Mobility, exercise and pacing.

I have been thinking about what type of exercise is best for me given my mobility issues. So far I have narrowed the list down to Yoga and Tai Chi. Both would be difficult and some movements would be well beyond my ability, but I think that both would be beneficial. I've popped in a link to the NHS website about these forms of exercise. You know as well as I do that there are a million and one websites out there and different websites will suit different people

Past experience has taught me that I have a tendency to not listen to my body and try to do too much. I compete with myself and push myself to the point where my health ends up suffering. What I want to do this time is to try a little common sense and get my husband involved as I guarantee that he will stop me going too far.

As, more often than not, I am too ill to manage to get out of bed, let alone the flat, I am going to have to make some adjustments. I think the best way of doing this is going to be by using pacing. Most of my friends who are living with chronic health conditions will know at least a little about pacing. For those who don't, this is how it was explained to me:

• Open up a spreadsheet (or paper record) for each 'activity' that you do, such as walking, standing, sitting, lying down, showering etc. 
• Aim to keep records for at least a week, longer if possible. Make sure that you have included both your best and your worst days; this is important in establishing a true & correct baseline. You should record how long you can do each activity for, making sure that you stop before it becomes uncomfortable. 
• Once you have your record, you should add each individual task's times up then divide by the number of times you performed that task in order to get an average. 
• When you have the average, you will need to halve that figure. That is your guideline. 

Once you have the average, you've got your guideline. That is what you should aim to stick to, at least for the first week. The point of pacing is to try and help you manage a long-term condition and to improve your current abilities. Once you have your guidelines and tested them out to make sure that they work even on your worst days, then you can start to build them up. It is up to you how you choose to do that, whether it's a minute at a time or ten minutes. What I would say is don't try to build up too quickly and make sure that you include rest and relaxation into your day. That's something I have done in the past and regretted it.

This is a really basic description and before you try pacing, I would suggest talking to your medical practitioner team, whether that is your GP, your consultant or your physio. Pacing really can make a positive difference if you do it correctly. From my point of view the most important thing is making sure you include sufficient rest and relaxation. The reason I think it is particularly important is because I have failed to do that on more than one occasion and ended up making myself worse than when I started. That is a very real risk with M.E. as well as fibromyalgia, Lupus, CRPS and a number of other chronic health conditions.

So my first task over the next fortnight is to establish my baselines and find a decent Yoga or Tai Chi game for the Wii or XBox or a DVD. In the past my baselines have been as low as a minute. It doesn't matter where I start out, it's the fact that I do that counts. 

Mobility issues, exercise and weight

I was finally well enough to return to Weight Watchers last night at the Our Lady of Lourdes Catholic Church in Kingswinford. The meeting I go to is run by a lovely lady who understands the problems I face as a wheelchair user whose medical conditions result in extreme levels of fatigue and high levels of medication. Jane has given me some really useful suggestions over time and although she works for Weight Watchers, her focus has never solely been about losing weight. She has, for as long as I've been going there (quite a while), also focused on health, the benefits of eating healthily and exercising.

A few months back I switched medication and this has had the effect of making me feel even more fatigued than usual. By fatigue I don't mean tired; fatigue is something different and far more extreme than being tired is. For me fatigue is present in my muscles, making it difficult at times to so much as raise my arms a few inches. This often feels very similar to lactic acid, sort of burning and as though someone has sucked all the energy out. In addition, I get very mentally fatigued and can't think; this presents as the well-known by fibromites, brain-fog. You'll be lucky to get a word you recognise out of me at times!

Still, that doesn't mean that I can't eat healthily and do a little exercise, in my own way. Or does it? Well, yes and no. There are times when I struggle to swallow most types of food. At these times I can only manage small amounts of either soup or very soft foods, such as mashed potato. Although I often feel nauseous at these times, I rarely vomit. That does mean that at times I struggle to eat the right nutrients; given that I have fibromyalgia it is particularly important that I get those nutrients.

