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Living with an incurable condition/disease

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Nikhil_cric

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As someone who has suffered from fibromyalgia for the last 11 years, I was wondering if there were folks on PP who have similar long term/incurable health issues. If so how have you managed to live with the condition and what adjustments have you made in your life?
Maybe a bit if an uncomfortable thread but please share your insights if possible :)
 
I suffer from a bone disease which makes my bones fracture easily. Unfortunately, the disease is incurable but I have been given some medication to help improve my condition. I've had several fractures because of this and had to make many adjustments to my life style. During my childhood I wasn't able to play any sports because of the chance of falling down and fracturing my bones. It definitely affected my social life and made me more confined to my house (except for school and when I went out with my parents). At the start, it was saddening to see other people go to their friend's house, play sports etc. But after a while you get used to it and it doesn't feel so bad. It also took away some distractions which made me focus more on my studying. Thankfully this is less severe now and I am able to live a normal life, socialize with friends, play sports like cricket etc. I still have to take many precautions though, but it is much easier to handle now.

For anyone suffering from a condition like this, I think the most important part is being informed about the disease. That helps you know the precautions you will have to take in your lifestyle. The other main way to cope with it is to just get used to it. Anything like this becomes a part of your lifestyle and it will impose some limitations, but there is nothing you can do about it. The sooner you get habituated with those limitations, the easier it will be for you.
 
Fortunately, I am cured. Stopped medication since a month and everyday I feel my IQ increasing.
 
Sachin136 said:
I suffer from a bone disease which makes my bones fracture easily. Unfortunately, the disease is incurable but I have been given some medication to help improve my condition. I've had several fractures because of this and had to make many adjustments to my life style. During my childhood I wasn't able to play any sports because of the chance of falling down and fracturing my bones. It definitely affected my social life and made me more confined to my house (except for school and when I went out with my parents). At the start, it was saddening to see other people go to their friend's house, play sports etc. But after a while you get used to it and it doesn't feel so bad. It also took away some distractions which made me focus more on my studying. Thankfully this is less severe now and I am able to live a normal life, socialize with friends, play sports like cricket etc. I still have to take many precautions though, but it is much easier to handle now.

For anyone suffering from a condition like this, I think the most important part is being informed about the disease. That helps you know the precautions you will have to take in your lifestyle. The other main way to cope with it is to just get used to it. Anything like this becomes a part of your lifestyle and it will impose some limitations, but there is nothing you can do about it. The sooner you get habituated with those limitations, the easier it will be for you.
Click to expand...

That's quite inspirational. I find day to day activities very difficult to so sometimes. Even putting my clothes on a hangar sometimes takes a lot out of me and I feel fatigued and the while body hurts.

The problem has been that my condition puts so many limitations that it's affected my academic/professional and personal life greatly. Had to drop out of an engineering degree and just about managed to finish a political science programme. I'm not sure I can get a job though and that has been a worry.

As far as social life is concerned, I struggle with anxiety and other issues that let me down often I guess. Good to hear that you are leading a normal life though . That's been my goal for many years now
 
To anyone with such incurable diseases/conditions on here, I wish you guys best of luck. :)
 
I suffer from one or two ailments myself, although I'm not prepared to give further details on an internet forum.

I would say though it's a good idea to let your friends and colleagues, and not just your family members, know of your condition. If they are good friends and colleagues, they will help you live a normal life as much possible. On the one hand by not molly coddling you, by treating you as if you had no illness at all, but at the same time ensuring that no harm comes to you due to your condition. And if they won't or can't do that, then they don't deserve to be your friends.
 
Yossarian said:
I suffer from one or two ailments myself, although I'm not prepared to give further details on an internet forum.

I would say though it's a good idea to let your friends and colleagues, and not just your family members, know of your condition. If they are good friends and colleagues, they will help you live a normal life as much possible. On the one hand by not molly coddling you, by treating you as if you had no illness at all, but at the same time ensuring that no harm comes to you due to your condition. And if they won't or can't do that, then they don't deserve to be your friends.
Click to expand...

