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Peripheral Neuropathy - Part 2

Dave

Active member
Messages
245
It's been almost 2 years since I was diagnosed with this ailment and I'm happy to say that, so far, I've been able to manage it reasonably well. I'm very close to the maximum dose of my medication (currently on 450mg a day with a max of 600mg) and I'd like to keep it that way for at least another year and then take stock of where I'm at with this rotten ailment.

For those that don't know (or haven't read my previous post on this) PN is nerve damage and it's something that starts small and then expands overtime - the end result is sharp bolts of pain in the extremities (feet and hands) but can spread to anywhere throughout the body. I generally call it my mobile pain as it is far more mobile than I am. It can jolt my toes and then in an instant hit my fingers, wrists, thumbs, behind my ears in my forearms, in my butt (that's the worst lol) and then back to my toes; it's like lightning flashes, bish, bash, bosh and then it will subside and then without warning start up again.

I've been award PIP to help me cope with daily living and my mobility issues - walking really is a pain. I've had to purchase several devices to help in the kitchen, have a perching stool for when I want to make something more elaborate than opening a tin of beans or soup and have recently purchased a hot cup machine which dispenses a cup of hot water directly into a cup. This last has been a godsend as I dropped the kettle full of boiling water when my mobile pain decided to hit my wrists.

I've had a cleaner (wonderful woman) for just over a year and she is amazing - getting down on her hands and knees to clean floors, get under furniture and polish my wood furniture. She cleans my bathroom, kitchen, bedroom, sitting room, changes my bed, cleans my windows, does my laundry when she has spare times (if not I take it to the communal laundry room and others help me there) and even runs errands for me. A real treasure and wonder woman.

More recently I've engaged a Podiatrist to cut my toenails and check my feet for signs of micro-ulcers (another symptom of PN); it was getting impossible for me to do this simple chore. As I bent over to start cutting my vertigo would kick in (exacerbated by the medication I take for my PN) and I'd just roll onto the floor. Sometimes I'd get leg cramps when this happened, so it was a double whammy for me. We have a saying here in the complex I live in - "it's the getting up that gets you down" and never was there a truer word uttered. Getting down is easy, we just fall, but it's the getting up afterwards where the problems start lol.

I have no idea what is in store for me next as there are other issues with PN that have not yet manifested, I hope they don't. This is one of those invisible ailments that others can't see, other than when a pained expression covers my face, and this gives rise to ignorance and ill-founded judgements that people make. PN is something I'd never heard of before, but it really makes itself known when you suffer from it.

The Occupational Therapists have been brilliant and given me plenty of gear to help. My 4-wheel walker is brilliant, before I had that I used a walking stick and people passing by thought I was drunk as I staggered into walls and stumbled. It may have looked funny, like a scene from a silent movie, but it was embarrassing and did little for my self-confidence. Now I can walk in a reasonably straight line, but the pains in my feet get worse with each step, so the seat on the walker is a bonus as I can sit for a while until the pains ease and then I can move on.

When I'm alone the air can turn blue as I give a yelp when the damn thing is fired up, but when in company I tend to choose my words a little more carefully lol. It's not much fun being in pain all of the time, but it's something I can get accustomed to (never used to it) as I have a pretty high pain threshold. I try to turn misery into laughter whenever I can, and I am just grateful that I can get through from day to day and have a few moments that are not so dark.

I can empathise with anyone going through any life-long ailment that impacts on your daily living; no one can ever know what another is going through, but we must stay strong and fight the good fight.
 

Lee

Administrator
Staff member
Admin Team
Messages
3,160
It's been almost 2 years since I was diagnosed with this ailment and I'm happy to say that, so far, I've been able to manage it reasonably well. I'm very close to the maximum dose of my medication (currently on 450mg a day with a max of 600mg) and I'd like to keep it that way for at least another year and then take stock of where I'm at with this rotten ailment.

For those that don't know (or haven't read my previous post on this) PN is nerve damage and it's something that starts small and then expands overtime - the end result is sharp bolts of pain in the extremities (feet and hands) but can spread to anywhere throughout the body. I generally call it my mobile pain as it is far more mobile than I am. It can jolt my toes and then in an instant hit my fingers, wrists, thumbs, behind my ears in my forearms, in my butt (that's the worst lol) and then back to my toes; it's like lightning flashes, bish, bash, bosh and then it will subside and then without warning start up again.

