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.

Rest is Best

Things have a habit of getting in the way. I cannot schedule my life and I tried doing it to a timetable but it doesn't work and makes me frustrated. The only rest I am managing to guarantee myself is the 10 minute meditation before I go out to work or a social event. Yesterday I was really tired, and Wednesdays are my busiest day, so it's not a good day to start of being tired with. For some reason, I did not reiki myself before I got up, the day went to pot with everything taking longer than it should and my first rest period coming at 5pm. I was frazzled, upity and tearful by then. I lay on the bed and did some reiki and felt much better. That just goes to show the difference it makes. Last night I took an extra half of Amitryptiline as I know if I am overtired I will not sleep. Today I have rested sat in the sun in the garden. I have cancelled the cat's vet appointment to next Thursday (it's only a booster jab) as I am working 4.30-8.30pm and don't want to rush about this afternoon. I will take the dog out soon then will rest again and do a meditation before work. That's three out of four. Which isn't bad. But it still isn't good enough. So, I will write on my own report card: Must Try Harder.

5 of the 7 dwarfs

This week I have been Doc (looking into other means of handling CFS and still using reiki); Happy - though this goes in fits and starts; Grumpy - more often than not, but at least I admit it; Sleepy - no explanation required; and Dopey - forgetting I hooked my feet around the base of the computer chair and then rolling backwards over my foot damaging my big toe quite significantly. This did not help with the Grumpy stakes. If there had been an Angry dwarf, he would had featured too. Likewise Forgetful; left my glasses on the laundry bin and couldn't remember about a minute later where I had left them as well as other silly instances. Still, other than the toe incident, it has been a pain freer week. Insomnia has struck once, the night before I was due to host a garden party and woke up Grumpy wanting to cancel, but Happy was back by the afternoon and all went well. With four small dogs running around - the smallest of which intent on humping my dog at every given opportunity - and a large wolf type dog guarding the gate, one cannot maintain grumpiness, and rightly so. Reflexology doesn't appear to be making a miraculous difference, which is to be expected, but it does seem to help keep the pain at bay and I generally feel generally better. And I think I look better, more like death that has significantly warmed up rather than death that has been sat in a draft for a considerable time. How the toe injury will effect next week's reflex will remain to be seen - perhaps we can work around it. Still, the positive about the toe injury is I get the bed to myself at risk of it getting touched, plus I had to put a pillow at the bottom of the mattress to keep the duvet off my foot so there wouldn't have been room for anyone else and the cat! So, silver linings everywhere if you look at it the right way. And, despite dodgy toe, I managed to swim 10 lengths in 20 minutes today, and hobble round the supermarket at a pace slower than a snail with a very heavy house, but I did it. And that's the main thing.

59 Seconds

I am reading a book titled 59 Seconds by Prof Robert Wiseman. He largely confirms a great deal of what I know about psychology and recommends methods I use in hypnotherapy. However, what he recommends in part are exercises that take 59 seconds including writing down how you feel at that moment in 59 seconds. I recommend journalling or stream of consciousness writing to my clients but have never limited it to 59 seconds. So after the next two positive statements, you will be reading my 59 second experiment. Dad and his wife visited and we managed some family time together without it being too draining. I managed to attend a friend's Improv Night, once again due to my close friends who are fast becoming my personal 'event' taxi service, the night was excellent. Here we go then, my 59 seconds...
Today I had planned to go to the Chalice Well and Glastonbury with two great mates. Unfortunately I had another insomnia night and ended up on the sofa with the dog reading Wodehouse at 3am feeling 'jetlagged'. I am sick of this. There is no light at the end of my tunnel on days like this. I try to be positive but it's hard when I think of all the time I miss out on and experiences by not being able to partake. If this goes on for years, as well it might, I will have effectively sacrificed months of my life to this illness if I add up all the times I missed out on things and that makes me angry, sad, tearful, frustrated and yes, self-pitying.
There.
He's right. I do feel better.

Testing My Reflexes

Week three of reflexology treatments. Had a couple of rough sleep nights at the weekend and consequently had some remiscent pain. Oddly moreso in my left leg and groin rather than in my right lower leg. That has calmed down. Energy generally ok, rest periods still a problem.  Am managing two a day - should be aiming for four. One thing that seems to be working well is doing a 10 minute meditation before going to work on a evening or before going out. Managed to get out on a friend's birthday on Saturday night and got a lift to a fro with my lovely friends again. Went to the second Reiki 1 course day on Sunday, which was well timed as I was feeling rather poo due to severe lack of sleep. It was a great day and I had one of the best night's sleep on Sunday. I continue to reiki daily and have bought a new meditation cd to try. Family are visiting from today and that will be a test - whether I am tempted to overdo it! Will keep you posted.

