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!
Showing posts with label pacing. Show all posts
Showing posts with label pacing. Show all posts
Sunday, 6 September 2015
Saturday, 29 August 2015
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.
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.
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.
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 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!
 |
| 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!
Monday, 24 August 2015
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:
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.
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.
Subscribe to:
Posts (Atom)