Weather plus a cold equals fibro hell and a postponed trip

I was supposed to have travelled to Wales last week for a fortnight's respite. Unfortunately my immune system decided against that and instead decided that a cold would be a really fun thing to have. I would rather have had my trip to Wales. Still, I do believe that things happen for a reason and in this case perhaps the reason was that it has barely stopped raining all week, according to my mom, who has been about 15 miles away from where I go, since Wednesday.

Because I wasn't in Wales I could, in theory, have gone to Weight Watchers on Wednesday instead. I say 'in theory' because what happened was that I slept all day. As you may already know, one of the primary symptoms of fibromyalgia is fatigue. The cold has made things worse; I haven't had the strength or energy to wash my hair, meaning it feels disgusting. Greasy hair is my pet hate, so the very first thing I am going to do the moment I have enough energy is to wash my hair.

My hair, currently blue, is one of my 'things'. We all have things that we insist has to be okay before we leave the house and for me, it is my hair. That tells you straight away that I haven't been out of the flat all week. The main reason for this (apart from my hair!) is that I don't have the energy to get down the stairs let alone back up them.

However, as I've said before, just because I have struggled to get out of bed, even with assistance, it doesn't mean that I can't do movement of some description. This week, movement has consisted of very gently using my resistance band to help raise each leg off the bed in repetitions of five. I am then repeating that later in the day. I am using a combination of thigh, stomach and arm muscles to do that. Believe me that while I am aware that doesn't sound like a lot - and for most people it wouldn't me - but for me, it is. Energy-wise even just that amount of movement feels as though someone has stuck a needle in me and sucked all the energy out. My muscles are drained like flat batteries!

So, that is as much as I have been up to this week, apart from entering competitions on the internet which, unfortunately for me, doesn't count as exercise. I hope that it has been a better week for you this week, despite the weather.

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.

Memory, distortion and a fantastic childhood experience...

Pete and I were talking about memories last night and how our perceptions of events can change over time. We have a couple of very obvious examples where extended family members tell people that they did something that they could not possibly have done, due to age or other factors. I am sure that a lot of other people can think of similar examples too, either friends or family members that tell the world that they did something selfless or had a worse upbringing than they did and so on and so forth. 

I did a course a while back, called Understanding Global Heritage, through Open University where memory and the effects of time were discussed as part of one of the units. I found the concept of memory distortion (article on memory distortion) particularly interesting, especially as it is something I have witnessed first hand. I have kept a diary  - on and off - for years and tend to make quite long, detailed entries for significant events. One particular conversation with an individual was something I had found extremely distressing at the time and so had written down everything the person had told me. In great detail. Several years later we were discussing the events in general terms and I raised the particulars that the person had told me. They insisted that they had never told me, that these events had, in fact, never happened and that I was obviously making this up. At the time I was both shocked and confused. I started to doubt my own recollection of the conversation, until I re-read my diary. Now, no doubt I had my own perceptions of the conversation at the time and these formed part of the diary entry, but the conversation and events in question did most definitely happen. I was actually quite worried about the person in question until I read through the module unit and did some research of my own into the subject. I still worry a little because of the actual events, but a lot less than I did initially. 

It also made me think about the events that have taken place in my own life, things that I remember (or how I remember them) and stories that I have been told by people who are no longer around. I do not want those stories to be lost; I want there to be a record of them somewhere real, not just online but something tangible. I have decided that I am going to buy a nice, good quality, attractive note book and start writing down all those events that I can remember, all the stories I have been told, so that there is a record of them. Even if the only person who ever reads it is me, at least I will remember the events the way that I remember them now and not further distorted by time and place. 

One of the greatest sets of childhood memories that I have is of growing up spending almost all of every school holiday in Wales on a farm in Pembrokeshire - or Dyfed as it was when I was very little. To have grown up being able to collect eggs every morning, to help feed the calves buckets of milk, help herd the cattle, go to the cattle market with the farmer and his wife, pick fruit and veg, ride on a tractor and oh, so much more! I had the greatest time imaginable when I was a kid and I have to say that I am so glad that I had the opportunities that I did. I would not have traded my time on the farm, which I still go to by the way, for anything. While friends would maybe go off for two weeks in over-crowded Spain, with 'organised fun' (I cannot think of anything worse) I got to explore a fantastic farm and have a truly amazing childhood. I want each of those memories to stay as fresh and true as I can make them. Although I wish I had written some of them down sooner, I think that I am going to have a great deal of fun remembering and getting them down on paper now.