When you're washing the dishes, wash the dishes

A wise friend of mine quoted the above zen/budhist phrase recently. It essentially means concentrate on what you are doing at that time to the exclusion of other distractions. In this busy society we, particularly women, are expected (either by themselves or others) to multi-task. However, it is much more productive to do one thing at a time. CFS affects my memory so attempting several things at once is not a good idea. Having said that I just listened to Radio 4 whilst doing my work emails (note to self: must try to practice what I preach). Now the radio is off and I am just writing my blog. It is hard to slow yourself down when you are used to charging about. I have had this enforced upon me, which is even harder as it appears to take the element of control away, something that as humans, we do not like to have taken from us. Actually, I can take control and I must learn to do this by that dreadful word 'pacing'. I prefer 'planning'. I am a natural planner. My timesheet did not work very well last week, so instead I am noting high and medium level activities in my diary, which I look at daily, take an overview of the week and attempt to slot rest periods in around it. I'm not sure if that will work any better. Already I have had to change today because a friend I havent seen for a year is visitng me on Thursday. I managed a swim today, the local pool is open again but they had lanes marked off so I couldn't do widths. I did however manage 8 lengths in 20 minutes. The pool is 25m in length, so I am pleased with that.  I went prepared this time with salted cholocate and that helped. Last weekend I managed to help some friends weed my mother's garden on Saturday for a few hours, and I managed to attend the harbour festival on Sunday, stick in hand and keeping a keen eye out for empty benches. I kept urging my friends to go off without me, fearful of making them feel obliged to stay with me, but they said it was nice to sit and do things at a slower pace. And I hope they meant that! I started a six week course of reflexology last Tuesday, and am off there again shortly. I'm not sure what it's doing but I felt good Tuesday and then had a low mood Wednesday, but that could be to do with some news in my personal life I am trying not to worry about. I still reiki daily and meditate and this is proving useful. I have noted that although I think I am not worrying, and my shoulders are less tense and I generally feel calmer and more relaxed, I am grinding my teeth. I keep catching myself do it and it's not something I recall ever doing before. Hmm.

De Ja Vu

I feel I've been here before, probably because I have. The past week I have revisited the rollercoaster ride that is ME/CFS. I am still reiki-ing daily and generally feel calmer and less angry and less frustrated, so that's good. I am still not, however, recognising my limits. At the ME clinic on Tuesday I was told off for making excuses as to why I haven't logged enough rest periods and using low level activity as rest, when it isn't. Well, that told me. I am confusing, it seems, relaxing activity for rest. For example, copying out some poetry for a friend, reading a non-fiction book, writing a notecard to someone, chatting on the phone to my mum, spending time with a friend. All relaxing and enjoyable and all low-medium level activities. I now have to schedule four rest breaks into my day lasting minimum 10 minutes. It sounds easy, but you try it, or maybe you're a natural sloth! Rest periods include having a bath, reading fiction, looking out of the window, not talking, not watching TV, not playing with the dog or cat. Perhaps I am too easily distracted. I can even distract myself without too much effort. My biggest problem is no two days are the same. My life is hard to regulate. Nevertheless, try I must. It took me 45 minutes to walk a 20 minute walk home Friday night and I was in a bit of a state when I finally got here. The dysathesia returned Weds/Thurs. The shiatsu didn't have a positive an effect as usual, however, it is possible it cleared and moved things on - hence the sudden fatigue attack. The good news from that treatment is that she feels the anger is subsiding. So I can at least feel smug about that. Plus, I did manage to get to a birthday party Sat night but had to leave at 9.30pm (I stayed out later as a teen!) because I was driving and had to allow for how tired that makes me. There is no logic to ME and I need to stop trying to find it. Back to the drawing board for a new coping plan. Where's Baldrick when you need him?

