Frustrated and broken

March 9th, 2010

I start talking to my wonderful husband, I look at him and he looks at me, the words coming out of my mouth start getting slower and slower then just stop, I stare at the floor. The word has gone, they’ve all gone! My brain and tongue just aren’t in sync any more.

I get frustrated, there are other random words but not the ones that I want to say. In frustration I shout them. I want to cry, I can’t even express what I want to say in words, the words that I need to express myself or finish whatever sentence I was in the middle of saying, are gone.

I pick up the empty mug that’s on the coffee table beside me and I launch it across the room in temper, throwing it hard against the floor. These days the strength that I have in my hands is pathetic, I can’t even open a bottle top by myself. I have to watch my hand pick up the mug, I feel the smooth pottery texture against the palm of my hand and it feels like white-hot barbed wire pressing deep into my hand. It hurts like I’m being tortured. My hand feels twice the size that it looks and the force that I put into my hand to throw the mug, hurts so much that I sincerely want to slice my hand off.

The words are still gone, my husband shakes his head, having seen this frustration all too many times before. I break down in tears and shake violently as the tears escape me. The mug lies on the floor in multiple pieces, broken and irreparable – just how I feel. He wants to hold me, to comfort me, kiss my forehead and tell me it all ok…but he can’t, because to touch me is to inflict incomprehensible and indescribable, physical pain upon me.

A Day In My Life

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.

You’re so brave!

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!

A Night In The Life of an RSDer

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.

So…you think I’m lazy, huh?

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….

Snow!

January 13th, 2010

Snow – one of those words that us RSDers dread. Already frozen limbs somehow manage to get colder; heck you could even keep the milk cool on them! So with travel chaos, panic buying and Schools that can’t decide whether to open or close I expect you think I’m going to say how much I hate it all. After all not only do we require more layers and more heating than your average person but crutches, as far as I know, are yet to be given an ‘off road’ makeover. While walking in fresh snow with them is possible to get about, once it starts to compact and melt you’d be risking limbs to attempt going across it. However when it comes to snow I love it, yes you did read right I LOVE THE SNOW!!! Bring it on, the deeper the better as far as I’m concerned.

I’ve always liked snow and pre RSD I would go out with my family for long walks in it enjoying how spectacular the scenery look coated in white. Yes my pain levels are horrendous and I’m maxing out the meds so much my Pharmacist has trouble keeping up with me it but it still hasn’t dampened my enthusiasm.

Coping with the practicalities of day to day life has been made somewhat easier over recent years. The advent of supermarket delivery vans (well worth the delivery charge in my view) and home delivery from Pharmacies has made life a little easier for those with restricted mobility in inclement weather. If you’re as lucky as me to have family nearby then it’s possible to cope with most things this cold spell throws up. The biggest risk for all us is, of course, cabin fever. Days spent locked up with family when you’re used to having some peace and quiet during the day can be, well, frustrating. Mix that with less sleep and more pain it can make life – how can I put it – interesting to say the least. Take yesterday, Mum decided to go into tidy up hyper drive and we nearly ended up throttling each other over a box of soft toys! Ok you can stop laughing now.

Then of course it’s what to do, snowed in, huddled up in duvets and heat blankets. Housework? No fear, not when the RSD is working overtime! So I rely on the mainstays of modern life: PCs, a WII, and a DS that kind of thing, there is however one thing that keeps my sanity in this household. My room. My TV. Yes, Yes I know there’s absolute rubbish on it but it’s my inner sanctum. My space. I’m always a great advocate of the Continental siesta and in this kind of weather I’m even more inclined to partake. Propped up on pillows (who has room for a fella in bed these days), dosed up and zoned out.

So, I say, enjoy the snow while it’s here. After all we don’t get it very often, remember the fun you had as kid building all those very strange looking snowmen and scoring a direct hit on your best friend head with a well timed snowball, savour the quiet that a good covering brings to your neighbourhood and laugh heartily when the neighbour pours boiling water on his windscreen……………

Claire Fearne

Surviving Christmas & New Year

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.

It can’t be that bad!

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!

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

Concentration and Reading

August 15th, 2009

Concentration. It’s something that people take for granted and need to use in order to function in everyday life. It enables people to complete tasks, from the most menial, like making a drink to the most complicated like a doctor preforming surgery. When someone can’t concentrate they’re usually distracted, or need a break then they can resume working on whatever task they are trying to preform. A simple enough concept.

Imagine that you’re reading a book and boiling hot liquid is poured over your foot. It’s going to distract you. You’re also going to feel pain. You’re likely to disguard the book in one fashion or another and tend to your scalded foot. It’s a similar concept I suppose and explains in laymans terms why people who suffer with Complex Regional Pain Syndrome (Reflex Sympathetic Dystrophy) have difficulty concentrating.

If your foot is burning, hurting, itching, feels like it’s in a vice and that the skin is so tight it’s going to burst, it’s fairly likely you’re going to find it incredibly hard to concentrate on anything and when you can manage to concentrate, it’s inevitable that it won’t be for a long period of time.

Add into the mix that when a person with RSD/CRPS reads, they often suffer from visual disturbances. Dyslexia has been described to me many times, by dyslexics, as the words on the page, acquiring a mind of their own and moving around on the page. It’s similar to what my visual disturbances are like when I read. Letters and words move around randomly, as and when they please. The words will make sentences that aren’t there and when read aloud, make no sense at all, but for some bizarre reason they seem to make crystal clear sense when I read them. I often have to read a sentence several times just to read what is really there. Other times I get stuck, reading the same line over and over, because the line I’ve just read appears to have moved a line further down the page. It makes no logical sense and becomes frustrating as well as distracting from the document itself. You may read a paragraph 3 times and those 3 times may all read the same thing or something completely different – you just don’t know!

So add the two issues together and it’s no wonder that a person with RSD/CRPS doesn’t enjoy reading as much as they used to and their library card begins to gather dust. Distraction from the thing they’re trying to do, because of the pain and other sensations caused by the nerves sending the wrong signals and then visual disturbances when you’re trying to read, it’s no wonder that reading becomes a stressful chore for some, when previously it had been a much enjoyed hobby.

Nattelie