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Chronic illness
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By (user no longer on site) OP
over a year ago
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Anyone else?
Just having a really shit day (week/month/year) and feeling sorry for myself.
That whole "Oh I'm getting better, oh wait no I'm bloody not" thing.
Sick and tired of feeling sick and tired.
I keep chasing stupid random things that seem to trigger my symptoms. Weirdly I think the latest was having a hot bath yesterday, as I was doing for good until then. I also now feel guilty for eating two packets of crisps today. Fuck knows what that'll do to me for tomorrow.
Gah! |
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By (user no longer on site)
over a year ago
|
Diagnosed with Crohn's disease last year.
Was majorly pissed off and took me a while to accept, but I just think fuck it now, I'm stuck with it and have to make the best of a pretty shit situation.
I'm 95% back to normal now though that it's been in remission a while  |
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By (user no longer on site) OP
over a year ago
|
I've had this over 7 years now. Tiny bit bored of it. Debating whether to go on some hardcore drugs with serious side effects, or try and stick with a very limited lifestyle to try and limit it.
I'm crap at decisions when I'm knackered.
Big hugs to everyone else who feels miserable. Wish we could have a rota so we get good days in turn.  |
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By *obka3Couple
over a year ago
bournemouth |
"I've had this over 7 years now. Tiny bit bored of it. Debating whether to go on some hardcore drugs with serious side effects, or try and stick with a very limited lifestyle to try and limit it.
I'm crap at decisions when I'm knackered.
Big hugs to everyone else who feels miserable. Wish we could have a rota so we get good days in turn. "
Try some homeopathic remedies they do work and dont have side affects, go to a reputable doctor and they will help, you have nothing to lose and far better than taking medicines which all have side affects |
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By (user no longer on site)
over a year ago
|
It's taken me nearly eight years to get close to being offered a diagnosis.
Eight years to find out what's wrong. I'm expecting another eight before I get a management regime down |
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By (user no longer on site)
over a year ago
|
I have fibromyalgia and a suprest Immune system ,I take really strong pain relief when im bad just to knock my self out and gives me relief from pain ,I feel for any body with a chronic illness and feeling with it day in day out x |
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By (user no longer on site)
over a year ago
|
I have a chronic auto immune condition and it affects every part of my life. I'm only 27 but sometimes I feel like I'm 80! It's hard going trying to manage bad days but I fill the good days with fun stuff 
I've been pretty unlucky to have some of the most rare complications of my condition, potentially life threatening complications. But what can you do except keep going  i feel you OP, I really do xx |
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By (user no longer on site) OP
over a year ago
|
"I have a chronic auto immune condition and it affects every part of my life. I'm only 27 but sometimes I feel like I'm 80! It's hard going trying to manage bad days but I fill the good days with fun stuff
I've been pretty unlucky to have some of the most rare complications of my condition, potentially life threatening complications. But what can you do except keep going i feel you OP, I really do xx"
Mine's autoimmune too. Not as bad as your from the sound of it. Got my first diagnosis aged 12 and that was easy to manage but got a new condition added 7 ish years ago which is a bit of a nightmare.
It's crap when your own immune system hates ya.
I'm trying an anti-inflammatory diet which is stopping it going totally crazy but it's so hard to stick to. No alcohol. 
No sugar (except fruit). Basically eating clean and boring and lots of green smoothies.
I struggle with it as a permanent solution. But it's not really working and my only other option is chemo drugs. Yay.
Bit worried about suppressing my immune system and swinging? |
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By (user no longer on site)
over a year ago
|
"I have a chronic auto immune condition and it affects every part of my life. I'm only 27 but sometimes I feel like I'm 80! It's hard going trying to manage bad days but I fill the good days with fun stuff
I've been pretty unlucky to have some of the most rare complications of my condition, potentially life threatening complications. But what can you do except keep going i feel you OP, I really do xx
Mine's autoimmune too. Not as bad as your from the sound of it. Got my first diagnosis aged 12 and that was easy to manage but got a new condition added 7 ish years ago which is a bit of a nightmare.