Recipe for Success

A week ago I attended the first day of a Reiki level 1 course. Since then I have been reiki-ing myself daily. Sometimes twice daily! I do it in the morning before or after my meditation cd and sometimes I do it before I go to sleep. It is proving helpful. I have more balance in my energy levels. Yesterday I met up with some friends and had a cuppa in the morning. Once the rain had stopped I weeded the front garden along the steps and path, which was handy because I got to sit on the steps and path! After dinner I took the dog out for a little walk without my stick, which was slow progress, but we did it. A Neals Yard Arnica bath came in handy to end the day. Today I cleaned  the house nearly through - I had a bit of help. We went shopping, which made me dizzy but a bit of dark choc helped that. After lunch I made bread - well I put all the stuff in the breadmaker - and made two lasagnes (one soya free for me)  whilst listening to good old Radio 4 and 4 Extra and it was quite relaxing, if a little tiring. Phew! There are things that haven't been done, but I wanted to cook as I can so rarely manage it properly these days. I don't feel I've overdone it. Maybe I have found the recipe for success? Perhaps I am starting to master the evil pacing conflict? Well, time will tell.

Backsliding away

An odd week of disturbed sleep due to pain; right foot as per and a new one feeling like I'd torn a muscle in my right thigh, but I know I haven't. Also a strange fluey temperature changing thing was going on one night, resulting in two hours sleep Tuesday and four hours sleep Wednesday. I am still using the Amitriptyline and topping up with Paracetamol. Today I bought out the slightly larger guns - Solpadol and if this continues will be resorting to the much bigger gun, Diclofenac. When this happened a couple of weeks ago I was getting a bit stressy about the work going on in the house, but I am not stressed now. I am frustrated as there is no explanation for this, and I do like a good explanation, I'd frankly settle for a bad explanation. I kind of feel like I'm backsliding after feeling I understood ME a bit more. It is a tricky beast. So, new plan tonight: arnica bath, whisky, drugs, bed.

The Sun Shines on a New Day

Well, the weekend went better than expected. It was great to get up Saturday and be 'man-free'. No workmen. No noise. Just quiet. I spent a chilly morning in the park with a fellow therapist at an event offering on-site massage. She had given me a shiatsu treatment Friday, which I badly needed. It had been painful and unpleasant but had done me a power of good. She told me she feels I have lots of energy - it's just stuck. And that she senses lots of anger from me about the illness (no kidding!). I asked her how I can get the energy moving and she replied maybe I should stop trying so hard. Hm. Saturday I was on my own in the park and had been concerned I wouldn't cope, but I had a steady flow and spent 50 minutes with a wheelchair-bound lady with MS that just re-enforced why I do what I do. My step-dad helped with the gazebo and ferrying me to and fro and my mum sat on reception back at Carpe Diem, walking the dog up to visit me twice. It turned out to be a stress-free day. Sunday, was spent painting the kitchen with Radio 4 in the background. More like about half of my small kitchen to be honest, it was slow progress, but progress none the less and if you stand with your back to the unpainted bits, it looks lovely! I chose to spend the day alone, and was glad I did, over-run as I had been that last week with workmen (currently back and drilling as I type). Still the end is in nigh and I'm off to work now anyway. I had an arnica bath last night and all my bruises are coming out like pretty rainbows, but I don't feel sore or achy today. So that's definately something to bear in mind for the future.