This is very good advice I suppose. While I have no problem striking up a conversation with anyone, I tend to keep my friend circle limited since not many can actually comprehend the severity of my health issues. Neither can a lot of family members either.
 
Sachin136 said:
I suffer from a bone disease which makes my bones fracture easily. Unfortunately, the disease is incurable but I have been given some medication to help improve my condition. I've had several fractures because of this and had to make many adjustments to my life style. During my childhood I wasn't able to play any sports because of the chance of falling down and fracturing my bones. It definitely affected my social life and made me more confined to my house (except for school and when I went out with my parents). At the start, it was saddening to see other people go to their friend's house, play sports etc. But after a while you get used to it and it doesn't feel so bad. It also took away some distractions which made me focus more on my studying. Thankfully this is less severe now and I am able to live a normal life, socialize with friends, play sports like cricket etc. I still have to take many precautions though, but it is much easier to handle now.

For anyone suffering from a condition like this, I think the most important part is being informed about the disease. That helps you know the precautions you will have to take in your lifestyle. The other main way to cope with it is to just get used to it. Anything like this becomes a part of your lifestyle and it will impose some limitations, but there is nothing you can do about it. The sooner you get habituated with those limitations, the easier it will be for you.
Click to expand...

You have Osteogenesis Imperfecta?
 
Nikhil_cric said:
As someone who has suffered from fibromyalgia for the last 11 years, I was wondering if there were folks on PP who have similar long term/incurable health issues. If so how have you managed to live with the condition and what adjustments have you made in your life?
Maybe a bit if an uncomfortable thread but please share your insights if possible :)
Click to expand...

What is fibromyalgia? Not all of us have a medicin degree.
 
Nikhil_cric said:
As [MENTION=76058]cricketjoshila[/MENTION] said I have pain all over my body and then feel fatigued mist of the time. These are the main symptoms. However, I also have a host of secondary symptoms.
Click to expand...

Yes,fibromyalgia can cause difficulty in swallowing,sleeping,bowel/bladder issues,joint stiffness etc etc.
 
My Dad has one genetic disease. One of the reason why i took this profession..to help him as much as I can.
 
Nikhil_cric said:
Yep. I have all of these except bladder issues but then again I have GAD which is supposedly co-morbid with fibromyalgia lol .
Click to expand...

Hmmm.You also dont have the worst of secondary symptoms,cognitive deficiency.And yes GAD,depression,PTSD are all related with Fibromyalgia.
 
Sachin136 said:
I suffer from a bone disease which makes my bones fracture easily. Unfortunately, the disease is incurable but I have been given some medication to help improve my condition. I've had several fractures because of this and had to make many adjustments to my life style. During my childhood I wasn't able to play any sports because of the chance of falling down and fracturing my bones. It definitely affected my social life and made me more confined to my house (except for school and when I went out with my parents). At the start, it was saddening to see other people go to their friend's house, play sports etc. But after a while you get used to it and it doesn't feel so bad. It also took away some distractions which made me focus more on my studying. Thankfully this is less severe now and I am able to live a normal life, socialize with friends, play sports like cricket etc. I still have to take many precautions though, but it is much easier to handle now.

For anyone suffering from a condition like this, I think the most important part is being informed about the disease. That helps you know the precautions you will have to take in your lifestyle. The other main way to cope with it is to just get used to it. Anything like this becomes a part of your lifestyle and it will impose some limitations, but there is nothing you can do about it. The sooner you get habituated with those limitations, the easier it will be for you.
Click to expand...

I know someone similar, she has to have operations so regularly, kabhi knee replacement kabhi kuch aur.

I like your positive outlook.
 
kaayal said:
Spinocerebellar ataxia...a degenerative disease but thankfully started only after middle age. He is happy that he enjoyed his life fully, no regrets.:)
Click to expand...

Hmmmmmm.Did you guys get your gene mapping done?
 
A lot of brave people on this forum and on this thread. I wish each and every one of you well.
 
