physical limitations

[Mep]

Hi Everyone

Are there people on this forum that live with permanent physical limitations that really impact their way of life?

I'm living with voice disorders and even though I've had these for at least 4 years without any improvement they have had a huge impact on my life along with my other stuff. I live with chronic burping too so I've had to get used to being stared at, laughed at, and the occasional inappropriate comments like "excuse you" and "who's burping". I'm so polite about it too and always have my mouth shut even though that hurts me more to do that (chronic burping makes all your muscles ache).

I'm trying my best to live with my limitations but I am finding that I'm being forced to be who I'm not as a person if that makes sense. I was a huge chatter box and I was the one that rallied everyone together and organised social outings. Now I just stay home and barely contact anyone at all other than by Facebook or text messages. I'm not even doing that a lot these days. So I'm not the one that is there for my friends and family like I used to be which saddens me because I'd love to do what I used to do.

Sadly because I'm limited I find that no one else in my real life really bothers to check how I'm going and if I need a hand at all. My family occasionally thinks of me but we're not the type of family that communicates that regularly. Although if another family member gets pregnant or sick temporarily they rush to take them dinners and clean their house for them. I've never had that at all because I guess they just have viewed me as always sick.

I used to love to sing and did that for many years, now I can't even do that. So another chronically ill friend of mine encouraged me that it was important to replace my hobby with another one I could do. I did that and started to learn to crochet about 2 years ago.

But I'm interested to hear from others just how much you've been impacted by your physical limitations... have you found a way around them or are you similar to me in that it is hard to find a way around and you're forced to live a different way?

Anyways I'm probably rambling a little as super tired. But the thought crossed my mind to ask about what others here experience and how you tackle it.

 

[Brunneria]

Mine are nothing like as severe as yours, but the thing that has been affecting me most, recently, is the joint inflammation and joint damage.

I have hypermobile joints, and absolutely no propensity for any sports or physical exercise.
Yet in my youth I belonged to the school swimming team and tried to do 'normal' amounts of childish fun and games during PE lessons. Gym. Ballet classes (thanks Mum ) And cliff path walking on holidays. Also yoga as I got older.

Of course, this has now come back to haunt me. Special pillow. Have to sit straight. Ergonomic keyboard. Cushion added to car seat. Orthotic insoles. Knee pain. Permanently damaged shoulder and unstable ankle, knee, elbow and sacro-illeac joints. Stairs are a bl$$dy pain.

Wish I could tell you that the fun and games had been worth it... but heck no. A few years bonding with sporty types whose names I can no longer remember, followed by decades of pain... know which I would choose if I could do it again! Feel like one of those poor wee Russian gymnasts from the 70s.

 

[Mep]

Mine are nothing like as severe as yours, but the thing that has been affecting me most, recently, is the joint inflammation and joint damage.

I have hypermobile joints, and absolutely no propensity for any sports or physical exercise.
Yet in my youth I belonged to the school swimming team and tried to do 'normal' amounts of childish fun and games during PE lessons. Gym. Ballet classes (thanks Mum ) And cliff path walking on holidays. Also yoga as I got older.

Of course, this has now come back to haunt me. Special pillow. Have to sit straight. Ergonomic keyboard. Cushion added to car seat. Orthotic insoles. Knee pain. Permanently damaged shoulder and unstable ankle, knee, elbow and sacro-illeac joints. Stairs are a bl$$dy pain.

Wish I could tell you that the fun and games had been worth it... but heck no. A few years bonding with sporty types whose names I can no longer remember, followed by decades of pain... know which I would choose if I could do it again! Feel like one of those poor wee Russian gymnasts from the 70s.

Yes, that would be hard with joint inflammation and damage I know sports can be hard on our bodies too. I was never much a sports person but these days just walking puts me in pain anyhow. Yeh, stairs would be very hard to use for you too.

Do you have people say just move more and things like that? I often wonder what people are thinking. If going for a walk would make me feel better then I'd be doing it. lol.

I hope your docs are being helpful for you to help control the pain and discomfort.

 

[Brunneria]

Doc just says use painkillers/anti-inflammatories.
Honestly, if i stick to very low carb, it is controlled. Much better than with the tablets!

And i do stay mobile, and i walk the dogs, but i kind of think that my joints have a 'lifespan' and i don't want to push them too far...

 

[Shar67]

I have chronic pain, nerve pain, usually up left side to shoulder then down left arm, sometimes it goes up to left side of head.
Joints hurt due to meds, which also cause really dry mouth, and eyes.
I vomit every other day, I get double incontinence, insomnia and tiredness. Dentist is fighting to save my teeth from acid and bile reflux. Gastroparesis, pain in liver, pain in common bile duct, pancreatic pain, water retention.
I love walking, hiking but I struggle, I'm so slow it takes forever, I take a walking stick, not to walk but to rest on.
My friends and Dave's friends are great, my lovely, lovey neighbour is the best and my family as far away as they are, call several times a week.
I do very very gentle exercise.

