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.

The death of Motley Crue

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

Alice Cooper

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




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

Alice Cooper's band

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

Nikki Sixx

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

Tommy Lee's drum-coaster

Tommy Lee and Vince Neil

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




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

Back again!

I confess to having been a bad blogger and vanishing for a few weeks. There is a reason for that, which I did intend to mention before I went but once more managed to forget. We finally made it to our place of respite, which is a farm owned by people I've known since I was a baby. We were there for a little longer than intended, partly because I had a slight dip in health while we were there and needed a couple of pain-relief injections.

We took delivery of our brand new Motability car shortly before we left, which made the drive down interesting. It is a Vauxhall Mokka Turbo SE which, despite some of the reviews I have seen, is actually a lovely car to drive. It has much better road grip than our previous car and because it is a turbo, it pulls away faster too. The reason that we picked the Mokka was because we got much more for our money in terms of features. There is individual climate control for passenger and driver sides of the car, with heated seats and lumbar support on both sides too.

Although many people refer to Motability cars as being "free", this is not true. People who have a certain level of mobility problems are entitled to claim the mobility component of Disability Living Allowance. Let me be clear; this is not a benefit. It is an allowance that helps to contribute towards the additional costs that disabled people incur due to their disability. The good thing about this Allowance is that it allows many disabled people to work, in some capacity. This, of course, means that not only do they then pay taxes, they are likely to spend much more money in various businesses, thus contributing to the economy at a much higher level. Without that allowance, this would not be possible.

For people like me, unfortunately I am not able to work, due to the severity of my health issues. I have, in the past, volunteered in various capacities. My car played an essential role in this. What happens is I pay the entire of the mobility component of my DLA to the charity Motability. In return, I lease a car from them via a local supplier. In my case I also had to pay a small 'up-front' fee of £99 towards my car.

Luckily for me, the almost £60 a week that I pay to Motability includes full breakdown and tyre cover. Believe it or not, with only 650 miles on the clock, we had a blow-out. I wasn't in the car at the time (thank goodness!) as my husband had popped out to a nearby town to pick some food up. It was around 8pm when he called me to let me know what had happened. Thankfully he had been able to control the car and pull into the side of the lane; three guys from a nearby farm had come out to help him.

Here is my big problem with modern car manufacturers; where is the spare wheel? Why is it taken out prior to sale? This meant that rather than the 5 minutes it would have taken my husband to change the tyre, he had to wait for a tow-truck to come out, pick the car up and bring him back to the farm. Because it was night-time and they didn't have a tyre immediately available, the tow-truck then returned the next morning and drove my husband almost 30 miles to the nearest stockist. Yes, I did say 30 miles for a tyre! Had that garage not had any, it would have been a drive of over 65 miles each way.

Anyway, after that had passed, we stay an additional couple of days to de-stress me so that I would be okay with the drive back. That didn't work, unfortunately. It has taken me over a week to recover enough to get back being able to talk-type on the computer.

I hope you've all had a happy and healthy few weeks. It is good to be back! The only thing I really miss while there is that there is no internet access.

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. 

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.

A lovely way to treat disabled customers.

A few of you may have noticed that I am a little hot under the collar today. No, scratch that, I think fuming is probably a much more accurate description. Some of you are in groups that I have already put comments on, but for the rest of you, I will explain below:

Yesterday was weekly shopping day, including taking along my 85 year old mother in law. Because of budget we do not particularly want to drive the ten miles to her home, then nine miles back this way to a local market only to have to repeat the same journey again. We always used to shop at Wolverhampton market, but because of mobility issues we have not been able to do that of late. Instead we thought we would use the Lidl that is local to my mother in law; the Finchfield, Wolverhampton branch.

Not any more. Yesterday involved the usual parking in a disabled bay, popping the blue badge on the dash and heading into the store. Now you all know that I am not capable of so much as getting out of bed most days, but now and then - increasingly rare, I admit - I can manage to leave the flat for an hour or two. Come the time to exit the store and get back in the car and there was a ticket on the car saying that it was incorrectly parked in a disabled bay. On inspection, the blue badge was no longer on the dash, but now on the floor - still visible and still showing the correct side of the badge as it is in a holder. I am not entirely sure how that happened, I can only think that someone bumped into the car quite heavily and it slipped off the dash, where it started out. There are no marks on the car, so it wasn't another vehicle, it must have been a pedestrian.

My husband returned to the store and spoke with the assistant manager, Michael, whose reaction told him that this is not exactly the first incident they have had. He apologised, took a photocopy of both the ticket and the blue badge, then said that although he was unable to deal with it, the store manager would sort it out tomorrow (today in other words) and give us a telephone call. Well, yes, we did get a telephone call, but it was to say that he couldn't do anything and to call customer services. However he then said that if they couldn't sort it out to call him back. I must admit that did not make sense to me, because if he had already said he wasn't responsible and wouldn't/couldn't do anything, what would be the point in calling him back? He was also very reluctant to give his name and the store direct phone number.

I then telephoned customer services and spoke to Danny, who appeared very confused by the idea of fine tickets being issued on Lidl car-parks. He went away, a couple of times, and eventually came back to ask me to send them a photocopy of both my blue badge and the fine-ticket. After advising him that the assistant manager had already taken copies - and signed one for us confirming he had done so - Danny stated that they would contact the store and the matter would be investigated. He confirmed that I would hear something within ten working days.

It does not help that this same fine-issuer (£90!!!) turns tail whenever he receives a verbal response from an able-bodied driver who chooses to park outside the bays, blocking access etc. To me, that appears to be a case of picking on more vulnerable customers to make up the numbers.

I have been told that there is no legislation that forces me to pay this fine, as the incident took place on a private car park. I will research this myself to double-check it, but in the mean-time, I will not be paying a penny. I am more than happy to appear in a court though, in my wheelchair, or appear via Skype from bed if I am unable to move.

Had the store manager been just a little more enthusiastic and a little less reluctant to give even his name, I may not be quite so angry. As it is, I am fuming. I admit it. I am, however, also very concerned at the behaviour of the fine-warden on the car-park and would warn disabled drivers in particular to perhaps think twice about visiting Lidl, especially in Wolverhampton, Finchfield.

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!

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.