Physical disabilities and coping.

[mackem1989]

Serious one here for you guys. Last year I was diagnosed with a physical disability this has ripped away from me playing football or training in the gym at the moment I managed to get round Wembley for two days however today it’s the first day I’ve needed crutches to walk I’ve tried so long for it to not affect my life but it’s slowly creeping in.

It’s not affecting my work etc as I won’t allow it but I struggle to pick my sons up and even struggle to cut my food.

I don’t just go ah shit I’m disabled fuck it I’m going to give In trying.

Wondering if anyone else on here has a physical disability and how they cope.

The last few weeks/months is where I’ve started to deteriorate with strength and balance etc odd seizures here and there.

Just looking for coping mechanisms really and how people battle through.

Now I know it’s the smb so it wouldn’t be right if some sort of joke wasn’t thrown in.

Also a little more on topic of club but wondering how I would go about changing my seats as I’m currently in the south stand renewed right at back won’t happen with steps only want to change seats so club should allow that I’m guessing.

Cheers all.

 

[becs]

You need to have an acceptance of what is happening and listen to your body and work with it.

I used to burn myself out doing far too much as I felt guilty if I didn't do all the things I wanted to do and felt guilty sitting resting when I could be getting on with things.

Eg: I was planning doing heavy work in the garden yesterday, but I was knackered after a long day out on Saturday. Old me would have ploughed on anyway and I'd have ended up in a bad state this morning.

Accepting that I didn't feel 100% yesterday and just doing easy little jobs instead and taking pride in what I did manage to do, means I feel ok for work this morning.

Hope that makes sense! Look after yourself xx

 

[Boinger]

You need to have an acceptance of what is happening and listen to your body and work with it.

I used to burn myself out doing far too much as I felt guilty if I didn't do all the things I wanted to do and felt guilty sitting resting when I could be getting on with things.

Eg: I was planning doing heavy work in the garden yesterday, but I was knackered after a long day out on Saturday. Old me would have ploughed on anyway and I'd have ended up in a bad state this morning.

Accepting that I didn't feel 100% yesterday and just doing easy little jobs instead and taking pride in what I did manage to do, means I feel ok for work this morning.

Hope that makes sense! Look after yourself xx

Pretty much spot on @becs.

I was a "normal" 45 yr old 16yrs ago, when I started to get cramp in my calves and a tingling sensation on my lower lip. It got progressively worse, until eventually my legs would literally collapse beneath me.

It turned out had an illness that basically meant my immune system was attacking the peripheral nerves.. namely both lower legs, both lower arms and the lower portion of my face, sadly this wasn't diagnosed for about 6 months, whereby it was too late, ireppairable damage had been done within this time and I had no choice but to use a wheelchair.

I was angry, boy was I angry and the "why me" syndrome kicked in, but I had my saviour in my Occupational therapist, who as well as sorting me out with all the equipment, offered me some great advice.. basically "OK you are now disabled, you have nothing life threatening, so do you want to be angry with the world for the rest of your life, which will do no good at all to you, your family & friends or do you want to concentrate on finding other things to do that your disability wont effect"? .. It worked, I joined an art class, learned to paint (which I love), and even became an internet radio presenter!

Oh and if Sunderland are anything like Albion you will be looked after as a disabled supporter.. My ST including my helper comes in at £170.. or £85 each or about 4 quid a game!

Not sure if any of the above helps @mackem1989 but I wish you all the best, and make sure you get all the help available.. PiP, equipment etc.

 

[zwartekat]

Sensible advice above. There will be good and bad days but there would have been anyway. Accept your limitations and make the most of the capabilities you do have.

And there's nowt wrong with feeling a bit sorry for yourself sometimes, just don't take it out on those closest to you!

 

[Boinger]

Sensible advice above. There will be good and bad days but there would have been anyway. Accept your limitations and make the most of the capabilities you do have.

And there's nowt wrong with feeling a bit sorry for yourself sometimes, just don't take it out on those closest to you!

Spot on @zwartekat.

Something I missed off in my post.

Good days & bad days, and the trick is to recognise both and adjust accordingly.

 

[mux]

You need to have an acceptance of what is happening and listen to your body and work with it.

I used to burn myself out doing far too much as I felt guilty if I didn't do all the things I wanted to do and felt guilty sitting resting when I could be getting on with things.