Nikhil_cric said:
As someone who has suffered from fibromyalgia for the last 11 years, I was wondering if there were folks on PP who have similar long term/incurable health issues. If so how have you managed to live with the condition and what adjustments have you made in your life?
Maybe a bit if an uncomfortable thread but please share your insights if possible :)
Click to expand...

I hope you get better bro and are able to make the necessary adjustments to cope. I have a bit of an issue, it becomes easier to deal with and make various alterations once you understand the significance of the condition and how it affects you.
 
shaz619 said:
I hope you get better bro and are able to make the necessary adjustments to cope. I have a bit of an issue, it becomes easier to deal with and make various alterations once you understand the significance of the condition and how it affects you.
Click to expand...

I suppose so. My issue was that for 8 years it was never diagnosed by any physician and it festered and things went from bad to worse until a couple of years back, having researched my symptoms online, I found a rheumatologist who managed to figure out why my life was falling apart.

I'll admit it's been two years since I found out about it and I'm managing much better than I used to but the heart is a funny thing :afridi You start hoping for a normal life seeing your friends arounds you and that's hard to accept that I might never have that :afaq
 
Sachin136 said:
A few people from my university come here so it would be easy to identify me with that. :|

But I'm between 18-22 years old.
Click to expand...

Wow man.Surviving with OI is a very very very difficult job.It can be fatal as well.Just one last question.You have blue eyes?

So you have Type 1 OI?
 
Last edited:
cricketjoshila said:
Wow man.Surviving with OI is a very very very difficult job.It can be fatal as well.Just one last question.You have blue eyes?

So you have Type 1 OI?
Click to expand...

At the end of the day it just comes down to not falling down as with this type of OI fractures don't happen without any trauma. It is difficult to prevent that but after a few fractures you know what your limitations are so the frequency of the fractures becomes less. Most of the fractures have been in my legs so there are no cardiac or respiratory complications in my case.

Yes I have blue sclera. The type of OI I have is more severe than Type 1 (which is what my mother has, and thankfully she has never fractured).

Actually OI isn't even the main disease I have, even though so far it has been the most troubling. I also suffer from Polycystic kidney disease which has even more dangerous implications later on in life.
 
Sachin136 said:
At the end of the day it just comes down to not falling down as with this type of OI fractures don't happen without any trauma. It is difficult to prevent that but after a few fractures you know what your limitations are so the frequency of the fractures becomes less. Most of the fractures have been in my legs so there are no cardiac or respiratory complications in my case.

Yes I have blue sclera. The type of OI I have is more severe than Type 1 (which is what my mother has, and thankfully she has never fractured).

Actually OI isn't even the main disease I have, even though so far it has been the most troubling. I also suffer from Polycystic kidney disease which has even more dangerous implications later on in life.
Click to expand...

What is your exact diagnosis?
 
I salute you guys who are going through this in your life and staying strong.

Truly inspirational stuff.

These are the real problems in life. Stay strong friends.
 
cricketjoshila said:
PKD1 plus OI .Dude you are one brave brave person.
Click to expand...

So far there hasn't been any issues because of the PKD apart from slightly higher blood pressure and having to go to the hospital for an ultrasound every year. In the future I think it will more difficult handling both of them together, but at least I've been able to reduce the frequency of fractures. At the age of around 50-60 it will be the most difficult since that's when the kidney function loss will be a big problem and even one fracture at that age will be very hard to overcome.
 
Sachin136 said:
So far there hasn't been any issues because of the PKD apart from slightly higher blood pressure and having to go to the hospital for an ultrasound every year. In the future I think it will more difficult handling both of them together, but at least I've been able to reduce the frequency of fractures. At the age of around 50-60 it will be the most difficult since that's when the kidney function loss will be a big problem and even one fracture at that age will be very hard to overcome.
Click to expand...
God willing by that time medical science will be so advanced that you wont have any issues.
 
Nikhil_cric said:
That's quite inspirational. I find day to day activities very difficult to so sometimes. Even putting my clothes on a hangar sometimes takes a lot out of me and I feel fatigued and the while body hurts.

