Here I go again...

I can't believe it's been sooo long since my last post. November? Already?
Well, at last post I was bouncing around on my trampette (rebounder) and volunteering at Feed Bristol and feeling rather well. Unfortunately, I contracted that weird cold-virus thing that was doing the rounds and it really wiped me out. Then, as per usual when I am run down, shingles reared its ugly head, again. So, it was back to keeping myself going to work, and not much else, and a kill or cure attitude with echinacea and manuka honey. I lost my bounce a bit and have decided to take a break from Feed Bristol. This time of year involves a lot of digging and I just realistically can't do it. I am much better at admitting these things now.

Still, it's not all negative. In August I left quite a negative and unhelpful relationship and in September I accidently found a much better one! Starting as friends, we shared quite a lot of personal information, so at least he was well informed about what he was taking on with a chronically fatigued girlfriend, a neurotic dog and two attention seeking cats. Already, early days though this is, I know this is doing me a power of good. He is very supportive and has read up around the condition. Much as I manage it a lot better now, he is quite good at reigning me in, or noticing when I 'dip' and need to rest. I haven't been so pampered or cared for in a long time, it takes a bit of getting used to when you are so independent and reliant on routine to survive.

Sleep remains improved and I don't rely on camomile tea anymore, though still have the odd one.

Recently my back went, the first time in eight years. I had just started to experiment with a new form of exercise, so this was a big disappointment, but having had some physio and acupuncture, I am functional enough and having another go. This is a dvd a bought before my diagnosis four years ago. It has never been out of its wrapper so it felt really good to have a go, expect to not get all the way through, and manage it! It's only 20 mins but works cardio, strength and stamina. I am aiming to do this Tuesday and Thursday and still do the trampette in between. My aim in to improve stamina and strength in my legs. I would love my New Year's Resolution to be to walk without my stick!

Bouncing Back

Much as I am loathe to tempt fate. Things appear to be on the up. I can't believe it's been three months since my last post. I am still using the vibrocise machine and aiming for five days a week on that at 10 minutes a time. I have also been working on the rebounder (mini trampette) and have managed to get this up to 15 minutes with the first five minutes using hand weights.I aim to do that four or five times a week. I went on holiday in June and didn't use my stick much at all. I walk a lot further on the flat without my walking stick, but still need it on inclines or I slow to my granny-shuffle pace, though my legs don't burn and pain as much when I do finally get there. I attended two weddings and one of them was up north involving a train journey with a change and I did it without my stick. First stickless journey solo! Both weddings were quite long days but I coped and I enjoyed them. I have got myself out of a relationship that was draining and feel better for it. I have started volunteering at a large allotment type project called Feed Bristol for two and a half hours a week and stay for the shared lunch. I am using my body in all sorts of different ways and making new friends to boot! A lot more has gone on but these are the edited highlights. I also had my first thai massage treatment for a long time, as it has always been a bit uncomfortable since CFS but this was quite deep and did me good. So, there we are. Watch this space for more potential improvements.