Eg: I was planning doing heavy work in the garden yesterday, but I was knackered after a long day out on Saturday. Old me would have ploughed on anyway and I'd have ended up in a bad state this morning.

Accepting that I didn't feel 100% yesterday and just doing easy little jobs instead and taking pride in what I did manage to do, means I feel ok for work this morning.

Hope that makes sense! Look after yourself xx

That's excellent advice.

 

[Longy]

Serious one here for you guys. Last year I was diagnosed with a physical disability this has ripped away from me playing football or training in the gym at the moment I managed to get round Wembley for two days however today it’s the first day I’ve needed crutches to walk I’ve tried so long for it to not affect my life but it’s slowly creeping in.

It’s not affecting my work etc as I won’t allow it but I struggle to pick my sons up and even struggle to cut my food.

I don’t just go ah shit I’m disabled fuck it I’m going to give In trying.

Wondering if anyone else on here has a physical disability and how they cope.

The last few weeks/months is where I’ve started to deteriorate with strength and balance etc odd seizures here and there.

Just looking for coping mechanisms really and how people battle through.

Now I know it’s the smb so it wouldn’t be right if some sort of joke wasn’t thrown in.

Also a little more on topic of club but wondering how I would go about changing my seats as I’m currently in the south stand renewed right at back won’t happen with steps only want to change seats so club should allow that I’m guessing.

Cheers all.

Can’t give any helpful advice but just posted to say best of luck mate. One thing Friday - Sunday reminded me of, is that there’s loads of great people about who will help & support each other selflessly. Turn on the news, everything’s negative. Try to put yourself in a positive environment & hopefully you’ll cope with a disability better.

 

[offshore]

I've go very very bad hands after having 5 operations to stop the nerves getting crushed bit thru did nothing. I've only got about 50% feeling in my fingers and pain is unreal. And in the winter or cold weather it's even worse and I've lived with this for 17 year now. Also my spine has started to crumble and the discs are getting crushed so had X2 operations to put in a total of 6 new discs and a cage around my cervical spine. I still work but it's getting harder and harder to stand for more that 20 mins! I just live with the pain but things I enjoyed like walks or a theme park is jist put of the question! I can't play the guitar like I used to either. It's shit getting old

 

[Trumpet]

Serious one here for you guys. Last year I was diagnosed with a physical disability this has ripped away from me playing football or training in the gym at the moment I managed to get round Wembley for two days however today it’s the first day I’ve needed crutches to walk I’ve tried so long for it to not affect my life but it’s slowly creeping in.

It’s not affecting my work etc as I won’t allow it but I struggle to pick my sons up and even struggle to cut my food.

I don’t just go ah shit I’m disabled fuck it I’m going to give In trying.

Wondering if anyone else on here has a physical disability and how they cope.

The last few weeks/months is where I’ve started to deteriorate with strength and balance etc odd seizures here and there.

Just looking for coping mechanisms really and how people battle through.

Now I know it’s the smb so it wouldn’t be right if some sort of joke wasn’t thrown in.

Also a little more on topic of club but wondering how I would go about changing my seats as I’m currently in the south stand renewed right at back won’t happen with steps only want to change seats so club should allow that I’m guessing.

Cheers

Pretty much spot on @becs.

I was a "normal" 45 yr old 16yrs ago, when I started to get cramp in my calves and a tingling sensation on my lower lip. It got progressively worse, until eventually my legs would literally collapse beneath me.

It turned out had an illness that basically meant my immune system was attacking the peripheral nerves.. namely both lower legs, both lower arms and the lower portion of my face, sadly this wasn't diagnosed for about 6 months, whereby it was too late, ireppairable damage had been done within this time and I had no choice but to use a wheelchair.

I was angry, boy was I angry and the "why me" syndrome kicked in, but I had my saviour in my Occupational therapist, who as well as sorting me out with all the equipment, offered me some great advice.. basically "OK you are now disabled, you have nothing life threatening, so do you want to be angry with the world for the rest of your life, which will do no good at all to you, your family & friends or do you want to concentrate on finding other things to do that your disability wont effect"? .. It worked, I joined an art class, learned to paint (which I love), and even became an internet radio presenter!

Oh and if Sunderland are anything like Albion you will be looked after as a disabled supporter.. My ST including my helper comes in at £170.. or £85 each or about 4 quid a game!

Not sure if any of the above helps @mackem1989 but I wish you all the best, and make sure you get all the help available.. PiP, equipment etc.