The problem has been that my condition puts so many limitations that it's affected my academic/professional and personal life greatly. Had to drop out of an engineering degree and just about managed to finish a political science programme. I'm not sure I can get a job though and that has been a worry.

As far as social life is concerned, I struggle with anxiety and other issues that let me down often I guess. Good to hear that you are leading a normal life though . That's been my goal for many years now
Click to expand...

Sad to hear that. Your situation sounds more severe in the sense that pain isn’t an issue during daily activities for me. The only time pain is an issue is after a fracture, but that only lasts for a few hours before the surgery. Of course rehabilitation after that takes around a month, but thankfully I have a fracture once 2-3 years now. I had around 10 fractures by the time I was 15 though with around 5 surgeries to insert a rod or an osteotomy to correct leg bowing.

Thankfully it hasn’t affected my studying too much apart from some mobility issues. Good luck with your political science program and finding a job. Throughout high school I suffered from social anxiety as well, partly because of this disease. It is tough to make friends if you can’t participate in school sports, clubs etc.

One of the things that helped the most coping with this is moving out of India. The facilities offered here are much better than those in India, like excellent health care and easy transportation. I can’t imagine myself walking on the broken sidewalks in India being chased by a few dogs.

The only good side of this is that it encouraged me to pursue medicine, although I probably would have done that without this disease.
 
I have one, I don't think about it too much or discuss about it with anyone. Please don't ask any questions.
 
Sachin136 said:
Sad to hear that. Your situation sounds more severe in the sense that pain isn’t an issue during daily activities for me. The only time pain is an issue is after a fracture, but that only lasts for a few hours before the surgery. Of course rehabilitation after that takes around a month, but thankfully I have a fracture once 2-3 years now. I had around 10 fractures by the time I was 15 though with around 5 surgeries to insert a rod or an osteotomy to correct leg bowing.

Thankfully it hasn’t affected my studying too much apart from some mobility issues. Good luck with your political science program and finding a job. Throughout high school I suffered from social anxiety as well, partly because of this disease. It is tough to make friends if you can’t participate in school sports, clubs etc.

One of the things that helped the most coping with this is moving out of India. The facilities offered here are much better than those in India, like excellent health care and easy transportation. I can’t imagine myself walking on the broken sidewalks in India being chased by a few dogs.

The only good side of this is that it encouraged me to pursue medicine, although I probably would have done that without this disease.
Click to expand...

5 surgeries before the age of 15? :O
 
CricketCartoons said:
Fortunately, I am cured. Stopped medication since a month and everyday I feel my IQ increasing.
Click to expand...

Don't stop taking those pills.

A thread like this is not the place to exhibit your warped sense of pleasure hunting. As I said, don't stop taking those pills.
 
I too have an ailment, but it really doesn't cause much problems except sometimes. Not that it is serious enough to affect my daily activities anyway.
[MENTION=113824]Nikhil_cric[/MENTION] [MENTION=139108]Sachin136[/MENTION] Kudos to you guys for your fantastic spirit. I know this thread may appear a bit sad or tragic, but its a great thread for people to gather spirit when they come across people with similar issues. Many people have some ailment in one form or the other, and personally whenever I feel put off by any ailment, I remember that there are many such people who aren't even lucky enough to survive.
 
I wish all the people suffering from any such disease the best of luck and i hope you guys live a long and happy life.

You guys are an inspiration to people like me who dont have any of such severe health issues but still keep complaining how our life is a struggle.
 
street cricketer said:
I too have an ailment, but it really doesn't cause much problems except sometimes. Not that it is serious enough to affect my daily activities anyway.

[MENTION=113824]Nikhil_cric[/MENTION] [MENTION=139108]Sachin136[/MENTION] Kudos to you guys for your fantastic spirit. I know this thread may appear a bit sad or tragic, but its a great thread for people to gather spirit when they come across people with similar issues. Many people have some ailment in one form or the other, and personally whenever I feel put off by any ailment, I remember that there are many such people who aren't even lucky enough to survive.
Click to expand...

