Posts Tagged ‘CRPS’

You’re so brave!

Tuesday, February 9th, 2010

I was at an opticians a while ago and a woman that I hadn’t met before was on the reception. We were going through the terribly boring process of filling in some forms, prior to the exam and I’d mentioned the visual disturbances caused by RSD and how the red and green circles really hurt. Sounds a little weird I know, but many RSDers will know what I mean. Anyway, she started to ask about RSD and she was a little gobsmacked – right or wrong, I don’t hide the reality of living with RSD, ask me a question about living with RSD and I’ll try to answer honestly in a way that you’ll understand. Then there was the cringe moment, the phrases that should never be said.

“oh, you’re so brave….but you look so happy smiling!”

Oh, ground, just swallow me up now! Get me away from this narrow minded numpty!!

How can I be brave? Bravery is a choice surely? If you wrestle a grizzy bear and stop it from attacking someone else, that would be brave. To jump infront of a speeding car and scoop the child in the cars path, up into your arms and into safety on the pavement, that is brave. They’re choices, choices that you make to do something out of the ordinary and put another persons life above your own safety. RSD/CRPS isn’t a choice, it’s something cruelly inflicted upon me, something beyond my control. Am I brave because I live through it? Again, that isn’t a choice.

As for smiling, is it so hard to phantom that someone in pain can also be happy? Should people in chronic pain shut themselves away from the world and sulk, never to smile or laugh again? It would be an awful world if that was the case.

Sadly it’s not an isolated case, it happens regularly to me, so no doubt happens to thousands of others every day, too. Is it so hard to grasp that a person doesn’t want a pity party, just because they live with a disobedient body, just a little understanding is what is wanted, – I’m not brave and why shouldn’t I be happy? All I want is a little understanding when it’s needed, not a pity party with a 3 tier cake and a karaoke!

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A Night In The Life of an RSDer

Wednesday, February 3rd, 2010

Sitting here at 1am I am filled with fear at the thought of another night of PAIN, MISERY, GUILT, SELFISHNESS and WORTHLESSNESS. I shall expand on each of these further down but let me first grab just a few happy memories of the life I miss so dearly.
For the past 40 years I have had many health issues, including a severe whip lash which has left me with neck problems, “woman’s problems” resulting in four operations, 3 operations for various other conditions, heart problems (still present) plus really too many other minor hospital treatments (sure my husband and Mum could list every single one! as they are the ones picking up the pieces or looking after the home/children). However, even with all the aforementioned I was still full of energy, had a good social network and a highly successful career.
I was able to push myself thought the health setbacks and live a normal family life and considered myself to be no different to the next person. I was able to bring up two wonderful children, memories of which I hold with such joy and just thank god I did not have CRPS when my children were young (how difficult this must be for those that suffer and have a young family).
I was able to work my way up the ladder and managed a fantastic team of 16 staff, in fact work become my life (when my children left home) along with my long suffering husband and Mum.
I was able to face the ‘set backs’ with determination knowing my health issues would be short lived and would be overcome.
Oh how my life has changed since I was diagnosed with CRPS in my right leg. I now no longer work, have lost so much of my social network and a few friends along the way.
Why can’t I overcome this condition? or why is there not a cure for it?
The PAIN is there morning, noon and night, the burning in my back makes it hard to stand or walk, using my crutches leaves me in neck/arm pain and exhausted. The MISERY of “bad days” leaves me feeling GUILTY if I do not get dressed till lunch time. How SELFISH I feel when I cry and moan to my family. How embarrassed I feel when needing help to bath. How WORTHLESS I feel needing my husband to do most of the household chores.
I wish with all my heart that a miracle drug would allow me to push through the pain/condition in the same way that I have in the past. Until that happens I have to find a way through my suffering. Maybe I should start by looking for a brighter tomorrow, maybe I should just begin to start a new chapter for the life I have to accept and maybe I need to look at those less fortunate than I …… For I do have my darling family and what more could I wish for other than to be like the person I used to be.

Note: Of course not all CRPS is as bleak as this blog reads but this is what it is like for me day and night, day after day at this moment in time.

Kim M.

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So…you think I’m lazy, huh?

Saturday, January 23rd, 2010

It’s 3am. I’m lying in bed and for the life of me I simply can’t sleep. I suppose it doesn’t help that around 3am is when the air pressure changes either, but nevermind, it’s customary to sleep at night, – or so I’m told!

