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. 

The death of Motley Crue

It has been an interesting week or two. When I returned to home after respite I was wiped out for a while; I spent almost all my time either sleeping or trying to find a position to either sit or lie in that didn't make me want to scream in pain. Then the pain decided to jump to another level altogether. Just to be really annoying, it jumped on the night I went to see Motley Crue and Alice Cooper at the Genting Arena, Birmingham.

Alice Cooper

Now, much as I love live music, my health issues make it very difficult for me to actually see any. Looking at my old tickets,  it appears that it has been four years since I last saw a live gig. Because I know that I am going to have after effects of a night out, I tend to make sure that it is a band that features in my top few. Alice Cooper has always been among my favourite musicians.




In fact, it was was a far better gig than the previous couple of times that I had seen him. Over the past twenty-five years I have seen Alice Cooper on numerous occasions, with a variety of musicians on stage and although he is always good this gig was one of the best I have been to.

Alice Cooper's band

I want to say that the staff at the Genting Arena are really well trained in dealing with customers with additional needs. The wheelchair section overlooks the standing area and, as you can see from the photos, has a great view of the stage. My photos were nowhere near as good as they were last time I went to a gig, but I had fun making memories of what was a fantastic night.

Nikki Sixx

 Motley Crue, on their last ever tour, were more amazing than ever. They have been fantastic every time I have seen them, but this time, wow. The energy in the arena was incredible and both Nikki Sixx (bass) and Vince Neil (vocals) seemed to be bouncing around like teenagers. Mick Mars (guitar) is not only a great guitarist, but a man that I admire for the way he deals with his own health issues. Having been diagnosed with ankylosing spondylitis as a teenager, an inflammatory form of arthritis, his spine has gradually seized and along with scoliosis, has further reduced his mobility. Despite the pain that he must have been in, he gave a great performance. As someone with health issues of my own, I know that our health does not define who we are and what we do with our lives, but it does affect our choices. For me, seeing someone with chronic pain performing in one of the most successful bands of their generation - and a generation or two after - is both fantastic and important. It reiterates that just because we have health conditions, we are still able to make the choices to live our lives our way.

Tommy Lee's drum-coaster

Tommy Lee and Vince Neil

There is never going to be a drum solo quite like Tommy Lee's drum-coaster. That was a seriously amazing spectacle; a drum solo where the drummer moves along a 'coaster and the drum platform spins upside down... I mean, I've seen some dramatic drum solos from Tommy Lee before, but this time it was something that is I cannot imagine anyone ever topping.




All in all, I really couldn't have imagined a better last gig from a band that has been around for such a large part of my life. It was emotional at the end of the gig; that final realisation that this was the last time that I would see a band who have always been so fantastic.

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.

Back, medicated and choosing to smile

First thing: I'm sorry about vanishing again. I want to explain why, but I don't want to sound as though I an whining. I promise you that I am not.

My health decided that it was about time I was reminded just how bad the pain was when I first became ill. I actually have several chronic pain conditions, one or two of which flare up every now and again but usually stay around mid-range. My worst condition(s), fibromyalgia and pain amplification syndrome, hover high up on the pain chart. All conditions decided to hit me at once with their worst efforts. I am very grateful that I have much better medication now than I did eleven years ago when the fibromyalgia decided to first make its presence felt. It was the worst pain I have felt for a long time, it did hit that 10 on my personal pain-scale. I am still embarrassed that I cried over it.

I will say that I am also very embarrassed about having to phone up my husband and ask him to come home to give me a pain relief injection while he was visiting his mom and taking her food shopping. It is also something that I am very grateful he asked to be taught how to give the injections, as the very busy emergency G.P. service takes several hours before a doctor attends. That is several hours where I am in agony and my husband gets to witness me in agony. Not pleasant for either of us. I swear like a navvy at the best of times, you really don't want to hear my language when I am in that much pain!

During the several hours it takes to get an out-of-hours doctor to visit we first have to telephone to request the visit; at that point the caller is questioned about why we need the service. They almost always ask to speak to me; not an easy task as I have some speech problems and I'm usually struggling not to scream with pain at that point. The calls and questions usually take place over one to two hours, sometimes longer. After the initial call from us, we then receive a call back from a nurse, who asks the same questions again. Finally we receive a call from the doctor who not only asks the same questions for a third time, but also told me - the last time I used the service - that I had called too often (two to three times a year) and they would no longer attend. He told me that I would have to go to the hospital in future.

