Testing Times

Well, since the last post I have managed to get a bit more control over the shoulder problem but it is still not right and I am currently smiling sweetly at out lovely manipulative therapist and telling her I am fine - she will catch me out one day. I have not returned to swimming as I fear it exacerbates rather than helps the issue. Instead I returned to good old Rosemary Connolly's Salsa DVD and tried a bit more of that. Encouraged by being able to do 12 mins I tried the 17 min workout. My plan is to try to build my legs back up. Whilst on holiday in France I managed a fair bit of walking, mostly with my stick but some without, and am getting further afield on flat surfaces minus walking stick. I used to have powerful legs and still look mournfully at my bike which has been garaged for two years. However, it does appear that greater strength in them is forthcoming and it gives the arms/ribcage a bit of respite. This week I have dusted off a 10 minute dance DVD (faster paced than the Salsa). I used to combine three workouts but thought I'd just try one. It went well and today I have combined a faster and slower one and felt very excited at being able to complete it! I am continuing to eat better; preparing and freezing down. Sleep has generally improved and if last week is anything to go by, which was emotionally and mentally fraught, I am handling stress better. All of these feel like mini tests, and it is very encouraging to be able to meet them head on and deal with them. I will not say I hope to keep improving as it implies I might not, so I will say I aim to keep improving - allowing for gradual progress. It would be so nice to go to Zumba or get on my bike again one day, and now that feels like more of a possiblity in the somewhat distant future, but a possibility nonetheless.

The Three Rs- Rest, Relaxation and Red wine!

Ah me. Well things have not so much improved as worstened since the last post. In fact I went to the Off Licence after work Tues night to buy some red wine. I now have a rib out and have availed myself of Liz's electrical acupuncture to try to deal with pins and needles in forearm and fingers in addition to all the muscular problems and pains. Karen, our Osteo at Carpe Diem, now informs me if she doesn't have a go at the rib it will keep exacerbating the issues. She also warned me it will floor me for a day or so about 48 hours later. So, lucky me, this is being done today. Her parting shot was 'have an early lunch so you don't throw up when I do it'. I am not one for bothering about pain or discomforts during treatment but I may cry today. In the meantime, yesterday I went to the GP - as Liz is away for a week or so then I am away, so no elec acupuncture for me - to see about getting some heavier duty anti-inflammatories. She refused on the grounds that only total rest will deal with it. CFS people appear to be more prone to inflammatory issues and of course we fatigue our muscles quicker. I have already had a warning from Karen that I am overworking fatigued muscles. I have not heeded this particularly well. It is tricky being fully self-employed with no support at home as I live alone. I could tie floor cloths to the animals and scoot them about the place, but I don't think I can train them to iron, wash up or vacuum. So, in lieu of not being able to totally rest, a compromise has to be found. I had forgotten that when the CFS was so bad last year I taught my Pilates from a chair. Everyone was very understanding and I demonstrated only when absolutely necessary. I have somewhat taken for granted the improvement I have achieved this year. I am now very interactive. It is time to start to look for volunteers to demonstrate some shoulder exercises under my tuition I feel, at least for a few weeks. I have a weeks holiday (not enough according to the GP who frowned at me) and will make the most of that. Then I close for two weeks this year at Xmas. I was a bit grumpy about that, as that's a loss in income for me, but I think I will end up being grateful for it. Additionally, a wonderful friend is going to come and do an hour's cleaning once a week for me. That will take the pressure off. All I have to do is get to the end of this year, with that plan of action, and hopefully start next year all well again!

Hitting A Sore Spot

I appear to be in a bit of a pickle: thoracic outlet syndrome and inflammed shoulder one side, tear on the other side, locked lower neck, both wrists unstable, and tennis elbow, but only one side. Always a silver lining! Mahoosively grateful to our brill manipulative therapist Karen at my therapy centre for trying to sort it out. Oh, and for telling me to go home and drink red wine. Mmmm. Medicinal red wine is the best. Karen says I've been overworking fatigued muscles. Much as I loved a recent visit with family, I fear I overdid it. I then had a visit from my partner, which whilst is enjoyable is always a bit full on as it's such a short amount of time. I do feel like it has taken me a while to recover (two weeks and counting) and of course I had to keep going with teaching and work at Carpe Diem, which has gone massage-heavy with a few hypnotherapies and private Pilates in between. It's really hard now that I am living solo and self-employed not to keep going. Especially as I feel more able this year than I did this time last year. Plus, it is in my nature to keep going (take after my workaholic father!) but I have noticed I am struggling with the swimming, feeling like I'm forcing myself to go and not enjoying it as much, but still feeling glad I have gone when I'm done. I am due a holiday in a few weeks, and boy am I ready for it. In the meantime, I feel a top up on that red wine is in order....