From home to house

I am currently having work on my home done which in the end will be great but has taken much more toll on me than expected. I had anticipated mess and disruption but not quite the difficulties that have ensued. It is more the to-ing and fro-ing for extras of something or a new something else because inevitably things have gone a bit wrong. The worst has been the water downstairs being cut off since 8.30am Monday. The other unforseen issue was the plumbing problem for the downstairs loo that is also going in. Monday was supposed to be an easy job of laying some cold water pipes for it but the job had to be changed and got complicated, hence the no water situation. It has been very wearing going up and down stairs for water. I haven't washed up since Monday until I uttered the unusual phrase 'I'm just going to wash up in the bath' to the carpenter this morning. But then, I haven't really cooked either, so four days of washing up was just a bowlful. I was trying, up until yesterday, to look upon it as posh camping. This morning I was ready to throw in the towel. I have lost several things this week, misplaced, one of them nearly included my mind. I left over two hundred pounds of fees in cash at a pilates venue, which was found and returned. I went to buy a bowl and bin only to get to the till and find I didn't have my purse. That was because I had used a different bag earlier to try and find a tap washer for an antique brass tap - to no avail. I have been sleeping very badly. I sent a snotty text to my partner working at Glastonbury, I bemoaned my lot to my mother but ended up laughing with her (God bless my mother - she is a marvel!) I sent several whiney self-pitying texts to a friend who politely asked how it was going, and was told in no uncertain terms. This morning I got to the point of not being able to speak to the workmen and had to leave before I broke down into some sort of sobbing mess. The 'toilet guy' was drilling holes in the wall to move a boiler vent and install a ventilation fan. I honestly think it would have been quicker and quieter to knock the damn wall down and build it back up with the holes in place. The poor cats looked at me frozen to the spot at the top of the stairs in abject horror and I had to carry and escort them to the garden. At 1.45pm I retreated to my summerhouse with books and charged laptop, where it is markedly more peaceful. Misty, the older cat, and Oscar, the dog joined me. Rosie has decamped next door and who can blame her. I woke up this morning, exhausted and very sore, low and tearful. I only just made it downstairs as the plummer arrived. He took one look at me and decided not to try his usual peppy chatter, which I have managed to engage in up until now. Then he apologetically presented the tap, and so the day began. At that point, I didn't think I'd make it through and was concerned how I would handle work later at the therapy centre. Luckily my shift will only last from 6pm-8.30pm. I may have a bath later now I have removed the washing up and have water and a working tap downstairs to do the dishes. The carpenter, bless him, still asks me questions about what I want and how and where and I just smile and say, I have no idea - what do you think? The ability to think and decide left me Monday evening, a fact I think he and the plummer are aware of, but they humour me and try to give me a sense of being involved in the work on my house, even though as soon as I've given my comment, I can't remember what I've agreed to. Oscar, having spent his first six months of life on a saw mill site, has befriended the carpenter and sits by the saw and tile cutter watching him work and getting covered in dust. Perhaps I should bath him and not me later. Mind you the whole house is so dusty it looks likes Mrs Haversham's from Great Expectations. I wouldn't be at all surprised to find a spinster in a wedding dress and a mottled old wedding cake when I next go back in. Ah well, it would be something different to cheese and crackers to eat I suppose. Best go check all the clocks haven't all stuck at twenty to nine...

Making Progress

This week I had my appointment at the CFS/ME clinic at Frenchay. She was very impressed with me (who wouldn't be) and said I am already doing what they would advise and more. I am, of course, in a priveleged position having easy access to comp therapies and we discussed what I had found useful: nutritional therapy, homeopathy, electrical acupuncture (the standard had no real effect) and most recently, shiatsu. I have to fill in a sleep diary and chart my pacing (rest/activity/rest etc) as she feels I am not doing this effectively enough yet. Back I go in two weeks time. The other thing progressing nicely is the kitchen. I have been clearing it out in bits throughout the week and some wonderful friends came and sanded and waxed their hearts out yesterday on furniture that will go in there. It's frustrating I can no longer do these things myself and I am so grateful to them. As I type the carpenter is ripping out the kitchen's innards and I am pleased to report the dodgy looking ceiling is more stable than it looked and hasn't come down. He has, however, exposed a large plaster hole, so if I did want to go for the Rustic Look in a big way, I could just leave it - maybe not. Now I just have the fun of trying to make meals - where did I put the.....? will be this week's cry.

Take it with a pinch of salt

I suffer a lot with dizzy spells, particularly when doing anything remotely cardiovascular or when I have had to concentrate for a long time. This is why I walk with a stick and don't drive much. It's safer this way. I read in a cfs/cbt book I got from the library that sometimes cfs peeps can get low blood pressure and to increase salt in the diet a little. I have taken salt out, largely, since seeing the nutritional therapist, so I decided to experiment. On the way back from supervision last Sunday, I felt a tad unwell and called into a shop which sold Montezuma choc. They had dark choc with salt in. So I grabbed a couple of bars and sat in the car and ate a few squares. I have decided to take it swimming with me to see if it helps the 'wobbles' when I get out. I have also started trialling a few salted peanuts at work between clients. So far so good. I did get my BP checked but it was normal not low. Not that I really want it to be low, but it would at least have explained the darned dizziness. Also, this week my business partner and acupuncturist has had the temerity to take and two and and half week break! So, I booked myself it with our lovely shiatsu therapist. I had my first full treatment yesterday. It was pleasant and painful! It took me a while to come round but I slept well, have much less to almost non-existent lower limb pain and managed not only to walk to work and back, but to cook a meal from scratch for myself and my partner. I have booked myself back in next week!

