My Radio Interview – Able Radio

Hi all, have been doing final exams so have been very silent. That is except for an interview I did for a fantastic online radio station called Able Radio which has a spot “Airing Pain” produced by Pain Concern who are a UK Charity helping people to understand and cope with pain. Below is a synopsis of the programme and below that the link. The slot I was on was aired on New Years Day, but there are other podcasts which I highly recommend. On the programme below I am lucky enough to open and close the show. Hope you have a look and watch out for further programmes on Airing Pain. Sunny Boshoff

Airing Pain : Programme 23 : 1st January 2012

In show 23 Paul Evans investigates limb pain, covering Complex Regional Pain Syndrome (CRPS), Limb pain following injury and surgery and phantom limb pain. He is joined by Sunni Boschoff (sic) who suffered a crushing injury to her hand and now has CRPS. Also appearing are Dr Bill Mc Rae and Dr Joan Hester who discuss both drug and imaging therapies. This show was funded by a grant from Big Lottery Fund Awards for All, Scotland and an educational grant from Pfizer LTD. http://www.ableradio.com/podcasts.html

 

Occupational Therapy

Hello All
Long time no catch up. I was invited to speak (as someone who had experienced CRPS) at a study day conference at The College of Occupational Therapists in London yesterday. The theme was Long Term Conditions. It really was interesting and reminded me of the amazing job OTs do in the health system and in the community. My personal experience with OTs was in hand units, but their job description is so broad. I think that the most important thing I could say about Occupational Therapy is that it is a philosophy – Help people to continue to engage with the activities which are important to them as individuals after injury, the onset of illness, or working with elderly clients. It is such an important function in so many ways. The basic principle of keeping active is beneficial to mental health so can ward of depression and feelings of hopelessness that can sometimes be overwhelming. It can help prevent dependency on medication to treat these symptoms, by engaging and encouraging  active participation which is a far more gratifying experience. My recent experience illustrated just how quick it is to lose control of your life when something happens to affect your health. Without the kind of support which Occupational Therapy sets out as its goal, i.e. To literally watch your back and help you to overcome unfamiliar obstacles, for the person in question, the experience can be psychologically devastating. In my case for a long time I was unable to use my right hand without exaggerating the withering pain of CRPS. During the first year when it seriously restricted the use of my right hand, apart from the obvious practical problems, it was the dominant one, so the loss was very emotional. Both of the OTs who worked with me through those horrible times were very aware of that fact and during treatment always acknowledged this in subtle ways.
For me the holistic nature of the treatment I had from OTs fitted in really well with the multidisciplinary approach which ultimately helped me to overcome the CRPS. They constantly encouraged me to use my hand, and helped me find ways of doing this. It was so important to do that and although at times it felt as though there was no progress they kept up the encouragement and it paid off in the end. Have a look at COTs Website and get an idea for yourself and check out the small films which really illustrate what I am saying. http://bit.ly/rGZSYt Sunny

Body Image and Pain Management

Hello – Have been off the air for a couple of weeks, life is so time consuming! I have been reading a lot about body image and about how the way we view an injured limb or any part of our body can have an effect on the pain we experience. When I was still in the most painful months of my CRPS, I became conscious of the fact that I was weirdly fascinated by the ghastly appearance of my wrist and hand, which frankly looked as though they were in the throes of dying. The unusual texture and temperature which were confined to the location of the CRPS had the effect of making me view my hand as an appendage that was not connected to the rest of me. Now even though I was experiencing shooting pains, cramps, muscle contractions etc right up my arm and into my shoulder, it was the visual of my hand and wrist which determined where the cut off point was in my body image. It was like a mental amputation. Below is an exerpt fom CRPS Awareness – moving against pain  http://bit.ly/i3mKnZ     

“I decided that I shouldn’t look at my hand with horror and treat it as though it was an abomination. Instead I took the decision to give it praise when it achieved any movement. Instead of noting its limitations I celebrated its achievements no matter how miniscule they were. Although the extreme pain can naturally isolate an injured limb and create a tendency to protect it with strange postures, I found excluding it and treating it as though it was separate from the rest of me was a very negative approach. I worked hard on trying to feel the whole flow of my system coming to and leaving the injured hand. Now I know this may sound a little ‘New Agey’ for some, but it actually works. Your mind is a powerful driving force and if you engage with its power it can really help you to recover and your body is after all one system.”