Nobody Here But Us Rabbits

Well, my housemate moved out on Thursday so it's just me, two crazy cats and a paranoid puppy (no rabbits). I know friends and family were a bit concerned about how I would cope with less help and more to do, but I have been practising! Over the past few weeks I have been doing a little more; hoovering, floor washing, gardening. I have taken on a gardener who will come once a month or so and do the small hill that is my front garden, but I managed to get the lawnmower out this week (trickiest bit is getting it in and out of the garden storage box) and I attacked the back lawn. It does look more attacked and less mowed but it's tidier and besides it's littered with brown dead patches where I had to kill off ten red ant and flying ant nests. Now the hot weather is here I am having to water the garden, but that is manageable. Today I have hoovered and washed floors downstairs and am off out for breckie with the girls in an hour. I am also pleased to report that I have lost the weight I put on because I am eating better, and subsequently feeling better. So, I'm back to that age-old phrase: everything in moderation; food, exercise, housework and fun! I know at the chronic fatigue clinic they said reading wasn't proper rest, but I find it restful and it's one of few things that makes me sit still for a while. I read for an hour when I got in last night before doing my dinner and starting to sort the part of the spare room that used to be my office and is in a bit of a pickle. This afternoon I will paint the red wall in there a nice teal colour to go with the new bedding, picture and lampshade that Mum and my step dad helped me install and that will be that. So, along with the weather, life is pretty sunny at the moment - and long may it last.

Weighty Issue

Despite having increased my activity somewhat a few weeks ago, I was quite depressed to find I had put on five pounds. It may not sound much but it is really hard to shift since I can't just up my activity. I started eating less when I noticed waistbands tightening as the first couple of pounds went on butfrustratinigly put more on. Depressed I went back to the GI cookbook as I have to admit I had got into the habit of eating the same old stuff and not really cooking, and I was snacking, not necessarily on bad stuff, but still. So, on the fourth week into this I find that I have lost a couple of pounds and clothes feel better. I am eating more, am less tired and snacking less.I have been able to increase the swimming to 6 full lengths and 6 or seven half lengths of front crawl amongst the 36 lengths, the rest are breaststroke. On a Sunday I do the Salsa basic work out and the warm up and two circuits of the resistance DVD, making a 35 minute workout. It just goes to show what a difference the effort to eat properly makes, and I am enjoying food again. It's so important to get the right balance, and of course I feel much happier!

Slow progress, but progress nonetheless

It is difficult to know if fatgue after activity is part of the CFS or just down to a reduced level of fitness. I have found that I am not so dizzy and shaky after swimming now, so I decided to experiment by upping the odds a bit. Rather than trying to swim more lengths, I am now keeping to 30-36 but rather than doing all breaststroke am throwing in a bit of front and back crawl to make it more cardiovascular. On the first attempt a couple of weeks ago, I just did a few half lengths like this. I felt okay after. Today I swam six half lengths front crawl, four full lengths front crawl and approx 15 third of a  length back crawl (tricky due to an old twingy rotator cuff injury). Since this is proving quite successful I dusted off a couple of fitness DVDs. I looked at the basic section of a Rosemary Connelly Salsa DVD I would never have touched pre CFS as it was too basic and boring. It is 17 minutes and I managed it. Gentle though it is, I did feel I had done something. Then I tried a Matt Roberts DVD which has resistence and cardio mini workouts. These are designed to be combined but I haven't got that far! I have managed to do the warm up and one circuit of a resistance workout (approx 10 mins) he does the session with burst of activity with periods of rest (which I spend panting mostly). I also do a little 5 minute weight lifting thing that I adlib each day. The plan is to build on the stamina I have already put in place and try to increase my baseline a little more each month. We shall see....

