Sometimes I forget….

June 13th, 2010

Sometimes I forget…I forget what day it is, what I was doing or even important appointments. Sometimes I forget to eat or that there was something I had to do today. These things are annoying but generally i can live with them. Sometimes I forget things that have happened, forgetting great memories is always going to hurt, but I’m sure that for most people, that’s a fact of life – it happens.

What hurts more than anything, is when I forget about my RSD. How could I possibly forget about my RSD, you may wonder. Of course it’s there constantly, it’s constantly stopping me from doing things, it’s constantly disabling me, but I forget…I forget that I can’t do things like I used to. Obsurd as it is, it’s true.

I used to be a highly active person, squeezing every last drop out of life. I thought nothing of working 8+ hours, going on a shopping spree, having an hour at the gym then socialising, all in one day. That was my life, I crammed as much into it as possible and I loved every second.

Maybe that makes it less surprising, but let me explain.

I decide that I need to go into town. Something has to be done. Maybe I need to pay a bill or buy something specific, whatever the senario, I need to go into town. I think that while I’m there, I might as well pick up something that I’ve been meaning to get, but putting off…oh and maybe go to the park to see the swans and ducks, just for fun. Of course, I’ve not long woken up and want to have a shower before I go, maybe I’ll wear that top I haven’t worn in a while…it needs ironing though…oh and on the way to town I’ll post that letter. It seems like a reasonable little outing, doesn’t it. The bus only takes about 10 minutes to get to and from town, oh I could probably get it all done, shower as well, in maybe just over 2 hours, if I take my time.

Reality is a very different story and that’s what I struggle to grasp. That’s what I struggle to get my head around – I forget that I can’t do things how I used to anymore.

I get a shower – I need help in and out of the shower and to get washed. 25 minutes just disappear. I’m exhaused after the shower, after trying desperately not to cry as the pain soars through my body, the water feels like a thousand nails hitting my skin and 20 minutes after I leave the shower, my leg is still bright red. I need help to get dressed…I’ll just wait a little while before I dry my hair…my arms hurt too much to do it right now. By the time I’m washed and dressed it’s already nearly an hour gone! I think I’ll give make up a miss today – I probably couldn’t put it on anyway…

OK, extra meds? Check. Phone? Check. TENS machine? Check. Extra battery? Check. Keys, money, bill…check, check, check. List of things I wanted to get done…erm, yes, that too. Oh and I’d better take that just incase….AAGGHHH!!! My arm is in spasm. Damn it hurts. Oh com on, why now?! I’m trying to do something! Please stop….the tears roll down my cheeks, unstoppable like lava from a volcano erupting. Half an hour later and I’m ready to go. Hurting immensly but ready to go. Guess this is taking longer than I anticipated – I should be alomost finished in town by now!

Off to the bus stop.  5 minutes later and a bus pulls up. Great. “Sorry luv, I’ve got too many prams on the bus, you’ll have to wait for the next one.” The driver tells me. I protest stating that wheelchairs have priority in the wheelchair bay – the sign there says so. “Sorry luv.” He says as he shrugs his shoulders, closes the door and drives off. I’m far from impressed. 10 minutes later there’s another bus and I finally board the bus.

Half way into the journey and I’m really fighting back the tears. The other passengers are staring at me pulling faces, clenching my eyes shut and grinding my teeth because of the pain. Please God, make it stop… I can’t take it anymore and have to get off the bus and take smoe more medication. I’m little over half way there. I decided to “walk” the rest of the way in my electric wheelchair. Nearly 3 hours since I started, I finally reach town. I hurt so much, I’m so tired from hurting and my hands aren’t being overly obedient, all I want to do is go home. I remind myself that I’ve made it this far, so I might as well do the things I came to do.

I go to the bank and pay the bill. The queue isn’t too long, but someone still manages to walk straight into my chair. My body spasms, the pain increases, I feel like I’m being stabbed by a billion tiny swords, penetrating deep into my skin and the burning just increases. I let out a little yelp and a cry, then try desperately to hide how much it hurts, trying to fight the tears from rolling down my cheeks.

