There is a stand up routine by Sean Lock where he recounts being told off for swearing by belligerent airport staff. His exasperated reply finishes with "This is exactly the sort of occasion swearing was f***ing invented for!"
Excuse me a moment...
a$%e!... &u$%&!!... (%d%*!!!.... %^&*!! f&*^:~!!.... *()&*&^$%$"!!!!!!
There - out of my system...
No, wait, hang on...
%&^*£$^%$!!
There. Feel a bit better, now.
I went to see an orthoptist about my doublevision, nystagmus, intranuclear opthalmoplegia and oscillopsia the other day.
I spent about an hour undergoing various tests. I followed a torch with my eyes. I had various lenses passed in front of each of my eyes and I had to say when the image became double and single. I pointed at dots with a long stick (and missed). I looked at various patterns to find the hidden 3D shape and of course I read the all too familiar eye chart.
Things I didn't know before: I also have doublevision looking up to the right and my left eye doesn't pull in towards the nose as much as it should do.
I have been looking forward to my doublevision being sorted for the last year and a half. As I mentioned in my last post, this is the one constant symptom, the one that doesn't fade away and then come crashing back. The symptom that is constantly breathing down my shoulder reminding me I have MS and it is the symptom that spurred me on into visiting the GP in the first place.
It is also (as I screw up one eye to look at you) a symptom that makes me feel dizzy, tires me out, drags me down and makes me look like a weirdo. I was convinced that the magical people in the eye department of my local hospital would be able to build me prism lensed spectacles to straighten things out for me. Not to wear all the time, you understand, just when I'm at work, or in a meeting, or driving my car, or walking along the street. I'm not asking for much really. Just some semblance of normality.
"Sorry, there's nothing we can do..."
Apparently, they can't (or won't) correct doublevision unless it occurs in the primary position (straight ahead). Also, my eyesight is pretty good - I can read most of the bottom line on the eye chart and if I did have glasses, they would have to be plain glass and the prism lens would blur things a bit for me.
So there I was watching the orthoptist as he moved his head left and right to demonstrate how you look left and right.
Yes, I should be grateful for the fact that I can see, and yes, I should be grateful for the fact that I can see pretty well and yes, it could be a whole lot worse - a hell of a lot worse. I could have been maimed in an accident, I know. But days like this remind me that MS is a complete an utter uncurable bastard. Things will never be the same. I will never be able to look around with my eyes travelling the same speed again. I will never be able to look left and see a single image. I will never be able to look right and keep my eyes perfectly still. I will never be able to read a book without it tiring me out. Things will never be how they used to be.
So when someone tells you there is nothing they can do, that little ember of hope at the back of the hearth that you thought might be coaxed back to life with some newspaper and a bit of careful blowing, is snuffed out with a gallon of water.
And what makes it all so much worse is that I will probably look back on this day and think how lucky I was back then compared to how I am 'now'.
Doublevision is one of those symptoms that can come and go in Relapsing Remitting MS, but I'm pretty sure that after a year and a half we're not just talking about demyelination on the nerve controlling eye movement. I think there's been some permanent damage.
I have an appointment with an opthalmologist in a couple of weeks and they want to look at the back of my eyes and document the "state of things" I guess. They will probably also want to patronise me by telling me stuff I already know about nerve damage and so on.
So, having taken the knock and bottling up all the crestfallen feelings I'm back to the bustle of the hospital lobby. Past the people in Costa coffee. Skirting the guy with the mop and the couple with the walking frames. Through the automatic doors, past the A & E entrance, then the maternity wing with a handful of expectant mothers in dressing gowns, fags in hands.
Back to the car...
Negotiating the one-way system through the car parks...
Waiting for the ambulance to go past...
out onto the main road...
Whack the stereo on full blast to take my mind off things as I head back to town...
The music starts: "There's no escaping from / the man it seems that I've become..." *
... The grief.
* test your music trivia - identify the track and you may or (more likely) may not win a prize (not decided yet, but nothing big).
Showing posts with label fatigue. Show all posts
Showing posts with label fatigue. Show all posts
Thursday, 10 December 2009
Monday, 7 December 2009
Doublevision
Wahay! I am off to see an orthoptist tomorrow to talk doublevision.
Doublevision and eye movement problems in general have been my one constant since I had my last major relapse in 2008. My MS history is littered with symptoms and side effects that have come and gone or have fluctuated with other external factors such as stress, medication, temperature, exercise or pure bad luck. Doublevision has remained constant since the spring of 2008.
Just like the MS in general, it is a companion but not a friend. It is the doublevision that reminds me I have MS when the other symptoms are lying low for a bit. I also think I have the doublevision to thank for the diagnosis - if I didn't have it in the first place, I may not have made the fateful GP appointment. I would have probably lived with the tingling fingers, the fatigue, the occasional vertigo, even the pain for a bit longer before seeking medical advice.
