Now I don't think I know anyone who enjoys going to hospital but there are some things that make the whole experience a bit more fun. I had such a moment recently.
The hospital I attend is Cork University Hospital so it's fair to assume there's going to be student doctors and nurses on every ward. I suffer from CIDP and that's pretty rare and because it is so rare I get my fair share of medical students that want to interview me or do a physical exam or whatever, any of which I have no problem with. One of the effects of my illness is that my reflex's don't really work, I think my doctor said they were about 10% of what they should be.
One day I was approached by two students who politely asked about my illness and if they could do a physical, to which I gladly agreed. They did all the usual stuff like 'squeeze my fingers' and 'lift this leg' 'lift that arm'. Last of all was the reflex test so I told them that mine were not what they should be. I lay back and the student hit just below my kneecap and nothing so he hit me again even harder to which his friend said 'can you get them?' With this the student said with a straight face 'hang on' and then blew on the end of his patella hammer and hit me even harder. Still nothing so he polished the end of the hammer on his white coat and hit me even harder. Then in shock he said 'I'm really sorry, did that hurt'. I was too busy laughing to care so I just said 'Did you really think that blowing and polishing the hammer was going to make a difference'
The student went red because he really didn't realise he had done that until it was pointed out to him. I've met that same student a lot in hospital and a lot more besides and every time I tell them to bring a patella hammer and every time I wait for one of them to do the magic blow on the end of it. Maybe one of them will find a cure for some awful illness or win a Nobel prize, if they do I'll be first in line to tell this story.
Tuesday, January 26, 2010
Monday, January 25, 2010
A day in the life
Now, I've decided to write what a day is like for me. I should point out that it might not be very interesting for most people what I do in a day but there are some people who ask me what I do and how I cope, if that's you then I hope this answers those questions.
My day doesn't start in the morning like everyone else, no my day starts the night before when I go to bed. That might not make sense but to explain I need to make sure I get a good night sleep or the following 24 hours are just a waste.
My clothes must be where I can reach them without getting off the bed and my walking stick or crutch on my right hand. I always brush my teeth within an inch of their lives. I lie down and then the twitching starts, not the kind that involves running around the countryside with a camera and a pair of binoculars. Every muscle in my legs and arms start to twitch and spasm and cramp without any warning. The only thing I can do is relax and try to drift off. If it's really bad (like last night) I can lie awake for hours and maybe get no sleep at all but that is very rare.
In the morning I wake and sometimes I forget that I can move now and it takes a minute for me to come to my senses, sometimes I forget that I've got CIDP and I get a kind of 'let myself fall for that old chestnut' feeling. I throw my legs out of the bed and get dressed in a sitting position. Then I have that deep breath moment and try to stand, most days I can but a very odd time I can't, I never know until I try. If I can stand then I reach for my cane and head for my next challenge, the stairs. Right hand on the banister left hand on the wall, the stick just gets thrown to the bottom. One step at a time slowly and concentrating on balance all the time to avoid failure, if I do fail on the stairs I go from step to step on my backside but that doesn't happen too often. My wheelchair is always at the bottom of the stairs facing me. It takes about 50 seconds to do the 11 steps. At the bottom I hop in the wheelchair and decide if I need it to get to the kitchen or not, more often than not I use the wheelchair and get to the kitchen, that's where the food is.
The kitchen is full of hazards for me. First off is the kettle, tea or coffee have to be made so if the kettle comes out of my hand the boiling water flows away from me, so I keep the spout as far from me as possible. I normally have a cereal for breakfast even though I love to cook I can't risk cooking anything when there's nobody in the house in case I fall or have a sudden relapse.
After breakfast I head for the sitting room and put the news on TV and turn on my laptop and read all the papers while dashing in and out of various social networks. That's where I stay until lunchtime. Sometimes people call but by and large I'm on my own.
At quarter to one I head back to the kitchen and make a couple of sandwiches for Louise (my wife) and me. I try to be as creative as possible and sometimes this involves cooking but that's okay because I know that if something was to happen then Louise will be here any minute. Lunch is rushed and after I go back to the sitting room and sit with the laptop and TV until Lauren (my daughter) comes in from school.
