Insomnia and riser chairs

                         Once again I have had another night without sleep; it shows.

I promise you that I did try to smile, it just didn't quite work out as my mouth refused to co-operate.

As those who know me well can guess from this photograph, I was not able to make the trek the thirty feet or so from the living room to the bed room. Despite the amazing riser chair that a friend of my mom's kindly gave me for free, my body refused to co-operate with the planned long-distance hike. I have spent the night playing with the chair control going from almost horizontal to almost vertical. While this was great fun, it didn't really accomplish much other than make me giggle. 


Yes, I have a lot of medical issues that have a big impact on my life, but here is one thing that can kick your butt whether you are healthy or, like me, have conditions such as fibromyalgia, ME/CFS, Lupus etc: Insomnia. Okay, yes, it is going to have a far worse impact on someone like me who already has severe fatigue to deal with, but it isn't pleasant for anyone. 

It is difficult to get accurate figures on just how widespread insomnia is, though a recent survey by Dreams found that almost one third of the over 15,000 respondents said that they never woke feeling refreshed. Almost two thirds felt that they weren't getting enough sleep. That is a heck of a lot of people waking up feeling tired. 

There are things that various sleep researchers over the years have suggested, for example: 

• Keep the bedroom for sleeping and sex - remove the tv and keep the computer out of the room. 
• Do something relaxing prior to sleep - so that means no horror movies likely to haunt your dreams, folks. 
• Lights are best kept off as your body responds to the dark by producing melatonin to stimulate the pineal gland and send you off to night-night land. 
• Don't eat or drink anything stimulating for several hours prior to bed - that means caffeine is out for all those coffee lovers out there. 

The list goes on and lets be honest, most of us who really suffer from insomnia have tried all the things on the list desperately hoping that this time they will finally work for us. So far I'm on the losing team, but I'm hoping that some or all of the helpful ideas that sleep specialists mention have worked for some of my friends out there is cyber-world. I am spending an increasing amount of time meditating, not aimed particularly at helping me sleep, but you never know; it could be a nice side effect. 

In the here and now, I just hope that you managed to get a decent night's sleep and are ready to have a good Sunday. I am going to head back to Duolingo and see if I can mess up some more German phrases because my talk to type programme doesn't understand how to spell some of the more interesting words. Have fun - and for my fellow insomniacs, I wish you a good day with people who understand you are feeling tetchy and know not to do anything likely to incur your wrath. 

Is this the world's strangest motivation to exercise?

This is going to sound a little odd, so bare with me, I promise I will explain myself. As anyone who has known me for a while can testify, I am terrified of spiders. I don't mean that I shriek like a baby and squash the poor little arachnid, I mean I scream loud enough to wake the dead. Since I am fairly certain that none of us want zombies walking the earth, I would like to request that all spiders remain outside and do not enter my home.

Unfortunately at 4:00 am this morning, one particular spider decided that it did not want to stick with this restriction. My husband and I were sitting in the living room on the sofa, as lying down was - and is - causing quite a lot of pain around my rib cage. I glanced down at the floor, impersonated a boiling kettle and attempted to exit the room vertically, via the ceiling. It would appear that although me shoving the pouffe across the floor as I attempted to move my legs did cause the invader to pause momentarily, but it soon resumed the attack.

I promise that I am not exaggerating; it was the size of the palm of my hand. I am including the legs in that size estimation as, to me, they are the worst part of the spider. There is a strong possibility that the spiders do have a 'terrify her to death' contract out on me. There have been times in the past when it should not have been possible for any spider to confront me, but... Some eighteen years ago I was walking across a car park in West Bromwich with my mom after checking out a wedding dress shop - in the days before I got my wheels.The rain was torrential; I mean it was so strong that it was bouncing a good three inches off the floor when it hit. We were around a third of the way across the car park when something made me look down; a huge spider was sitting on the car park, in this terrible rain, giving me the evil eye. It is no exaggeration to say that I was both petrified and astounded to see this hairy-legged critter there.

Believe it or not, I am actually a lot better than I used to be. I once missed college because I couldn't get up the stairs to get showered or dressed, I have called friends round to dispose of them and once refused to sleep in my bedroom for several weeks because my dad had squashed a spider on the ceiling. To be fair that had left a spider-gut stain that I just couldn't cope with. I slept in one of the spare bedrooms until dad had disinfected and re-painted the ceiling. Yes, I am full-on phobic rather than a wee bit unnerved by them.