Doublevision affects me only when I look left. From a single image looking straight ahead, two side-by-side images appear the instant I start looking left and the displacement increases the further I go. When I first discovered I had it, I tested it every breakfast-time by gradually looking left at two chimneys on the next street. These chimneys would eventually match up becoming one chimney with two TV aerials. It never got any worse, it never got any better. One and a half years on, it is still the same.
People ask me how I manage to drive with it. The answer is, I close one eye when looking left. Simple as that.
I find that I am constantly screwing up one eye in everyday situations, though, or I would have difficulty recognising people in the distance, crossing the road, participating in meetings and so on.
When I go out for a drink (I honestly don't drink very much), I makes me feel drunk/ill way before I should do.
It doesn't normally bother me. It's constancy means I have learned to live with it. But it does tire me out and this has an impact on my mood and fatigue levels.
There are two possible solutions. One is to wear an eye patch. The other one is to wear glasses with prism lenses. I have no idea what these spectacles look like, so I have the fear of becoming the kid with the sticking plaster holding together a pair of national health specs. But then again I don't fancy becoming Long John Silver either, therefore I have the orthoptist appointment tomorrow. It has been a long time coming and should hopefully have a positive impact on my quality of life.
A further appointment with an opthalmologist is scheduled for later this month.
Doublevision and eye movement problems in general have been my one constant since I had my last major relapse in 2008. My MS history is littered with symptoms and side effects that have come and gone or have fluctuated with other external factors such as stress, medication, temperature, exercise or pure bad luck. Doublevision has remained constant since the spring of 2008.
Just like the MS in general, it is a companion but not a friend. It is the doublevision that reminds me I have MS when the other symptoms are lying low for a bit. I also think I have the doublevision to thank for the diagnosis - if I didn't have it in the first place, I may not have made the fateful GP appointment. I would have probably lived with the tingling fingers, the fatigue, the occasional vertigo, even the pain for a bit longer before seeking medical advice.
Doublevision affects me only when I look left. From a single image looking straight ahead, two side-by-side images appear the instant I start looking left and the displacement increases the further I go. When I first discovered I had it, I tested it every breakfast-time by gradually looking left at two chimneys on the next street. These chimneys would eventually match up becoming one chimney with two TV aerials. It never got any worse, it never got any better. One and a half years on, it is still the same.
People ask me how I manage to drive with it. The answer is, I close one eye when looking left. Simple as that.
I find that I am constantly screwing up one eye in everyday situations, though, or I would have difficulty recognising people in the distance, crossing the road, participating in meetings and so on.
When I go out for a drink (I honestly don't drink very much), I makes me feel drunk/ill way before I should do.
It doesn't normally bother me. It's constancy means I have learned to live with it. But it does tire me out and this has an impact on my mood and fatigue levels.
There are two possible solutions. One is to wear an eye patch. The other one is to wear glasses with prism lenses. I have no idea what these spectacles look like, so I have the fear of becoming the kid with the sticking plaster holding together a pair of national health specs. But then again I don't fancy becoming Long John Silver either, therefore I have the orthoptist appointment tomorrow. It has been a long time coming and should hopefully have a positive impact on my quality of life.
A further appointment with an opthalmologist is scheduled for later this month.
Tuesday, 27 October 2009
Birthday hangover
It was my birthday at the weekend and now I'm hungover.
I must have had a good time... Hmmmm... Yes, I guess I did...
Saturday started by taking my eldest to her dance class and back. I started my pottery tuition in the afternoon and on Saturday evening, I ventured into Sheffield to see Reverend and the Makers play a storming hometown gig.
Sunday was my actual birthday, so I managed a little bit of a lie-in before bombardment by breakfast-in-bed wielding daughters. This was followed by a long trip to the supermarket. Then, picking up their Grandad en route, we visited one of the local parks' play areas where we had a go on the resident miniature train.
This was followed by a slap-up meal in a local eaterie, including an ice-cream dessert with a candle on top before a round-trip to show the girls Matlock illuminations.
Monday involved a day off work to do some much needed gardening, followed by helping my daughters decorate my birthday cake. By the evening, I was dropping off in my chair, so I had a brisk walk around the block to blow some life into me.
So, yes, a very enjoyable birthday... and now, even though I didn't drink a drop of alcohol, I have a hangover. A hangover caused by dragging a monster round with me all weekend. My head feels fuzzy, my hands and arms are buzzing, my legs feel like lead. I can't stop yawning after midday and I know I am going to struggle to keep awake after the girls' bed-times tonight.
I often hear people of "a certain age" claiming that "you're only as old as you feel," before twirling their umbrellas and tappity-tapping out a dance routine. If that's the case, I guess I have just reached 98, not 38.
STOP-PRESS: as I was typing this I recieved a phonecall from my local Occupational Therapist to say that I had been referred to her fatigue clinic. My first appointment is next week. The OT sounded very dour, like the last thing she wanted to do was see me, so I will keep you posted.
I must have had a good time... Hmmmm... Yes, I guess I did...
