At least I tried

i used to work in a very demanding job, working fulltime and oncall weekends and nights. My blood results and fatigue began to take a hold so I gave up work (after 20 years). When I gave up work for a year my blood results improved and I foundI was able to control the fatigue better. Because I felt better I felt I could return to a part time job, working for 18 1/2 hours. I am travelling to and from work three days a week x 27 miles each way. My blood results are now quite poor and I go to bed at 6pm and have fallen asleep at work. Result is my husband and I have agreed that I will have to leave work and it will be interesting to see if I begin to feel better and my blood results improve again. Oh well at least I tried....

9 Replies

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  • Now you can do the things you want to do. Believe me its great, the best thing I ever did. those around you will benefit also. Enjoy. You'll be surprised.

  • I'm only 25 and have had to give up work. Casual, part time or full time I can't cope. I am trained in managing hotels, I gave that up to just do reception work, gave that up to do office work and I couldn't do it. I need to be able to wake up when my body says it's time, have a nap if I need too. I hate it, I feel like I'm letting my husband down but my health is our priority. It was a tough thing, but I think you've made the right decision for you!

  • It is a nuisance. I felt like you that I was letting my husband down but he noticed I was struggling and said I should stop working. The other reason was that my little sister (who had a liver transplant because she too had pbc) died in April then I lost my big sister in December. It made me take stock of my life and I intend to live life to the full, pbc permitting... Look after yourself :-)

  • I too have had to stop working and fight for diability's to help pay for my medical. I feel horrible like I was letting everyone down but my husband told me I would be letting them down more if I died! So I sat back and thought of it from his view me taking care of my self was better for him & my children then trying to bring home a check. I have learned after 7yrs that you can live with PBC you just have to live a different way! Bless you all!

  • Hello June 9961.

    Well I too had a very demanding job (in retail, shop manager) that I took on in 2009, the year before the itching started earlier in 2010. (Diagnosed PBC Dec 2010.)

    I did regret later on changing jobs as prior I had a part-time job, non-demanding (domestic work) that worked regular Mon-Fri mid-morn to mid-aft where I simply went in, did the 4hrs daily and then went home without thinking about it). I did at the same time work Saturday in a voluntary capacity in a charity shop, reason I got the managerial job elsewhere and finished at the time voluntary and my domestic job.

    I had the job change and at the end of 2008 I had finally met up with a man who I had originally written to when he was serving in the army overseas in the mid 1990's. I had been a widow for 14yrs betime we met up and by May 2009 we were married. In the space of 9mths I had changed jobs and also started with the itch and we'd not been married a year.

    I had no holidays for 7mths and by July 2010 when we went on holiday for the first time in quite some time, it was my husband who made the decision that I should quit the job I had taken on. Despite me enjoying the job it was the powers above that made it intolerable at times with the demands, always some deadline to adhere to and the hard sell (and this was in a charity shop paid position). So after much deliberation, I quit and haven't really looked back.

    Like you June 9961 I have lost family members through the years too and I was only in my very early 20's when my mother died suddenly. I had a baby that was under a year old at the time and then shortly after my first husband started to get sick after we had a 2nd child. By early 1994 I had lost also my husband and my gran (who needing some looking after after my mother died as my mother had been her only child). Then in 1997 my dad took ill suddenly and died shortly after.

    I did work prior to meeting up with my 2nd husband and would have continued doing so as I needed to support myself but for me working in a full-time capacity back in 2010 and struggling to cope with the tiredness I did suffer from due to the long days and also the itch, it was doing m absolutely no good at all.

    I'd not feel guilty. I don't tho' I do miss not working and still long for some ideal part-time work to come along and then I'd address that then. My husband has always been in work so far so we are lucky that we have no such child ties and in our late 40's we should be able to enjoy time together as much as possible (as my husband can work lengthier days and weeks at times). At the end of the day you can't reap back any time you now lose.

    Good Luck.

  • Hi Peridot,

    Our experiences sound almost the same (apart from the two husbands) haha. I married my husband when I was was eighteen. My mum died when she was 44 from breast cancer when I was 20. I had just had my baby, my parents first grandchild. My mum was able to see her before she collapsed into a coma and died the day we came home from hospital. I worked as a manager with one of the emergency services and I too found this to be a job which meant I worked long hours, drove through terrible weather to attend road accidents etc. Whilst I was working these long hours I also lost my first grandson to meningitis, he was only 22months old. The pressure finally took its toll and I was advised by my hospital consultant to work less hours and not go out on call. Unfortunately this was not possible so after 20 years decided I should retire in 2010.

    In January, 2011 my father died after a long illness, and then as I said earlier my two sisters died last year. I was happy to help my younger sister family to nurse her during her failing years, and despite a 60 mile round trip each day I actually felt quite well. Once my sister had gone I felt quite lost and because my husband works overseas I decided I needed to take on a part time job. I love this job and the people who work with me have been wonderful. However, I am just not able to stay awake and other symptoms are getting worse. I also now have a heart condition that I am getting tests for and as I said earlier with losing both my sisters I took stock and decided, along with my husband that I needed to stop working. We have a motorhome and plan to go away as much as possible in that when he comes home.

    i still think myself lucky that I can do this because financially we are quite sound, which is a good position to be in. Take care and be well.

  • Hi June my goodness you have been through a lo in your life. Hopefully now you have made the wise decision to stop working for sake of your health you will start to enjoy your life and have better health. I have just recently returned to work after being off for 6months and am only working 12hrs week so far as doing a phased return to work but am finding these hours thogh few even enough for me as I do have some bad nights when I dont sleep too well and the fatigue has gotten worse recently. So I need to decide over next few weeks if will return to my 18.75hrs a week or just stay on the reduced hours and tighten the belt money spending wise. Prob is I am hoping to get married next yr (about time mind as my partner and I have beeen together fjor more or less 20 yrs and have two lovely children aged 5yrs and 16yrs!). If you don't mind me asking what age was your sister who also had PBC when she died was it to do with the PBC?

  • Hi Littlemo, my sister was 53 years old. She had a liver transplant 16 years ago. She actually died of cancer. During those 16 years she lived a full life, being able to return to work quite quickly after her transplant. We were very close indeed and I miss her so much.

    I know what you mean about your working. I used to work in the region of 80 hours per week and laterly I cant even manage to work 18 1/2 hours. I wish you all the best in your forthcoming marriage and am sure your children will keep you busy. Enjoy life xx

  • We know that fatigue is very much a real part of PBC. In order to move forward, it is imperative that members learn to manage their fatigue and not fight it.

    There are many things we can do on a day to day basis to increase our energy levels. A good diet and large water intake help, as do cutting caffeine and sweet things. Sometimes, the key to gaining more energy is to actually spend energy. We have many examples of people expending energy in a positive way and gaining enormously by doing so.

    There are more details in Bear facts, the compendium and, of course, the members' section of the website.

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