Life is going swimmingly

So, in an attempt to continue the pacing exercise-rest experiment I went swimming on Saturday. It was a slow start to the day, but I had decided I would do this and I knew I had professional supervision on Sunday afternoon so going Sunday morning was not an option. Therefore, bag in hand and a book of pre-pay tickets that I hoped were still valid, off I pootled. The good news was the tickets were still valid so even if this was a failed attempt, it had effectively cost me nothing on the day. I decided on widths. Lengths looked a bit daunting and there were several floating children bobbing around like hindering buoys. My aim was to survive 10 minutes. After managing 10 widths in 10 minutes I had a little stretch and thought I'd try again. I managed another 10 of each. The one odd thing that I discovered was that my right leg was none too keen on this idea. I like to do a few (usually lengths) breast stroke and then a stint on my back (bouys allowing). My leg followed along and would occassionally flick into life - if you've ever seen an axylottle (unsure of spelling) you will have observed they float like a dead thing then suddenly spasm as if having been electrocuted. My leg did that. Not painfully, just oddly. So I gave up trying to make it work and dragged it along behind me like a tug boat. I can't say I experienced a sense of achievement at the end - generally I swim 20ish lengths in half an hour - it felt more like I had taken part in a rehab programme for recovery following an injury.  Still, it was good to have tried it and to know I can go back and try again. Maybe my right leg will join in next time.

Keep Taking The Tablets

Well, it's been another interesting week. Electrical acupuncture is proving to be my new high. I am so lucky to co-own a therapy centre and make the most of freebies from my business partner (well, it is in her best interest to keep me going!). During my last treatment with her we discussed how I can better manage my pain, which strikes me most at night time and disturbs my sleep by upto three hours, and at worst can carry over into the following day. So under strict instructions from said business partner, I telephoned my GP and asked for another prescription of Amitriptyline. I am not a massive fan of this drug and had hoped to cope with this purely through complementary therapy means, however, needs must, etc. And the whole point of complementary therapies is that they can often best effectively run alongside conventional medicine (as I so often tell my clients). So, I have promised my GP I will take the 10mg of this drug for one month and report any improvements, or not, as the case may be. We shall see how that pans out. Since I last posted, I have managed to see another birthday in and enjoyed a lunch with partner, parents and dog at the local pub. Then to really treat myself, I visited a reclamation yard (I know how to party) and bought a cabinet for my soon to be overhauled kitchen. On the bank holiday Sunday I had the traditional birthday gathering. Ordinarily I will spend three hours cooking and preparing food. This year I did one ovenful and Tesco kindly provided. Also, we lacked silly games but we did have six dogs present instead; five Cavalier King Charles' varying in age from 11 weeks to 6 years, and a lovely wolf-cross-horse dog (breed unknown), and they provided plenty of entertainment for all. It was a rather more subdued day but enjoyable all the same. People very politely left earlier than usual, which made me a little sad, but I appreciate their kind thoughts and consideration. However, the next day, after a two hour lie in, I felt fairly well. I was glad of the day long drizzle which prevented me being tempted to leave the house until I had to go to work that evening, and instead I tidied gradually and read with my feet up, while my long-suffering partner, man-maid and domestic God did a mountain of washing up!

Pet likes

Another week with its measure of frustrations - at one point I threw the remote control across the room in a tantrum! - but moreso its high points. I have decided to get the kitchen revamped and spoken to a nice man who will help me. I am going shabby chic, and a good friend is going to do some stripping and waxing for me (of wood I hasten to add). The same great mate and her lovely hubby took me to some diy stores and looked at tiles and paint with me today and gave some very helpful comments. An antique pine sink unit with brass taps I took a fancy to on ebay has become mine after a deal with its owner. After two awful night's sleep plagued with leg and foot pain, I treated myself to a curry and a bath last night and slept like a baby til wrested from my sleep by my dog Oscar whining his lonely bark, who waited for two hours for me to manage to get myself up and downstairs where he was waiting excitedly on a clean, dry puppy pad. He joined us for lunch today in a local pub and we took a slow stroll down the cycle track. Partnerless last night, both cats cuddled up on the bed with me. Every day I am grateful for my pets. Oscar is practically a constant companion and makes me smile many times a day. Without him I don't think I'd cope half as well.