Saturday started by taking my eldest to her dance class and back. I started my pottery tuition in the afternoon and on Saturday evening, I ventured into Sheffield to see Reverend and the Makers play a storming hometown gig.
Sunday was my actual birthday, so I managed a little bit of a lie-in before bombardment by breakfast-in-bed wielding daughters. This was followed by a long trip to the supermarket. Then, picking up their Grandad en route, we visited one of the local parks' play areas where we had a go on the resident miniature train.
This was followed by a slap-up meal in a local eaterie, including an ice-cream dessert with a candle on top before a round-trip to show the girls Matlock illuminations.
Monday involved a day off work to do some much needed gardening, followed by helping my daughters decorate my birthday cake. By the evening, I was dropping off in my chair, so I had a brisk walk around the block to blow some life into me.
So, yes, a very enjoyable birthday... and now, even though I didn't drink a drop of alcohol, I have a hangover. A hangover caused by dragging a monster round with me all weekend. My head feels fuzzy, my hands and arms are buzzing, my legs feel like lead. I can't stop yawning after midday and I know I am going to struggle to keep awake after the girls' bed-times tonight.
I often hear people of "a certain age" claiming that "you're only as old as you feel," before twirling their umbrellas and tappity-tapping out a dance routine. If that's the case, I guess I have just reached 98, not 38.
STOP-PRESS: as I was typing this I recieved a phonecall from my local Occupational Therapist to say that I had been referred to her fatigue clinic. My first appointment is next week. The OT sounded very dour, like the last thing she wanted to do was see me, so I will keep you posted.
Friday, 9 October 2009
Experience of fatigue
Up to eighty-seven per cent of people with MS, including myself, experience fatigue at some point. It is important to us that people don’t think fatigue is the same as tiredness. It is the most draining experience imaginable and it can happen for no apparent reason.
I went to a talk by an occupational therapist the other night on fatigue and it’s management. As part of his presentation, he included quotes from some of the people with MS he has consulted with over the years.
I thought it would be useful to re-quote them here as I am sure these statements will resonate with the fatigued among us and go some way to help explain what it is like for others:
“Fatigue can literally reduce me to tears, for no reason, I just find I’m crying – it’s like the plug has been pulled out and my energy, almost my life feels like it is going down the drain…”
“I feel like I’m in a jail cell as I’m so tired all the time…”
“It feels as though my legs are full of lead, it’s literally like wading through treacle trying to do things…”
“It hits me like a wall and then I can’t do anything… There’s no real warning to it happening. Sometimes I’m not even sure if I’m awake.” (Oh boy, yes!)
“It’s hard to describe to someone that you’re feeling fatigued and tired when you’ve not actually done anything. I used to be so active.”
Prior to my diagnosis, when I was going through the darkest hours of a relapse, I had a number of afternoons at work where I had what can be best described as a waking sleep at my desk. It was deeply worrying to say the least and I remember the thought “What’s happening to me?” playing on a loop in my head.
Perhaps the hardest thing about fatigue is that it is invisible to everyone else. I’m not being lazy or unhelpful and I can still do everything I could do before, it is just that sometimes I can find everyday tasks exhausting.
Further information
I went to a talk by an occupational therapist the other night on fatigue and it’s management. As part of his presentation, he included quotes from some of the people with MS he has consulted with over the years.
I thought it would be useful to re-quote them here as I am sure these statements will resonate with the fatigued among us and go some way to help explain what it is like for others:
“Fatigue can literally reduce me to tears, for no reason, I just find I’m crying – it’s like the plug has been pulled out and my energy, almost my life feels like it is going down the drain…”
“I feel like I’m in a jail cell as I’m so tired all the time…”
“It feels as though my legs are full of lead, it’s literally like wading through treacle trying to do things…”
“It hits me like a wall and then I can’t do anything… There’s no real warning to it happening. Sometimes I’m not even sure if I’m awake.” (Oh boy, yes!)
“It’s hard to describe to someone that you’re feeling fatigued and tired when you’ve not actually done anything. I used to be so active.”
Prior to my diagnosis, when I was going through the darkest hours of a relapse, I had a number of afternoons at work where I had what can be best described as a waking sleep at my desk. It was deeply worrying to say the least and I remember the thought “What’s happening to me?” playing on a loop in my head.
Perhaps the hardest thing about fatigue is that it is invisible to everyone else. I’m not being lazy or unhelpful and I can still do everything I could do before, it is just that sometimes I can find everyday tasks exhausting.
Further information
- Fatigue factsheet (MS Trust)
- Living with fatigue (MS Trust)
- MS Essentials: Fatigue (MS Society)
Friday, 14 August 2009
ffffffaaaaaaaatiiiiiiiiiiiiguuuuuuueeeeeeeee...... er.. [ctrl-alt-del] Damn!.. Didn't work.
I have been reading a recent issue of ms matters (quarterly MS Society magazine). It had invited readers as part of MS Week, what they thought was the most common misconceptions around the disease - usual stuff - wheelchairs; appearing to look well etc.