It's crap when your own immune system hates ya.
I'm trying an anti-inflammatory diet which is stopping it going totally crazy but it's so hard to stick to. No alcohol.
No sugar (except fruit). Basically eating clean and boring and lots of green smoothies.
I struggle with it as a permanent solution. But it's not really working and my only other option is chemo drugs. Yay.
Bit worried about suppressing my immune system and swinging? "
I will PM you xx |
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By (user no longer on site)
over a year ago
|
"I have a chronic auto immune condition and it affects every part of my life. I'm only 27 but sometimes I feel like I'm 80! It's hard going trying to manage bad days but I fill the good days with fun stuff
I've been pretty unlucky to have some of the most rare complications of my condition, potentially life threatening complications. But what can you do except keep going i feel you OP, I really do xx
Mine's autoimmune too. Not as bad as your from the sound of it. Got my first diagnosis aged 12 and that was easy to manage but got a new condition added 7 ish years ago which is a bit of a nightmare.
It's crap when your own immune system hates ya.
I'm trying an anti-inflammatory diet which is stopping it going totally crazy but it's so hard to stick to. No alcohol.
No sugar (except fruit). Basically eating clean and boring and lots of green smoothies.
I struggle with it as a permanent solution. But it's not really working and my only other option is chemo drugs. Yay.
Bit worried about suppressing my immune system and swinging? "
I take a DMT(disease modifying therapy), which means my immune system is comprised. Though luckily I'm doing well as not had a major flare up since this time last year. Yeh, there are side effects but there are things I do to keep them under control. Oh and one of the side effects I get are nightly hot sexy erotic sweet dreams, so not all side effects are bad or unbearable.
I did worry about meeting people, but if you take all the necessary precautions that you would normally take you should be fine.
I've been lucky enough to meet someone that has gained my trust. I've now shared with them about my condition, he has been marvellous!! He understands how I have a near daily battle with fatigue, though I'm still continuing to work in my full-time job. Bless him he also knows not to come near me if he has any bugs or germs so as not to risk me becoming unwell.
I would have preferred to PM you but your settings must be much the same as mine, so public post it is
Wish you luck whatever treatment you decide to go with.  x x |
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By (user no longer on site) OP
over a year ago
|
"I have a chronic auto immune condition and it affects every part of my life. I'm only 27 but sometimes I feel like I'm 80! It's hard going trying to manage bad days but I fill the good days with fun stuff
I've been pretty unlucky to have some of the most rare complications of my condition, potentially life threatening complications. But what can you do except keep going i feel you OP, I really do xx
Mine's autoimmune too. Not as bad as your from the sound of it. Got my first diagnosis aged 12 and that was easy to manage but got a new condition added 7 ish years ago which is a bit of a nightmare.
It's crap when your own immune system hates ya.
I'm trying an anti-inflammatory diet which is stopping it going totally crazy but it's so hard to stick to. No alcohol.
No sugar (except fruit). Basically eating clean and boring and lots of green smoothies.
I struggle with it as a permanent solution. But it's not really working and my only other option is chemo drugs. Yay.
Bit worried about suppressing my immune system and swinging?
I take a DMT(disease modifying therapy), which means my immune system is comprised. Though luckily I'm doing well as not had a major flare up since this time last year. Yeh, there are side effects but there are things I do to keep them under control. Oh and one of the side effects I get are nightly hot sexy erotic sweet dreams, so not all side effects are bad or unbearable.
I did worry about meeting people, but if you take all the necessary precautions that you would normally take you should be fine.
I've been lucky enough to meet someone that has gained my trust. I've now shared with them about my condition, he has been marvellous!! He understands how I have a near daily battle with fatigue, though I'm still continuing to work in my full-time job. Bless him he also knows not to come near me if he has any bugs or germs so as not to risk me becoming unwell.
I would have preferred to PM you but your settings must be much the same as mine, so public post it is
Wish you luck whatever treatment you decide to go with. x x"
Sorry yeah I've blocked basically everyone. I'm too exhausted to deal with most messages so my filters are maxxed out. That's really helpful, thank you. |
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By *imiUKMan
over a year ago
Hereford |
"I asked if taking my intestines out would cure me. They said yes.
