Vasculitis UK
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I am finding myself feeling very low and really struggling to kick myself on. I am really surprised and disappointed with me I have always been a very positive person motivating others but for me I am gradually losing that push. I'm having side effects from the hormone tablet I am taking for the cancer but they are similar to those of the other drugs I take. The nausea I feel is such a nuisance I have to eat to give something in my stomach for the pills also for the diabetes yet I start to heave and heave then unable to eat but have to make myself.

A week on Monday my husband is going into hospital to have his knee replaced should be in for about a week trying to make lists for what I need to do. Writing this is highlighting to me just how much I need to stop feeling sorry for myself and get cracking but that's part of the problem I have always been very active but now!!!!!!!.

I miss very much just going out meeting people helping people but it is necessary to adjust to that.

Sorry reading this I have seen enough I expect you may feel the same.

I will focus on my husband and his needs for the next few weeks and work out how I get to the hospital with my wheelchair and oxygen I know I can do it. Friends are very kind in that way I am very lucky. Many do not live nearby but telephone contact is also there.

I will be known as the plastic bag lady I am putting the taxi fare for each day in little bags so I know I have got that he wants me to go to see him which I can understand.

If you have managed to stay with reading this well I think you need a reward of a nice tea, coffee etc.

Thank you.

7 Replies

I think you have plenty of reasons for feeling so low so don't beat yourself up about it. You are under a lot of stress for all too obvious reason and my heart goes out to you - which is all I can do I'm afraid. I can only give you a virtual hug - please feel hugged.

Do discuss the nausea with your doctor because there are very effective medications for that. What is important with them though is to take the pills BEFORE it gets too bad, preferably before it even starts, and then keep taking them because that way they work much better. I had this fight with my husband when he had cancer: he didn't want to take even more medication, he felt he had enough. But then the oncologist told him off, he was given the stuff by the nurses while in for the chemo and told he MUST then take it regularly to avoid the problem starting. The difference was unbelievable - and personally, I can't think of anything worse than feeling sick all the time.


Thank you for the hug I can feel it and its feels warm and comforting.

I also feel I have the yes but syndrome-------yes I could take the medication but I suffer terribly with constipation ( mainly due to taking oramorph) so medication for that. Again it is finding the balance but diet also has a lot to play I love fruit and veg also drink a lot of water when I can. My biggest problem is exercise if only I could do a lot more I think that would be a big plus but I run out of breath after a few yards.

BUT I am determined that the combination of these various conditions I have will not beat me.all I require is a shop full of energy to keep up the battle

I am sure there are many many people who have the similar issues feeling exhausted etc.

I hope you are not feeling too exhausted just reading all this but thank you all for your support.


You can have a hug from me too. PMRpro has really said it all. It is very difficult when the very person who cares for you suddenly needs caring for too. You seem to have support from good friends. Please let us know how things go for you both



Up until very recently I didn't have the fatigue but now...... am shattered. My breathing isn't great and I have pain which I don't know if is an old back injury or the vasculitis. Am I down and a bit depressed - heck yes! I just take every day as it comes, assure myself it will get easier and hope. I have a wonderful husband and sons but no other support.

I am lucky to work part time and am increasing my hours at the moment from 10 to 15 and hopefully up to 20 a week. I have a supportive and understanding boss.

It's natural to get down, don't wallow but try to continue doing the things you need to, prepare for what's due and forget the little things that don't really matter. I'm a list maker so I write down everything that needs doing then cancel out what I don 't need to or postpone them to another day, and then at night I think of 3 things that happened or I achieved to be grateful for, even a really small thing counts - yesterday one thing was attending my son's sports day at school. It helps me focus on the positives.

I also send you a big hug!


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I'm so sorry to hear about what you are going through - it must be so hard. The doc gave me sickness pills when I was taking cyclophosphamide and they really did work. Meditation helps me too as far as mood goes. I've got a crpoah at work who has give me a more scientific way of meditation for 5 mins a day called heart math. You really focus on heart and slow breathing and concentrate on something really pleasurable - I'm sure there's lots written about it on the web.

I've had foot damage due to CSS and I so miss the exercise I used to do. But I still go to the gym and swim, do aqua aerobics and Pilates. I don' t know if you could try and of those?

You don't say if you have any family - but would they help by sitting with your husband so you could go out occasionally or even a weekend to catch up with your friends? Its always worth asking. Don't cut your friends off as they will boost your mood - even a phone all.

Finally best of luck with everything and take care

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Hi Fennahj7115

I am sure you would be quite overwhelmed if you could feel all the hugs that are being sent your way. As has already been said you should sort out with your doc for the nausea, that will be dragging you down. It seems nowadays we are all supposed to be brave and never moan about our health problems. I certainly have my moments and would think most of us do.

Since I have been ill my husband has had a knee replacement and a worse operation on his ankle. I don't have anywhere like the health issues you do and I still drive, but I do still work full time. When he had his knee replaced he went to a hospital 50 mins drive away. I didn't visit one day as we had friends that went to see him and I let my son collect him from the hospital. I felt guilty about this, but in truth my son is bigger and more capable of helping him in and out of the car. I think he was only in 4/5 days. Your husband won't be allowed home before he is proficient walking around on crutches and will be encouraged to use just one crutch in a very short while. Once that happens he will be able to do a lot more. He will not be told to rest! I had our groceries delivered and left my husband to do the order. It made him feel like he was helping and was one thing I didn't have to worry about. I hadn't been diagnosed at the time and had to make the long journey to Addenbrookes to see a specialist. My friends were more than happy to pop in to check he was okay. We had another friend who helped out by walking our dog. So what I am trying to say is let your friends help - they will be only too happy to, as I suspect you would have done for them. Don't worry about things that don't matter - the housework will still be there tomorrow.

I hope your husband has a speedy recovery and your treatment starts to help you soon.

Big hugs and best wishes


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I know how you feel. I have a lot less on my plate than you. I feel for you. I really do. Hope your husbands op goes well. Hope you don't feel so bad everyday too. Think of the good things if you can 😊 xx


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