One of the more common misconceptions centred around fatigue, how it is generally percieved as being a bit tired or even plain laziness.
The only way I can describe full-on MS fatigue is, imagine you are working on a computer and you want to install a new program or you are downloading several megabytes of information and you PC crashes. Everything freezes, the egg-timer doesn't look like it is ever going to be anything other than that indefinitely.
Having MS fatigue is just like that - a sudden brain-crash. Nothing works. I have been jolted 'awake' from such moments when I have realised that I have just spent a period of time (seconds? minutes?) where I have been thinking zilch, nada, nothing at all - a completely empty thought process. I just didn't seem to have the energy to think. While that's quite a scary thing to realise, it's even scarier to feel your mind sliding back into that position again only seconds later. It's like my brain has been determined to shut itself down, but without the luxury of a ctrl-alt-del.
Of course, that's the mental side of it. Physically, it's like being in a four-legged race with both legs strapped to sumo wrestlers.
Right - now I'm off on my holidays. Going to do battle with hot weather.
One of the more common misconceptions centred around fatigue, how it is generally percieved as being a bit tired or even plain laziness.
The only way I can describe full-on MS fatigue is, imagine you are working on a computer and you want to install a new program or you are downloading several megabytes of information and you PC crashes. Everything freezes, the egg-timer doesn't look like it is ever going to be anything other than that indefinitely.
Having MS fatigue is just like that - a sudden brain-crash. Nothing works. I have been jolted 'awake' from such moments when I have realised that I have just spent a period of time (seconds? minutes?) where I have been thinking zilch, nada, nothing at all - a completely empty thought process. I just didn't seem to have the energy to think. While that's quite a scary thing to realise, it's even scarier to feel your mind sliding back into that position again only seconds later. It's like my brain has been determined to shut itself down, but without the luxury of a ctrl-alt-del.
Of course, that's the mental side of it. Physically, it's like being in a four-legged race with both legs strapped to sumo wrestlers.
Right - now I'm off on my holidays. Going to do battle with hot weather.
Monday, 13 July 2009
How deep is remission?
Someone once said to me "MS is a companion, but not a friend."
These words ring true. I have been in remission for a while now, but I still haven't shaken most of the symptoms. The dizziness and fatigue have been pushed into the background but they grumble along, just to let me know they are still lurking away.
The tingling fingers and leg pain are still there as well, but there will be a gap of five minutes or so every now and then when my hands feel "normal", and the crushing and squeezing in my feet and calves won't start until later in the evening.
The double-vision is ever-present and consistent though, so it is this that I use, just to pinch myself that this is really happening to me. Let's just look left for a second, I tell myself... yes, two plant-pots instead of one.
Being told you have MS is so surreal that when symptoms are on a back burner and I feel good about myself, I feel the need for a reality check.
You may ask why. Why not just enjoy the moment? I think the answer is that if all my symptoms disappeared completely, I would forever be paranoid that there was a big attack just around the corner, waiting to take me by surprise. Checking that everything is still going wrong in it's usual way, ensures that I get some constancy and I have something that I have the illusion of keeping in check.
Then of course, there are the times when I forget to take my tablets for a few days and it feels like I'm holding a cactus anyway.
This weekend was a mad one: jobs to do, daughters to amuse etc. On top of all this the weather was warm and muggy and I came down with a head cold which screwed me up for long stretches of the day. There were a couple of times when I simply couldn't stand up. And as I type this, I am battling with drooping eyelids and a brain determined to shut itself down.
I guess there is no easy way to guage where remission begins and relapse ends as everything is there still - making it's presence felt. The terrorist cell that operates in my central nervous system is currently doing a woollens wash, with their balaclavas probably just starting the spin cycle.
The next move they make could be tomorrow or it could be in twenty years time.
Whenever it happens, I like to think that I will be ready psychologically.
These words ring true. I have been in remission for a while now, but I still haven't shaken most of the symptoms. The dizziness and fatigue have been pushed into the background but they grumble along, just to let me know they are still lurking away.
The tingling fingers and leg pain are still there as well, but there will be a gap of five minutes or so every now and then when my hands feel "normal", and the crushing and squeezing in my feet and calves won't start until later in the evening.
The double-vision is ever-present and consistent though, so it is this that I use, just to pinch myself that this is really happening to me. Let's just look left for a second, I tell myself... yes, two plant-pots instead of one.
Being told you have MS is so surreal that when symptoms are on a back burner and I feel good about myself, I feel the need for a reality check.
You may ask why. Why not just enjoy the moment? I think the answer is that if all my symptoms disappeared completely, I would forever be paranoid that there was a big attack just around the corner, waiting to take me by surprise. Checking that everything is still going wrong in it's usual way, ensures that I get some constancy and I have something that I have the illusion of keeping in check.
Then of course, there are the times when I forget to take my tablets for a few days and it feels like I'm holding a cactus anyway.