Well said about getting an OT onboard they can get equipment to make life easier and help you to come to terms with what you're going through as well as looking at new activities etc. Small steps and try to keep positive mate. Best of luck.

 

[WhoDrankAllTheBovril]

You need to have an acceptance of what is happening and listen to your body and work with it.

I used to burn myself out doing far too much as I felt guilty if I didn't do all the things I wanted to do and felt guilty sitting resting when I could be getting on with things.

Eg: I was planning doing heavy work in the garden yesterday, but I was knackered after a long day out on Saturday. Old me would have ploughed on anyway and I'd have ended up in a bad state this morning.

Accepting that I didn't feel 100% yesterday and just doing easy little jobs instead and taking pride in what I did manage to do, means I feel ok for work this morning.

Hope that makes sense! Look after yourself xx

This, absolutely.
Rest when you need to. If stuff doesn't get done for a day or two it really isn't the end of the world.

 

[gegsongegsonlegs]

I was recently diagnosed with mixed connective tissue disease. Combination of reynauds, lupus, rheumatoid arthritis and another I can’t remember the name of. Similar to a poster above it’s basically my immune system attacking my body..

Took around 18 month in total to diagnose. Been around 2 years now and I can feel it getting worse and worse. Struggling like hell at work and a really busy day absolutely floors me. Regular flare ups, fever, sweats, cramps and extreme random joint pain.. I know it’s going to impact on my life but wasn’t expecting it to be so quick. Just started to get info together regarding I’ll health retirement from work as if it keeps up at its current rate I’ll be lucky to get past 50 still being able to work..

 

[Ciro_DiMarzio]

I've go very very bad hands after having 5 operations to stop the nerves getting crushed bit thru did nothing. I've only got about 50% feeling in my fingers and pain is unreal. And in the winter or cold weather it's even worse and I've lived with this for 17 year now. Also my spine has started to crumble and the discs are getting crushed so had X2 operations to put in a total of 6 new discs and a cage around my cervical spine. I still work but it's getting harder and harder to stand for more that 20 mins! I just live with the pain but things I enjoyed like walks or a theme park is jist put of the question! I can't play the guitar like I used to either. It's shit getting old

I am only 38 but due to the job I do always have aches and pains in my hands and fingers. Quite worried at the minute as they usually feel better after a weekend off then start hurting again towards the end of the week. Had 6 days off in a row now and two of my knuckles are still killing and look very swollen. Hope it isn't the start of more serious issues.

 

[danielsan]

Not to give pity or anything like, but accepting it is now part of your life is a huge step and for me I now say it could be worse, rather than why me. (As horrible as it sounds)

 

[monkeytassle]

Auto immune stuff here. Some days I can't even get my left sho on. Muscle atrophy in left leg as I can't put weight on it. Chronic hip pain due to overuse of right leg. Have also broken my neck twice so that f***ing aches.

 

[Skandhaless]

Serious one here for you guys. Last year I was diagnosed with a physical disability this has ripped away from me playing football or training in the gym at the moment I managed to get round Wembley for two days however today it’s the first day I’ve needed crutches to walk I’ve tried so long for it to not affect my life but it’s slowly creeping in.

It’s not affecting my work etc as I won’t allow it but I struggle to pick my sons up and even struggle to cut my food.

I don’t just go ah shit I’m disabled fuck it I’m going to give In trying.

Wondering if anyone else on here has a physical disability and how they cope.

The last few weeks/months is where I’ve started to deteriorate with strength and balance etc odd seizures here and there.

Just looking for coping mechanisms really and how people battle through.

Now I know it’s the smb so it wouldn’t be right if some sort of joke wasn’t thrown in.

Also a little more on topic of club but wondering how I would go about changing my seats as I’m currently in the south stand renewed right at back won’t happen with steps only want to change seats so club should allow that I’m guessing.

Cheers all.

As many people are saying acceptance is a key issue . It's often the struggle we have in relationship to the disability that is most impacting , it leads us to do too much to "show it it won't win" or do too little due to defeatism or fear of worsening our position . Struggle is tiring.
Pacing is also an important aspect .
Your local IAPT will have therapists trained in CBT for long term conditions , they can help with the mental side of things often using compassion focussed therapies or acceptance and commitment therapy (ACT) . Give it a try , nowt to lose j

 

[offshore]

I am only 38 but due to the job I do always have aches and pains in my hands and fingers. Quite worried at the minute as they usually feel better after a weekend off then start hurting again towards the end of the week. Had 6 days off in a row now and two of my knuckles are still killing and look very swollen. Hope it isn't the start of more serious issues.