That's normally around half four or so. That's when I can come to life a bit more, when there is someone else in the house I feel more confident walking around because if I fall there is some one there to get help.
With Lauren in the house, or at least near the house I can crack on with dinner. I really love to cook and I always try to have a meal ready for the three of us at quarter to six when Lou walks in the door. After that I'm normally shattered but lately we've started going for a ramble up the town in the evening, it's nice to get out in the motor chair and see something else other than the four walls at home. When we come back from our 'walk', I try to catch up with any e-mails and bits and pieces that I've gotten during the day.
Next up is the biggest challenge, the stairs again and a shower before bed. Again I have to wait until there is someone in the house who could help me if I was to fall in the shower. All of this can take up to an hour because every step of the way and everything I reach for has to have total concentration, it's not always that long but when I'm on the edge of relapsing it would take an hour and shaving would be almost impossible.
I hope that this rather disjointed blog lets people know what my day is like and what it must be like for any number of people that have an illness or a disability.
I don't want anyone to think that my life is some kind of chore or that I'm not happy, I'm very happy with my life because I've seen and experienced a lot worse and coped just fine in my little bashed up mind. I've always said that you can only play the hand of cards that you're dealt and I'm happy with my lot.
My day doesn't start in the morning like everyone else, no my day starts the night before when I go to bed. That might not make sense but to explain I need to make sure I get a good night sleep or the following 24 hours are just a waste.
My clothes must be where I can reach them without getting off the bed and my walking stick or crutch on my right hand. I always brush my teeth within an inch of their lives. I lie down and then the twitching starts, not the kind that involves running around the countryside with a camera and a pair of binoculars. Every muscle in my legs and arms start to twitch and spasm and cramp without any warning. The only thing I can do is relax and try to drift off. If it's really bad (like last night) I can lie awake for hours and maybe get no sleep at all but that is very rare.
In the morning I wake and sometimes I forget that I can move now and it takes a minute for me to come to my senses, sometimes I forget that I've got CIDP and I get a kind of 'let myself fall for that old chestnut' feeling. I throw my legs out of the bed and get dressed in a sitting position. Then I have that deep breath moment and try to stand, most days I can but a very odd time I can't, I never know until I try. If I can stand then I reach for my cane and head for my next challenge, the stairs. Right hand on the banister left hand on the wall, the stick just gets thrown to the bottom. One step at a time slowly and concentrating on balance all the time to avoid failure, if I do fail on the stairs I go from step to step on my backside but that doesn't happen too often. My wheelchair is always at the bottom of the stairs facing me. It takes about 50 seconds to do the 11 steps. At the bottom I hop in the wheelchair and decide if I need it to get to the kitchen or not, more often than not I use the wheelchair and get to the kitchen, that's where the food is.
The kitchen is full of hazards for me. First off is the kettle, tea or coffee have to be made so if the kettle comes out of my hand the boiling water flows away from me, so I keep the spout as far from me as possible. I normally have a cereal for breakfast even though I love to cook I can't risk cooking anything when there's nobody in the house in case I fall or have a sudden relapse.
After breakfast I head for the sitting room and put the news on TV and turn on my laptop and read all the papers while dashing in and out of various social networks. That's where I stay until lunchtime. Sometimes people call but by and large I'm on my own.
At quarter to one I head back to the kitchen and make a couple of sandwiches for Louise (my wife) and me. I try to be as creative as possible and sometimes this involves cooking but that's okay because I know that if something was to happen then Louise will be here any minute. Lunch is rushed and after I go back to the sitting room and sit with the laptop and TV until Lauren (my daughter) comes in from school.
That's normally around half four or so. That's when I can come to life a bit more, when there is someone else in the house I feel more confident walking around because if I fall there is some one there to get help.
With Lauren in the house, or at least near the house I can crack on with dinner. I really love to cook and I always try to have a meal ready for the three of us at quarter to six when Lou walks in the door. After that I'm normally shattered but lately we've started going for a ramble up the town in the evening, it's nice to get out in the motor chair and see something else other than the four walls at home. When we come back from our 'walk', I try to catch up with any e-mails and bits and pieces that I've gotten during the day.