While I appreciate that they are extremely busy and it must be frustrating for them that they had to attend my home more than once a year, I am bed-bound a great deal of the time. If I wasn't then I would have attended the walk-in out of hours clinic located near to/at the hospital and wouldn't have telephoned them in the first place. If I cannot stand up, then it is pretty much impossible for me to get out of bed, get dressed, walk down the stairs, to the car and so on. I felt very stuck and very angry when they first told me this. I was especially angry that the doctor who attended was not well versed in giving injections. This was something I discussed with the NHS and several doctors and nurses that I know and I am aware of the reason behind a number of out-of-hours doctors being poor at giving injections. It is also one of the reasons that I am very grateful that my husband was taught how to give IM injections.

It is frustrating for medical professionals not to be able to cure their patients. It is a damn site more frustrating to be the patient that cannot be cured. How you handle things though, is your choice. Our emotions are affected by body chemistry, circumstance, our life and life-style, but I strongly believe that there is an element of choice in there. I choose not to be a miserable, moaning and angry individual over my health. What would be the point? The person I am most going to upset if I react and behave like that is me. I can think of no good reason why I would want to make myself miserable and angry. We all have bad days, and we are allowed to. Forgive yourself for those bad days and keep moving forward with a  smile. One day we are all going to be able to kick our health issues - or other life issues - up the arse and throw them in the bin. I'm looking forward to that day and saving an evil cackle followed by a big smile for the occasion!

Exercise with FM

What do you class as 'exercise'?

I imagine that the term 'exercise' has a hugely different meaning for me than it does for most of my friends. When I was a child, it meant practising gymnastics, going horse riding, running round with my friends or whatever else I could come up with at the time. As a teenager that did change a little, although I kept up the gymnastics until my mid-teens as well as adding in scuba diving - although I will admit that part of the attraction there was the club bar where they were happy to serve me despite my age. As a healthy adult I was happy to go walking, but refused point blank to run as it was something that I had always hated.

Now exercise can mean as little as sitting on a chair with my feet flat on the floor and simply straightening my leg several times. Like the majority of my friends with either disabilities or disabling illnesses I have to be careful not to get carried away and do too much. I did that back in 2008 when I was apparently improving a little; I got excited that I could walk - without sticks - for up to half a mile. I pushed it too hard, got carried away and ended up spending months in bed; almost back to where I started out.

Because I spend a ridiculous amount of time unable to get out of bed I have had to alter my expectations of what exercise is and try to be realistic about what I can and cannot do. It is hard not to get carried away; I have a tendency to get excited and think that I can do far more than I can. I forget about the consequences of my actions and put myself in a position where I risk exercise having a seriously detrimental effect on my health.

I am trying to be good however. I am starting out with quite literally a couple of repetitions of movement and very, very slowly building on it with the hope that I will get some improvement, however small that may be.

One size does not fit every insomniac

One of the more annoying symptoms of fibromyalgia that I experience is insomnia. I know that to people who sleep properly and may occasionally experience a little bit of sleeplessness it may sound mild. It is not. Insomnia is a bitch of a symptom that wreaks havoc with your mind and body. 

How can I describe fibro in a way that those who do not have it can understand? I am honestly not sure, but I will try this: imagine having influenza all the time. Not "I've got a cold but I'm going to say it's flu" but real, full-blown influenza. The constant ache throughout your muscles and joints, feeling like your finger joints have swollen to twice their normal size despite there being no visible sign of this. Add onto that the frequent and dreaded 'fibro fog' where your brain simply decides to quit on you. Short term memory vanishes, while words you use everyday pack their bags and walk out the door. The aches throughout the body are not mild, although I suppose they are for some. For me it is constant pain that just varies in intensity from "Holy shit, that hurts" through to "Someone please shoot me now". 

In short there physically speaking, it is not a nice condition. There are a myriad of connected symptoms that vary from person to person and cannot be predicted. 