Nice one, when can you fit me in?
The nurse didn't seem too impressed  "
I had UC and thats almost how it happened for me - my first bout was so severe that I developed symptoms in the November and was in intensive care by February having undergone a total colectomy and ileostomy.
On reflection. I'd much rather have the bag than having to manage UC. |
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By (user no longer on site) OP
over a year ago
|
"Yep. I have one and it is frikken exhausting between trying to deal with the pain/fatigue and balancing a full time hectic job and life. It's fun!  "
Big hugs. And maybe chocolate. |
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By (user no longer on site)
over a year ago
|
"I have a chronic auto immune condition and it affects every part of my life. I'm only 27 but sometimes I feel like I'm 80! It's hard going trying to manage bad days but I fill the good days with fun stuff
I've been pretty unlucky to have some of the most rare complications of my condition, potentially life threatening complications. But what can you do except keep going i feel you OP, I really do xx
Mine's autoimmune too. Not as bad as your from the sound of it. Got my first diagnosis aged 12 and that was easy to manage but got a new condition added 7 ish years ago which is a bit of a nightmare.
It's crap when your own immune system hates ya.
I'm trying an anti-inflammatory diet which is stopping it going totally crazy but it's so hard to stick to. No alcohol.
No sugar (except fruit). Basically eating clean and boring and lots of green smoothies.
I struggle with it as a permanent solution. But it's not really working and my only other option is chemo drugs. Yay.
Bit worried about suppressing my immune system and swinging?
I take a DMT(disease modifying therapy), which means my immune system is comprised. Though luckily I'm doing well as not had a major flare up since this time last year. Yeh, there are side effects but there are things I do to keep them under control. Oh and one of the side effects I get are nightly hot sexy erotic sweet dreams, so not all side effects are bad or unbearable.
I did worry about meeting people, but if you take all the necessary precautions that you would normally take you should be fine.
I've been lucky enough to meet someone that has gained my trust. I've now shared with them about my condition, he has been marvellous!! He understands how I have a near daily battle with fatigue, though I'm still continuing to work in my full-time job. Bless him he also knows not to come near me if he has any bugs or germs so as not to risk me becoming unwell.
I would have preferred to PM you but your settings must be much the same as mine, so public post it is
Wish you luck whatever treatment you decide to go with. x x
Sorry yeah I've blocked basically everyone. I'm too exhausted to deal with most messages so my filters are maxxed out. That's really helpful, thank you. "
No need for sorry. We all choose how we wish our settings to be,so they're the way that best suit 'us'.
Take care of you. Keep your chin up.
I'm trying to hold onto the fact that medical science progresses year on year. So a cure might just come along.
A song a good friend of mine sent me when he heard my diagnosis is of comfort to me. It's a song called Unknown by Athlete. "Hope is never light-years away".
Good luck OP. x x |
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By *imiUKMan
over a year ago
Hereford |
"I have a chronic auto immune condition and it affects every part of my life. I'm only 27 but sometimes I feel like I'm 80! It's hard going trying to manage bad days but I fill the good days with fun stuff
I've been pretty unlucky to have some of the most rare complications of my condition, potentially life threatening complications. But what can you do except keep going i feel you OP, I really do xx
Mine's autoimmune too. Not as bad as your from the sound of it. Got my first diagnosis aged 12 and that was easy to manage but got a new condition added 7 ish years ago which is a bit of a nightmare.
It's crap when your own immune system hates ya.
I'm trying an anti-inflammatory diet which is stopping it going totally crazy but it's so hard to stick to. No alcohol.
No sugar (except fruit). Basically eating clean and boring and lots of green smoothies.
I struggle with it as a permanent solution. But it's not really working and my only other option is chemo drugs. Yay.
Bit worried about suppressing my immune system and swinging?