Faulty Forty

Well, it's been a while. Since my last post, where I suspected a relapse, I then had quite a vile virus and the whole shebang culminated in shingles. Yep, my old friend was back. Because it's been absent for quite some time it took me by surprise and I didn't recognise the fevery symptoms or sciatica as a warning, just thought it was CFS related. The worst of it was the rash, which got to be about the size of a golf ball and wouldn't heal. It kept weeping and bleeding for two weeks until a nurse friend of mine suggested a dressing which solved the problem (couldn't get in to see the nurse practitioner for another week at the GPs and doctors 'don't do dressings' apparently - perhaps I might decide to not do my NI payments!). Anyway, in April I went on a retreat. I did not, in all honesty, feel like it. I had signed up to it earlier in the year. But I did go and was glad I did. It was a yoga and conscious eating two day retreat and I learnt a lot and met some nice people. Set in a mill by the Kennet and Avon canal it was very peaceful. Unbeknownst to me at the time, I may have overdone the yoga, which I thought was quite gentle, but is of course different to the bit of Pilates I do. A week or so later I found myself being bounced on my Karen the Miracle Manipulator to deal with a displaced rib. Still, the silver lining was the recommendation to drink lots of red wine. The darker cloud was a severe reaction to the rib going back in prompting another bashing by Karen, but more red wine drinking ensued! Moods have been up and down and frankly sometimes I find myself not wanting to be around anyone; difficult when my work involves me having to deal with people practically daily. Oscar, my dog has been my comfort, and the cats have been quite loving and good bedtime company too. Also, having Oscar means I have to get myself out every day. Exercise has gone right of the boil but I cannot allow myself to be frustrated by this. I am still walking to work and I am now experimenting with walking a little further without my stick and doing quite well with that. At a recent weekend spent at my uncle's caravan I swam in the pool for half an hour for three mornings, not particularly quickly but it was nice. I still haven't felt well enough to go back to my dance DVD, even though it is just ten minutes. I was bought a home vibrocise machine for my birthday, I had been attending a studio once a week. It's not the most pleasant of experiences but at ten minutes a time it's bearwithable. There are various programmes on it and I am experimenting, however, I would like to get back to 'doing' something with my body rather than just standing on a vibrating plate. Still, it's a start, of sorts. I turned 40 last weekend and managed to have  my party and survive it. I also had people coming and going all weekend which was jolly. I did crash a bit on the Monday and am still tired. I had a bit of a low day Tuesday but I find if I recognise what this is, it's best to give into it on a temporary basis rather than fight it. Ultimately I coped better than expected. Apparently life begins at forty, I'd like to hope mine would, but I doubt it somehow. I feel I am a faulty forty, there is much mending yet to be done. Maybe I'll get all that done and begin at fifty instead.

One limp forward and two limps back

I fear I am undergoing a bit of a a relapse. This is a dark time for me and I queried whether I should share it since i try to keep the blog a fairly realistic reflection of what I'm feeling with a positive slant. However, I know other CFSers or people with CFS related conditions read this on and off, and I think it's important that thy know they are not alone in their dark days. Also, I've been reading Jessica Thom's book, Welcome To Biscuitland, which details a year in the life of someone with Tourettes, and she is very candid about what she goes through and how it makes her feel. So, for the past few weeks I have had pain at night, some joint pain, which I am unsure is CFS related, but now foot pain, which definately is. Since Tuesday evening, this has become constant and is there every minute of every day. I had a nice day out Tuesday with family, but was tired and struggled with the stairs going round Avebury Manor. I also struggled with teaching Pilates that night, which surprised me. Wednesday I woke feeling sick and dizzy and it took me a while to get safely downstairs. The pain in my feet is worse on the right, and if you have ever sprained your ankle, it is reminiscent of that; feeling throbbingly painful, swollen and unstable. It isn't swollen, but it makes me limp, or I find I'm dragging it. So I am back to using my stick more as I am fearful of falling once again. The limp has caused a corn to form on the underside of my left heel, which is sore and makes walking difficult when I don't have one good foot! I am walking but cannot face any other exercise. I have to walk, one to exercise the dog, but also my back will seize if I don't, it is already worse than usual. Oddly, sleep seems to be okay, therefore there is no point going back on the Amitriptyline as that was always to get me to sleep and I would still wake around five or six in pain, when I was having painful episodes, and that is what is happening now. The camomile tea is still getting me off to sleep. Paracetamol and ibuprofen are as helpful as taking a smartie, so I begged a reflexology off of a friend and colleague at work yesterday and had immediate pain relief which lasted into the evening. It's back now but more like pins and needles than pain. The other things that have happened that make me fear this is a bit of a relapse are dark thoughts and speach issues. I generally live alone, though a family member has been staying and my partner visits one a week or so, both of which I am finding difficult. I have to work, being fully self employed, and I have to put on a face for work and make effort; teaching requires thinking and action, massage requires more action than thinking, and hypnotherapy requires more thinking and less action. Thinking can be as fatiguing and physical action. This week, as I mentioned, I have been out with family and went out with my sister and folks for lunch Friday. I made an effort here, and these were enjoyable times. Work was quiet Friday so my effort banks hadn't been too depleted! But after work I sometimes cannot be bothered with people. I will ignore the phone or turn it off sometimes, or give short answers so as not to encourage conversation. I want to be left alone. It's not fair on people, I suppose, but there we are. I am glad when my uncle goes out or isn't at home and I am glad when my partner goes back to his home sometimes. I am questioning now whether a party for my 40th is a good idea, how much it will cost me in energy. Maybe that's why I haven't done anything about finding a venue. Self-harm thoughts are back, I won't do it, but it's interesting to find them flitting through my mind again. And my speach has become slurred in the mornings again, I know this because I tried to sing along to a song yesterday and was a good half a line behind, though in my head I was in time. Previously, speach when the CFS has been bad, has come out as nonsense, it isn't as bad as this but it's not clear speach. I have also felt too sick to eat breakfast a couple of times, and since this is a smoothie and I get a lot of my vitamins from it, that is a problem. It's okay if I am at home, I just have it an hour or two later, but if I have to be somewhere, I notice the lack of it. It's tempting to look for a cause behind this, but I don't think there is one, this is just how this condition goes and I'm sure eventually it will improve again. So there we are.