Anyway all I can say is it worked for me and the most important thing, I think, to remember is that nothing works like magic, you have to keep at it,  even though you may not see or feel any results, don’t give up, the accumulative effect of good therapies and mental attitude – in spite of the overwhelming pain – do make for recovery. For me it was a bit like being on a diet. You see no results for a long time and then suddenly you look a bit more like yourself again and then when you see that, your mood lifts, you look at yourself more positively and everything seems to be much easier. I have been tweeting about all this. Ok so that is it bye for now. Sunny

Alexander Technique and the Shape of Pain

I have been back on the computer a lot recently and I find myself twisting my legs around each other into a tight knot. My spine has to slacken and my shoulders hunch forward to complete this recipe for pain. I am alerted to the bad posture when I get a dark metalic kind of pain in my neck. It is quite hard to get rid of that tightness and discomfort in the neck; it is almost like a cramp. Alexander Technique is preventative and the teachers will encourage you to be aware of the relationship between your head, neck and spine; your ‘sitting bones’ and even distribution of weight, especially when you are sitting or driving or any sedentary position.

Sadly my wonderful Alexander Technique Teacher Elizabeth Atkinson died recently after a long battle with breast cancer. I am so sad about that. Lizzie literally changed my life about 14 years ago when she began helping me with back problems which had begun with a slipped disc in my lower back at about 11 years. I owe her much, because I used to think of myself as someone with a back problem which would crescendo from time to time when I had been putting strain on it. After the superb introduction by Lizzie and my belief in the technique, (from experience) I can honestly say that almost always I can see the problem arising and can do something about it myself. In the past if it had happened suddenly I would go and see  Lizzie and I would arrive in a mini-cab looking like quasimodo, hunched over and an expression of panic on my face and I would leave and walk home with my head held, my spine doing it’s job properly and with the feeling that I was at least two inches taller. Actually since learning about AT I have an exercise that I do when I am walking in the street. I am about 5’7″ and when I see someone coming towards me who is taller, I apply the Alexander Technique and I say to myself  “I am as tall as you are” and as I pass them, in my mind I am as tall and I can feel my breath surging through my body. Always a good rush!

Thats the thing about pain really,  that it takes over your body and demands its own shape. Thats the thing about Alexander Technique,  that correcting that shape is very subtle, but involves a conscious effort to feel the benefits of that rush of breath when things become re-aligned. The rush is the oxygenation of all the cells which have been deprived by the shape of the pain. I always imagine the ‘rush moment’ to look like those plastic ice bags which you fill with water and they make individual blocks of ice which you squeeze out when they are set. When you begin to fill them each ‘cell’ bloats  with the water and the whole thing changes shape. I like the idea of as many cells as possible in my body being proud with oxygen as often as possible.

Thank you Elizabeth Atkinson you have given me an invaluable gift to take with me forever. I mourn your passing. Sunny

The Pains of CRPS/RSD and life in cyberspace

Hello been quiet for a while. Life is so jam packed. Computers are supposed to make things easier, but the thing they forgot to tell you is that machines operate at the touch of a button, but the humans who are supposed to follow up on the commands have to put one foot in front of the other just to fetch a pen from the other side of the room. We can never keep up with them and then consider all the tiny errors (not to mention the huge ones) that are knitted into the whole process and which can take weeks to rectify. In the three and a half years since I started writing my book, more and more companies have become completely remote. There is not a telephone number to be found anywhere on their websites or there are 0870 or 0845 numbers which cost fortunes to phone. I sometimes try to imagine at any given minute how many millions of people on the planet are tearing their hair out with frustration. How many ulcers are being formed.

On the other hand cyberspace has rescued millions of people, who without facebook or twitter or blogs would have been completely isolated with their painful conditions. I recently was contacted by a young woman with CRPS in her leg. She has had it for 8 years, but has never given up and keeps moving and working in spite of the pain. Her partner was trying to understand what she meant when she said that the deep dark pain had dissappeared for a few minutes during some osteopathic treatment. It is really difficult to describe the distinct and very different nature of each of the many sorts of pain that assail anyone experiencing CRPS/RSD. If you think of the rings in a tree stump which show the growth patterns of the tree and then you use that image to imagine that it is mapping the pains in a limb. The pain closest to the centre of the ring (for me) was a dark, heavy and cold pain which was always there right up my arm, trying to draw my hand into a claw. Sometimes it would be worse, but it was constant. Then the next two or three rings would represent a thick congealing glue which feels sticky and contributes to the general heaviness of the limb. The following  rings would alternatively represent cramps, muscle spasms, shooting pains or stabbing pains interspersed with more glue.  Then finally you reach the surface rings and these alternate between frostbite and having boiling water poured over the surface and then an icy breeze blowing over the wound. There is a prickling on edge sensation and a numbness always present within the other painful skin sensations. Each one is so distinct that when you mention that one of them has subsided, that in no way means that you feel better. I believe that this is the problem with diagnosis. It is impossible at any given time to fulfil (honestly) all the criteria, because it changes all the time. The only thing that does not change is the accumulative effect of all these pains on the person experiencing them and for those who have to helplessly watch people they care for suffering.

