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.
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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.

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?

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.