My Mum used to say that my Dad (a former cross-country runner) would often wake her up in the middle of the night by running in his sleep. His legs and feet going like the clappers. When woken and asked to explain he would mumble something about running across the fields and ditches of his native East Anglia.
I used to think that was quite sweet, and in the same way as my pet cat flying off to chase mice in the sky, I often hope that the afterlife for my Dad might include a few lengthy runs particularly as he isn't as mobile as he used to be.
I was woken up last night. Even though I have been taking my amitriptyline pills for neuropathic pain, my legs and feet decided to ignore them and they kept me awake for a long time in the early hours.
It's hard to describe how neuropathic pain feels, and it's different for different people. Sometimes they feel as if my legs are made of sponge and they are gradually being wrung out. Sometimes it feels as though they want to curl and shrivel up like a burning match. Sometimes it feels as though a large concrete slab is being placed on them imperceptably slowly by just a micron or two every minute or so.
Last night it felt like they just wanted to detach themselves and run away, running to catch up with my Dad on his ploughed field.
Showing posts with label legs. Show all posts
Showing posts with label legs. Show all posts
Tuesday, 1 December 2009
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, 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, 4 June 2009
Yearly neurologist meeting - 2009
Yesterday, I saw my neurologist's registrar - Dr Somebodyorother plus one student.
I had to recap my entire MS history from Day 1 again. I always find it difficult to remember the relapses prior to diagnosis as I didn't recognise them for what they were at the time.
I did my usual set of tests. I had my reflexes tested, walk/limped from one line of old red tape stuck on the floor to another one and back while he timed me on his iphone, I walked an imaginary tightrope heel to toe, I read the eye chart, I resisted the pulling and pushing of my arms and legs, I had my eyes examined and I watched his finger move from left to right...
...my eyes were flickering...
"Do you want to come and have a look at this?" as he singled out my nystagmus to his student.
...and back again as his finger became two fingers as if he was making bunny ears behind an invisible head.
Back in the consultation room, my regular uber-neurologist breezed in with a student in tow. He flashed me a grin and told me how well I looked (see pet peeves part one) and leant against a bank of xray lightboxes with chin in hand as the registrar recounted his findings. At the mention of nystagmus, he lurched himself upright and held his biro vertically in front of my nose. I dutifully followed the pen, demonstrating my wonky eyes to the second student.
Excuse me while I digress - I have no idea if my nystagmus is a particularly textbook example or whether nystagmus cases are hard to find, but it is always singled out to the accompanying student. So if you are reading this blog and you are a neurology student (or otherwise), it will be quite easy for me to post a film of my oscillating eyes on this blog. If you would like me to do so leave a message in the comments and I will be happy to oblige.
He also noted my intranuclear opthalmoplegia, which his registrar had missed (my left eye moves a bit slower than my right).
Anyway, summarising the meeting:
- I have only had one minor relapse in the last year, so the medication (Rebif) is working and I can continue with it.
- An appointment is to be made at my local hospital, so they can try me with prismatic lensed spectacles that may correct my doublevision (no obligation to take them).
- I have regained my balance. Good old self-healing magical brain. Standing up straight with my eyes closed, I don't keel over and I can walk heel-to-toe across a room neither of which I could do a year ago.
- I need an extra blood test to see how my system is coping with the Beta Interferon
"You're doing very well" grinned my neurologist (cheerfully disregarding my mentioning pain and fatigue) before fielding a couple of my questions, shaking my hand and breezing out again.
So there you have it.
All being well, I won't see him for another year.
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.....
Monday, 27 April 2009
MS Awareness week - Limboland haiku sequence
Hello all
It is Multiple Sclerosis (MS) Awareness Week across the globe. To mark this, I have written the following haiku sequence.
Regular readers will know that I was diagnosed with Relapsing Remitting MS in 2008. Limboland was inspired by the journey to diagnosis.
Limboland
no hint of a smile -
for once my doctor says
"take it easy"
on the scan room ceiling
cherry blossom -
the staff retreat behind glass
not crying yet ...
your chin dimples
as you talk
diagnosis
I salute the magpie
anyway
on the news a terror attack ...
my leg
numb again
from a packed lift
a man on crutches
follows me to clinic
new year's eve
the bowl slips from my fingers...
smashes
Just a note on the cherry blossom haiku. Diagnosis of MS requires an MRI scan, but to eliminate other possible ailments including brain tumours an initial CT Scan is performed. This was described to me as being like sticking your head in a giant washing machine and I reckon that's a pretty good description.
