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. 

"Does it count if you exercise one leg?"

I know that this is perhaps one of the strangest questions I have ever asked, but it is what came out of my mouth this morning. There is a reasonable explanation for asking this question, so just bare with me a little. Among my health issues I have Hypermobility syndrome, which sounds more fun than it is. It always conjures up images of people folding themselves into tiny boxes or bending into strange shapes; fun stuff that you might see in a modern day circus.

The vast majority of people who have hypermobility are unlikely to have any adverse side effects. Then there are those whose joints have a tendency to dislocate. I fall in the middle; I do have hip and shoulder subluxation on the left hand side, but it isn't something that happens all the time. This week, just to piss me off, both joints tried to make a break for freedom. They failed, but that doesn't mean I'm not in a lot of pain.

You have probably seen people with hypermobility syndrome on television or among your friends, maybe you have it. Many people can go through life without ever having a diagnosis because they never have cause to visit a physiotherapist or to say to their doctor "Hey, look how far back I can bend my fingers/knees/elbow etc". By the way, if you talk to your doctor like that I am going to worry about you a little.

The one part of my body that I definitely do not have hypermobility in is my elbows. Wrists, fingers, knees, hips, ankles, toes (yes, weird) and my lower spine all have hypermobility and bend in strange ways. I am more conscious of it now that I am hitting my 40s than I was in my 20s; back then I would have joints in strange positions without realising I had, until someone commented. Well, I say commented, it was often more like a half-yell followed by "Oh, God, why is your thumb on the back of your hand like that? That's gross" (thanks for that, thinks I). When I say on the back of my hand, I don't mean that my thumb is growing out of the back of my hand (that would be weird), what I mean is this (photo).






I did used to bend my thumb further around the back of my hand without realising I had, but like I said, I try to be more careful these days so have only moved it a little. Even so, I still get told off when I inadvertently do that. It's far less entertaining and exciting than someone standing on their own head (I wonder if they worry about foot odor when they do that?)



Anyway, while I was lying in bed in the early hours I had the great idea of at least exercising one leg by doing leg raises. Okay, yes, if I was a healthy person it may be classed as cheating to use a resistance band to assist a little, but I'm not a healthy person and I need the extra help. I could only do this using my right leg and could not hold the resistance band with my left hand because of my shoulder so, again, just used my right hand. I did sets of side and front leg lifts and did a little triceps work on my right arm, no resistance other than gravity.

I took my time and did the movement very slowly, which adds to the exercise, and also spaced things out. It may not sound an awful lot to many people and back before the pain conditions crept up on me I would have thought the same. Nowadays though, trust me when I say that even that small amount of exercise caused an increase in pain that made me feel quite sick for a while. Despite that I am pleased that I did it. I miss being able to weight train, which I always loved, but something is always better than nothing.

Evil puppeteers jerking me around

Seeing the dawn from the wrong side once again, I am reaching the point where I just don't quite know how to get my body working well enough to sleep when I am supposed to. As a life-long insomniac I have tried just about every trick in the book, from drinking warm milk and avoiding television or the internet for an hour before bed, to listening to hypnosis tapes designed to help people sleep.

Unusually for me it isn't the pain that has been keeping me awake. It is the muscular jerking that is putting paid to nice relaxing sleep and pleasant dreams - if you can count being a kick-ass, sword wielding zombie killer in your dreams as pleasant. The muscular jerking first raised its ugly head a couple of years ago, just very occasionally at first, then increasing more and more.

It is kind of hard to describe to anyone who hasn't experienced something similar, but I am going to try. Does it make sense if I say that it feels like an electric shock suddenly shooting down from my elbow, zipping down my arm, through my hand and into my fingers? It hits my hand like a hammer, jerking my hand up and open or slamming it down onto the bed or the keyboard that I can't use. Things have started to be thrown across the room not by a poltergeist but by the evil puppeteer who is controlling my movements.

My GP did say to me that muscular jerking is rare with gabapentin, that it is more usual for it to stop as a result of the medication. I appear to have gone with my usual trick of doing the opposite - something a little childish that I normally relish!

As the medication change hasn't done the trick, I am going to try something else. I am going to try a combination of using a TENS machine on my arms to see if that helps and - not at the same time - I am going to try using light weights and just doing some bicep curls and maybe a little triceps work. I am going to be sensible and try not to get competitive with myself. I need to try something, but also go about this intelligently. If anyone sees me putting anything online anywhere that makes it looks like I am being an idiot about things, please deal me a verbal slap to get me back under control!

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!

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!

Pain = millions of lost working days = isolated people

Pain conditions are hard enough for those living with them to understand, let alone those fortunate enough to neither have a pain condition themselves nor to be living with someone who has one. Government statistics from 2013 show that approximately 15 million people in England alone are living with a long-term health condition. Many of those people will be experiencing pain of some description; in fact, several years ago the British Pain Society estimated that 10 million people across Britain were living with pain. If we choose to look at that purely from a financial point of view this means that millions of working days each year in Britain are lost due to pain. That alone should be cause enough for pain to be openly discussed, yet it remains one of the most taboo health issues around.




There are a huge variety of reasons that someone may be suffering from pain, ranging from an acute form such as a sprain or broken bone which will be fully healed in a matter of weeks through to chronic forms which may remain for the rest of a person's life. People may experience regular flare-ups of pain every four to six weeks due to painful periods, for example, or have neuropathic pain which is present all the time. It is individual and will vary person to person, even where the cause is the same. The only real way of knowing just how someone's life is impacted by pain is to talk to them about it. Yet here in Britain we tend to shy away from actually discussing such matters. Oh, we will casually ask if someone is alright, but what most people really want to hear in response is "I'm fine, how are you?" There is often some rather obvious discomfort if a person living with a pain condition answers truthfully and begins to enthusiastically discuss their pain.




Possibly because we have so many wonderful medical treatments around now - thank goodness - it is often assumed that pain can be completely controlled by medication. People can be forgiven for believing that someone living with pain is guilty of exaggeration, because surely with all the medication available nowadays, pain can be controlled?


The sad truth of the matter is that many pain patients continue to suffer awful and debilitating levels of pain, some of which remains a mystery to doctors. For people like me who have a combination of several different pain conditions and take a variety of medication, the pain remains a very frustrating symptom.


So why is talking about pain such a taboo?


In all honesty that is a question that I cannot answer without a serious amount of research. I suspect though that there is an element of embarrassment there, a feeling of not knowing whether or not people are 'supposed' to ask personal questions about an individual's pain and perhaps plain discomfort at seeing someone else in pain. Certainly I know that my mom hates to see me in pain, as does my husband who is my full-time carer. His way of dealing with it is to be as proactive as possible by doing things such as learning to administer IM injections of pain reliever for those times when the pain become really unbearable, which has definitely made a big difference.


I would like to talk to someone else though; not just about the pain and how it impacts on my life, but also just about the world as a whole. That would be pretty spiffy actually, if someone came to visit me and just chatted.


Does anyone have any other ideas why pain is such a taboo discussion topic?

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.