I finally get served, I’m putting my purse back into my bag when I drop something. It simply falls through my hands as if my hands are water. The person that I’m with picks it up for me, – I can’t reach the floor without falling out of my wheelchair and even if I could, I’d probably not be able to pick it up anyway.

Off we go to the shop to pick up whatever it was I wanted. I rack my brains but I can’t think of what it is. I know which shop it is…I know what kind of item it is, but i can’t remember exactly what I wanted and I stutter and stumble trying to explain. I reach for the list in my bag and low and behold, I forgot to write it on. How could I be so silly? We go to the shop anyway and wander around, hoping to jog my memory. Nope, it’s not happening. After 15 minutes of aimless myandering in the shop, I finally give in and leave…frustrated. A few streets away and I remember…I remember what I wanted, it was a pyrex bowl set that was on special offer. So off we go to the shop again.

In the shop the shop assistant ignores me, talks to my partner and although they took the payment from myself, hands my partner the change. I’m livid. I tell the cashier that it was me they were serving, no one else, they took the payment from me and they should’ve given the change to me. She ignores me and starts serving the next customer, which makes me all the more angry and I leave the shop before I cause a scene or get hurt.

We’ve already been in town over an hour. I hurt so much, I’m hungry, I’m tired, I just want to go home, but I’m not sure that I can face the bus journey, so we decide to walk back. I feel guilty because I have the electric wheelchair so hills etc are no issue for me, but my partner is on foot and he’s done so much for me today already. We skip the park and walk home.

5 hours after I started – more than double the time that I anticipated, I’m almost home.

Sometimes I forget…sometimes I forget that I can’t do things how I used to.

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Insomnia

March 19th, 2010

Night SceneInsomnia…not being able to sleep… The world around you is sleeping. You look out of the window and all of the house lights in the street are off, it seems that everyone is sleeping. There’s nothing on TV. You’ve already surfed the internet, looked on www.fightingrsd.com/forum and catched up with all the new posts. You feel alone.

I wish that alone was all that I felt. My arm is throbbing. It feels like it’s in a vice being squeezed. It’s discoloured and swollen and I’m trying with all my might to take my mind away from the pain and obsurd things that I’m feeling in my arm. Oh my goodness, it feels like it’s engulfed in flames, yet if I touch it, it feels as if my arm is made of ice!

What would I do for a proper nights sleep? Right now, given that I’ve not had a proper nights sleep in so long, there’s not much that I wouldn’t do. I just want this all to stop. I sincerely want to cut my arm off, maybe that would finally make it stop. All of the pills and potions only do so much, all I want to do is make it stop!

Sadly I know that even if my arm was amputated, it may not make any difference at all, it may infact make it worse. I close my eyes, take deep breaths and slowly count to ten. Nope, nothing. I suppose it’s time for another DVD, hopefully I’ll be distracted from this hell that I’m living and fall asleep. I can’t concentrate on the film, but hopefully, with a little luck, I’ll fall asleep during the film.

I place my arm on a microbead cushion and press play on the DVD player, slowly sipping hot cocoa, waiting…and hoping…

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Competition

March 16th, 2010

Something that never ceases to confuse or amaze me, is how people like to make life a competition. I can understand being competitive at school, at work, at sports and so forth. The striving to be your best, is perfectly understandable. However there’s another side.

“I suffer more than you do!” is a phrase that I hear about every so often. It doesn’t matter who it’s directed at, but I do wonder where the competition is, in all of this? What’s the benefit of hurting or suffering more than someone else? Surely it doesn’t matter how much a person suffers in comparison to another person who is also suffering? Doesn’t it make sense to help each other overcome obstacles and discuss options like tips and tricks, on dealing with the trials of every day life?

Similarly, on occasion I hear of support groups, supposedly fighting for the same thing, bickering like school children among themselves. If they’re fighting for the same thing and discussing the same obstacles of everyday life with ways to overcome them, why fight each other too – it makes no sense at all and inevitably leaves someone looking very silly…

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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.

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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.

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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!

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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.

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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….

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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

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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.

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