Thanks bro.
 
Madplayer said:
I wish all the people suffering from any such disease the best of luck and i hope you guys live a long and happy life.

You guys are an inspiration to people like me who dont have any of such severe health issues but still keep complaining how our life is a struggle.
Click to expand...

Same here. I always crib about little pains. This thread made me realize that.
 
niishaa said:
Same here. I always crib about little pains. This thread made me realize that.
Click to expand...

I don't think that's an issue to be honest. It is human nature to crib I guess :P . If I was relatively healthy I too would crib about a lot of things that seem insignificant now I guess
 
Its sad to know, tbh i mean we chat with posters without knowing behind screen what is going on i don't know what to say [MENTION=113824]Nikhil_cric[/MENTION] because I'm not going through anything like that and i hope you find some job which you are great at.

And [MENTION=514]Sachin[/MENTION]@136 i was just wondering or judging in my mind how can someone so young have so much time to learn so much about programming and even jumble with medical and mathematics, and now in a way i feel guilty about judging you hope you succeed dude and you are right about India just plain sad how it is here.
[MENTION=131678]Madplayer[/MENTION] and [MENTION=23064]N[/MENTION]iisha are right i found the same about my character.DAMN!

@
 
JaDed said:
Its sad to know, tbh i mean we chat with posters without knowing behind screen what is going on i don't know what to say [MENTION=113824]Nikhil_cric[/MENTION] because I'm not going through anything like that and i hope you find some job which you are great at.

And [MENTION=514]Sachin[/MENTION]@136 i was just wondering or judging in my mind how can someone so young have so much time to learn so much about programming and even jumble with medical and mathematics, and now in a way i feel guilty about judging you hope you succeed dude and you are right about India just plain sad how it is here.
[MENTION=131678]Madplayer[/MENTION] and [MENTION=23064]N[/MENTION]iisha are right i found the same about my character.DAMN!

@
Click to expand...

To be honest, I'm not interested in working right now and I really wanted to pursue my MA and hopefully even a PhD but because of pressure from my immediate family I might have to try for a job anyway. But thanks dude :)
 
Nikhil_cric said:
To be honest, I'm not interested in working right now and I really wanted to pursue my MA and hopefully even a PhD but because of pressure from my immediate family I might have to try for a job anyway. But thanks dude :)
Click to expand...
Are u financially secure? Because if not it is better to have a job soon. Just be positive. Have you tried meditation. It really helped me when i was going through a very depressing phase. Can you exercise? Keep urself healthy and fit hopefully you will reach ur goals in life and be sucessful
 
JaDed said:
Its sad to know, tbh i mean we chat with posters without knowing behind screen what is going on i don't know what to say [MENTION=113824]Nikhil_cric[/MENTION] because I'm not going through anything like that and i hope you find some job which you are great at.

And [MENTION=514]Sachin[/MENTION]@136 i was just wondering or judging in my mind how can someone so young have so much time to learn so much about programming and even jumble with medical and mathematics, and now in a way i feel guilty about judging you hope you succeed dude and you are right about India just plain sad how it is here.
[MENTION=131678]Madplayer[/MENTION] and [MENTION=23064]N[/MENTION]iisha are right i found the same about my character.DAMN!


@
Click to expand...
[MENTION=137142]JaDed[/MENTION] it is NIISHAA NOT NIISHA u always mispell my name
 
niishaa said:
Are u financially secure? Because if not it is better to have a job soon. Just be positive. Have you tried meditation. It really helped me when i was going through a very depressing phase. Can you exercise? Keep urself healthy and fit hopefully you will reach ur goals in life and be sucessful
Click to expand...

Financially not really. And that's why I need to find a job ASAP. But im not sure if i can get a decent paying job for my qualification .Yes I do some stretching and cardio these days. Can't do gym or anything. Its too heavy a workout. But I guess I'm naturally pretty fit and don't gain weight at all.
 
