General moan - liver disease
Discussion
I just thought I'd have a moan as I'm feeling down today 
I was diagnosed with liver disease (PSC) around 7 years ago, when I was around 20. It's been progressing slowly and I have had to reduce my hours at work, which has cost me £6000 a year in wages, in addition to that I need regular prescriptions (although I do buy a yearly pre-payment prescription to save money). The main symptoms of my illness are chronic fatigue/ tiredness and weight loss, which has led to me having to stay in hospital a few times as I'd get into a cycle of sleeping rather than eating. At one point I weighed about seven stones.
My girlfriend and I are trying to save up for our own place, but my reduced wages from cutting my hours isn't helping things. I also worry about what were to happen if I was properly ill and needed a transplant or something, especially if we had a mortgage. I've read that 9 years after diagnosis is the average time for liver failure and required transplant, so that is potentially less than two years away from me. In addition to that the doctors are constantly telling me that I'm at higher risk from numerous types of cancer (I also have Ulcerative Colitis), and I've suffered from depression on and off since my diagnosis. I've read about procedures and operations I may be facing in the future and they terrify me, far more so than the thought of dying.
So, that's it. I'm not really asking for any kind of advice here, I'm just feeling s
t this week and fancied complaining about it. I know some people have it worse, and some people have it better.
I was diagnosed with liver disease (PSC) around 7 years ago, when I was around 20. It's been progressing slowly and I have had to reduce my hours at work, which has cost me £6000 a year in wages, in addition to that I need regular prescriptions (although I do buy a yearly pre-payment prescription to save money). The main symptoms of my illness are chronic fatigue/ tiredness and weight loss, which has led to me having to stay in hospital a few times as I'd get into a cycle of sleeping rather than eating. At one point I weighed about seven stones.
My girlfriend and I are trying to save up for our own place, but my reduced wages from cutting my hours isn't helping things. I also worry about what were to happen if I was properly ill and needed a transplant or something, especially if we had a mortgage. I've read that 9 years after diagnosis is the average time for liver failure and required transplant, so that is potentially less than two years away from me. In addition to that the doctors are constantly telling me that I'm at higher risk from numerous types of cancer (I also have Ulcerative Colitis), and I've suffered from depression on and off since my diagnosis. I've read about procedures and operations I may be facing in the future and they terrify me, far more so than the thought of dying.
So, that's it. I'm not really asking for any kind of advice here, I'm just feeling s
t this week and fancied complaining about it. I know some people have it worse, and some people have it better. Sorry to hear it mate. I know some chronic disease/chronic illness hospital programs include a bit of counsellor and peer support stuff, don't rule out seeking some help in that direction if you think it might be useful.
Finances wise, are you on all the support you need in terms of benefits and tax credits? Definitely worth checking, that little bit of extra help might just keep your head above water.
Finances wise, are you on all the support you need in terms of benefits and tax credits? Definitely worth checking, that little bit of extra help might just keep your head above water.
BlackVanDyke said:
Sorry to hear it mate. I know some chronic disease/chronic illness hospital programs include a bit of counsellor and peer support stuff, don't rule out seeking some help in that direction if you think it might be useful.
Finances wise, are you on all the support you need in terms of benefits and tax credits? Definitely worth checking, that little bit of extra help might just keep your head above water.
Thanks. I was offered a counselling type thing in the very beginning, but I don't really like to talk or even think about it. Even my employers only know the bare minimum of what the doctors have told them, and my girlfriend just knows what she's looked up on the internet. Finances wise, are you on all the support you need in terms of benefits and tax credits? Definitely worth checking, that little bit of extra help might just keep your head above water.
I don't claim any benefits or tax credits, I wouldn't really know where to start with things like that. Is there someone to seek advice from on these matters? Something like Citizens Advice maybe? The doctors told me to apply for a disability benefit when I was first diagnosed (can't remember how I went about getting the forms and whatnot), but that was rejected on grounds of my illness apparently not affecting my life, although that was before I had to cut my hours, and also before I'd had to stay in hospital.
PumpkinSteve said:
BlackVanDyke said:
Sorry to hear it mate. I know some chronic disease/chronic illness hospital programs include a bit of counsellor and peer support stuff, don't rule out seeking some help in that direction if you think it might be useful.
Finances wise, are you on all the support you need in terms of benefits and tax credits? Definitely worth checking, that little bit of extra help might just keep your head above water.
Thanks. I was offered a counselling type thing in the very beginning, but I don't really like to talk or even think about it. Even my employers only know the bare minimum of what the doctors have told them, and my girlfriend just knows what she's looked up on the internet. Finances wise, are you on all the support you need in terms of benefits and tax credits? Definitely worth checking, that little bit of extra help might just keep your head above water.
I don't claim any benefits or tax credits, I wouldn't really know where to start with things like that. Is there someone to seek advice from on these matters? Something like Citizens Advice maybe? The doctors told me to apply for a disability benefit when I was first diagnosed (can't remember how I went about getting the forms and whatnot), but that was rejected on grounds of my illness apparently not affecting my life, although that was before I had to cut my hours, and also before I'd had to stay in hospital.
Sorry to read this, out of interest though, how did it get diagnosed in the first place? I only ask as I've had 3 blood tests come back recently with abnormal levels of stuff (not sure what though as they kept the printouts) and have been having full on lethargy that literally stops me in my tracks.
I can't seem to see any "next stage" in terms of getting help but your comment in the fatigue seems to ring a bell.
Not an easy thing to do, but try not to stress too much over it as its often the stress that puts your body under too much strain rather than any illness on its own.
I can't seem to see any "next stage" in terms of getting help but your comment in the fatigue seems to ring a bell.
Not an easy thing to do, but try not to stress too much over it as its often the stress that puts your body under too much strain rather than any illness on its own.
MrChips said:
Sorry to read this, out of interest though, how did it get diagnosed in the first place? I only ask as I've had 3 blood tests come back recently with abnormal levels of stuff (not sure what though as they kept the printouts) and have been having full on lethargy that literally stops me in my tracks.
I can't seem to see any "next stage" in terms of getting help but your comment in the fatigue seems to ring a bell.
Not an easy thing to do, but try not to stress too much over it as its often the stress that puts your body under too much strain rather than any illness on its own.
Sorry, I missed this. I was having terrible stomach pains and severe diarrhoea, as well as tiredness and fatigue. The doctors missed it at first, and it was only after having a second blood test months later, because I'd lost so much weight, that they referred me to the hospital. It was elevated levels though, bilirubin is the common one that my specialist shows me. I can't seem to see any "next stage" in terms of getting help but your comment in the fatigue seems to ring a bell.
Not an easy thing to do, but try not to stress too much over it as its often the stress that puts your body under too much strain rather than any illness on its own.
The hospital have posters up advising that if you often feel tired a lot you should go to the doctor for a blood test, so if you really think something is up then keep at them. They missed mine at first because they were looking for viruses, and it was only when they did a full blood count that they noticed the elevated levels.
Pothole said:
Strikes me as a very good reason to go for the counselling.
Indeed, Sounds like an element of head in sand on this, something I know I have done in the past with my health - I always have a reason to wait and see before actually going to a doctor. You can't be supported by thse around you unless you let them in on your worries and fears. But you don't want to let them in, because you are scared that by doing so you "make them real"
Counselling can help with those issues, help you gain confidence and acceptence by sharing your feelings with those you love (and those that love you!)
Wimmin are good at this stuff - men much less so (from my observations)
Gassing Station | Health Matters | Top of Page | What's New | My Stuff