Next up is the biggest challenge, the stairs again and a shower before bed. Again I have to wait until there is someone in the house who could help me if I was to fall in the shower. All of this can take up to an hour because every step of the way and everything I reach for has to have total concentration, it's not always that long but when I'm on the edge of relapsing it would take an hour and shaving would be almost impossible.
I hope that this rather disjointed blog lets people know what my day is like and what it must be like for any number of people that have an illness or a disability.
I don't want anyone to think that my life is some kind of chore or that I'm not happy, I'm very happy with my life because I've seen and experienced a lot worse and coped just fine in my little bashed up mind. I've always said that you can only play the hand of cards that you're dealt and I'm happy with my lot.
Tuesday, January 19, 2010
In just one day.
In just one day I went from being able to cycle up a hill to not being able to cycle up a hill.
In just one day I went from being able to climb a stairs to not being able to climb a stairs.
In just one day I went from being able to pick up a cup to not being able to pick up a cup.
In just one day I went from being able to walk to not being able to walk.
All of these things didn't really happen in one day, they all happened over weeks and months. I went from a healthy and happy 40 year old to a quadriplegic in seven months but I remember the days that I had to call it quits on each of the actions that I could do one day and not the next.
I went for a cycle around Brighton on a fine January day and the next day I couldn't cycle at all. I haven't ridden a bike since. I wasn't feeling well up to that point and I didn't know it could have been my last bike ride, maybe if I knew I would have gone somewhere nicer that the seafront in Brighton.
I remember trying to climb a stairs and having to use the banister to pull myself up and the side wall to balance. That wasn't long after the cycle. I kind of guessed at that stage that there was something wrong with me and it wasn't just a bit of mild fatigue. It crept up on me and I thought 'hang on, I was able to climb that stairs yesterday without using the wall and the day before that without the banister'
I think I sat in the flat and got a bit scared. I hate stairs now, and steps.
I was having breakfast with my daughter and I couldn't pick up the cup to drink my tea. Mostly I'm a coffee in the morning type of man but this was tea. I sat at the table wondering how on earth I was going to do this, so I anchored my forearm on the edge of the table and managed to get enough leverage to get the cup to my mouth. From then on I drank everything through a straw. I wish I had made a nice fresh pot of coffee that day. I do now as often as I can.
One morning early I got off the couch I had been sleeping on and just about got to my feet. I took three steps to the hallway and called out for my daughter to get out of bed.Then I hit the floor, catching my arm on a radiator on the way down and ended up on the floor wondering how I was going to get up. I had fallen a lot in the previous months and every time it got harder and harder to get up. This time I didn't get up. I couldn't stand and I couldn't walk, my legs just gave up. They'd been giving up for a long time but this time they said 'nope, not another step'.
I lay there for quite a while and wasn't really sure how to react, maybe I was in shock. All I knew for sure was that my walks in the countryside were probably well behind me.
I didn't know then what kind of profound affect all this would have on me and every day I learn a bit more. I can walk a little bit now and pick up a mug of coffee and just about manage a stairs, but every thing I do I try to savour the moment because I never know if I'll be able to do it again.
In just one day I went from being able to climb a stairs to not being able to climb a stairs.
In just one day I went from being able to pick up a cup to not being able to pick up a cup.
In just one day I went from being able to walk to not being able to walk.
All of these things didn't really happen in one day, they all happened over weeks and months. I went from a healthy and happy 40 year old to a quadriplegic in seven months but I remember the days that I had to call it quits on each of the actions that I could do one day and not the next.
I went for a cycle around Brighton on a fine January day and the next day I couldn't cycle at all. I haven't ridden a bike since. I wasn't feeling well up to that point and I didn't know it could have been my last bike ride, maybe if I knew I would have gone somewhere nicer that the seafront in Brighton.
I remember trying to climb a stairs and having to use the banister to pull myself up and the side wall to balance. That wasn't long after the cycle. I kind of guessed at that stage that there was something wrong with me and it wasn't just a bit of mild fatigue. It crept up on me and I thought 'hang on, I was able to climb that stairs yesterday without using the wall and the day before that without the banister'
I think I sat in the flat and got a bit scared. I hate stairs now, and steps.