The lack of mobility, which includes that I am often bed-bound, does mean that exercise is difficult. It doesn't mean that it is impossible. Exercise takes all forms and can be tailored to suit just about everyone. For my brother, a bike-ride could be his exercise, for my husband - before he was injured - a long-distance training run, a couple of hundred sit-ups and the same in press-ups was not unheard of. In my case, there are days when - from my position lying down - raising my hands a few inches off the bed and repeating this a set number of times may be all I can manage for that day. Still, it is movement and movement is something that we should all be aiming for. I know that some people with mobility issues find that their caregiver worries about them exercising, so I would like to include a link to this article, as I think it makes some very good and useful points.

Of course, the lack of mobility does mean that I am perhaps more prone to weight gain than I was back in my able-bodied days. I can't deny that recently tic-tacs have formed a big part of my diet (appalling, I know); this has been because my medication leads to excessively dry-mouth and sucking a small sweet helps to relieve that. I do need to find an alternative that isn't quite so full of refined sugars. Eating the right foods is becoming more and more important as my health continues to deteriorate and I get older. I'm into my 40s now and I don't want to continue gaining weight. I want to be heading in the opposite direction and aiming for a healthier weight. Let's face it, if my backside gets much bigger I'm going to get wedged in my wheelchair!

At the moment one of my big inspirations is someone I grew up, who I knew from the age of two. She has lost four and a half stone, and is looking amazing. I am not going to put any pictures of her up, as I don't have her permission, but I am sending her the link to this to let her know that I am so proud of her and that she has inspired me. I wish her luck on the rest of her journey and will hopefully see her at Motley Crue's gig in Birmingham later this year.

Okay, I admit to being lazy and needing a good push in the right direction

Actually made it to Weight Watchers for the second week in a row, which is fairly unusual for me as for quite a while now I have generally only been well enough to go once every four or five weeks. I am definitely not complaining as I actually lost two pound this week. I am not thinking about how many more pounds I need to lose, just concentrating on trying to eat sensibly using home made food prepared by my Chef (aka my husband, Pete). I do like that Jane, our Weight Watchers Leader has such a strong focus on freshly prepared food and has done since before Weight Watchers jumped on her band wagon. She has also had a focus on moving more and exercise for a long, long time and does encourage people no matter what their circumstances. This is not an advertisement for Weight Watchers, more like praise where it is due for a lady who had the right idea long before anyone official came out and agreed. 

I think that for me the only way I actually lose weight is to really have a lot of structure. That means planning meals for the week, including snacks if possible and making sure that I stick with that plan. Admittedly an A1 sized flip chart sheet sitting in the living room is hard to miss, but even with it being on full view, there is the option of ignoring it. However I know that if I ignoring it my arse is gradually going to get bigger and bigger until I actually become wedged in a doorway and someone has to call the fire brigade to rescue me. Not really the image I want to leave a load of firemen with!

I do have a tendency to be the same with everything. It really is not only the food planning and weight loss that ends up being last minute and guesswork. It is certainly something that I have found myself doing time and time again when it comes to essays and studying. Yet get me on a subject I am truly interested in and I will do well; for example the OU's now defunct course "AA310: Film and Television History" was the best course I have ever done with them. I actually enjoyed doing research and writing essays. I found the subject fascinating, particularly my last essay where I discussed feminism in Joss Whedon's series 'Firefly'. Sounds odd, I know, but there is already some interesting research and academic writing on the subject in general and Joss Whedon's many TV series in particular. I ended up gaining a distinction on that course and came very close to getting a First Class Honours degree because of the renewed interest that course inspired in studying. 

Unfortunately the interest in studying is rapidly on the decline right now. I get interested in my current course for about five minutes, then realise that I do actually find the tutor mildly irritating and the course rather bleurgh. I think that once this current degree is completed, my second with the Open University, that will be it with that particular institution. They are moving away from the freedom of choice that made the University an attractive alternative and becoming much more like a traditional University. Yet many of those 'traditional' institutions seem to be moving more in the direction of some truly inspiring distance learning courses. All good things come to an end, I guess.