Vasculitis UK
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Not a question just a statement - fed up

Last week or so I have been so unbelievably fed up, bad mood, ratty, very blue. Normally I like to think I'm fairly upbeat but oh my I've felt foul.

At the hospital last week and I finally said what I know but have been refusing to admit "I guess I have to accept that even though I'm on all the meds and have Rituximab the best it's going to do is keep me stable but I'm never going to feel well again". The reply "that's what we've just been discussing before we came in but we'll keep trying".

Think this is why I'm feeling fed up, I know the last four years have been tough at times but in my heart I kept the dream that one morning I would wake up and not feel like I still need to sleep and not have a headache and just be me again (although I think this is me now a slightly varied version of the old one).

Also over the last three to four weeks I've started having something new, I get an odd sensation in my tummy and chest and then it's like someone has frozen me, I feel like I can't move or talk. It lasts anything from five to twenty minutes and I have at least one episode a day, I've also had less intense ones that have lasted longer. I've got an odd feeling most of the time in my chest, it's not painfully or anything. I feel stupid trying to explain it as its odd and I've never had it before. Sorry I am going to ask a question - anyone else had anything like this?

Anyway I'll stop whingeing and get myself off to work - which is getting harder and harder all the time and that's getting to me now.

Hope you're all feeling well.


8 Replies

Hi Annie

The final realisation that we are never going to be as we were before is a pretty hard pill to swallow, and we certainly have to swallow some rather hard pills. However, once you've come to terms with the fact then it should start to become easier and you can plan for your new future rather than hope for your old life back. Also the ratty behaviour should start to subside but the tears will still fall occasionally. Well, it did with me, although it probably took me as long to come to the conclusion as it did for you.

Now, every time I see the consultant I think to myself that he is going to say something like "Pat, you are completely cured, go away and never darken my doorstep again". I know that isn't going to happen, but we can dream.

Have you thought that the funny feeling in your chest might be anxiety about it all? Have you mentioned it to anyone? If it is anxiety maybe your GP might be able to prescribed something to help in the short term.

Take care and remember, you aren't alone.



Poor you.

Can you get some time off work to rest and get some sleep. It is a great healer. I always feel worse when I haven't had a restful sleep. Maybe a relaxation tape.

Sorry if that is silly, you have probably tried everything.

We will all be thinking of you.

Best wishes



I get an icy cold feeling in my stomach sometimes.

the not able to speak or move at times was one of the reasons I had the mri [ thankfully fine] I don't know what causes it.

regards, sandra.


Thank you for your replies. PatriciaAnn I have thought it could be anxiety and I mentioned the feeling and this at my last appointment but they didn't comment and I didn't push. Ive had another one today at work, I dont know how anxiety works the one today came on when I was talking to a colleague. I am feeling really stressed I'm off work now and me and my family are going to the east coast on Monday so hopefully I be relaxed and chilled.

Thanks everyone




I fully understand how you feel, I'm still constantantly trying to pretend that despite all really there's nothing wrong with me. I also often feel a bit of a fraud but then what fraud would be taking the drugs we do with the effects they have? I'm still not there yet.

The feeling you get could well be anexity I have a feeling very similiar but is also accompanied by arrythimia with then causes dizziness, feeling sick, faint and breathless.

Let someone know as they are best placed to interpret the feeling.

I have noticed that I started to suffer with this since first being ill, whether cause or effect - hard to tell but the effect is the same.

Enjoy the time with your family.

Best wishes


Hi Annie,

I'm sure many of us on here have empathy with you. Like yourself I go to work and, like yourself, I am finding it increasingly difficult to continue working full time some days, but have no choice sadly. I have been signed off sick for a month due to 'stress related problems' as GP has put on the medical certificate.

My renal consultant told me that I am depressed and maybe I am as I cry a lot and often have thoughts, on really bad days, that it would have been better if I had never survived the renal failure caused by WG. I have often said to my medical people that I would really like them to be in my body just, for a short while, to truly understand how I feel. Despite all their medical knowledge and expertise they can't can they?

I also long to be back to the the person I was before I got WG and I get so frustrated that some days I just can't do what I used to be able to do. I'm not sure it is depression myself but just feeling really low, and sorry for myself I admit sometimes, due to the utter frustration along with the terrible fatigue etc. of course.

Somebody on here hit the nail on the head with their reply to another person who was having the same feelings you are writing about Annie when they said that they are grieving for the person they once were. That sums it up completely for me as I feel grief for what I was before WG did what it did to me.

We are, at the end of the day, victims of a really nasty rare disease that medical peope are themselves still trying to understand and get to grips with so I don't think we should beat ourselves up too much when we have out bad days to be honest with you. I think we are entitled to whinge, moan and miserable days myself ;-)

Hang on in there Annie, hopefully we will get our old self back one day. I know the medical profession are working hard to find a cure for us and, one day, they will I am sure.

See, I do have positives thoughts too :-)

My thoughts go out to you sweetheart as I know exactly what you are going through.

Jacqui xx


Hi Annie,

Sorry your not felling well and am a bit 'down', at present. I'm now going to try and brighten you up, a bit.

Firstly, and most importantly, you are still alive, something, I'm sure, 'they' said you wouldn't be, right? The fact that you have writte in, for a bit of a 'grouse', means that you are thinking straight and your mind is the real you. The 'old you' is NOT far away, if it were you would not have written in, in the first place. I hope that this makes sense to you. Though, reading it back, it hardly makes sense to me!!!!!

Good luck anyway

best wishes



It's so hard to accept that we will never? be well again but i find that maintaining a positive outlook aand having a very supportive family helps a great deal. Wish you well.


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