This topic contains 11 replies, has 8 voices, and was last updated by 
tom 13 years, 2 months ago.
John is working full time and sometimes I am afraid it is too much for him. He is doing extremely well compared to many other MM patients, and of course I am aware that it is his strong will to live and his passion for his work which helped him to fight his way back to life after having looked like a prisoner from a concentration camp.
But on the other hand I see HOW tired he is and it makes me worry. When it is too much, he becomes kind of febrile and breathless and he speaks very fast. Then it helps if I give him sugar, usually a piece of cake, chocolate or a soda.
It seems difficult for him to find the balance between taking care of himself and forgetting about the disease living the life he wants. It is also difficult to talk to him about it because he is the kind of person who never wants help from others – while he is an extremely helpful person himself (annoying!).
Does anyone know if it has an influence on the myeloma that he works so much? Would it come back earlier than if he had more rest?
My husband wanted to work as a goal and to prove he had a normal life.
He had been off work for 18months and missed the social contact and banter so work but perhaps part time or less hours is the answer
Min
Hi Amelie
I understand John's and every one out their who has MM for wanting to have a goal so as to get better faster.
I also had the goal to get back to work BUT My Consultant and the Cancer Nurse (who's husband used to work with me) told me I should not go back to my Job, its heavy Work and would mean stress on my back arms and shoulders 🙁 but hey oh I said I wanted ? No needed to go back and see if I could do it.
I had a talk with our Personal Manager along with the Director (all top folk) I was told they had got a job for me 🙂 and it was to sit in a brick building and book the lorry's in 🙁 wouldn't have to move 🙁 and I could start when I wanted to 🙂
I told them I wanted to come back and do "The" Job (mine) and try and see if I can do it?? was told to come and do this one first and see (same money) well some 16 months down the line am still doing the same job 🙂 could I go back to my job and do it NO. at the moment its still light duties and i still get tired 🙁 Elaine says cut my hours down and do Mon, Tues then Weds Off then thurs,friday then two days off sounds good but al give it a little bit longer on 40 hours (yep am a stubborn cuss)
Its hard to get to an working state and still be fit and healthy cos we have MM and that in itself makes us tired.
As fo me am pleased I took this "Light Duty" on as it gives me some thing to do some one else to chat to rather than Just Elaine and the postman OH and those tele sales 🙂 who were a blessing in that year I was on sick, wouldn't let them hang up ha ha good chat with some he he
Love from one workaholic (light duties only)
Tom "Onwards and Upwards" xx
Hi Amelie
The question,is a hard one,as a carer you will worry about it,is he doing to much?? but if he was at home would he be doing to much?,and the answer lies within his nature,his body his decision.
Slim my husband,the minute he starts to feel better,he goes over the top,thinks he can do every thing,you end up nagging,not helpful.
So now I sit back,wait until it get,s to much for him,and take over.
I would love to decorate my lounge but I know Slim could not sit back and watch me!!!
Let your husband enjoy the pleasure of being able to work,no one knows why,some people have longer remissions than others,or why some people do not get to that stage.
One day at a time eve
Hi Amelia,
I think there is an element in us all that deep inside we want to believe that really there is nothing wrong with us and if we just keep working hard it will all disappear and go away. Unfortunately, with MM, it might disappear from view for awhile but it never goes away.
As you know I am 68 and retired but I still have my Job list and every morning I get up and select something from it to do. Today I am going to clean the Carpets, yesterday I painted the outside table and chairs ready for the winter. The point is it is just one job, it may take time or be mucky and even hard to do sometimes but when I have done it I feel great and I go and play on the Computer ? I play Age Of Empires Online and World of Tanks. These games make my brain go into overdrive I have to think fast and react quickly most people I play against are between 11 and 35.
So what about you and John sitting down and looking at a different life style, picking up on the things he likes to do?
I hope this is of some help.
Kindest regards ? Vasbyte
David
Opps edit Tom to John
Thanks for the replies everyone!
