Posts Tagged ‘FightingRSD’

A Day In My Life

Saturday, February 13th, 2010

Hi. For those who don’t already know, I’m Emma. I ’m part of the administration team for FightingRSD and I’ve had RSD for just under 8 years now, affecting my right arm, hand, and shoulder. Six months ago I took the life changing decision to move to South Korea with my fiancé, Mark, to work as an English teacher in a language academy just outside Seoul.

My day starts at 7:30am, and like most sufferers of RSD I often struggle with the tasks that most people don’t even notice. Fortunately for me, my fiancé is always happy to help me, so with a bit of assistance I’m showered, dressed, we have some breakfast, and head out to work. We live in a mid-sized town outside Seoul and about a 15 minute walk to work. I work in a language academy for 5-15 year olds teaching English, and after half an hour to settle down and get ready for the days’ teaching the first of our children start to arrive. As teachers we make the effort to greet each bus and welcome in the children, it sounds mundane but it’s great for the kids and creates a nice atmosphere of inclusion.
Once the school day kicks off, the reality of my RSD means that I need to make a series of adaptations. My first class is a group of 5 year old students, only 3 in the class, but a handful nevertheless. We have a set morning routine of writing out the date and sentence of the day (a short phrase that the students must learn everyday), and this poses the first working challenge for me. Naturally I am right handed, and so my RSD makes it difficult to write very much. I know I’m going to need to write later, so each day I break the date down and get my students to write a section each on the board. For the students it’s educational, they learn days, months and years, they learn spellings and word patterns and they practice writing. For me, I get to save my limited writing capacity a little while longer. Beyond this I always make sure I’m well prepared for my lessons, and flash cards are a great device for demonstrating language without me needing to overuse my arm or hand. I can model language easily and effectively, and we can re-use the flashcards for games to help practice vocabulary and sentence building.

Simple changes such as these allow me to manage my first lesson and soon we’re packing up for the next class. Now I’m on to my class of 7 year olds, a lovely but boisterous bunch who require a ‘hands on’ approach. With limited hand capacity … that’s not so easy. So we kick off the lesson with some noisy activities – team games where the kids write down target vocabulary on the board are a favourite as not only is the language elicited and modeled (without me writing again) but the class expends some of their constant supply of energy. Next we do a speaking activity to turn the target vocab into sentences, this is great fun and with no writing or physical exertion required I can manage the whole exercise verbally. The class then completes a short writing task to consolidate their knowledge and we end with a simple game. With a class like this one, it can be tough to keep them away from my arm, but simple procedures, like always line up on the left of the teacher, keep things under control.

I return now to my five year olds, and today we’re learning body parts. The natural choice here to make the lesson fun is to learn ‘head, shoulders, knees and toes’ but this presents another challenge. I can’t follow the actions with my right arm. So, I model using a simple stick man drawn with my left hand on the board which makes the kids giggle at my bad drawing and squeal in delight when I point to the wrong body parts. Then it’s off to another room in the school to use a computer and digital projector. I’ve found a video of the song online, and this gives the students clear examples to follow without causing me any extra pain. My students have a great time and the video gives them a focal point; they learn the body parts well, although following the actions proves a little more challenging for one student! The lesson works really well and we have a lot of fun too, a few simple changes and some planning and what would have been an obstacle is quickly and easily negotiated.

At lunch there are so many tasks that could be difficult, such as carrying trays and food, but my co-teacher and I split the tasks seamlessly so lunch is taken care of and the students don’t even notice that there’s any difference. After lunch I teach my seven year olds once more before a well earned hour long break. By this stage my pain is starting to escalate, pain management strategies work well, but they cannot stop the inevitable, so I take advantage of my break to rest and take some medication to get me on track for the afternoon’s lessons.

Changes such as these may seem small, insignificant even, to some seem they may seem simply to be common sense; but for me they allow me to do so much more by conserving the energy and ability I have to use my arm. My job, and living in a new country is a constant challenge, but I have support for my fiancé, friends and colleagues and more importantly I get the opportunity of a lifetime. Living with RSD shouldn’t be about what we can’t do, but about finding ways to maximise what we can do.

It can’t be that bad!

Saturday, November 21st, 2009

Something that I have noticed time and time again, is that people associate initial injury with outcome and prognosis. Of course this is completely normal and usually makes sense. It’s often that a minor injury will have a short healing time and won’t cause lasting problems and a severe injury would have a longer healing time and is more likely to cause longer lasting problems. I think that’s where a major issue lies with people understanding how RSD affects those who suffer. It defies logic that a minor injury or sometimes no injury at all, could cause something so horrific – and it is often a minor injury that causes RSD/CRPS.