 

[Mep]

I have chronic pain, nerve pain, usually up left side to shoulder then down left arm, sometimes it goes up to left side of head.
Joints hurt due to meds, which also cause really dry mouth, and eyes.
I vomit every other day, I get double incontinence, insomnia and tiredness. Dentist is fighting to save my teeth from acid and bile reflux. Gastroparesis, pain in liver, pain in common bile duct, pancreatic pain, water retention.
I love walking, hiking but I struggle, I'm so slow it takes forever, I take a walking stick, not to walk but to rest on.
My friends and Dave's friends are great, my lovely, lovey neighbour is the best and my family as far away as they are, call several times a week.
I do very very gentle exercise.

You're dealing with a lot there

I have joint pain and swelling at the moment, plus dry mouth. But I think it's from my meds too. My doc has me tapering down the amitriptyline and he says if there is no change to my joint pain he thinks I may have something else wrong. I'm not impressed at that possibility. But what happens at the moment is some of my joints are seizing up during the night and in the morning I struggle to get them moving... especially my fingers. I get periodic pain in finger joints, wrists, elbows, shoulders, knees, and ankles at the moment along with swelling in the fingers and ankles mostly. Is this what you're experiencing too? I am hoping mine is just a temporary thing, although it has been going on for a couple of months now.

I also have the equivalent of gastroparesis in my oesophagus but my gastroenterologist said they can't call it that... they just call is a severe dysmotility disorder instead.

I'm glad you're getting out to walk and you have some help from friends and neighbours.

 

[PatsyB]

I walk my dogs too and as you say I also think the joints have a lifespan and do not wnat to over do it I hope you are feeling better soon

 

[Brillpaul]

Had Lada since Feb this year and 67 next month. Some knee pain from cycling, tennis or walking. Met with knee consultant today and said it's not too bad yet but could do a half knee replacement.
With diabetes risk of infection would be higher and anaesthetic can play havoc with BS.
Dilemma- should I risk it now or give up the excercise and hope I am away before severe arthritis comes to town?
Any ideas?

 

[Mep]

Had Lada since Feb this year and 67 next month. Some knee pain from cycling, tennis or walking. Met with knee consultant today and said it's not too bad yet but could do a half knee replacement.
With diabetes risk of infection would be higher and anaesthetic can play havoc with BS.
Dilemma- should I risk it now or give up the excercise and hope I am away before severe arthritis comes to town?
Any ideas?

Yes, there's always a risk.... although I would hope your doc has advised you what is the best option.

If you have the opportunity to get help then it may be a risk to take. My understanding with knee surgery (and I know a few people who've now had knee replacements, one of them is about to have one next week too) the incision isn't a big one. They really can do that surgery now so that you heal nicely. You will have rehab afterwards as well. With my limitations I don't have that option to get help as no one knows how to help. So I'm living with permanent limitations.

To get a better response you may want to start your own post as what you're talking about is something that you have the option of fixing... whereas this post is really about things that can't be fixed and you have to learn to live with.

I wish you the best whatever you decide to do with your knee.

 

[Brillpaul]

Thanks Mep. Just after reading your post and it left me wondering what I may have to live with down the line. You sure do have a lot to contend with and I wish you well with your struggles.

 

[ladybird64]

My cancer treatment was very aggressive, and has left me with some long term damage. It has taken me some time to accept that my body can't do what it used to, and at times this was very frustrating and upsetting, not helped by those who gave me the "you should be grateful you are in remission" line. Of course I am, but I didn't realise that there would be permanent changes, that I would be in pain, have low energy and other things that are too personal to go into here. I've learnt to live with the "changed me", because I had no choice - I've adapted. Sometimes there just isn't an answer out there, and adapt is all we can do if we want to get on with living. You do have my empathy though. x

 

[Cat0409_]

Diabetes!
Chronic pain!
Depression!

All go hand in hand unfortunately.

I live with them all on a daily basis. You have to make extra effort to be social. No one wants to hear your tale of woe. It sure makes life hard at times.

I get it @Mep. I live it! You need to find support s which are difficult to find but once you have one or two they are your rocks and help you to get out and do things on a regular basis.

 

[Mep]

Diabetes!
Chronic pain!
Depression!

All go hand in hand unfortunately.

I live with them all on a daily basis. You have to make extra effort to be social. No one wants to hear your tale of woe. It sure makes life hard at times.

I get it @Mep. I live it! You need to find support s which are difficult to find but once you have one or two they are your rocks and help you to get out and do things on a regular basis.

Yeh I know what you're saying It's good to have a couple of people who understand for sure. When you have limits with your communication though it is even harder to communicate with the small circle you do have. So a lot of the time what I'm feeling stays as what I'm feeling and I can't just pick up the phone or meet up for a chat. Such is life.