This weekend was a mad one: jobs to do, daughters to amuse etc. On top of all this the weather was warm and muggy and I came down with a head cold which screwed me up for long stretches of the day. There were a couple of times when I simply couldn't stand up. And as I type this, I am battling with drooping eyelids and a brain determined to shut itself down.
I guess there is no easy way to guage where remission begins and relapse ends as everything is there still - making it's presence felt. The terrorist cell that operates in my central nervous system is currently doing a woollens wash, with their balaclavas probably just starting the spin cycle.
The next move they make could be tomorrow or it could be in twenty years time.
Whenever it happens, I like to think that I will be ready psychologically.
Thursday, 18 June 2009
One year on ...
Today is the first anniversary of my diagnosis (see MS History - part two).
Health professional bodycount so far.
Starting with the first GP visit last year, the bodycount is as follows
Symptom recap:
Current symptoms:
Health professional bodycount so far.
Starting with the first GP visit last year, the bodycount is as follows
- GPs 4
- Practice Nurses 2
- MS nurse 1
- Ward nurse 1
- Occupational Health nurse 1
- Phlebotomists 6 (estimate)
- Physiotherapists 1
- Neurologists 5
- Neuro-psychologists 2
- Radiologists 4
Symptom recap:
Current symptoms:
- mild optic neuritis (since Jan '09)
- doublevision / nystagmus / intra-nuclear opthalmoplegia / oscillopsia
- fatigue
- tingling / pins and needles
- neuropathic pain in legs
Symtoms that have cleared up for now:
- L'Hermitte's sign
- vertigo
- muscle weakness
- involuntary muscle movement
Tuesday, 2 June 2009
Neuro appointment
Off to the big city to see my neurologist tomorrow.
This will be my first annual check-up, so I am not sure what it will entail. My guess is that it will involve the usual tests to see if there has been any change since the last time I saw him plus a discussion about the medications I am taking.
I have been a bit flaky this week, with the heat - I had a bad spell of vertigo while playing with my youngest the other afternoon and I have had background dizziness since. On top of that, a few weird sensations across my body and the fatigue cranked up a few notches.
So I should appear nice and rough for him tomorrow.
This will be my first annual check-up, so I am not sure what it will entail. My guess is that it will involve the usual tests to see if there has been any change since the last time I saw him plus a discussion about the medications I am taking.
I have been a bit flaky this week, with the heat - I had a bad spell of vertigo while playing with my youngest the other afternoon and I have had background dizziness since. On top of that, a few weird sensations across my body and the fatigue cranked up a few notches.
So I should appear nice and rough for him tomorrow.
Wednesday, 20 May 2009
weirdness
been quite stable for ages - just the come and go of pain and fatigue.
Today, I feel a bit weird.
It feels as if the side of my head is undulating and my right leg feels a bit weak - definitely something up, will monitor. May go away in a bit. Come to think of it - this morning my foot felt ice cold.
Hmmmm.....
Today, I feel a bit weird.
It feels as if the side of my head is undulating and my right leg feels a bit weak - definitely something up, will monitor. May go away in a bit. Come to think of it - this morning my foot felt ice cold.
Hmmmm.....
Saturday, 2 May 2009
The long road to fitness
I went for a run this evening out on the moors. There's a triangle of road that is exactly a mile round so it's easy to assess how (un)fit I am.
I hit the MS wall at one mile. Uhthoff not far behind - my eyes starting to play tricks. I just couldn't lift my feet at all.
Next time I go out, I will aim for two miles.
Two years ago, I was going out for two five mile runs every week, involving hill climbs, the lot. I also wondered why I couldn't see properly as I was running or why my leg was going numb in the shower afterwards.
I feel surprisingly un-fatigued now and it's quite late. Just sitting in my tingly cloud. Must try to go out again before my personal trainer comes on Thursday.
I hit the MS wall at one mile. Uhthoff not far behind - my eyes starting to play tricks. I just couldn't lift my feet at all.
Next time I go out, I will aim for two miles.
Two years ago, I was going out for two five mile runs every week, involving hill climbs, the lot. I also wondered why I couldn't see properly as I was running or why my leg was going numb in the shower afterwards.
I feel surprisingly un-fatigued now and it's quite late. Just sitting in my tingly cloud. Must try to go out again before my personal trainer comes on Thursday.
Monday, 23 March 2009
I'm in pain...
It's not pain as you would conventionally know it and it's really difficult to describe the sensation. My feet and lower legs feel like they want to shrivel up and shrink into themselves with occasional stabs of more conventional pain from my toes. I used to describe it as a crawling sensation, but that doesn't do it justice, it is more like my calves and feet are sponges that
someone is gradually wringing out.
