WHATS THE POINT?

[Derann]

I have been in hospital that many times this year that life really doesn't seem worth living, i would gladly take whatever to get out. this is not a life it's just an existence. so what is the point? the pain is that bad sometimes that i now have to get morphine on my repeat prescriptions. sorry if i upset anyone.

[catherine69]

Don't worry you've not upset anyone, will be honest with you felt like that myself a few times, but then I think, no, no way, I'm not letting this beat me, why should I.

I use to think that my family were fed up with me moaning or fed up with me backing out of social arrangements at the last minute cause I felt unwell but I realized they weren't, it was just me assuming they did. I use to say to myself, is this what my life is about, either sitting in pajamas because I was either to sore to get dressed or did not have the energy to get dressed.

At that point I felt I should speak with the doctor as I had become depressed, I was issued anti depressants and they helped a lot, that was nearly 2 years ago and about 6 months ago I felt I no longer needed the anti depressants and so far Ive been ok

Don't let this beat you Derann, right now your down and to be honest rightly so, you've went through a lot, but you will get there, as for the morphine, if you need to take it then you need to take it, my husband has been on morphine for many years and when initially prescribed it, it got him down, he was embarrassed about it ( we are in our early 40's and he felt people would class him as some form of drug addict) but like you he needs it and once he accepted his medical conditions as well as the meds hes prescribed he was fine.

I hope you start to feel better within yourself soon and once again, don't you go thinking you've upset anyone we've all be there at some point.

catherine

[Derann in reply to catherine69]

thank you so much, it seems funny that other people feel the sane way as your self, you summed it up to a T. since last in hospital ive been given a wheelchair as i can no longer walk any distance without being ready to go to bed, so that get me down and its my husband has to push me every where and like you i assumed he would be really "P"d off, but its me that thinks that way. im in my 40's aswell and was a chef for many many years. having to give up my work was hard as i went from working up to 16 hrs a day to sitting in the house. anyway thanks again Catherine its helped knowing im not alone.Ann

[catherine69 in reply to Derann]

you were a chef, fantastic, well once you feel better if you ever feel like writing out some recipes I for one would be so grateful, my family and I are plain eaters, we love chicken but to tell the truth I'm not a very adventurous cook, the most fancy thing I do with chicken is fajitas lol, we also have a very sweet tooth however, due to weight gain we seriously need to watch what we eat, if you know of any low fat recipes that were not to complicated or expensive I would much appreciated if you were to share them and I'm sure other members would appreciate this also, but as I said only if and when you feel like it

[Tumbleweed41 in reply to catherine69]

Whoo Hoo!! We have a chef! Ok Derann-you now have a goal! - People need you! We with PBC, etc., all have diet problems but a lot of them are the same. Would you be willing to help us all in that area??? Pleeeeeze? lol

Seriously, I do hope that you are starting to feel better and we all do understand where you are coming from. It's that old cliche' "Been there, done that". Just hang in there - tomorrow is a new day -

[busylady]

You are not alone Derann,

Catherine has offered you such wise and helpful comments I am not sure that I can add to them. BUT I do want you to know you are not alone, I, and others will be thinking of you. You sound like you have a lovely supportive Husband, so God bless him !

Try and stay strong, maybe as Catherine mentioned, talk to your Doctor, there is no shame in admitting how you feel, and sometimes taking the medication ( morphine and antidepressans if you need them) is one of these things that has to be done. You have to do what ever it takes to get you through these dark days...........................you will see the light at the end of the tunnel, even if you dont feel like that now

My thoughts and prayers are with you

A BIG virtual hug

x

[zipitydoo]

Sorry to hear you are so down at the moment but it is totally understandable. it wears you down. You must look for the positives though. like you now have a chair so can get to places you couldnt walk to beofre.

Depression goes hand in hand with a lot of long term illnesses. If you havent already you should talk it over with your GP.

Lets hope the next year will be tons better for you.

[Helmary]

So sorry that you feel so bad at the moment. Again like so many of us I totally understand how you feel and have been in almost the same boat. I was using a walking stick due to pain and balance problems (bone and muscle pain with the tiredness are my biggest bogies) and eventually was prescribed morphine. It has made a big improvement to my life as I rarely use my stick and in my case I would say reduced the pain by about 60 per cent. I do hope it helps you to cope that wee bit better with the pain. Take care.x

[Cristina_Romania]

Check out the Positive Mental Attitude workshops of the PBC Foundation. Please just do it, then you'll understand.

In the Members' Section on the PBCF website you can fin something highly interesting (and fun too) about that.. Please check it out.

[KarenRL]

Ann,

I'm so sorry that you are having such a hard time.

Like someone said earlier, I think a certain amount of depression goes hand in hand with battling a long-term illness. It's perfectly normal to get tired of the fight and wonder what the point is when you feel so crappy anyway. It's tough not to be able to do the things you once did....things you still would like to do if you just felt better. Then, to watch the people all around you continue to live and enjoy life on the level that you once did. Of course, you are happy for them, that they are well. But, then you can't help but ask....why did this happen to me? Living with chronic pain and fatigue really takes a toll on your psyche and it also makes it nearly impossible NOT to think about your illness, because you have constant reminders. And, in your case, to have to give up your career as well. Of course you are depressed! I would be worried about you if you weren't!