For most of us the fatigue is a pretty major symptom to begin with, so adding the insomnia into it can drag you from mildly tired and a wee bit irritable to destroying the world with a single word, should any poor soul be silly enough to speak to you. 

I have to say that having had only a couple of hours sleep, on top of the fatigue I already have, has actually left me too tired to be irritable. Or maybe I am just forgetting to be irritable. 

Normally if I am going through a bad insomnia phase I sit in the living room (my version of sitting it often somewhere in between sitting and lying down) and do something productive and different. I will list something on ebay or draw, write, anything that is different and more interesting than lying in bed. I think the worst thing that an insomniac can do is just lie there in bed; if I do that, all I do is end up thinking and getting irritable that I cannot sleep. On the other hand if I sit/lye in the living room and do something it takes my mind off the fact that I cannot sleep. I start to get sleepy - and have been known to fall asleep sitting up....

I have had long discussions with my GP about insomnia and neither of us are keen on the idea of additional medication - not after I have worked so hard to cut so many meds out. Between us we have come to the conclusion that it is not necessarily that the pain increases if I have not slept, but rather that my ability to cope with it decreases dramatically. 

So, after not sleeping well for a few days my body becomes even more sluggish than usual and my brain is not only slow, but also lowering my ability to cope with the pain I am in. Should I follow the advice of many OT's and not sleep during the day and hope against hope that results in me getting a good night's sleep? No thanks. Not for me, as I have been there and tried that. It really did not work for me, in fact it made things worse. I think everyone has to find their own coping technique, there cannot be a 'one technique fits all' approach from our support services. We are all individuals and deserve an individual approach to managing our symptoms, including insomnia. 

Lastly, I apologise if this sounds a little off in places, or if I have wandered off topic, but I have had around five hours sleep in the past three days. I am a little brain-weary right now.

New bathroom

Having the workmen in can be a stressful for anyone, for someone with a chronic condition it can have an enormous impact. 

We're having the bathroom done; with the guys due to arrive anywhere from eight thirty, it meant that I had to get up at 'healthy person' times. When I was healthy I often used to be in work for seven in the morning, then finish at three. Admittedly when I first started working, we were not allowed to actually enter the building or start until seven thirty, so I used to arrive and collapse on the sofa in the lobby and chat to Paul, the security guy. There were times that I would arrive straight from a night out, or still drunk from the night before. Paul always found it highly amusing. We used to have some good chats, though i wish he had not insisted on telling the senior management team that they should promote me while they were walking through the lobby after doing promotion interviews one day.....

That, however, is long in the past. Nowadays, while I can still be wide awake at three in the morning, getting out of bed is almost an Olympic event. It takes a great deal of time and effort, and I feel like I have been in training and preparation for ages for this week. They were due to arrive around eight thirty this morning, which meant that the alarm was going off at seven. It took me until seven forty-five to even sit up. I am not going to tell you how long it took me to shower and get into clothes, nor shall I mention how much assistance I required to do so. I am sure that my disabled friends can take a wild guess, while my able-bodied friends are left wondering what on earth I am talking about. 

Still, I was actually dressed and (in theory) awake by eight thirty. Actually, no, that is a lie. What I was at eight thirty was in a drugged (medicated) haze sitting on the bed wondering whether I should attempt to move or not. In the end the effort of getting out of bed, showered and dressed made the decision for me and I fell asleep again. Although I woke up at various point through the day I actually never even met the men who spent most of the day dismantling the bathroom. I have to say that they have worked extremely hard. The bath is gone, sink is out, there's new plasterboard up, tiles delivered and we actually have an extractor fan. 

They're here for the next two days; I think tomorrow they're doing the tiling and putting in the shower tray etc, then Wednesday it will be the shower itself and the 'disability' bit - the grab rails and shower seat. 

Now that part is fantastic and I'm really looking forward to having a new bathroom, but the next two days are going to be interesting. I have to admit that I am dreading getting up early in the morning, especially as I have a doctors appointment so will have to get to moms for a shower as early as possible before the doctors. Right now I'm thinking of cancelling the appointment as it's a case of balancing what I can manage and making sure that I do not overdo it.