The same young woman I mentioned earlier, who is a teacher, told me about a weekend recently when, with a group of high school children on an away exercise, the facilitator of the venue in the countryside had the skills of a very good stand up comic. He was generous and able to make everyone laugh until they were holding their sides. She talked about how much better she felt at the end of the weekend. How this was in an over all sense, not that the pains had gone, but her body had been nourished by the laughter and probably by the positive experience shared by all on the weekend. I tried to visualise the laughter in the rings of pain and saw it as oxygen opening up spaces which are gummed closed by not breathing. Ok so thats it really. Check out this guy on youtube he really makes me laugh. http://bit.ly/nxulIH Have a great weekend all. Sunny

Oxytocin, keeping positive and support

Morning – just posting some stuff up on Twitter about Oxytocin. I love the information about it because it is a naturally occuring hormone which gives a feel good result and is stimulated by activities which should be encouraged anyway for general well being. Oxytocin is produced by being touched or held by someone who cares about you, a good bout of laughter, making love or breast feeding (which obviously applies to a particular group). I think that these days with our communication occurring mainly through a computer screen or smart phones the touch element is largely absent. On the other hand, people experiencing chronic and continual pain, which can become isolating very quickly, and who would otherwise be alone in their experience,  are able to find support from others all over the planet who are sharing their distressing symptoms. It is plain to see that there is genuine empathy and sympathy being passed around. For some cynics this all may be too sentimental (until you are in pain yourself) but I have to say I am touched by the generous sharing of experiences. It is hard to understand or remember pain when you are pain free. Perhaps this feeling of “being touched” metaphorically speaking, produces its own oxytocin. Certainly feels like it.

Remembering Pain

Hi I have been finishing off end of year college stuff so have not been online that much. However some people who have CRPS have been in touch with me after reading my book and I have to say I am so gratified that they found it useful. When I am in the company of people experiencing those awful waves of pain, even though I have largely forgotten the acute nature of the pain, I can really empathise when I see the person halt their conversation as tears well and they hold their breath waiting for the full bombardment. I do remember this and how it breaks concentration, how after every wave you have to gather your thoughts together and pick up where you left off before the attack. I particularly remember after much hard work, when the pain signals had begun to diminish, my body was still remembering how strong they had been. I wrote about this in my book. See below:

“Now when the pains came they were nothing like the intensity that they
had been. They were strange and felt more like wind blowing over an ember,
but not firing it, so although I braced myself for the onslaught of the pain,
it would die out. When I described this to (my Occupational Therapist) Joseph he explained to me in a simple way how to view what was happening. He told me that the extreme pain would have created, over the long period, substantial neural pathways.
Now that there was significant healing and a lot more movement, most of that pain had diminished. However whatever pain there was would still travel up these enlarged pathways and so my body would brace itself in anticipation of the agony to the extent that even my face would grimace, ready for the blitz, but the message was much smaller than the pathway.
I was very excited by this information. It appealed to me visually and
I imagined a tube train entering a station and how it fills up the tunnel
and then I imagined a tumble weed being blown down the tunnel and bouncing off the sides but losing momentum. This became the way I viewed the lessening pain signals and made a conscious effort not to grimace when they began, but to breathe carefully and try to compose myself. I hoped this would help to narrow the neural pathways. It really worked for me psychologically and then physically.“

Of course this was a simplified version of what happens, but was exactly what I needed to try and work with what was happening in my body and brain and to attempt to alter my reactions to it.

Joseph always had answers for my questions, if he did not know on the day he would research it either while I was there or in time to tell me on my next visit. I will always be grateful for the support he gave me.

Sunny