I've been award PIP to help me cope with daily living and my mobility issues - walking really is a pain. I've had to purchase several devices to help in the kitchen, have a perching stool for when I want to make something more elaborate than opening a tin of beans or soup and have recently purchased a hot cup machine which dispenses a cup of hot water directly into a cup. This last has been a godsend as I dropped the kettle full of boiling water when my mobile pain decided to hit my wrists.

I've had a cleaner (wonderful woman) for just over a year and she is amazing - getting down on her hands and knees to clean floors, get under furniture and polish my wood furniture. She cleans my bathroom, kitchen, bedroom, sitting room, changes my bed, cleans my windows, does my laundry when she has spare times (if not I take it to the communal laundry room and others help me there) and even runs errands for me. A real treasure and wonder woman.

More recently I've engaged a Podiatrist to cut my toenails and check my feet for signs of micro-ulcers (another symptom of PN); it was getting impossible for me to do this simple chore. As I bent over to start cutting my vertigo would kick in (exacerbated by the medication I take for my PN) and I'd just roll onto the floor. Sometimes I'd get leg cramps when this happened, so it was a double whammy for me. We have a saying here in the complex I live in - "it's the getting up that gets you down" and never was there a truer word uttered. Getting down is easy, we just fall, but it's the getting up afterwards where the problems start lol.

I have no idea what is in store for me next as there are other issues with PN that have not yet manifested, I hope they don't. This is one of those invisible ailments that others can't see, other than when a pained expression covers my face, and this gives rise to ignorance and ill-founded judgements that people make. PN is something I'd never heard of before, but it really makes itself known when you suffer from it.

The Occupational Therapists have been brilliant and given me plenty of gear to help. My 4-wheel walker is brilliant, before I had that I used a walking stick and people passing by thought I was drunk as I staggered into walls and stumbled. It may have looked funny, like a scene from a silent movie, but it was embarrassing and did little for my self-confidence. Now I can walk in a reasonably straight line, but the pains in my feet get worse with each step, so the seat on the walker is a bonus as I can sit for a while until the pains ease and then I can move on.

When I'm alone the air can turn blue as I give a yelp when the damn thing is fired up, but when in company I tend to choose my words a little more carefully lol. It's not much fun being in pain all of the time, but it's something I can get accustomed to (never used to it) as I have a pretty high pain threshold. I try to turn misery into laughter whenever I can, and I am just grateful that I can get through from day to day and have a few moments that are not so dark.

I can empathise with anyone going through any life-long ailment that impacts on your daily living; no one can ever know what another is going through, but we must stay strong and fight the good fight.
Hey Dave, just wanted to let you know that I have read this and I will send a propper reply later tonight.
 

Lee

Administrator
Staff member
Admin Team
Messages
3,160
It's been almost 2 years since I was diagnosed with this ailment and I'm happy to say that, so far, I've been able to manage it reasonably well. I'm very close to the maximum dose of my medication (currently on 450mg a day with a max of 600mg) and I'd like to keep it that way for at least another year and then take stock of where I'm at with this rotten ailment.

For those that don't know (or haven't read my previous post on this) PN is nerve damage and it's something that starts small and then expands overtime - the end result is sharp bolts of pain in the extremities (feet and hands) but can spread to anywhere throughout the body. I generally call it my mobile pain as it is far more mobile than I am. It can jolt my toes and then in an instant hit my fingers, wrists, thumbs, behind my ears in my forearms, in my butt (that's the worst lol) and then back to my toes; it's like lightning flashes, bish, bash, bosh and then it will subside and then without warning start up again.

I've been award PIP to help me cope with daily living and my mobility issues - walking really is a pain. I've had to purchase several devices to help in the kitchen, have a perching stool for when I want to make something more elaborate than opening a tin of beans or soup and have recently purchased a hot cup machine which dispenses a cup of hot water directly into a cup. This last has been a godsend as I dropped the kettle full of boiling water when my mobile pain decided to hit my wrists.

I've had a cleaner (wonderful woman) for just over a year and she is amazing - getting down on her hands and knees to clean floors, get under furniture and polish my wood furniture. She cleans my bathroom, kitchen, bedroom, sitting room, changes my bed, cleans my windows, does my laundry when she has spare times (if not I take it to the communal laundry room and others help me there) and even runs errands for me. A real treasure and wonder woman.