I don't know if there is anything similar in other hospitals but at the Royal Hallamshire in Sheffield they have a light box on the ceiling of the scan room with an image of cherry blossom on it. I presume this is to calm the nerves while your head is x-rayed. Cherry blossom is an image often used in haiku, it normally signifies spring which in turn can also imply beginnings.
Limboland is also appearing somewhere on the MS Society website http://www.mssociety.org.uk/ and on my personal haiku blog: http://distantlightning.blogspot.com/
http://www.mstrust.org.uk/msawareness/
http://www.mssociety.org.uk/get_involved/campaigning/ms_week_2009.html
It is Multiple Sclerosis (MS) Awareness Week across the globe. To mark this, I have written the following haiku sequence.
Regular readers will know that I was diagnosed with Relapsing Remitting MS in 2008. Limboland was inspired by the journey to diagnosis.
Limboland
no hint of a smile -
for once my doctor says
"take it easy"
on the scan room ceiling
cherry blossom -
the staff retreat behind glass
not crying yet ...
your chin dimples
as you talk
diagnosis
I salute the magpie
anyway
on the news a terror attack ...
my leg
numb again
from a packed lift
a man on crutches
follows me to clinic
new year's eve
the bowl slips from my fingers...
smashes
Just a note on the cherry blossom haiku. Diagnosis of MS requires an MRI scan, but to eliminate other possible ailments including brain tumours an initial CT Scan is performed. This was described to me as being like sticking your head in a giant washing machine and I reckon that's a pretty good description.
I don't know if there is anything similar in other hospitals but at the Royal Hallamshire in Sheffield they have a light box on the ceiling of the scan room with an image of cherry blossom on it. I presume this is to calm the nerves while your head is x-rayed. Cherry blossom is an image often used in haiku, it normally signifies spring which in turn can also imply beginnings.
Limboland is also appearing somewhere on the MS Society website http://www.mssociety.org.uk/ and on my personal haiku blog: http://distantlightning.blogspot.com/
http://www.mstrust.org.uk/msawareness/
http://www.mssociety.org.uk/get_involved/campaigning/ms_week_2009.html
Monday, 6 April 2009
Bowed but unbroken
I'm on a long anticipated holiday in Cornwall - one of my favourite parts of the world. Visited the Eden Project today but managed to slip on some wooden edged steps (April showers). As I was carrying my youngest daughter at the time I could only let myself fall and I cracked my spine so hard on the steps I couldn't move or feel my legs for a while afterwards. My whole rib cage ached. Daughter unscathed except for the shock.
A couple of passers by asked if I was OK and I managed to sit upright and regain feeling in their company. I now have a massive bruise across my back and expect to stiffen up overnight.
Half an hour after the fall, I was OK again and enjoying the day but there was a moment where I thought I had broken my back so if all I suffer is a bruise and stiffness, I'll count it as a blessing.
PS - limited internet access - can read but can't tweet etc.
A couple of passers by asked if I was OK and I managed to sit upright and regain feeling in their company. I now have a massive bruise across my back and expect to stiffen up overnight.
Half an hour after the fall, I was OK again and enjoying the day but there was a moment where I thought I had broken my back so if all I suffer is a bruise and stiffness, I'll count it as a blessing.
PS - limited internet access - can read but can't tweet etc.
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.
Thursday, 15 January 2009
Relapse spotting
Well, I guess this goes to show how difficult it can be to spot a relapse, sometimes.
I spoke to H (my nurse) today about the optic neuritis and heavy legs that I have been experiencing over the last few days. She thought the optic neuritis sounded like I was experiencing a small relapse, but the heavy legs and the 'cactus gloves' I am wearing may be related to coming off Gabapentin.
I am to "take it easy and see how I get on"
I thought I would make a list of things that had flared up over the last month or so:
I spoke to H (my nurse) today about the optic neuritis and heavy legs that I have been experiencing over the last few days. She thought the optic neuritis sounded like I was experiencing a small relapse, but the heavy legs and the 'cactus gloves' I am wearing may be related to coming off Gabapentin.
