Health and hope of improvement

I know that this often sounds a little strange to people, but I promise you I am telling the truth; my health improves quite a lot when I am particular environments. At home my various medical conditions mean that I spend a great deal of the time in pain or experiencing extreme fatigue. I also have sensitivities that mean bright light, loud noises, repetitive noises and noises of particular pitches, certain scents or chemicals result in physical pain. The scents and chemicals part also mean that my skin starts of with a burning sensation, then goes red and will either blister or swell.

I go away to Wales, where I am out in the countryside and away from many of those triggers and I find that far from being forced to spend 80% of my time bed-bound, which is what happens at home, I can be in the living room looking out over the fields. There is a very good chance that I will be able to sit outside, still with dark glasses on, but I won't end up having to spend the next week recuperating just for sitting outside. I may even be able to go to the beach; several of the beaches in Pembrokshire have beach-wheelchairs, which have enormous tyres so that they don't sink in the sand.

One thing that I know I thought when I first became ill was that I didn't realise just how difficult things are for people with disabilities in this country. A lot of businesses just don't think about accessibility because the person in charge often doesn't have a disability themselves, or immediate relatives with disabilities. Current legislation does require them to ensure that their business is accessible to ever member of the public, if indeed it is a business that deals with the public. Reasonable adjustment is what it is known as in the legislation.

Now obviously a 12th century castle isn't going to have lifts inside and it would be difficult to do so; asking them to do so would not be a reasonable adjustment. The shops down in Kingswinford with large steps up into the shop should all, however, have a portable ramp so that wheelchair users can access the shop. The only place I have seen that has gone one step further and altered the entrance so that there is a built-in ramp is the Tenovus charity shop.

Pembrokeshire, which is where I go for my particular brand of respite, has worked hard over the past few years to ensure that all parts of the county are accessible to everyone. Even the coastal path, which is around 185 miles in total, has been made as accessible as possible. Not that I can self-propel anyway, but it is nice to hear that one county is taking its responsibilities to all of its residents and visitors seriously.

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.