I have had this a while, probably a couple of years and the pain is there all the time. It normally causes what I would term chronic discomfort. In the last seven days, however, it has been flaring up regularly into toe-curling proportions. It will gradually get worse for a few hours later in the day. It can start at lunchtime or in the evening and progresses to become really debilitating. The only thing that provides relief is if I get up and walk around and I often imagine that my legs want to break away and run off by themselves. I guess it also gets worse the hotter or more fatigued I get.
Conventional painkillers - ibuprofen, paracetamol etc - are no good. I'm not keen on taking any new drugs after the experience I had with Gabapentin, so I'm going to see my GP in the morning if there is anything I can do or take for any relief.
This was written while screwing my face into contortions. Apologies if it's rubbish.
someone is gradually wringing out.
I have had this a while, probably a couple of years and the pain is there all the time. It normally causes what I would term chronic discomfort. In the last seven days, however, it has been flaring up regularly into toe-curling proportions. It will gradually get worse for a few hours later in the day. It can start at lunchtime or in the evening and progresses to become really debilitating. The only thing that provides relief is if I get up and walk around and I often imagine that my legs want to break away and run off by themselves. I guess it also gets worse the hotter or more fatigued I get.
Conventional painkillers - ibuprofen, paracetamol etc - are no good. I'm not keen on taking any new drugs after the experience I had with Gabapentin, so I'm going to see my GP in the morning if there is anything I can do or take for any relief.
This was written while screwing my face into contortions. Apologies if it's rubbish.
Tuesday, 17 February 2009
Reading and MS
I used to read a book a week. Every lunchtime, I'd grab some fresh air and sit by the canal with the latest piece of weirdness that I'd picked up at Waterstones. Every evening I'd lounge with my face buried between the pages while my wife sat next to me watching telly.
That all disintegrated five years ago at the same time as my first major MS relapse. I had a stressful time of it, working in a new job that I hated and a newborn baby waiting for me at home. The stress probably triggered the relapse but I didn't really have the time to read anything in the evening, anyway.
These days, I really like the idea of reading but find that I simply can't. My MS makes it difficult to concentrate when I get tired and at the end of a day spent in front of a computer screen, my eyes will jump around. Any attempt to read more than the few pages I read to my daughter before bedtime requires great effort and sends me to sleep and the very prospect of reading makes me feel tired.
I have tended to substitute for it by immersing myself in films instead.
I am wondering if graphic novels might be a way of re-building my reading stamina. If I only have to read dialogue and the odd caption, it may take a lot of the fatigue out of reading and restore the enjoyment of a good book. It is something I intend to explore.
That all disintegrated five years ago at the same time as my first major MS relapse. I had a stressful time of it, working in a new job that I hated and a newborn baby waiting for me at home. The stress probably triggered the relapse but I didn't really have the time to read anything in the evening, anyway.
These days, I really like the idea of reading but find that I simply can't. My MS makes it difficult to concentrate when I get tired and at the end of a day spent in front of a computer screen, my eyes will jump around. Any attempt to read more than the few pages I read to my daughter before bedtime requires great effort and sends me to sleep and the very prospect of reading makes me feel tired.
I have tended to substitute for it by immersing myself in films instead.
I am wondering if graphic novels might be a way of re-building my reading stamina. If I only have to read dialogue and the odd caption, it may take a lot of the fatigue out of reading and restore the enjoyment of a good book. It is something I intend to explore.
Monday, 5 January 2009
So long Gabapentin!
With the backing of my GP, I have ditched Gabapentin.
It has been making me feel crap for a while, now. The main side effects being fatigue and hallucinations. I was starting to fall asleep by 7pm every day. As an experiment, I tried a couple of days over Christmas without taking the pills and I instantly felt better. I took my last pill three days ago and my wife has since remarked that I look a lot better and I am chirpier in the mornings.
It seems to me that while G didn't rid me of symptoms completely, it must have had some dampening effect. My hands, feet and leg feel three times as bad as they did a week ago, and my calves and feet were excruciatingly crawly last night but - you know what? I'd rather have that than the side-effects.
Now I can be more in tune with how my body is feeling, particularly as a lot of G's side-effects mirror (and mask) general MS symptoms anyway.
It has been making me feel crap for a while, now. The main side effects being fatigue and hallucinations. I was starting to fall asleep by 7pm every day. As an experiment, I tried a couple of days over Christmas without taking the pills and I instantly felt better. I took my last pill three days ago and my wife has since remarked that I look a lot better and I am chirpier in the mornings.
It seems to me that while G didn't rid me of symptoms completely, it must have had some dampening effect. My hands, feet and leg feel three times as bad as they did a week ago, and my calves and feet were excruciatingly crawly last night but - you know what? I'd rather have that than the side-effects.
Now I can be more in tune with how my body is feeling, particularly as a lot of G's side-effects mirror (and mask) general MS symptoms anyway.
Wednesday, 17 December 2008
Life with MS - Part One - Symptoms
I don't want to come over all "woe is me" because there are plenty of people out there on the internet trying to out-do each other with their bad symptoms and there are many others with MS who have it much worse than I do (my old neighbour who also has MS, doesn't recognise me now when I see her).