I agree with Catherine, you should get whatever medication you need to help you feel better....mind and body. There is no shame in that. We are fortunate to have such options these days and should take full advantage of them. I hope you will get whatever you need to start feeling better soon and please know that you have a "safe" place here to express whatever you are feeling. Chances are, someone on this forum has shared or currently shares in whatever you are feeling. That's why we've all come here....for support from others who truly understand our struggles and challenges in living with this disease.

God bless.

Karen

[wongie]

Hi Derran,

Sorry your feeling so bad. You have every right to feel that way, your in pain and tired of it all. Hope you feel better soon. You said you used to be a chef. My daughter is at college doing professional cookery and she really wants to be a chef. she starts a job next week at a new pub that is opening near us. I bet you have loads of tips for in the kitchen for us all. when your feeling better, i too would love some of your recipes. x

[Jtxx]

H Derran. I hope that you are feeling more positive than you were a couple of weeks ago and have gone to the doctor and asked for help. Different people in their lives go through difficult times and you have to do whatever you need to to get you through. There is no shame in asking for help..... I know it is sometimes difficult to ask for help as we all like to think of ourselves as superwomen..... but believe me there is a light at the end of the tunnel.

On a positive point, when you are feeling up to it, you can focus your attention on writing a weekly blog on this website giving us all tips on healthy eating and maybe a wee recipe or two. Doing this would help so many people who are stuggling with their weight gain due to medication. Imagine the amount of people you could help. Very far reaching as there are people from all over the world on this site.

Take care and be as well as you can be. x

[Derann]

Hi JTxx, Sorry I've not answered you till now but I've not had a very good week, but Im still here. I m feeling a little more possitive just now and Its all thanks to being on this web site, knowing that there are other people out there that can totally relate to every pain that I have. I even managed to make a big pot of lentil soup and stovies ( some people won't know what this is so for them it's POTATO,CARROT,ONION and SLICE SAUSAGE.) They are both my husbands favourites, I must admit it took a lot longer than it use to but I managed. When you go down the list of all symptoms of PBC then I have them all,( I always was greedy,haha) so I have to depend on hubby to do everything, I now have a wheel chair so that we can get out for our shopping and things and he never complains ever.Don't know what I would do without him.

You said that I should do a weekly blog but I have a very boring life, not much to write about. Apart from being able to get back to doing my knitting which I'm going to try and sell on e-bay so cross you'r fingers for me. Till the next time.

Take care and I wish you well.xx

[littlemo in reply to Derann]

Hi Derann truly hope u r feeling better, i too have spent in particular the last about 6 weeks on a downer mine due to being worn down with lack of sleep due to the horrendous itch specially at night when i am exhausted after what feel like very long days trying to keep going (at least til about 3.30) when my other half gets in from work and can entertain our 5 yr old boy and taxi or keep tabs on our 16yr old daughter! I have thought about getting anti depressants so low has mood been at times (though always trying to hide that from kids) but thankfully found this site and all u and that is really helping me right now. Pain is dreadful to live with just take what u r prescribed to get u through ur days no shame in taking meds for body or mind if they help make life liveable. God bless take care and give ur hubby a big kiss he is a star as are all those who help us crocks at times with pbc!

[littlemo]

P.s. Derann may i ask what age u r and if weight is an issue for u? The reason I ask is that in 2007 when i was pregnant with my little boy i suffered dreadful pain and i too towards the last 3 months of the pregnancy could not walk without being in severe pain (and i have always felt have a high pain threshold but at the time my liver had started to fail i lost a lot of weight but just had a big pregnancy belly) but i too ended up in a wheelchair and more or less in and out of hospital from Jan-April when my wee boy was delivered by c section as he was breech and i was very weak. Glad to say I did bounce back and until about sept last year had been doing ok.

[Derann in reply to littlemo]

Hi Littlemo, sorry to hear that you are sufferfring, I totally understand about the itch, and have spent nights sitting in the livingroom trying to knit to stop me scratching and my feet in a basin of water to ease. I eventually got sachets from the doctor, its for babys really, its a kind of oatmeal consistency and you just add to the bath water and it really does help. Im glad I have no one to worry about like yourself, its hard to remain upbeat when all you want is to scream the place down.

I have had PBC for nearly nine years now, I'm 48 I spent my birthday in hospital this year. As for my weight I did put a couple of stone on when first diagnoused and it just stayed but when in hospital the first two weeks I never ate a thing, I was taken in with Pancratitice(sorry about thre spelling) and was in the high dependency unit, but I drank water constantly. I lost over a stone and a half, since coming home i'm still losing a bit. I've went from a size 20 to 12/14 depending where I buy. Its not good loosing like this as it just causes worry, In my case the other half, I have'nt had a "proper" meal since coming out of hospital as they uped my urso to 8 a day, nothing seems to taste the way it should. I now have to drink constantly because of the pancratitice as my mouth does'nt seem to produce saliva anymore, so maybe the water is filling me up to much to enable me to eat properly. Hope some of this rubbish helps, always remember you are not alone, when my hubby found this site for me he done me the biggest favour ever, to know you're not going crazy well at least not on your own.haha.

take care

[littlemo]

Hi Deran thanks for that. Are you seeing a dietician if not you probably should be ask ur dr about referring u. Its important to stay as healthy as possible to keep infections away and aid healing. I don't know if u know what stage of the disease you r at our friends in the states seem to get a lot more info re that than we do as I really don't know how far advanced my pbc is but will learn this soon I expect when I go for my assessment for maybe going on the transplant list. Keep ur chin up and try to eat even just small and often to keep u well in body and mind. Take care of u and urs.