Hope everone is doing well, couple of quick questions if you don't mind, some are long, sorry..
1. I returned to work around May last year 2018 after a long spell in hospital with diagnosis being cirrhosis, stage 4 decomponsated at the time (nov 2017) with only days/weeks given to live. At work i have not been given a great deal of support but tried my hardest to get back to normal and managed to get through to end jan 2019 without any sickness etc. I was told by the management that i "was not performing as well as i used to and was given a lower grade (bonus / etc) ... i am still very poorly and this seems very harsh to me as i am trying my best, all in all lost around 7--8 stone, had bouts of HE and everything else. Now following this 'review" my friends daughter became very ill with liver clots and portal varicies bleeding. This sent me on a blind panic all my stress and worry came to the forefront again, resulting in me being signed off work sick, becoming confused and panicky a lot. All put down to anxiety and have been taking counselling, which i find is really helpful. My 1st question is work related, i feel they don't overly care and would fire me in a flash given the chance, I'm teeated like a 5 year old and spoken down to/over a lot, this would not have happened prior to my illness. also i don't have a massive amount of support from them, no return to work plan, signed back on as fit with little checks etc.
I have a family mortgage etc so it would devastate our life if i was to lose my job. I worry 90% of the time about my job and will be honest have little idea of my rights, what are they? In basic terms or a website i can refer to at this rate my family will fall apart due to stress and not job loss
2nd 2 questions are not that major, more annoying
2.my feet are always numb / tingling. Its a hard feeling to explain, almost like i have an extra sole in my shoe for comfort and its always attached to my foot, i cannot properly feel the base of my feet and they 'tingle' a lot, i also feel the need to click the toes if that makes sense. Assume liver fun but google won't tell me, only that i may live 2 years if I'm lucky, i love google and its well wishes
3. weakness, i suffer a lot from this. I have been for numerous tests in the last few weeks and nothing has changed / become worse since last check in oct, my weakness however is bad. I.struggle to get up stairs without sounding like i I'm 110 (I'm 48) and also getting up from seats/out of cars etc. I stumble a little and loose my balance on a few occasions this resulted in yesterday me falling over in the close at home, more of an embarrassment than any harm but its a concern though. Also had bouts of what i call slurred speech, my wife and children say they have not noticed, although the amount of "pardons" i think they are being kind (they are however normally the first to say). Now i know walking and talking issues are classic HE but after us scan//bone scan, all bloods and other tests all has come back good and no sign of anything worsoning. I am thinking very clear and not confused however its sometimes difficult walking and talking and its like i have to really concentrate on it, can the mind alone do this? ... quick add on, when I'm talking to the dog i seem to be ok as i feel she diesnt really care what i say as she understands none of it (i dont slur at all) ... guess what I'm asking is 3.1 will weaknesses cause me to stumble / fall and is so a good diet and exercise is a great start, especailly swimmin? and 3.2 can your speech be altered through stress and anxiety or is there something else that could be going on.
Appreciate you are not doctors (unless any off you are) so any answers may be from experience. Sorry its a long one, juts thought i would get through all my concerns in one go (well most my concerns anyway) ...
In general i am doing very wel and plodding on just fine, winter is a downer and can't wait till summer, life is good, just the odd curve ball to dodge and plan to go back to work monday unless lotto win
Thanks for listening
Chris
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Chris-harris
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I empathise with your situation, I was stage 4 decompensated and showed all the symptoms you displayed. I was listed for transplant but it was a long wait due to my blood group, 19 months and 10 months to get well enough for the assessment.
I was self employed and worked mostly from home and hospitals and managed to avoid the work place pressure apart from the occasional meeting. Falls were common and I installed a fall alarm. I do not think I could have done full time in an office. You are covered however by the disability act and maybe you should make inquiries, a thought?
Good luck,
Mark.
Apologies it is the Equalities Act 2010
Equalities Act Employment
It’s against the law for employers to discriminate against you because of a disability. The Equality Act 2010 protects you and covers areas including:
application forms
interview arrangements
aptitude or proficiency tests
job offers
terms of employment, including pay
promotion, transfer and training opportunities
dismissal or redundancy
discipline and grievances
Reasonable adjustments in the workplace
An employer has to make ‘reasonable adjustments’ to avoid you being put at a disadvantage compared to non-disabled people in the workplace. For example, adjusting your working hours or providing you with a special piece of equipment to help you do the job.
