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. 

Interesting appointment

I had an interesting week last week, following my visit to the GP a couple of weeks ago. He referred me back to Neurology because the hypersensitivity and muscular jerking have become worse over the past year or two. Although there is some jerking on the left, it is much worse on the right, which is where the hypersensitivity seems to be confined to.

Last time I saw the Neurologist was a couple of years ago, when I had MRI scans and was referred to a Speech Therapist. As nothing significant showed up in any of the tests that were done, things were left there, which is exactly what should have happened. There were two relatively minor things that showed up tests. The first was elevated levels on the ESR test. This is a non-specific indicator of inflammation, that has been consistently high for the past eleven years at least. It is a lot lower than it was back then, which I count as a good thing. The second was a minor blip in the right-hand cerebral cortex. Nothing particularly significant at all. I have had blips show up in CT and/or MRI scans in the past that have later vanished. I did get to see what my brain looks like on an MRI scan though, something which I found fascinating.




Given that things have gotten worse, the neurologist wants to double-check things and see whether there is anything obvious going on. I was meant to have an MRI scan on Monday, but due to a voice-stealing cold I wasn't well enough to go, so have an appointment on Friday instead. He also mentioned nerve conductivity tests on all limbs, which I am not keen on as a lot of the time even the lightest touch on my skin is painful. He's suggested a couple of other tests and asked me if I wanted to try some physio, but was cautious because of my pain levels.

I figure that I am confident enough to tell a physio if they try to push too hard, so I told my neurologist that I was gobby enough to deal with an over-enthusiastic physio and that I would try anything that may help. With any luck the next twelve months will see an improvement.

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.