I take a DMT(disease modifying therapy), which means my immune system is comprised. Though luckily I'm doing well as not had a major flare up since this time last year. Yeh, there are side effects but there are things I do to keep them under control. Oh and one of the side effects I get are nightly hot sexy erotic sweet dreams, so not all side effects are bad or unbearable.
I did worry about meeting people, but if you take all the necessary precautions that you would normally take you should be fine.
I've been lucky enough to meet someone that has gained my trust. I've now shared with them about my condition, he has been marvellous!! He understands how I have a near daily battle with fatigue, though I'm still continuing to work in my full-time job. Bless him he also knows not to come near me if he has any bugs or germs so as not to risk me becoming unwell.
I would have preferred to PM you but your settings must be much the same as mine, so public post it is
Wish you luck whatever treatment you decide to go with. x x
Sorry yeah I've blocked basically everyone. I'm too exhausted to deal with most messages so my filters are maxxed out. That's really helpful, thank you.
No need for sorry. We all choose how we wish our settings to be,so they're the way that best suit 'us'.
Take care of you. Keep your chin up.
I'm trying to hold onto the fact that medical science progresses year on year. So a cure might just come along.
A song a good friend of mine sent me when he heard my diagnosis is of comfort to me. It's a song called Unknown by Athlete. "Hope is never light-years away".
Good luck OP. x x"
Mine is the phrase I have tatto'd on my chest. |
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"Yep. I have one and it is frikken exhausting between trying to deal with the pain/fatigue and balancing a full time hectic job and life. It's fun!
Big hugs. And maybe chocolate."
Both work! Thank you |
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By (user no longer on site)
over a year ago
|
Know how you feel!
I suffer from IBS, I haven't had sex in 2 years because Ithe hurts every time I have sex which is currently being investigated. I also suffer from anaemia and I have gallstones!!
Hope you feel better soon.
I hkow |
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By (user no longer on site)
over a year ago
|
I've taught myself to deal with it. I have responsibilities and people who depend on me so I take a deep breath and steel myself for the day. I can go to bed and have a little cry when I'm on my own,if I want to. It won't get better,but it's not killing me |
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By (user no longer on site)
over a year ago
|
"Diagnosed with Crohn's disease last year.
Was majorly pissed off and took me a while to accept, but I just think fuck it now, I'm stuck with it and have to make the best of a pretty shit situation.
I'm 95% back to normal now though that it's been in remission a while "
my daughter has this - the best thing apart from different levels of drugs shes tried has been teas, ginger peppermint and various green teas - honestly say they are her sanity savers |
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By (user no longer on site)
over a year ago
|
I'm so glad I saw this thread! I have chronic osteoarthritis both knees and hands!I'm waiting for a knee replacement but as i am so young they are trying to hold out as long as possible! The pain in unbearable sometimes and I've had countless ops which put me on my arse for weeks at a time! I was also diagnosed with fibromyalgia last year!
It's so hard and I feel for everyone that suffers a chronic illness! Also it's an invisible thing! People say oh well you don't look poorly!
I just try to take each day as it comes! If I need a rest day I rest! If I feel good then I enjoy it! My friends and family are a lot more supportive, as in if I have to cancel things or if I leave early which is good!
Unfortunately my husband wasn't so supportive and we split! But to be honest I'm happier! I don't feel I need to hide if I'm in pain or try to do to much as I felt again he couldn't see how much pain I was in!
Sorry for the long essay haha but giving out gentle hugs to everyone who suffers from an illness! And maybe a bum squeeze if your having a good day! Xxx |
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"I've taught myself to deal with it. I have responsibilities and people who depend on me so I take a deep breath and steel myself for the day. I can go to bed and have a little cry when I'm on my own,if I want to. It won't get better,but it's not killing me "
I just have to crack on with it too. I hate that I have to but that's the way it is. I've been ill for 29 years, diagnosed 21 years ago. Drugs aren't working & due to funding I can't have the op I need/want until it becomes an emergency yet I could have had it 10 years ago if i wasn't pregnant. It's not fair on me, my kids or my colleagues who have to cover for me or care for me |
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