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.

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.

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!

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. 

Weather plus a cold equals fibro hell and a postponed trip

I was supposed to have travelled to Wales last week for a fortnight's respite. Unfortunately my immune system decided against that and instead decided that a cold would be a really fun thing to have. I would rather have had my trip to Wales. Still, I do believe that things happen for a reason and in this case perhaps the reason was that it has barely stopped raining all week, according to my mom, who has been about 15 miles away from where I go, since Wednesday.

Because I wasn't in Wales I could, in theory, have gone to Weight Watchers on Wednesday instead. I say 'in theory' because what happened was that I slept all day. As you may already know, one of the primary symptoms of fibromyalgia is fatigue. The cold has made things worse; I haven't had the strength or energy to wash my hair, meaning it feels disgusting. Greasy hair is my pet hate, so the very first thing I am going to do the moment I have enough energy is to wash my hair.

My hair, currently blue, is one of my 'things'. We all have things that we insist has to be okay before we leave the house and for me, it is my hair. That tells you straight away that I haven't been out of the flat all week. The main reason for this (apart from my hair!) is that I don't have the energy to get down the stairs let alone back up them.

However, as I've said before, just because I have struggled to get out of bed, even with assistance, it doesn't mean that I can't do movement of some description. This week, movement has consisted of very gently using my resistance band to help raise each leg off the bed in repetitions of five. I am then repeating that later in the day. I am using a combination of thigh, stomach and arm muscles to do that. Believe me that while I am aware that doesn't sound like a lot - and for most people it wouldn't me - but for me, it is. Energy-wise even just that amount of movement feels as though someone has stuck a needle in me and sucked all the energy out. My muscles are drained like flat batteries!

So, that is as much as I have been up to this week, apart from entering competitions on the internet which, unfortunately for me, doesn't count as exercise. I hope that it has been a better week for you this week, despite the weather.

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.

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.

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!

Mental Olympics

I have always struggled to maintain concentration on one subject. At school I could be sitting in a classroom and a passing cloud would completely capture me; I would have no clue what happened in the rest of the lesson because I had gone away into my own head, my own imagination. As an adult, I am forced to admit that nothing has changed. 

I cannot do one thing at a time. I quite literally cannot. My mind is in too many places, jumping over all the possibilities, all the entertaining things that there are; things that I could be doing. I have never, ever been able to read 'just' one book at a time. I have several on the go at any one moment and will jump in and out of them at random, switching from story to story. In between I will draw, or watch TV or talk or...the list is endless. 

I genuinely cannot say whether having fibromyalgia has changed this. If I try and think about it, try and focus for a minute, I think that nothing has changed that much. I still fit and have to be doing several different things at the same time. The only thing that really throws me is noise. I have never had much tolerance for noise - neither have my brother, or my mom - but now it is as though all noise blends into one. If there is background noise and you ask me a question, please do not expect an answer. All I will have heard is a random noise that will not have made much sense to me. A little like Charlie Brown's teacher where all you hear is "Wah, wah, wah, wah". 

Mind you, saying that I'm sitting here typing one thing while having a conversation with Pete about people murdering apple trees (cutting them down), so maybe it is not quite as bad as I sometimes think. 

Here's to being who I am, instead of who people think I should be

I have started to get back into sketching. I have done a little drawing now and again over the years, but the last time I picked up a pencil with serious intent was over twenty years ago. 

As I picked the pencil up and started sketching for the first time I have to admit that I was convinced my drawing would look like something a five year old had done. I was pleasantly surprised that it came out okay. I am never going to be the greatest artist in the world, I know that, but I do love to draw. 

When I was in my teens my love of heavy metal and rock music did influence my choice of subject matter. Well, that plus the fact that I really hate to draw 'nice' scenes. Rolling landscapes or close ups of flowers may interest other people, they may even be pretty to look at, but they really are not something that I have any interest in drawing. So, I draw portraits of rock stars and more than a couple of Iron Maiden's mascot - Eddie. Oddly enough I have attempted another drawing of Eddie amongst my new sketches. I wanted to see if I could still draw like that, if the years of not really drawing anything much had taken their toll and I had lost whatever abilities I had to begin with. I have not had time to upload my most recent attempt, so I thought I would upload an old drawing. I think this was from when I seventeen years old.

I had always had trouble with colour when I was young. I did do a monotone painting for my art exams at school, but I have to say that it was probably because I was pushed into it. I actually took my art folder in to my teacher (who sadly passed away far too young) to see what he thought. I was pleasantly surprised that he liked them. He asked me why I did not draw in the same style for my art classes. I still cannot find an answer to that one. If I was suddenly sent back in time, perhaps I would happily shock the rest of the art department and do things my way. 

Now that is exactly what I can do now. Not the shocking the art department  part, the doing things my way. I always felt under pressure to do things someone else's way, I felt that I had to try and fit in. Yet I found school impossibly awkward. I felt like I didn't understand what I was supposed to do, how I was supposed to fit in. I would often say, or do, things that were not what everyone else felt that I should do. I struggled to understand people's signals, you know? Body language and emotions just did not always compute with me. If there was something going on where I had to be in a group of people I felt out of place. I had no clue how to behave in a way that would make people 'like' me, though I did try. I always felt like I was trying to play a game that no-one had told me the rules to and I was struggling to play catch up all the time. 

Now it is a different story. Work gave me confidence that I had been lacking. Although it was a hellish place at times, it did give me that. I didn't always fit in there, but I had stopped caring. Now that I'm here, bed bound most of the time, house bound pretty much all the rest of the time, I can be who I am without fear or worry about anyone else. And I can draw exactly what I like. So as soon as I remember to photograph my new drawing I am going to upload it to show you all. In the mean time I hope you like my teenage attempt at Eddie.

I figured calling this blog simply Rebecca's World means that I can post about pretty much anything and everything that I want to. As I am disabled and housebound, my world perhaps is not as large as some other's, but I still find life and my world pretty interesting. 

I am not going to dwell on the reason I am disabled, other than to say that I have a condition called fibromyalgia, which affects every part of my body. I am in a lot of pain and sometimes that does get so out of control that my medication cannot help. At that moment in time the pain consumes my world, everything else phases out into a distant dream and I am transported to a place where there is nothing but pain and misery. It does not last, at least not for more than a few days at a time. Once it is over that world of pain is gone, difficult to remember the intensity of what I felt during that time. 

For most of the time I am at a controlled level of pain and able to do some of the things I have always loved. I read - excessively! My genre's of choice do tend to be horror, thrillers and science fiction; mostly in the form of that amazing man, Terry Pratchett. At the moment zombie novels do seem to feature rather heavily in my reading list, as do post-apocalyptic tales. Hopefully this is not a sign of things to come, but merely one of my obsessive reading phases. They do happen from time to time; actually, if I'm honest I am a little obsessive about things full stop. Back when I was still able to do the washing up (see, disability has to have some advantages and not washing up is definitely on the list) I used to have to have everything in the sink a certain way. If things were not in the correct position I would take everything out of the bowl and then put things back in the 'right' way. I know, I know, that is an odd thing to do, but it is not like I thought the world would end if they were in wrong, I just could not put my hands in and wash up until things were right...

As you can tell my mind does tend to wander off on some rather strange segues. It is just the way it is and I seriously doubt I am likely to change; but then again the cognitive symptoms of my condition are getting worse, so I could be wrong about that.