I might as well jump

Not a threat of suicide, in case you worry. Those of you 'in the know' and old enough, will of course recognise the line from Van Halen, but I refer in fact to a trampette. Not a small tramp, but what is known officially as a rebounder (again, not someone on the rebound from a relationship - I'll stop this now). Much as I love my dance DVD I found I was getting a little bored of it. When I felt able I would do the 10 minute cardio routine, pause for water, then the 10 minute sculpt or stretch, which is a little more low key. There are only six to chose from on the DVD and I don't like one of them. So I dusted off my trusty old trampette and then in a fit of peeked energy, the adrenaline of which clearly spiked a daft idea, dusted off the cross trainer (and dusty it was indeed) that has lain folded under my bed for nigh on two years. It was effort enough getting the darn thing out, cleaning it and hauling it into its upright state, had it not been for the fact it stopped me getting to my bed, I may well have thought sod it, and had a lie down instead. It, like me, has seen better days and creaks and groans. Having that in common, I felt we had an ideal basis to start a beautiful working relationship. Initially, I started with five minutes on the trampette, water break, and two minutes on the cross trainer. Back in the day I used to bound around like a loon to Bon Jovi for about 20-30 minutes, but that was then. During Feb, I managed to up the jumping to 10-15 minutes averaging at 12 minutes with a water-related rest then five minutes on the cross trainer, by which time I look like I might need medical attention. I have to give it a minute or so before I can collapse the thing down and shove it away, and by then my legs have usually forgiven me and kindly agree to have a go at taking me safely downstairs. I do this somewhat faffing but worthwhile routine a couple of times a week. I still walk to work on a Saturday and if I'm not working I do a bit of dance. I am experimenting now with working out what is actual fatigue and what is reduced stamina due to not being able to do so much because of actual fatigue. It's a fine line but I seem to be treading it about right. Last week I attended a Mindfulness workshop and am following a book that takes me through an eight week course of it. It is more tricky than it sounds, but will prove helpful, I feel. The day inspired me to contact our lovely Nutritional Therapist, Claire Stone, to discuss writing a 7-10 day detox. I have always shied away from detoxing as I feared I would have to juice everything and eat raw food for a month and end up murderously miserable, but no, we are going to write a menu plan with proper food and I am looking forward to it. Having succumbed again to the blasted bugs that kind clients keep bringing in for me, I am now sat with a pot of honey, lemon and ginger tea. I am not a fan of honey, but am giving it a go. Manuka honey, no less. I am on my third cup and grimacing less than the first. Tomorrow I am off to a reiki share, cold allowing. The thing I a most proud of is that for most of Feb I did away with Amitriptyline. I now have a cup of camomile and spiced apple tea before bed and that does the trick. The only issue is that the drug clearly masked some physical pain (a hip injury where I was hit by a car, a poor damaged shoulder, and  random joint pain). It's hard to know how much of this is CFS related. I suspect the hip and shoulder not, but I cannot stand to lie on my side with my knees or ankles on top of each other. Therefore, I find I take up some bizarre positionings using all manner of things as props. Still, I generally get a good block of five or six hours of sleep and can mostly doze back off for a bit. I was also pleasantly surprised to find that coming off of Amitriptyline did not, as it has previously, give me very disturbing dreams. Other than a couple of minor 'emotional crashes' involving tears and dark chocolate and a little bit of hypnotherapy, Feb has been quite a good month.