I was having breakfast with my daughter and I couldn't pick up the cup to drink my tea. Mostly I'm a coffee in the morning type of man but this was tea. I sat at the table wondering how on earth I was going to do this, so I anchored my forearm on the edge of the table and managed to get enough leverage to get the cup to my mouth. From then on I drank everything through a straw. I wish I had made a nice fresh pot of coffee that day. I do now as often as I can.
One morning early I got off the couch I had been sleeping on and just about got to my feet. I took three steps to the hallway and called out for my daughter to get out of bed.Then I hit the floor, catching my arm on a radiator on the way down and ended up on the floor wondering how I was going to get up. I had fallen a lot in the previous months and every time it got harder and harder to get up. This time I didn't get up. I couldn't stand and I couldn't walk, my legs just gave up. They'd been giving up for a long time but this time they said 'nope, not another step'.
I lay there for quite a while and wasn't really sure how to react, maybe I was in shock. All I knew for sure was that my walks in the countryside were probably well behind me.
I didn't know then what kind of profound affect all this would have on me and every day I learn a bit more. I can walk a little bit now and pick up a mug of coffee and just about manage a stairs, but every thing I do I try to savour the moment because I never know if I'll be able to do it again.
Monday, January 18, 2010
The view from my room
I've spent far too much time in hospital but it's not the worst place in the world. I've started calling Curk University Hospital my city residence and the room I'm given every time I call the penthouse suite. I'm kind of luckey and I allways seem to get a bed by the window and this is what I see.
It's not a bad view as hospital views go, most of the rest of this side only sees another part of the hospital but this room is at the very top and facing south. All day I watch the planes land and take off from Cork airport. It's a lot busier than I ever thought, big planes, little planes, cargo planes, helicopters, it's a great spot for a plane spotter. I really don't know one plane from another except the 737's that carried me so many times to and from England.
The hospital is on the edge of the city so I see a lot of fields and a few houses. There was a lot of cattle out grazing up untill winter when they must have been brought into winter housing. At night the houses light up and give a warm glow to the darkness.
There's a woodland between the last house and the fields which must act as a windbreak. I like scampring around woods and forests so if I can ever get some power into my legs I might head up there and see what the hospital looks like from up there.
To the south west there are even more fields but they stretch out as far as I can see like a patchwork quilt. As the winter came in they changed colour from greens and yellows to browns and greys. It's was like watching nature change pallets and start on a new canvase. When I couldn't move I used to stare off into the distance for hours on end and wonder what was waiting for me in the distance.
I like winter to be cold and harsh and unforgiving because I've allways believed that the snow and ice has a sort of clensing effect on the countryside. This winter has been hard, Cork City flooded and the snow came in heavy and hard for a few weeks. There was a lot of snowmen looking back at me from those fields.
This year I'll keep going to hospital and still look out that window into the distance and some day I'll head out there with my dog and a good coat, turn my face into the wind and walk through those fields.
It's not a bad view as hospital views go, most of the rest of this side only sees another part of the hospital but this room is at the very top and facing south. All day I watch the planes land and take off from Cork airport. It's a lot busier than I ever thought, big planes, little planes, cargo planes, helicopters, it's a great spot for a plane spotter. I really don't know one plane from another except the 737's that carried me so many times to and from England.
The hospital is on the edge of the city so I see a lot of fields and a few houses. There was a lot of cattle out grazing up untill winter when they must have been brought into winter housing. At night the houses light up and give a warm glow to the darkness.
There's a woodland between the last house and the fields which must act as a windbreak. I like scampring around woods and forests so if I can ever get some power into my legs I might head up there and see what the hospital looks like from up there.
To the south west there are even more fields but they stretch out as far as I can see like a patchwork quilt. As the winter came in they changed colour from greens and yellows to browns and greys. It's was like watching nature change pallets and start on a new canvase. When I couldn't move I used to stare off into the distance for hours on end and wonder what was waiting for me in the distance.
I like winter to be cold and harsh and unforgiving because I've allways believed that the snow and ice has a sort of clensing effect on the countryside. This winter has been hard, Cork City flooded and the snow came in heavy and hard for a few weeks. There was a lot of snowmen looking back at me from those fields.