I am to "take it easy and see how I get on"
I thought I would make a list of things that had flared up over the last month or so:
- optic neuritis - lights in my vision (currently) and pain when moving my eyes (last Friday to Sunday)
- stiff heavy legs - currently finding it difficult to walk (up hills especially)
- foot switching itself on and off repeatedly - hot then normal then hot etc. (before Christmas)
- the same foot going excessively cold
- occasional tinnitus - right ear (since early December)
- dizziness - no vertigo head rush, yet, but I lost my balance a couple of times today and either bumped into things or nearly fell over
- my head has gone tingly a couple of times
- I felt very lethargic on a number of occasions since the New Year, but nothing I would class as chronic fatigue
- an increase in the amount of insects who seem to want to escape from my feet
I can go to hospital to be checked over and prescribed more steroids if I need them. I don't really want to do that, though. H also advised that I take some time off if I feel any more crap than I do now, and I don't really see that happening either.
Strangely, as I typed this, I experienced a tightness across my chest that may or may not be the "MS hug."
Sunday, 11 January 2009
Relapse??
I'm a bit worried I might be starting to relapse again. My optic neuritis seems to have returned in my left eye - I have been having speckled lights in my vision and pain when looking round. So far, only one large white phosphene. The other day my head went tingly as I drove home from work and I've had the hot cold feet and quite a severe flare up of leg pain (the ants / woodlice trying to get out).
If it's still a concern on Monday, I will phone my nurse and ask her advice, though the optic neuritis doesn't (so far) seem as bad as 2004.
If it's still a concern on Monday, I will phone my nurse and ask her advice, though the optic neuritis doesn't (so far) seem as bad as 2004.
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.
Thursday, 18 December 2008
Weird new symptom alert - update
The on-and-off hot foot sensation from the other day has now been replaced with an ice cold foot. For most of my drive in to work this morning my right foot felt as if I had been kicking snow around with inadequate footwear on.
I worry about my right foot and leg. I often think that in the unlikely event that I "lose" a leg - it's going to be the right one. Bang go my childhood dreams of playing on the wing for Man City.
I know I have at least three large patches of myelin damage in my spinal cord - the one that causes L'hermitte's must have been subdued somewhat but seeing as I'm having bad pins and needles in both hands at the moment and a seriously fuzzy leg I'm wondering if the increased dose of Rebif (beta interferon) is having this effect. Another increase in dose next week - oh joy!
I worry about my right foot and leg. I often think that in the unlikely event that I "lose" a leg - it's going to be the right one. Bang go my childhood dreams of playing on the wing for Man City.
I know I have at least three large patches of myelin damage in my spinal cord - the one that causes L'hermitte's must have been subdued somewhat but seeing as I'm having bad pins and needles in both hands at the moment and a seriously fuzzy leg I'm wondering if the increased dose of Rebif (beta interferon) is having this effect. Another increase in dose next week - oh joy!
Monday, 15 December 2008
Weird new symptom alert!
I was lying in bed on Saturday morning, enjoying a rare lie-in (7.30!) when my right foot suddenly became hot - then it switched itself off again to it's normal temperature. It then switched itself on and off three or four more times instantly turning hot and then normal again until I decided to get up and fix breakfast.
It hasn't done it since, but this is a new one for me and I expect it will probably happen again at some point. The whole thing was very peculiar, but because I know the reasons why this sort of thing happens it doesn't freak me out.
When I first developed MS symptoms, I expected something a lot worse and I noticed every twitch of a muscle, every tingle, every hyper-sensitive patch on my body, but when I was given the label of MS that I could slap on everything I was experiencing, I was more able to cope.
It hasn't done it since, but this is a new one for me and I expect it will probably happen again at some point. The whole thing was very peculiar, but because I know the reasons why this sort of thing happens it doesn't freak me out.
When I first developed MS symptoms, I expected something a lot worse and I noticed every twitch of a muscle, every tingle, every hyper-sensitive patch on my body, but when I was given the label of MS that I could slap on everything I was experiencing, I was more able to cope.
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