions. I have managed to sit and type 14,000 words this week. I did have some reflexology yesterday (foot pain gone now) and give in and take an Amitryptiline last night, but only because I was out with a friend today and wanted to enjoy it fully, which I did.
So. I hesitate to suggest there appears to have been some 'permanent' improvement, but I am hopeful the improvement attained will be long lasting. I'll keep you posted!

Up up and...let's not get carried away.

Well. Interesting times have been had. Last Monday I went down with shingles. Again. Although there has been more than a 12 month gap this time. I decided to forego the usual antivirals route - with the thought that they would gum up my system with toxins and use precious energy to process - and go back to the homeopath instead. It was the homeopathic remedies that afforded me this year+ gap. Antivirals have never done that. Whilst the rash was plain nasty and sore then blistered and burst and bled (nice! - sorry if you're sqeamish) the 'experience' of shingles was none too bad. By that I mean, no worse than usual. This is very interesting for me, because last year when I kept getting 'fake' shingles (all the symptoms but no rash) I now know that was the CFS kicking off a bit. I can fairly safely assume, in lieu of other evidence, that repeated shingles - being viral AND stressing my system - was the preciptator of CFS. Therefore, I fully expected when I spotted the start of the rash to be floored as it spectacularly clashed with my CFS. But it didn't Okay it disturbed my sleep a bit more so morning have been a bit nightmareish, and it's made me a little more tired, but only a little. Plus, I felt well enough to attend a friend's firework's night (goe chauferred by super pals again) and drive to a loca family fireworks event the following evening, AND take the dog out for a slow but steady walk the next day. I had a phone consult with the CFS clinic yesterday and they were very pleased with me. I don;t have to report in again until January. If I were drawing a little chart the line would be rising, things do seem - dare I say it - on the up a bit. I guess time will tell.

I Made It - Twice!!

After such an appalling failure to get to a course last Saturday, this week I have managed to attend a very good writing day with Maria McCarthy during which I sat in my car at the lunchbreak and did some meditation on my iPod for a rest. NB People who keep asking - yes I am getting better at putting my rest periods in. Smug smile. I also managed to drive myself there and back and not feel too bad about it. I finished the day with a Neals Yard muscle fatigue bath. Slept better than the dog who woke me up howling at 7am. Today  I have had a slowish morning - reading and moseying about - and then went to a Pilates Workshop. These are usually good but always hi energy. I would have loved to attend the whole weekend or even the whole day, but I know my limits and the main thing was to just get to something I could stick at. Again, drove self there and back (got there early to be have a rest in the car and be able to park). I am wiped out now and the salted chocolate did really save the day yesterday and today. I now suck two bits and that seems to work better than ramming it in my gob and chomping it down. I am already seizing up and my legs are achy and threatening strike action, so tomorrow could be funtimes. I think I hear another NY bath calling....

Tired and Emotional

It has been and up and downy sort of week. Again. Overall, I feel I am coping better, certainly compared to a few months ago, still when the tiredness drags on it is wearing. I can cope with patchy tiredness, I am getting on much better with my rest periods. What I find most trying is when the tiredness does not abate for several days; it feels constantly the same and seems never ending. I admit it makes me feel low. I admit this week I caved into the 'lowness'. I am not depressed. Wednesday then I didn't go to Tai Chi. On the one hand I couldnt be bothered, on the other, since the tiredness had not lifted a milimetre I couldn't see how I could go to Tai Chi and then come back and teach two classes. So, it was partly practical, partly apathetic. Thursday I moaned to my dear, extremely broad shouldered mother, who really has enough problems without me adding to them. Friday I perked up a bit but had an awful night. My Amitrityline has not arrived at the pharmacy - all week! - but I haven't really missed it and done alright without it. I had some grumblings of pain earlier in the week so had some reflexology and reiki on Tuesday and it went away. Saturday I was due to attend a one day course. I admit I had some concerns as to how I would cope since driving to Clifton for Supervision and spending three hours there finds me inevitably having to stop on the drive home as I can't cope. So, I decided I would just go and see how long I could last and leave if I felt that I was becoming too unwell to drive home. Oh for a chauffeur! After spending half an hour trying to park near enough for me to be able to manage the walk, stick in hand, I got nearly to the top of the hill I had parked on, then realising I had four streets to go yet, admitted defeat and went home. I just felt so sore and powerless in my legs. At home I cried and sulked. I was soothed by my silent boyfriend and then cuddled up with him and my dog and sulked. For most of the day. However, I have now discovered I may be hosting a bit of a coldy bug. Whilst this may not seem like good news, it does however explain the feeling of running on complete empty, the hot and cold sleepless night and the sore legs. All of these can easily be mistaken for CFS symptoms, but on this occassion that doesn't seem to be to blame. So, off to Boots for liquid echinacea and paracetamol and no more tears and tantrums. For now at least.