Yet there is something I am more afraid of than spiders; daddy long-legs (crane flies). Those things have lead to some far more dramatic room exits than the spiders. I once ran out of a meeting with senior managers at the DWP, back when I worked there, because a crane fly was dangly-legging its way round the room. Someone did eventually take pity and remove it, but not before everyone had laughed themselves silly.

Oddly this does have something to do with exercise and mobility. As you have probably guessed, it is a little difficult to scream like a siren and run out of the room when you can barely move. Add to that, I am certainly not sitting in my wheelchair all day, as my butt tends to go numb after a while. So, seeing that huge, monstrous beastie has given me motivation to carry on with my physio exercises in the hope that mobility will improve somewhat. 

I am continuing to be very careful about what I do and making sure that I don't go overboard with the physio. I will be honest and confess that I haven't yet started my yoga as I can't find the DVD. Yes, I know, bit of a lame excuse really as there are, no doubt, hundreds of low impact yoga videos on the internet. I do want to be careful though, hence the desire to stick with the DVD that JJ - the physio at my GP practice - recommended.

I hope that you are getting on with whatever challenges have cropped up in your life lately - and more than that - I hope that you are coping better with your fears than I am with my arachnophobia.

Does anyone else get competitive with themselves?

A serious question; does anyone else get competitive with themselves? I mean stupidly so, to the point where you actually put yourself into a negative situation in some way. I do. I am honest enough to admit that. I do get competitive with other people, although I don't tell them, but it is when I get competitive with myself that I end up getting in trouble. What can I say? I am my father's daughter and I have his competitive nature.

Me and my dad

That was okay, to a degree, when I was healthy. I used to enjoy weight-training and bought myself a multi-gym when I was 16; it was great fun and I really enjoyed the competitiveness. The fact that I could see progress in the amount of weight I was using and the number of sets, as well as definition. Yes, I know, looking at me now it's hard to believe, but I did have pretty good biceps, triceps, quads and calves in particular. Leg work was always my favourite.

So when I had a Wii back in 2007, coinciding with an improvement in my health conditions, I did the same as I always had. I got competitive with myself. The game records all your stats so you know how much you are doing each day and whether you have improved. I started off quite sensibly doing five minutes of yoga a day. Now that may not sound a lot to a healthy person, but believe me when you have health conditions with pain and fatigue as two of the main symptoms, it is an awful lot.

The best I had been for over three years; I managed a boat ride and sitting on the beach.

My competitive problem reared its head a couple of weeks down the line, when I started to increase the amount I was doing. Now that is something that pacing suggests, that you gradually increase the amount you are doing. The key word in that sentence is 'gradually'. I got carried away. At one point I was up to an hour a day yoga and cardio. I didn't go beyond that, but even though that was spread out through the day in five or ten minute sessions, it was far, far too much for someone whose fibromyalgia and M.E. are as severe as mine. 

The result was that I crashed. I ended up being stuck in bed not for days, or weeks, but for months, with only brief periods of being able to get out of bed. This was particularly frustrating because I had started studying with the Open University again in February 2007. Even with that, despite taking the exam at home, I attempted to type it. I almost passed out while I was doing the final essay because I was in so much pain. The sweat was  pouring off me and my invigilator was all for calling a doctor out. I called time on the final essay, leaving it part done - another frustration - and that was the point when I crashed.

My graduation in November 2013

I can't even say that I learned my lesson, because I didn't. I started volunteering as a tutor with the Expert Patient Programme course in 2008. Rather than doing the requested two courses a year, I did back to back courses. Okay, yes, it is only two and a half hours a week. But for me, that was (and is) a lot. By the time I finished the session I was in so much pain and so fatigued that I would spend the following six days stuck in bed before I got up and repeated my mistakes. I volunteered for every training course, award event and promotion event that I could. You would I would learn at some point, but no, I didn't.
.

The Mayor of Dudley, with myself & Ann Tee, there as representatives of the EPP volunteer tutors

The reason I am telling you all this is because by being honest I am hoping that I can learn from my past mistakes and begin to gradually improve. I am not expecting miracles, I am simply going to take baby-steps and be thankful for any small improvement that I may have. I have spent most of the last year in bed and my hope is to improve enough so that I will be able to to out of bed every day. That is my first goal and I am not going to get too competitive with myself. If anyone suspects that I am getting too competitive, please feel free to tell me off!

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. 

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.