My job has has done so much damage to the nerves in my hands and I'd wish I'd done something about it years ago when they first started hurting. I was maybe in my earlier 30s at this time but I just didn't think anything of it and it wasn't until I went to see the doctor through work ( had great private healthcare) and he said he'd never seen hands this bad in someone so young! But ended up having my first 2 operations but doing the same job just didn't help at all and within 2 years they were worse than before. Another 3 operations later but in the end I had to change jobs because the pain was lasting longer and longer and was still bad even after my time off and that was sometimes 3 or 4 weeks! It's the best thing I did but Ive done the damage now and they will only get worse with time.

 

[Ciro_DiMarzio]

My job has has done so much damage to the nerves in my hands and I'd wish I'd done something about it years ago when they first started hurting. I was maybe in my earlier 30s at this time but I just didn't think anything of it and it wasn't until I went to see the doctor through work ( had great private healthcare) and he said he'd never seen hands this bad in someone so young! But ended up having my first 2 operations but doing the same job just didn't help at all and within 2 years they were worse than before. Another 3 operations later but in the end I had to change jobs because the pain was lasting longer and longer and was still bad even after my time off and that was sometimes 3 or 4 weeks! It's the best thing I did but Ive done the damage now and they will only get worse with time.

I'm going to go and see H&S when I am back on Thursday as there has been a recent change to a process which I think is a significant factor. See how I get on.

 

[oddbod]

I was recently diagnosed with mixed connective tissue disease. Combination of reynauds, lupus, rheumatoid arthritis and another I can’t remember the name of. Similar to a poster above it’s basically my immune system attacking my body..

Took around 18 month in total to diagnose. Been around 2 years now and I can feel it getting worse and worse. Struggling like hell at work and a really busy day absolutely floors me. Regular flare ups, fever, sweats, cramps and extreme random joint pain.. I know it’s going to impact on my life but wasn’t expecting it to be so quick. Just started to get info together regarding I’ll health retirement from work as if it keeps up at its current rate I’ll be lucky to get past 50 still being able to work..

who is your consultant Mate?

Serious one here for you guys. Last year I was diagnosed with a physical disability this has ripped away from me playing football or training in the gym at the moment I managed to get round Wembley for two days however today it’s the first day I’ve needed crutches to walk I’ve tried so long for it to not affect my life but it’s slowly creeping in.

It’s not affecting my work etc as I won’t allow it but I struggle to pick my sons up and even struggle to cut my food.

I don’t just go ah shit I’m disabled fuck it I’m going to give In trying.

Wondering if anyone else on here has a physical disability and how they cope.

The last few weeks/months is where I’ve started to deteriorate with strength and balance etc odd seizures here and there.

Just looking for coping mechanisms really and how people battle through.

Now I know it’s the smb so it wouldn’t be right if some sort of joke wasn’t thrown in.

Also a little more on topic of club but wondering how I would go about changing my seats as I’m currently in the south stand renewed right at back won’t happen with steps only want to change seats so club should allow that I’m guessing.

Cheers all.

Good luck mate ..acceptance is the hardest part and once you have reached that all you can try to do is (its fekking hard)try to be the best person you can be with what you've got available to you!

 

[rudd]

Got a plethora of autoimmune diagnoses, main symptoms are tiredness, muscle fatigue/weakness and joint pain.

Like others say, acceptance is the hardest part and something I struggled with. This will probably sound a bit big headed but I'm relatively successful in my work and have never really pushed myself or failed at much. I couldn't cope with my body failing and I would be too pig headed and try to do things on a bad day, resulting in me launching things across the kitchen like a tin of tomatoes that I couldn't open.

It took me a while for me to accept what was happening on bad days and it was a long process; buying and wearing slip on shoes on days when I can't fasten laces, using an electric tin opener, getting a blue badge etc.
It's better to accept some limitations and changes and still do things than to stay at home doing nothing.

 

[Billericay Dichio]

I'm going to go and see H&S when I am back on Thursday as there has been a recent change to a process which I think is a significant factor. See how I get on.

Apologies for sticking my twopenneth in but it sounds a lot like HAVS (white knuckle syndrome)? Are you working with power tools - grinders, strimmers, drills, etc etc?