John isn't my husband, but a dear friend. He is much older than me and I consider him as a kind of second father. We work together (that is where we met) and that is why I see how he manages working.
There is no doubt that work is very important to him. He is a boss so it is difficult for him to limit the work, although his boss has said they would allow him to work part time if it suits him better. They will do everything to keep him.
To find the balance is difficult and I would like to know, if it has any concrete impact on the disease. Luckily his work isn't physically hard so it doesn't harm the bones, but I don't know what stress could cause? Has there been any studies of that?
Hi,
My husband has been off since late March. He was told when his levels were steady for +4weeks he could go back (mainly his neutrophils). They went a whole 4 weeks but that's it. He's still home. As much as he is waiting to go back it is for the best and it had taken his SO long to come to terms with that. He would go to work if his eyes were bleeding out! There was 1 time I told him he shouldn't go because he didn't look right, he went.. Then came home ill… I think with men it can be a pride thing. I would mention his symptoms to his consultant or even call the nurse yourself and ask their opinion. I do it all the time. The Consultant will ask him how he's doing then ask me if he's left anything out!! lol He does want to rest and not through his red & white cells out a wack, he is a t a risk of infection because of the MM. If he has holiday time suggest he take it and then he can have some down time. I know you're worried it's natural being the carer.. It's a balance of still letting him have control of his health (for lack of a better word) and stepping in yourself and saying.. NO! Trust me you will know when you have to put your foot down. I still struggle because I want to do everything and he still wants normality. I would say if he has holiday time ask him to use it, he may see himself he feels better taking it easy. Good luck. Thoughts & prayers.. xx
It really comes down to that old say, said many times by many people on this site, [b]listern to your body[/b]. I do, and, I think it pays off.
Kindest reagrds – vasbyte
David
Dear Amelie,
This is such a difficult issue. For some people being able to work and in our case provide for a family, are very closely related to their self respect and self esteem. All my husband could think of when he was so ill with the symptoms and treatment for myeloma was getting back to normal, he was obsessed with it and it became his mantra. He was off work for more than a year and was utterly miserable when his sick pay ran out after 6 months, even though we were able to make changes and manage on what I earn. He felt he was not doing his part. Its crazy I know but it was so important to him, to the man he saw himself as. He has been back to work full time since January and that includes a 90 minute commute, each way. The one concession he has made is driving to the station instead of a 20 minute walk, althugh he insists he should be doing that too. I dont know why he is so driven and it worries me sick as you can imagine. I think he believes that if he can build up his strength and fitness, he is also obsessed with exercise, then it will keep the MM at bay longer. I dont think there is any evidence for this, but I do think he will be able to deal with the treatment better if he is fitter when the time comes. It is so difficult to advise people like this, I just drop ideas into our conversations and hope that one day he will think its his own idea to take things more easily. He has Just turned 55 and I know he hopes he will be old enough to retire before he relapses. Its a kind of extreme positive thinking, and i really dont have the heart to take that away from him.
I hope this has been helpful, I dont post often these days and tend to go on a bit when i do. I hope all contiues to go well for you and John,
Love Mari xx
Great to hear everyone's experiences.
I think you are right David – it is wise to listen to the body, but I am not always sure if John does. 🙁
I had stem cell transplant in Jan 11 and returned to work 1st June. I find I am very tired even though I am still on reduced hours. I think there has to be a happy medium and I am seriously considering going part-time if the work can accommodate me. I am 57 now and feel too young to retire and I like the banter at work and can forget about cancer and hospitals and having something other than TV to talk to my wife about.It makes to feel like I have achieved something. All the best.
Hi Ozzy
I know how you feel with the tiredness I am 56 and work mon to friday 6/2 and have to admit come weds am ready for a day off :-/
I also feel too young to retire and tell my young bride (elaine) that am sure the time will come when I have to take time off?? but not now 😀
Work is tiring but hey its supposed to be lol.
Keep fit Ozzy
Tom "Onwards and Upwards"
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