Admitting Defeat

Well, despite my best efforts I am back on the Amitriptyline. I tried for two weeks to do without it but felt so bad that I went back on a double dose for ten days. The opium tincture was useful to come off it but it just didn't give me a long enough period of sleep and some nights became very disturbed again toward the end of the trial period. I am now back down to my usual 10mg per night and would like to perhaps get that down to every other night, though I tried last night without it (largely because I forgot to take it and realised too late!) and had an awful night's sleep. While I don't want to stay on it long term or become dependant in it, I just don't think it's worth coming off it just yet. The better quality sleep I have got on it has meant I can do more in the days. I have, however, had to admit I have become guilty of trying to cram too much in and not resting enough. It's frustrating having to look at a week and split it up into manageable sections; working out what I can and can't do/attend, but it is the only way. I have to remember how much better I am doing than this time last year. A couple of weeks ago I feared I was backsliding, and that was horrible. I have to be sensible, and sometimes boring. That's life.

In Your Dreams

I have decided to try to come off of Amitriptyline, again. Previous attempts have not been all that successful. This time I am trying poppy seed tincture.I have been trying this for four nights now. Last night I tried it in Horlicks as an experiment to see if i could sleep longer. The first night was disturbed sleep but lacked disturbing vivid dreams, which is what generally happens when I try to leave off the Amitrip. So that wasn't so bad. The cats and dog have been doing their utmost to sabotage sleep, but that aside I am going off quicker but still waking around 5-5.30am and struggling to get back off again. Still, I have discovered the random joys of early morning radio. I am hopeful that since this is early days, it will right itself and I will sleep longer. Anyway, a block of undisturbed six hours sleep is better than a disturbed seven hours.
Other than that, I managed to  socialise at a friend's house for a curry night on Friday - getting a lift there and back, swam last Tues, Thurs and Sun (managing 24 lengths in 30 mins on Sun, though I had to sit and eat extra salted choc!), and have re-arranged some furniture over the past two days, with a little help. Mood has been strangely low and a bit tearful, and has coincided with coming off the Amitrip. Could be a coincidence. Had some reflexology on Saturday, just to try to get a handle on it. Feel a bit more up today.

Life is back to going swimmingly

I have decided to attempt swimming twice a week and try to work on improving my stamina and strength. I feel the improvement I have gained since last March has plateaued and am keen to experiment with gaining more ground if I can. This week I bought an Active Card and went swimming Tuesday and swam 16 lengths in 21 minutes and today I went again and did 18 lengths in 25 minutes (and this after a run to the tip with a helpful friend). I have also taken my dog, Oscar, to the park but we both lead down after 15 mins! Well, it's a hot, sunny day afterall! Salted choc again has come in handy today. I think I should consider shares in Montezuma, Lindt and Green and Black's! Time for a quick rest with my book in the sun before a brief spell at work.

Time flies

I can't believe it has been two months since my last post. Several things have happened the most notable of which is the continued plateau of improvement. I am still managing rather well, teaching six classes and working as a therapist a few days a week. I am doing the odd bit of housework and have given a two hour presentation/workshop. I have gone back to swimming and managed 12 lengths in 18 minutes, which I was pleased with and my right leg, which used to give up the will to work after about three lengths, held up until about length 11, so I decided to quit at 12 lengths, plus I was feeling dizzy. Salted choc in the changing rooms perked me up nicely though. I would like to be able to increase the number of lengths and ultimately one day walk to and from the swimming pool as it is just a 15 min walk away, but it is uphill on the way there. So, I will content myself with working on increasing how far I can swim. I am going to go back to swimming once a week and if I can fit a bonus second time in, I will. I continue to be able to walk on flat land for about 10-15 minutes without my stick, but the slightest incline will slay me. I am finding I can manage to converse with people more without it being too draining, and this is very pleasant as it means I can socialise in a low key way such as a cafe with friends without it costing me too much energy. I still apply careful thought to what each day will hold and what I will do with it and log in my diary any major things that need attending to so I can plot my week. Sleep is still a major problem, not helped by the animals disturbing me, but I am sadly back on the Amitriptyline most nights of the week and sometimes have to up it by 5mg. I would like to be off this or get it back down to three nights a week, but for now, the most important thing is to try to regulate my sleep so that my days can me more productive if I want them to be. So I shall stop being stubborn and give into it for now. Finally, I have found comfort in baking! I find I can sit on a chair in my kitchen with the pull down cutting surface and manage quite nicely, and with radio 4 on, listening to a play it all feels rather therapeutic!

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!