Nikhil_cric said:
Financially not really. And that's why I need to find a job ASAP. But im not sure if i can get a decent paying job for my qualification .Yes I do some stretching and cardio these days. Can't do gym or anything. Its too heavy a workout. But I guess I'm naturally pretty fit and don't gain weight at all.
Click to expand...

Keeping fit will help you in your condition. It'd okay if you cant do gym but being active and walking even 30 mins a day will really help you. Eat right. I am sure doctor must have told you what kind of food to eat more to help you with your situation.
Look even for the best of us getting a job get's difficult so don't get negative about it. Focus on getting a job and not worry about your qualification. send your resume. It will take time but you will eventually get there. The thing is to start looking first and learning along the way to send a proper resume giving interviews and learn how to give a proper interview and even taking additional courses along the way and eventually you will get a job. Good luck to you.
 
niishaa said:
Keeping fit will help you in your condition. It'd okay if you cant do gym but being active and walking even 30 mins a day will really help you. Eat right. I am sure doctor must have told you what kind of food to eat more to help you with your situation.
Look even for the best of us getting a job get's difficult so don't get negative about it. Focus on getting a job and not worry about your qualification. send your resume. It will take time but you will eventually get there. The thing is to start looking first and learning along the way to send a proper resume giving interviews and learn how to give a proper interview and even taking additional courses along the way and eventually you will get a job. Good luck to you.
Click to expand...

Yes you are right of course. I'm actually going for an interview on Friday I guess. Let's see :)
 
Nikhil_cric said:
Financially not really. And that's why I need to find a job ASAP. But im not sure if i can get a decent paying job for my qualification .Yes I do some stretching and cardio these days. Can't do gym or anything. Its too heavy a workout. But I guess I'm naturally pretty fit and don't gain weight at all.
Click to expand...

What kind of jobs are you looking for? Amy particular role or industry?
 
Some truly inspirational people on this forum. They really define the human spirit.

Wish you guys all the best for your future.
 
Nikhil_cric said:
To be honest, I'm not interested in working right now and I really wanted to pursue my MA and hopefully even a PhD but because of pressure from my immediate family I might have to try for a job anyway. But thanks dude :)
Click to expand...

That would be ideal that as well better to go for PHD and try to become a lecturer or researcher but best of luck in anything you decide mate.
 
Sidilicious said:
What kind of jobs are you looking for? Amy particular role or industry?
Click to expand...

That's the thing though I don't want to work in an industry. I was thinking more along the lines of teaching and hence thinking of doing an MA. But I guess that's not an option anymore I guess.
 
JaDed said:
That would be ideal that as well better to go for PHD and try to become a lecturer or researcher but best of luck in anything you decide mate.
Click to expand...

Yeah that's what I had in mind as well but parents have worked in the corporate world (read IT) and think it's better I write the test for bank officer and do an MBA afterwards . :facepalm:
 
Nikhil_cric said:
Yeah that's what I had in mind as well but parents have worked in the corporate world (read IT) and think it's better I write the test for bank officer and do an MBA afterwards . :facepalm:
Click to expand...

I'm in IT bro its dull here unless you have interest in coding.Also i sometimes think i should had written Bank PO exam reason being stable life lot of transfers(good thing if you don't like one place)
but if you want to do MBA later than you can rather do it now itself but i find it expensive and i see people changing(negative,greedy) after doing it probably coz all the loan and stuff.
 
JaDed said:
I'm in IT bro its dull here unless you have interest in coding.Also i sometimes think i should had written Bank PO exam reason being stable life lot of transfers(good thing if you don't like one place)
but if you want to do MBA later than you can rather do it now itself but i find it expensive and i see people changing(negative,greedy) after doing it probably coz all the loan and stuff.
Click to expand...

Yeah this is true. The corporate world is for highly ambitious and driven folks who have the health to put in the hours to acheive their ambition. Not that theres anything wrong with it but i won't survive a day in such a cut throat environment. Anyway I wouldn't be able to handle that kinda job without ruining my health anyway.
 
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