Rollercoaster ride

I'm not a fan of rollercoasters. I don't like the sudden unexpected dips. I'm not terribly adventurous being a more feet-on-the-ground sort of person. And, I am a fan of predicatable. CFS is annoyingly unpredictable. I can wake up feeling like I am soaring towards an average - dare I think it - above par day and then by lunchtime find I am sadly mistaken. Two unexpected things happened this week that gave me little highs. I had some electrical acupuncture by my colleague to deal with dysesthesia (unpleasant sensation) in my lower legs and feet; a feeling like stinging nettle rash. It had been keeping me awake and was present by that point for most of the day. About an hour after the acupuncture I hit a little dip in mood and energy, which was odd because formerly acupunture had given me a lift, but only for that day. However, I discovered the nasty sensation had been alleviated and has remained absent for the past four days, returning slightly this morning. By the evening my energy levels had also improved and I taught my two classes with very little fatigue. I have also saved a bee this week. It was a truly fascinating experience and one I have bored nearly everyone with. I fed it honey and watched it feed for half an hour, then guided it out of the window and watched it fly away. I then ordered a bee house and have bought a bee plant. The whole thing, simple and silly though it might seem, really lifted my mood - and conversly, my energy. Sometimes, it's the simple, unpredictable things in life that make it worth living. I even got out last night!! We went to a pub for a friend's birthday. I managed to drive. We left early but I didn't feel I missed out. I got there, that's the main thing. Make that three highs!

Another one bites the dust

I relinquished yet another activity this week. I have driven to a Pilates instructor in Horfield to attend a class for several years. I now attend on a Tues morning. However, these past few months have become a struggle, largely because of the driving. So, with reluctance, I have decided to cease attending this class. However, I had a really good chat with my teacher, who is also a colleague and friend, and she has said to drop in an out if I have a better day. In the meantime I am going to have a go a swimming. It is closer to me and I can do it later in the day or a different day as the feeling of 'having' to get up for something was also a problem. So, I guess it's not all bad.

Pacing

This week I have managed to plant some plants. An action that should've taken me about an hour and a half but took me two days. Not two full days, just had to be spread over two days to be manageable. Still, it is done, and other than accidently planting my purse in the bottom of an old jug I'd bought, it was good and the garden looks pretty. Plants are in pots which make them more manageable. Friday my partner and I went out to the Brassmill for a meal to celebrate a year together. We went early and were home by 8.30pm. Still, we did it, which is the main thing and it was nice. Saturday I made it to my friends' wedding. A friend picked me up and dropped me back before the evening do got under way. I used my stick once and had several arms offered my by helpful friends to get me up and down steps and stop me falling over. I am very blessed to have such lovely friends. I am pleased I was able to attend and enjoy the day. It was a super day. Last night I woke up with leg pain and this morning I am sore, so I am on a go slow. Still, I have had a lovely long chat with a friend who rang from NZ and have sent the dog out on the green with the cat to supervise him while I made my breakfast smoothie. Now I feel human I will shower and go to supervision this afternoon (which I am required to do to keep up my registration as a clinical hypnotherapist). A friend has a birthday party, but while I keep an open mind, I doubt I shall make it. This makes me sad, but such is life, currently. There will be other parties and celebrations I will and won't be able to go to. But once the CFS has burned out, I fully intend to dance the soles of my shoes off.

Best laid plans of mice and mand

Last week I planned to go the Bluebell woods with friends, my partner and dog, and have a picnic. It was lovely. I also planned to do some cleaning. That didn't go so well. Perhaps some gardening? Nope. A friend had a hen night last Saturday. I planned to join them part way through, as I thought I could cope with that. Didn't get there. Plans lead to disappointment. So, I have to plan to do less. Or not plan at all. Except I'm a tiny bit of a control freak, so that's not likely. This Friday my partner and I have been together a year. We plan to go out for a meal. We shall have to go early, since I plan to attend a wedding the next day and want to make it. I also plan to leave early as a coping strategy. In between that, I'm not planning much. Perhaps some reading and resting. Lets see how that pans out...

Below par

Today is possibly not the best day to start this, or perhaps it is. I don't have good or bad days, I prefer below par, above par and average. Today is a sustantially below par day. I have had little sleep, I have been in a constant fog all day and I feel low. However, I spent some very healing time with a friend who visited. We chatted gently - unusually no raucous laughter - and she advised I start a blog. So I have. Here I am. I am here, today, in this state as I have so far failed to learn the 'pace yourself or pay for it' lesson. As a daoist friend says, life will keep presenting you lessons until you learn from them. I am ready to learn. I understand it will involve sacrifice and I may not always like it, but the what I gain ultimately will outweigh what I stand to lose.I am stopping now as I am tired. See, I am already learning!