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.

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.