I thought for the purposes of this blog that it might be useful to document some of the symptoms I have experienced both now and in the past to give readers some idea of what it is like to have MS. Please note: this list does not include the marvellous array of drug side-effects. More on those later.
Symptoms happening now:
Doublevision (since March 2008)
when I look left I see two of everything side by side. Simple as that. The more I look left, the bigger the displacement between images. Makes crossing the road and recognising people in the street difficult. Constantly closing one eye takes it's toll too, in terms of fatigue and people thinking you are crazy.
Nystagmus (since summer 2008)
When I look right, I get nystagmus. My eyes flicker and won't keep still. It gets worse if I'm tired or have done some exercise and I can sometimes get jumpy eyes looking straight ahead. It makes reading and watching telly very tiring and I don't read as much these days.
Intranuclear Opthalmoplegia (since March 2008)
Looking left to right or right to left my eyes travel at slightly different speeds so it takes time for the two images to match up when looking right. Things can look a bit trippy when glancing round all over the place.
Oscillopsia (since 2007 or earlier)
my vision jumps around all over the place if I am running or walking strenuously - a bit like running with a video camera.
Pins and needles (intermittent until March 2008 and constant since then)
I get tingling sensations in my fingertips constantly. Sometimes it subsides to a faint tingle. Once or twice I have had a window of half an hour or so when they have disappeared completely (the drugs working). Mostly I get the electric tingling sensation in my fingers only, but it can spread to my hands and even my forearms. I also get these sensations in my feet, particularly my right foot. My right leg feels fuzzy for most of the time and walking can be troublesome on a bad day. I have numb patches on my right foot. This all gets worse if hot or tired. Also according to a 2004 diary entry - I had a week where half my head had pins and needles.
Bladder problems (not sure since when)
I sometimes find it hard to go. I don't always fully empty my bladder - I simply can't - and I can need to go to the loo several times during the night giving me a disturbed night's sleep.
Cognitive Problems (not sure since when)
I have difficulty with concentration and short term memory - a particular problem with routine tasks, such as making payments to the child-minder, credit cards etc. My mind can wander in the middle of conversations as well and I lose the thread of.... erm... ...anyway I have an old pre-diagnosis diary entry where I thought my memory and concentration had improved since taking Omega 3 tablets, but I was probably documenting a remission period.
Pain (not sure since when)
Apart from the pins and needles, I get sharp shooting pains from my finger tips occasionally. The worst pain I get is a weird cramping sensation in my legs which feels like insects (ants in my imagination) moving around under the skin. This is unbelievably uncomfortable and when it happens I can't keep still and I can't relax. This happens almost daily and can start as early as mid-day.
Fatigue (since March 2008, but also during hot days in 2007)
Like someone has taken my battery out. I had this at work once and found my mind blank as if I was sleeping with my eyes open. It happens intermittently and when it does I might as well be made of concrete. I will just want to sleeeep.
Other symptoms:
Stiffness / Muscle spasm (Spring 2008)
I had a problem with this in the spring of 2008. I was an old man for three days - stiff as a board. I found it very difficult to move. It coincided with having hives - I think I had an allergy to some washing powder which brought this on. I also had involuntary movement of my calf muscles in March 2008 - in a relaxed state they were moving and twitching all over the place.
Optic neuritis (March/April 2004)
Flickering lights in my vision. Some pain in my eyes when looking round. Flashes of milky white light in my vision when looking round in the dark.
Headaches (July 2004)
I reported in my diary of the time that I had a headache that had lasted for four weeks. Of course, I could have had any number of MS induced headaches, but when one lasts for four weeks, it's a dead cert.
L'hermitte's sign (March 2008 to Autumn 2008)
Placing my chin on my chest created an electric shock sensation travelling down my back and into my thighs, or, on a good day, like someone pulling a tickly, twiggy branch up my back. I think drug therapy may have cleared this one up for now.
Vertigo (2004 to 2008)
An intermittent symptom - it comes and goes. I felt a mild wave of giddiness the other day when I was bending down for something, but at it's worst vertigo can make the whole world spin and induce a feeling of seasickness. Even turning over in bed can make me lose my balance completely and I have to sit up to regain my bearings. In 2004 and 2007, this was one of the major symptoms I had to deal with and I spent a night of hell intermittently spinning and vomiting in 2007. I also used to walk into the walls along the long corridors at work. It's very unpleasant - I would rather have doublevision over this any day.
Ultra-sensitivity (pre-2007 to 2008)
I have patches of skin that can be ultra-sensitive and uncomfortably ticklish.
So there you go. Quite a wide range of stuff, sensory and visual mainly.
I guess since diagnosis I am more aware of everything that is going on, so I may have missed out a whole heap of weirdness that has come and gone over the last few years. Now I am on beta interferon, the length of time between relapses should lengthen, but I should be able to recognise when one starts when new symptoms start appearing or old ones start re-appearing and I will document it here.