New Year Review

Having had a quick look back over the last years blog it is interesting to note what has and hasn't changed. It is now two years since my diagnosis but I suspect closer to three with CFS being present but just not being recognised. Prior to Chrismas I finally fell prey to one of those awful viruses - thankfully missing out on norovirus - it started on my chest then took up residence in my sinuses, changing sides on a daily basis in case I got bored of it. Not wanting to take antibiotics for fear they would trash my immune system I went through two packets of sudafed, countless boxes of tissues and after six weeks began bemoaning my lot. I was also mightily fed up by then of flagging and being unable to do much except work, particularly as I had just started to get to grips a bit more with a dance DVD prior to the virus. A kindly client who had travelled a rougher path than I suggested probiotics as she had been told the virus is bacterial. So, off I popped to the local health food shop and got a colon cleanse tea to oust the bad bacteria and some probiotics to grow the new. I also swapped out my usual vitamin powders in favour of a new active life vitamin, just to give my body a change. Within in a few days a felt a definate lift and experimented by walking a bit further and then with a bit more exercise. Having got out of the habit of the Tibetan rites a while ago, I instigated them again, and now that I can lie flat without coughing have gone back to lying on my acupressure mat and ten-twenty minutes of mediation in the morning to help me wake up properly. I feel better for going back to the old routine. I think it's good to have a break occassionally, but not more than a day or so. I have left the reiki off for a while but did enjoy a nice reiki share a couple of weeks back and had a shiatsu treatment when I felt quite low and exhausted last Saturday. So what have I learned? Stick with what works and don't try to change it. Progressing little by little is still the key and I have less frustration and more acceptance of that. I would have loved to buy that Zumba dvd on sale after xmas, but what would be the point? It would upset me that I can't do it. Instead I am back doing my ten minute dance DVD and getting on with that three to four times a week. I experimented with walking into work on a Saturday (usually I walk on Monday and Friday only and drive in when I work a Sat) and that seemed okay. I have accepted that housework gets done twice a week rather than every other day, and pet hair on the carpet and footprints on the wooden floor isn't the end of the world. I have accepted, and others have had to, that some things will have to wait. I cannot be all things to all people, I have to be myself to me first. This year I have booked an overnight spa break (cunningly getting a sale voucher), booked to attend a mindfulness day and bought a book on the subject to ready myself, plan to book onto a course called the Endorphin Effect by William Bloom and have approached a friend about a retreat. A holiday is planned for the middle of the year since it was a mistake booking it so late in the year in 2012, a mini-break is loosly on the cards for autumn and I shall beg use of my uncle's caravan on the odd occassion. I turn 40 in May and jolly well intend to celebrate it at a party where I shall dance a little, but not too much, and I shall be happy with that, because two years ago I couldn't have even coped with a party let alone dance at one. Perhaps everything in moderation isn't boring, perhaps it actually means you get the most out of life; tasting a bit of this and a bit of that and enjoying it along the way. It means you don't overdose on one thing and have a deficiency of another. It means, in fact, you get that long hankered for and so elusive balance.