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. 

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.

Living with chronic pain

My husband and I were talking to a friend recently about pain, what it is like to live with and how we cope with it.

Now looking briefly at my GP's letter to the DWP, I am diagnosed with fibromyalgia, CRPS, unusual forms of migraine that affect one side of the body and endometriosis - as far as pain conditions go. My husband also has chronic pain from two collapsed vertebrae, which impact on the nerve going down his right arm and have caused damage, as well as a serious leg injury which is currently undergoing treatment. We know a little about living with pain. 

People who do not have pain will occasionally say things like "You get used to pain" or "After a while you start to not feel it so much". Both of these statements are completely inaccurate. You do not get used to pain, although you get used to being in pain. Those are completely different things. The pain is still there and you still feel it as much as you ever did, but you become so used to being in that much pain that when you have brief moments where it vanishes you are utterly surprised. Often you do not realise what has happened until that brief moment has passed and the pain is back.

Does living with chronic pain mean that you cannot be productive? 

Of course it does not! Many people are still able to live full and realtively normal lives while being in chronic pain. They may have to make some adjustments to the way they do things or use coping methods, but they are still able to work. They are still able to walk, to do their hobbies, socialise and generally live their lives. 

For some people, like me, the pain is more wide-spread and more serious. That does not mean that I am unable to enjoy life though, it just means that I have to do things differently to other people. I live in a combination of having to plan things ahead of time and being aware that even with long-standing plans I may have to cancel at the last minute because of the severity of pain I am experiencing. 

I spend most of my time bed bound. The pain is not my only problem, in fact for me it is not the worst problem. But it is one of the more significant reasons that I end up stuck in bed and not able to leave my home. There are some hobbies that have fallen by the wayside purely because I am no longer physically able to do them. But I have also picked up some hobbies that I had abandoned long ago, like my drawing. I also study, I write - for example - My 'zombie blog', though that is not the only writing I do (really it's just something silly to keep me entertained). I also have a try at different things, some of which I decide are not for me, but others I pick up and do on the odd occasion; I have a half knitted scarf sitting beside my as I type, I have a book on patchwork on the other side of me. I read a huge amount of fiction, largely sci-fi and horror because I like to escape. 

You do not have to be a brilliant artist to draw, you do not have to be a brilliant writer to write and you do not have to be the greatest singer in the world to sing. Whatever hobby you do that keeps you entertained is fantastic and who cares how good your are at it - the only person whose opinion matters is yours. If it is fun and you enjoy it, then do it. 

The point of bringing up my hobbies is this: when you live in constant, agonising pain you need a distraction. You cannot have people talking to you 24/7 because sometimes your brain will not work, or sometimes you will be so angry and frustrated at the pain that you cannot tolerate other people around you. They also may not want to be on the receiving end of your temper all the time, no matter how much they love you. Hobbies can be a wonderful distraction and they form part of our combination of methods of coping and managing the pain. 

Yes, I am medicated. I am on morphine patches, which give me a constant steady feed of drugs. I take a whole host of other medications, not all for pain. But I tell you what, distraction works almost better than the meds. 

Having people visit can be wonderful though and the best distraction/medicine going. They say that laughter is a wonderful medicine and I cannot disagree. Spending too much time alone can be dangerous for a pain patient. It gives our brains too much time to think on the negative things in our lives and we can end up becoming depressed, or worse. We need people around us, but we also need people to be patient and understand that living with chronic pain is difficult. It can make us forgetful, partially because of medication, and it can make us a bit short tempered and irritable. Keep talking to us for more than a few minutes though and I promise that not only will we have fun, you will also make more difference to the life of a chronic pain sufferer than you can ever understand

I would say that is it probably best to just drop a quick call or text first to make sure I am awake or there is a chance you will just be knocking and knocking with no answer. Of course, if I am on my own I will not actually be able to get to the door to answer it anyway - though I guess we could shout through the letter box! The bedroom is next to the front door, sort of, so that could work - see, I'm adaptable. Huh! I am pretty sure I read that it was the species and people that were able to adapt quickly that survived the last ice age. On that logic pain patients are the perfect survivors; there is no-one more adapatable than a pain patient who happens to be a good self-manager!