People are often astounded that I’m disabled from a minor fall. It’s so much easier to anticipate a big accident, involving paramedics, a hospital stay and months upon months of rehabilitation would be the cause of me now being disabled. It’s often been said to me by even medical professionals “pain is subjective, directly to the injury, therefore since it started with a minor injury, it can’t be that bad!”

RSD/CRPS doesn’t play by the normal rules, like other medical conditions. The pain is far from subjective to the original injury. The original injury heals, but the body doesn’t accept this, the nerves misfire and stop working. It’s no longer the original injury, it’s something so much different and incredibly more complex.

Are we in a no win situation? Many people can’t understand something so minor causing something so traumatic, having such a huge impact on a persons life. It simply goes against logic. The sad thing is, those people can step away, it only affects their lives for a limited time – the time that we’re with them mostly. It doesn’t matter that they don’t understand our pain and that they can’t get their heads around the fact something minor had such a devastating effect, because they can walk away from it. As sufferers of RSD/CRPS, we don’t have the luxury, we have to live with it and somehow accept that for some reason, our bodies malfunctioned and didn’t heal normally, but created other problems instead.

Invisibility, but not like Harry Potter!

Sunday, August 23rd, 2009

Have you ever wondered what it would be like to have the power of invisibility? You could go around about your business unnoticed, you could avoid awkward situations where you’re head on with a person and both side-stepping so that you don’t walk into each other and you could sneak backstage to see your favourite band! It could be so cool being like Harry Potter with his invisibility cloak!

I’ve found a much less magical way to become invisible, all you have to do is sit in a wheelchair and instantly people can’t see you! How do I know this? Well, people seem to ignore me and even walk into me when I use my wheelchair.

I may be in a supermarket and people will repeatedly try to walk through me and ignore the fact that I’m there completely. The shop assistant will ask the person that I’m with for payment and even when I give the payment, they’ll hand the change to the person that I’m with.

A change of scenario perhaps? My partner and I took our niece out for the day. Whilst we where out we went to a restaurant, my niece is very obviously a child and could not possibly be mistaken for an adult. As my partner went to the ATM, I went to the restaurant nearby with our niece. “Table for two?” the waitress asks, however the question is not directed to myself, the only adult present, but the child! So although not quite invisible in that scenario, certainly not good enough to talk to!

What is it about a wheelchair that makes you a lower class citizen? In many places you’re either invisible, or just simply not good enough to talk to. Can’t people comprehend that just because limbs don’t work the mind functions quite fine and in some cases superbly? Look no further than Stephen Hawkins, scientific genius but an uncooperative body.

Nattelie from FightingRSD

Fitness and RSD

Sunday, August 2nd, 2009

Research shows that to maintain a healthy body, joints etc. you must weight-bear, flex your joints and do a small amount of impact exercise.

So where does this all leave those suffering with a condition which is said, by many scientists and doctors, to be one of the most painful conditions known to man?

Simply put the question is; will exercise help you deal with your chronic pain more?

In my opinion the answer is yes.  It has been shown in many pain management courses that the fitter you are the more you cope with the agony of CRPS.  That of course doesn’t entirely make the pain better but you do produce more endorphins and thus the pain seems less.

I feel I stand as a testament to this philosophy.  I have been suffering with CRPS since 1973; I was a young child and thus not believed.  The thing is because I wasn’t believed for the most part I just got on with it.  I also come from a family which tends towards being very active, I had to keep up.  Actually for the most part I surpassed those I competed with.  I took up gymnastics, swimming, running and hockey as a youth and later various martial arts.  Not bad for a patient who’s CRPS is spreading.

Then in 2002, following a small accident, my CRPS went ballistic on me and I became increasingly disabled.  My activity level went through the floor and I seemed incapable of getting out of the hole being slowly dug by the pain and huge amounts of medications I was stuffing down my throat.

Then in 2008 came what I feel was the turning point of dealing with this illness.  I underwent a pain management and neurostimulation course at St. Thomas’ hospital in London.  The course was designed for those who were felt to be candidates for neurostimulation, and to give that patient an informed choice.  Even then there are no guarantees that this will help and there are a lot of foreseeable problems with having the unit fitted.  So in addition to the module they give pain management strategies.

Unlike a lot of other hospitals who argue that due to the high risk of infection they don’t advocate trial units, St. Thomas’ do exactly that – fit a trial unit for a period of one week to see what, if any, relief the patient will get.  For me the trial failed.  Though not unexpected it did leave me down for a while until I started getting a handle on the pain management strategies and life without medication, which also did not work for me.

So I am now getting on with life without medical intervention and one thing I have made a choice about is exercise.  I am determined to get fit again.  The weight, due to medication and inactivity has piled on and now it is time to get rid of it.  I am not yet confident enough to rejoin a gym, swimming pools are a no go zone as the cold water makes me spasm and martial arts are probably not for me right now.  So I am continuing with the exercises given to me during the pain management sessions and, in addition, I have taken up yoga.  I have so far lost over a stone in weight and I am feeling more in control of my problems than I have ever felt in the last 6 years since my CRPS went ballistic on me.  I am less stressed and have far more energy than I have had during my battle.