Recruitment
An employer who’s recruiting staff may make limited enquiries about your health or disability.
You can only be asked about your health or disability:
to help decide if you can carry out a task that is an essential part of the work
to help find out if you can take part in an interview
to help decide if the interviewers need to make reasonable adjustments for you in a selection process
to help monitoring
if they want to increase the number of disabled people they employ
if they need to know for the purposes of national security checks
You may be asked whether you have a health condition or disability on an application form or in an interview. You need to think about whether the question is one that is allowed to be asked at that stage of recruitment.
Redundancy and retirement
You can’t be chosen for redundancy just because you’re disabled. The selection process for redundancy must be fair and balanced for all employees.
Your employer cannot force you to retire if you become disabled.
Your employer sounds vile. Unfortunately staff loyalty counts for nothing these days. They just want their pound of flesh and aren't interested in your welfare. You're not diabetic are you? As diabetes can cause numbness in your feet. I think I'd be inclined to contact welfare rights about your job (look them up online) they might be able to advise you better than I can. When I was first diagnosed with autoimmune hepatitis and cirrhosis I couldn't concentrate on reading or watching the tv and I spoke very slowly and quietly apparently which I think was due to being so tired...I was also anaemic. I wish you well and hope you can get your work situation sorted out. Deb
Liver disease is classified as an impairment under the Equalities Act.
It is in place to protect people against vile employers, they are breaking the law.
Mark.
Hi
I was lucky with my employer, she tried many ways to help me but it was to no avail. In the end I was advised to take ill health retirement, it was for the best, very hard, I was 52 at the time but it was definitely the right decision with all the illnesses I have got. I really hope it all works out for you. Please take care Lynne
Sounds like you’re having a bit of a time of it. Unfortunately not everyone understands liver cirrhosis and the different things that we suffer from. As the liver performs a lot of different jobs in our bodies, it’s also a lot of diverse symptoms when things do go wrong. Also sometimes you’ve only got to say the word cirrhosis and people jump straight to the conclusion that it’s been caused by alcohol and decide not to be sympathetic. Snoutie has given lots of fantastic information regarding your question to do with work. Your other two questions regarding your health I’ve suffered with as well recently. Slurred speech is a sign of HE so I think it is essential that you mention this to your consultant especially if your reactions are slow or if you find yourself mid sentence and then stopping and forgetting what you were thinking. My HE came on very quickly but with rifaximin and lactulose it is quite easy to keep under control. I feel very week like you do, I’m forty seven and I walk like an old lady especially when tired. I got weak to the point of falling over one day when I was on a dog walk ( had only been out for 10 minutes). When mentioned to my consultant I was told to rest when tired and cancel anything I was supposed to doing. Tiredness and weakness are part and parcel of liver cirrhosis, yet at night I can t blooming sleep. In the last week I developed the numb feet thing that you talked about in my left foot. It felt very cold from the inside. As this is not a typical liver disease symptom I went to my gps and they did pin test on the bottom of my foot. So it may be worth you getting that test done and they can tell from that how much feeling you have got in your feet and how well your blood circulation is doing. I hope some of this helps. Take care
i seem to spend most my time in liimbo, either waiting for the next bout of something or worrying about what will be, sometimes i plod on, sometimes i break for a little while, this. Is one of the broken times i think
Fair play mate, you seem to worry about others more than yourself. Yeah you're I'll but it's not stopping you functioning. You're at work, a job you love by the sound of it. Forget the world just concentrate on yourself. They won't sack you as long as you keep your foot on the peddle they want you to push. Just concentrate on yourself for a bit and when you're back in the game, then look to help others. You're bosses sound selfish, so play them at they're own game. You be the same as them, look after yourself till you are strong enough to help others, then push the peddle you want. We only live once mate, but people like you are rare. All the best, Jai
You have received a lot of good information from others here.
My husband has tingling in his feet, the tingling is less these days after one of his doctors suggested he try alpha-lipoic acid. Hubby thinks it may have helped. You could ask your doctor about this - it is over the counter here in the US and a bit spendy, but ask your doctor before doing anything.
I do hope the other replies you've gotten have helped you to ask your doctor for help. I have observed that stress makes my husband's issues more noticeable. Too bad so many bosses and companies are not good with health issues.
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