It’s not that I’m not tired, cause I am, I’m really tired and all I want to do is sleep. I’m not excited, nothing is happening tomorrow and nothing is on my mind. The only thing that is stopping me sleep is this damn pain and of course, the symptoms that go with it.

I lie with my eyes closed, I’m lying on my back and can feel the egyptian cotton bedclothes and my silky nighshirt touching my skin. The bed is fairly warm, but not as warm where legs are or my arms, they’re always cold to touch you see. The mattress is beautifully comfortable yet supportive. Sounds like the perfect situation, right? Wrong! The bedclothes feel so heavy against my skin, not only that but the fibres feel like white-hot barbed wires, pressing hard against my skin, making my skin blister, burn and itch with pain. The gentle, supportive pressure from the mattress feels like a hard stone block with billions of tiny pebbles, though surprisingly it’s the most comfortable thing that I can find to sit on. The fibres of my nightshirt are, if possible, worse than the white hot, barbed wire covers. Worse still, there are a thousand little people from the book, “Gullivers Travels” who seem to have come to life, leaped out of the book and are consistantly stabbing me with objects so tiny they’re invisible and so sharp they penitrate my skin to the bone. I have spasm after spasm, burn after burn, stab after stab.

Finally I fall asleep. The pain doesn’t stop, the little people don’t stop stabbing me and I could swear that barbed wire is getting hotter! Despite being asleep I moan and cry with the pain and the sensations that I shouldn’t be feeling at all. I wake up every hour at least once and stare at the clock beside my bed, pleading with my disobedient body for a few hours of real sleep.

Morning comes and I’m as exhaused as when I went to bed last night. My legs and arms hurt so much and I can feel the dried tears on my cheeks. I know that my arms and legs are there, somwhere, after all they hurt enough, but ask me where they were and I really couldn’t say. I couldn’t even tell you which position they were in.

And once again, it’s the begining of the day….

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Surviving Christmas & New Year

Sunday, January 3rd, 2010

T’is the season to be jolly, or at least that’s what they say! But how do you cope when you’re feeling worse for wear and you haven’t touched a drop of alcohol yet? You’re excited for all of the restivities but to say that you’re feeling “a little bit rough” is a major understatement!

This year was the first in several that I spent Christmas day at home with just my husband, not running around after everyone else – sheer bliss. Yes I missed the nieces and nephews playing with their presents and the general chaos that a family Christmas brings, but it was so wonderful being able to get up when I wanted to, to go for a lie down without any snide comments and not get knocked by the kids playing with their new toys – not to mention not having to pretend that I’m as close to fit and healthy as can be – or at least not let on that I’m actually really tired and hurting and desperately need an hour to just chill out.

New Year however, was typically a completely different kettle of fish. As Big Ben struck midnight, I was with the in-laws, screaming “Happy New Year” with my niece, followed by an array of clinking glasses and kisses from everyone, then of course the obligatory drunken “Auld Langsine” – which I’m filry sure no one actually remembers all the words on the night! It was bitter cold going back home at 2am though, the snow was awkward to get through with the wheelchair and despite being well wrapped up, the fire in my limbs was definiately burning bright, letting me know how angry it was that I dared to go in the snow and convincing the affected limbs to defy the orders I give them to move.

Over the entire festive period however, we’ve had tapdancing elephants in the flat above us. Yes, I can understand how that may sound like I’ve lost the plot, but the usually quiet occupier of the flat above, has had company, who insist on jumping up and down on the floor constantly. As annoying as it would be if sound was the only issue, I can’t possibly describe accurately how this affects a person with RSD/CRPS.

Soundwaves are similar to water rippling, however they’re invisible and unless incredibly loud, the average person won’t feel a thing. Sadly with RSD/CRPS the nerves are beyond hypersensitive, hypersensitive on uber levels would be more accurate! A knock at the door can feel like someone repeatedly punching the affected RSD/CRPS area, sensing a sufferer into spasm, increasing the burn and the pain that was already through the roof, increases even more. As you can imagine, a bang from a ceiling above a sufferer won’t have a pretty effect.

Of course, the people concerned think I’m a great candidit for a mental institution when any of this is attempted to be mentioned. Frustrating would be a very realxed way to describe it all…

I’d like to wish all the RSDers out there a less painful 2010 and a year that brings many smiles and a great deal of friendship.

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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.

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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

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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

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“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?”

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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.

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