This year I'll keep going to hospital and still look out that window into the distance and some day I'll head out there with my dog and a good coat, turn my face into the wind and walk through those fields.
Wednesday, January 13, 2010
The things I missed, I think.
It's hard to think about the things you'd miss if they were taken away because when we have all the things we need on a day to day basis we have no sense of perspective about what we should miss as opposed what we would really miss, if you kind of get me.
This little gem sort of jumped at me one day in hospital. I was lying on my bed unable to move anything from my kneck down and I thought 'what is the one thing I miss more than anything else?' Now my immediate reply should have been 'playing guitar' but that was so far back in my mind at that stage that I'd almost forgotton that it was something I did every day. And of course you'd think I should matbe say human contact but being a quadraplecic, trust me, you get all kinds of human contact that you havn't had since you were a baby. So as I lay there with the sun shining in the window I began to examine my senses. I could taste everything even though I had to be fed all the time. I could see and hear perfectly so DVD's and CD's were in plenty supply as was TV and other abbrievated electrical goods. Having spent so long in a hospital ward with five other menI was absolutely sure that my sense of smell wasn't affected, oh boy!!
That just left my sense of touch but I couldn't really test that because I couldn't move. It wasn't untill I came out of hospital that it dawned on me what I missed most.
That's when I realised what I really missed, the feeling of rain on my face. Normally we shield against it and cover ourselves and run from it but this time I just wanted to feel the thousands of prickly drops splash across my face and hands. It's maybe a funny thing to miss but I didn't know I missed it untill that moment, I didn't know what I really missed untill it was brought back to me. I think what I'm trying to say is that it's never the flatscreen TV or the MP3 phone with camera and optional web browser that we should appreciate but the smallest drop of rain that made this blogger feel human again
This little gem sort of jumped at me one day in hospital. I was lying on my bed unable to move anything from my kneck down and I thought 'what is the one thing I miss more than anything else?' Now my immediate reply should have been 'playing guitar' but that was so far back in my mind at that stage that I'd almost forgotton that it was something I did every day. And of course you'd think I should matbe say human contact but being a quadraplecic, trust me, you get all kinds of human contact that you havn't had since you were a baby. So as I lay there with the sun shining in the window I began to examine my senses. I could taste everything even though I had to be fed all the time. I could see and hear perfectly so DVD's and CD's were in plenty supply as was TV and other abbrievated electrical goods. Having spent so long in a hospital ward with five other menI was absolutely sure that my sense of smell wasn't affected, oh boy!!
That just left my sense of touch but I couldn't really test that because I couldn't move. It wasn't untill I came out of hospital that it dawned on me what I missed most.
A friend of mine called to the house and insisted that he take me out for a bit of a wander down the town, I hadn't done this in months. So I loaded into my wheelchair and off we went. Half way to our destination the skies opened and my friend cursed the heavens and the rain poured.
That's when I realised what I really missed, the feeling of rain on my face. Normally we shield against it and cover ourselves and run from it but this time I just wanted to feel the thousands of prickly drops splash across my face and hands. It's maybe a funny thing to miss but I didn't know I missed it untill that moment, I didn't know what I really missed untill it was brought back to me. I think what I'm trying to say is that it's never the flatscreen TV or the MP3 phone with camera and optional web browser that we should appreciate but the smallest drop of rain that made this blogger feel human again
Tuesday, January 12, 2010
So it's one year on since I first thought that I might be ill. I wasn't going to reflect on it until someone at the hospital said that it's good to look back so I could appreciate my improvement. I'm not really sure what he meant because I had only just met him and he didn't know whether I'd improved or not, I think he was on a lot of drugs.
I've always tried to keep myself fit without ever going down the 'body-beautiful' route. Sport has always been important to me and even though I never did win a 6 nations grand slam I did my small bit pushing around the scrums of different clubs week in week out
.
For me life has always been about today so it's not like I thought it would never happen to me but it just wouldn't happen today. Then of course it did happen, but over six or so months. It started with my legs going weak and feeling a bit tingly, the doctor said I might be run down. Next I was having trouble walking up the stairs and hills, the doctor said it might be something rheumatic. Three months in and my walk looked like I had on wooden legs and the doctor sent me to a neurologist. A month later and my arms were weak and my fingers wouldn't work.