More recently I've engaged a Podiatrist to cut my toenails and check my feet for signs of micro-ulcers (another symptom of PN); it was getting impossible for me to do this simple chore. As I bent over to start cutting my vertigo would kick in (exacerbated by the medication I take for my PN) and I'd just roll onto the floor. Sometimes I'd get leg cramps when this happened, so it was a double whammy for me. We have a saying here in the complex I live in - "it's the getting up that gets you down" and never was there a truer word uttered. Getting down is easy, we just fall, but it's the getting up afterwards where the problems start lol.

I have no idea what is in store for me next as there are other issues with PN that have not yet manifested, I hope they don't. This is one of those invisible ailments that others can't see, other than when a pained expression covers my face, and this gives rise to ignorance and ill-founded judgements that people make. PN is something I'd never heard of before, but it really makes itself known when you suffer from it.

The Occupational Therapists have been brilliant and given me plenty of gear to help. My 4-wheel walker is brilliant, before I had that I used a walking stick and people passing by thought I was drunk as I staggered into walls and stumbled. It may have looked funny, like a scene from a silent movie, but it was embarrassing and did little for my self-confidence. Now I can walk in a reasonably straight line, but the pains in my feet get worse with each step, so the seat on the walker is a bonus as I can sit for a while until the pains ease and then I can move on.

When I'm alone the air can turn blue as I give a yelp when the damn thing is fired up, but when in company I tend to choose my words a little more carefully lol. It's not much fun being in pain all of the time, but it's something I can get accustomed to (never used to it) as I have a pretty high pain threshold. I try to turn misery into laughter whenever I can, and I am just grateful that I can get through from day to day and have a few moments that are not so dark.

I can empathise with anyone going through any life-long ailment that impacts on your daily living; no one can ever know what another is going through, but we must stay strong and fight the good fight.

I'm glad you have some optimism, it would be all too easy to get sucked into a dark place when dealing with chronic illness, especially chronic pain. You are a brave and strong and compassionate gentleman, that shows in your posts you make here.

I'm glad your PIP award was renewed with no issues, you certainly deserve the help and i'd hate to thing of anybody struggling financially, especially due to ill health. I've recently put a PIP claim in myself, so we shall see what my outcome is.

You really do sound like you have a firm grip on this for the moment. I have my fingers and toes crossed that you don't suffer any more adversely than you are now and your illness doesn't worsen.

I cant begin imagine the confidence issues before your mobility was sorted, the walker sounds like an absolute god send.

Keep fighting Dave.
 
OP
Dave

Dave

Active member
Messages
245
I'm glad you have some optimism, it would be all too easy to get sucked into a dark place when dealing with chronic illness, especially chronic pain. You are a brave and strong and compassionate gentleman, that shows in your posts you make here.
That's very kind of you to say - I take a lot of my outlook from my dear departed mum, who was a fountain of wisdom and taught me the realities of life and to try not to judge others and to be kind and compassionate. One of her favourite sayings was "If you can't do someone a good turn, don't do them any harm either" and "It's nice to be nice".
I've recently put a PIP claim in myself, so we shall see what my outcome is.
I wish you good fortune and hope that you get your PIP - it really does help, especially since most aids are way over priced and it takes a chunk of change to get some of the things you need to make life a little less stressful.
You really do sound like you have a firm grip on this for the moment. I have my fingers and toes crossed that you don't suffer any more adversely than you are now and your illness doesn't worsen.
I believe that you generally have two options in life, both of which involve acceptance and the ability to never give in. It can be easy to give in, but that just makes issues even harder to cope with. I try to find laughter in everything I do and good old 'Gordon Bennett' and his sister 'Bloody Norah' are two phrases that slip out when I get a jolt and even though I'm in pain it's nice to hear the sound of laughter from those around me lol.

I know that the phrase "there's plenty worse off than you" is familiar and my mum would often reply "If that's supposed to make me feel better, it doesn't" said with a wry little smile on her face. Another very good friend of mine, Barry, who I've lost touch with and don't even know if he's still alive as he was a fair bit older than me, when I said to him once "the grass is always greener on the other side" he would reply "No! The grass is always greenest where you water it". He was another wise owl that I learned a lot from and that last phrase he quoted is something that sticks with me and I always try to water the grass wherever I am because I know it will be nice and green :)
 
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