Is the pain down?  No, I can honestly say it isn’t.  Are the associated symptoms reduced?  Again, I can emphatically answer no to this.  So why do I feel better?  Not easy to answer except that I feel more in control, my head is clearer and not so fogged up with drugs and I am truly sleeping better.

Is this all due to exercise?  Well other than being off the pills, yes, I believe it is.

Now I am not saying we should all be training for the London Marathon here but I am advocating being as active as you possibly can be.  I also don’t believe that all patients can drop their mobility aids off at the local A&E unit and start doing the fandango around Tescos.  I do appreciate as well that I do have a fair head start on many, as I was extremely fit before my CRPS went ballistic, though I am no where near as fit now.  I also know that I won’t achieve the levels of fitness I enjoyed previously, my age if nothing else is against me.  I do however feel by getting my weight down I am putting less stress on my body and by being more active I am producing more of the painkilling endorphins which in turn makes me less aware of my pain.  I have also noticed my concentration is better and my depression has lessened.

You can’t cure CRPS but what you can do is control it.  The trick is finding out what works for you and to be as active as possible.  It isn’t easy, I know that better than most but you can be in control and your overall fitness will play a major part in this.

Sian – FightingRSD

“How Are You?”

Sunday, August 2nd, 2009

The telephone rings and I struggle to press the button to answer the call. It’s a friend who I haven’t spoken to in a while. The inevitable question projects itself through the earpiece of the telephone,

image from http://www.ci.loveland.co.us/

image from http://www.ci.loveland.co.us/

and I cringe.

What am I supposed to say to that? Am I supposed to conform to good old British manners and take a “tally ho!” attitude, lie through my teeth and reply, as expected, “fine thanks, how are you?” or do I speak the truth and refuse to conform to the good old British manners?

The truth is, try as people may, unless they’re experiencing it in some context, either having RSD/CRPS themselves or being very close to someone who suffers from it, unless it’s a big impact on their lives too, they’re never going to really understand. Of course it’s polite to ask how a person is, but do they really want to know the answer, or is it just passing politeness?

People get bored of their friends being unwell all of the time and it’s hard enough to experience and understand the link between a minor injury and this awful condition, destined to live a life of intolerable and incurable pain, for an undetermined period of time, so it’s no wonder than many friends and family members simply cannot make the link and are confused as to why someone didn’t get better after an injury so minor.

In a split second a million thoughts go racing through my mind, – do I tell the truth, or do I conform to British politeness? Do they really want to know how I am? If I tell them frankly with they think I’ve gone mad and call the men in white coats to come and get me? Would they understand? How would they react?

Quite simply, if I tell them the truth, I fear that I’d scare them and that they wouldn’t understand. If I conform to society and it’s politeness, they won’t understand why, when they call up in a couple of days and ask me to meet them in town for a coffee, I have to decline and say that I’m not feeling too good. Of course I could simply change the subject.

I suppose it all comes down to how much I really want that person to know about my situation – and how much I want them to see through my painted smile.

To be honest, today is a fairly bad day. I over-did things a few days ago and didn’t pace myself, so now I’m suffering. My hands are burning and itching so much that I want to claw them out, starting with my palms, my finger tips hurt so much but unless I look at them, I have no idea where they are and try as I may, I cannot make a fist or straighten my hands out fully. They hurt so much that I’m finding it hard to hold back the tears and keep up appearances and despite it being mid-afternoon, I still haven’t managed to get dressed yet. It was a struggle to get washed, brushing my teeth then going back an hour later to wash my face properly and apply moisturiser, simply because it makes my hands burn and hurt even more. I’m not even holding the telephone, because the smooth texture of the handset feels like I’m holding burning hot shards of glass, so I rest my head on my shoulder with the handset inbetween.

This time I choose to change the subject. “Oh I’m so sorry I haven’t been in touch, things have just been a bit hectic lately with ….” and the question fades into insignificance. My friend only understands a little that I’m not in the greatest of health and he’s one of the people that for some reason, I don’t feel truly comfortable letting them see beyond my painted smile and into my world of pain.

So next time you ask “how are you?” – ask yourself “am I really prepared for a truthful answer?”

Hello world!

Monday, July 20th, 2009

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We’ve been saying for long enough now that we were going to incoperate a blog to the FightingRSD site, so here it is – finally!

This blog is contributed to by several people affected by RSD/CRPS. The author maintains the copyrite of his or her contribution.

If you suffer from or are affected by RSD/CRPS and would like to participate in this blog, please email us at nattelie@fightingrsd.com or sian@fightingrsd.com and please feel free to join the support forum.