Everything in Moderation

Still on the old chestnut of pacing, or rather learning the best actvity/rest combo. It is a little bit like finding your way through a maze; confident the solution lies ahead, you plough on only to find a dead end. I am still keeping my morning routine of meditation, reiki, Five Tibetans. I am more used to the Five now and am managing 12 reps of most of the Five Rites (postures). I even kept this routine when I was away recently. So, that bit's okay then. It is still taking me a long time to wake up and part of the trouble is the Amitrityline 'hangover'. I experimented recently with not taking it at the weekend and there was no pain and sleep was about the same. So, I am going to try to take them during the week and leave them off Friday and Saturday night,especially since (touch wood) I have not had an insomnia periods for several weeks now. I am still struggling with pacing. Unexpected things get in the way or tasks just take longer than expected. I notice I am getting tense in  my shoulders again, and the teeth grinding is back. Some days I feel I have too much on, when it is just a few little things, but of course they all add up and take their toll. I am still listing things in my diary in favour of writing a schedule. I'm not sure this is any better. I am also still list writing as I am fearful of forgetting things, and I know I do forget. The Tai Chi provided through the CFS clinic is still proving surprisingly challenging and I have to keep sitting down. But then it is on my worst day for activity, being a Wednesday when I teach three classes during the day. Still, at least I recognise the need to sit down and don't just carry on pushing myself (1 lesson learned then!). I also took some peanuts and ate them in the car before driving home, and that felt better. I hope to buy some salted chocolate this weekend as a couple of squares of this proved very helpful after swimming. I have been reading Overcoming Chronic Fatigue, a book that uses CBT techniques. I am due to embark on the exercises. I'll start next week, when I have more time....!

Five Tibetans

Since last posting I have had four pieces of good news. I have finally gained my level 4 Pilates specialty qualification and I'm glad I decided to make the effort to complete it. It was worth the extra energy it took. It also made me realise how tense I had been while waiting for the news as the sense of relief I felt was monumental. The second piece of good news was winning a short story competition. I find writing relaxing, whether a note or a letter or a story. It's nice to sit in the summerhouse and do it while the weather is still warm enough to do so. My six weeks of reflexolgy has finished and I think it has helped, particularly with the pain. I still take the Amitrityline 10mg at night - and touch wood have not had any insomnia epsisodes for nearly three weeks - but that is now less about pain management and more about regulating my sleep. Overall I have to say I feel about 10% better, which is good. The other interesting thing is swimming. I went to the local pool where I can only do lengths and this time managed 12 lengths in 22 minutes. I was pleased to notice my right leg was keener to be involved that previously. It wasn't quite kicking all the way along but did make an effort and it's less like hauling a piece of driftwood behind me, which is nice. I have received a letter from the CFS/ME clinic and start my Tai Chi class next Wednesday. It's not the best of days for me as I teach three classes on a Weds andwill  have also worked Monday day and taught Monday and Tuesday evenings. I will forego the Tuesday swim and conserve energy for Tai Chi. The last bit of good news is the Five Tibetans. I was put on to them by a colleague. I don't mean I have five small Tibetans carrying me about - although that might be interesting - it is a set of re-energising exercises. The full name is Five Tibetan Rites. It consist of five exercises - that are not too dissimilar to some Pilates - that take about five minutes. I can't quite do all 12 reps of all five exercises, but I do what I can and it does give me a lift! So, less doom and gloom and more bloom this week then.