Anyone who knows me knows that music means more to me than anything so me not able to play my guitar is about as bad as things could get for me. I remember playing a gig in Horsham (support to Seth Lakeman) and I had a feeling somewhere inside that this was the last gig I was going to play for a while. My legs could barely hold me up, my back ached because of my hunched walk, and I could just about hold down the chords on the guitar. Afterwards I hid in a backroom and was so physically and mentally wrecked that I just lay on the floor and really wanted to die there and then, not commit suicide you understand but just die and then the pain would stop and the mental torture would just go away. At this stage the doctors still had no clue what the hell was wrong with me.
All the time this was going on I had an endless stream of people who were self styled net-doctors, this resulted with me being told on a daily basis that I could have any number of horrible things wrong with me. I'm sure all these people were trying to help but really they didn't, not one bit, in fact they only succeeded in scaring me half to death every time I was told I could be dead in a few months.
By the time the doctors finally figured out everything I was unable to move anything from my kneck down, I had full feeling and sensation but couldn't move anything. I was not happy.
The condition I have is called C.I.D.P. and I'm not going to bore you with what all that means and the symptoms because you can just google it and find out.
Now one year on I don't feel too bad. After treatment I can walk a bit and best of all I can play guitar again. I have monthly relapses and need to go back to hospital every time for five or so days.
A friend of mine asked me if I felt cheated and the answer is no. I refuse to grouse or complain about my illness and I try to keep my day as full as possible. I kind of see it as a way of re-focusing my life and doing new things that I could never have done before. I want to do a degree and I want to write a lot more, I want to play lots more gigs and see a lot more shows. I don't believe in a god or an afterlife so the one life I have been given I'm going to enjoy just like always did and live for today because you never know what the doctor might say tomorrow
I've always tried to keep myself fit without ever going down the 'body-beautiful' route. Sport has always been important to me and even though I never did win a 6 nations grand slam I did my small bit pushing around the scrums of different clubs week in week out
.
For me life has always been about today so it's not like I thought it would never happen to me but it just wouldn't happen today. Then of course it did happen, but over six or so months. It started with my legs going weak and feeling a bit tingly, the doctor said I might be run down. Next I was having trouble walking up the stairs and hills, the doctor said it might be something rheumatic. Three months in and my walk looked like I had on wooden legs and the doctor sent me to a neurologist. A month later and my arms were weak and my fingers wouldn't work.
Anyone who knows me knows that music means more to me than anything so me not able to play my guitar is about as bad as things could get for me. I remember playing a gig in Horsham (support to Seth Lakeman) and I had a feeling somewhere inside that this was the last gig I was going to play for a while. My legs could barely hold me up, my back ached because of my hunched walk, and I could just about hold down the chords on the guitar. Afterwards I hid in a backroom and was so physically and mentally wrecked that I just lay on the floor and really wanted to die there and then, not commit suicide you understand but just die and then the pain would stop and the mental torture would just go away. At this stage the doctors still had no clue what the hell was wrong with me.
All the time this was going on I had an endless stream of people who were self styled net-doctors, this resulted with me being told on a daily basis that I could have any number of horrible things wrong with me. I'm sure all these people were trying to help but really they didn't, not one bit, in fact they only succeeded in scaring me half to death every time I was told I could be dead in a few months.
By the time the doctors finally figured out everything I was unable to move anything from my kneck down, I had full feeling and sensation but couldn't move anything. I was not happy.
The condition I have is called C.I.D.P. and I'm not going to bore you with what all that means and the symptoms because you can just google it and find out.
Now one year on I don't feel too bad. After treatment I can walk a bit and best of all I can play guitar again. I have monthly relapses and need to go back to hospital every time for five or so days.
A friend of mine asked me if I felt cheated and the answer is no. I refuse to grouse or complain about my illness and I try to keep my day as full as possible. I kind of see it as a way of re-focusing my life and doing new things that I could never have done before. I want to do a degree and I want to write a lot more, I want to play lots more gigs and see a lot more shows. I don't believe in a god or an afterlife so the one life I have been given I'm going to enjoy just like always did and live for today because you never know what the doctor might say tomorrow
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