I thought for the purposes of this blog that it might be useful to document some of the symptoms I have experienced both now and in the past to give readers some idea of what it is like to have MS. Please note: this list does not include the marvellous array of drug side-effects. More on those later.
Symptoms happening now:
Doublevision (since March 2008)
when I look left I see two of everything side by side. Simple as that. The more I look left, the bigger the displacement between images. Makes crossing the road and recognising people in the street difficult. Constantly closing one eye takes it's toll too, in terms of fatigue and people thinking you are crazy.
Nystagmus (since summer 2008)
When I look right, I get nystagmus. My eyes flicker and won't keep still. It gets worse if I'm tired or have done some exercise and I can sometimes get jumpy eyes looking straight ahead. It makes reading and watching telly very tiring and I don't read as much these days.
Intranuclear Opthalmoplegia (since March 2008)
Looking left to right or right to left my eyes travel at slightly different speeds so it takes time for the two images to match up when looking right. Things can look a bit trippy when glancing round all over the place.
Oscillopsia (since 2007 or earlier)
my vision jumps around all over the place if I am running or walking strenuously - a bit like running with a video camera.
Pins and needles (intermittent until March 2008 and constant since then)
I get tingling sensations in my fingertips constantly. Sometimes it subsides to a faint tingle. Once or twice I have had a window of half an hour or so when they have disappeared completely (the drugs working). Mostly I get the electric tingling sensation in my fingers only, but it can spread to my hands and even my forearms. I also get these sensations in my feet, particularly my right foot. My right leg feels fuzzy for most of the time and walking can be troublesome on a bad day. I have numb patches on my right foot. This all gets worse if hot or tired. Also according to a 2004 diary entry - I had a week where half my head had pins and needles.
Bladder problems (not sure since when)
I sometimes find it hard to go. I don't always fully empty my bladder - I simply can't - and I can need to go to the loo several times during the night giving me a disturbed night's sleep.
Cognitive Problems (not sure since when)
I have difficulty with concentration and short term memory - a particular problem with routine tasks, such as making payments to the child-minder, credit cards etc. My mind can wander in the middle of conversations as well and I lose the thread of.... erm... ...anyway I have an old pre-diagnosis diary entry where I thought my memory and concentration had improved since taking Omega 3 tablets, but I was probably documenting a remission period.
Pain (not sure since when)
Apart from the pins and needles, I get sharp shooting pains from my finger tips occasionally. The worst pain I get is a weird cramping sensation in my legs which feels like insects (ants in my imagination) moving around under the skin. This is unbelievably uncomfortable and when it happens I can't keep still and I can't relax. This happens almost daily and can start as early as mid-day.
Fatigue (since March 2008, but also during hot days in 2007)
Like someone has taken my battery out. I had this at work once and found my mind blank as if I was sleeping with my eyes open. It happens intermittently and when it does I might as well be made of concrete. I will just want to sleeeep.
Other symptoms:
Stiffness / Muscle spasm (Spring 2008)
I had a problem with this in the spring of 2008. I was an old man for three days - stiff as a board. I found it very difficult to move. It coincided with having hives - I think I had an allergy to some washing powder which brought this on. I also had involuntary movement of my calf muscles in March 2008 - in a relaxed state they were moving and twitching all over the place.
Optic neuritis (March/April 2004)
Flickering lights in my vision. Some pain in my eyes when looking round. Flashes of milky white light in my vision when looking round in the dark.
Headaches (July 2004)
I reported in my diary of the time that I had a headache that had lasted for four weeks. Of course, I could have had any number of MS induced headaches, but when one lasts for four weeks, it's a dead cert.
L'hermitte's sign (March 2008 to Autumn 2008)
Placing my chin on my chest created an electric shock sensation travelling down my back and into my thighs, or, on a good day, like someone pulling a tickly, twiggy branch up my back. I think drug therapy may have cleared this one up for now.
Vertigo (2004 to 2008)
An intermittent symptom - it comes and goes. I felt a mild wave of giddiness the other day when I was bending down for something, but at it's worst vertigo can make the whole world spin and induce a feeling of seasickness. Even turning over in bed can make me lose my balance completely and I have to sit up to regain my bearings. In 2004 and 2007, this was one of the major symptoms I had to deal with and I spent a night of hell intermittently spinning and vomiting in 2007. I also used to walk into the walls along the long corridors at work. It's very unpleasant - I would rather have doublevision over this any day.
Ultra-sensitivity (pre-2007 to 2008)
I have patches of skin that can be ultra-sensitive and uncomfortably ticklish.
So there you go. Quite a wide range of stuff, sensory and visual mainly.
I guess since diagnosis I am more aware of everything that is going on, so I may have missed out a whole heap of weirdness that has come and gone over the last few years. Now I am on beta interferon, the length of time between relapses should lengthen, but I should be able to recognise when one starts when new symptoms start appearing or old ones start re-appearing and I will document it here.
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