depression?????

[gsmith]

it may be of interest to all you out there to hear how fellow sufferers cope with the spells when a new problem occurs or the old ones feel too much to bear and you wonder if the fight is worth it, i think this is something people are reluctant to talk about,so come on, bare your souls,it can only help! georgia

[vivdunstan Volunteer]

In my lowest patches some years ago I went to talk to the university chaplain where I was doing a part-time PhD. This was quite a bold step, because I am resolutely agnostic. I was very clear with her about this, but she was able to support me in ways that the university's counselling service couldn't - they couldn't understand the severity of what I was dealing with, and couldn't grasp the nature of my illness (cerebral vasculitis) at all.

I've since been put on a SSRI anti-depressant, not for depression, but to help with anxiety. I may have developed the anxiety as a result of coping with the disease, or from the brain damage, or a mix of the two. It could even be partly caused by some of the other medication I am on. My GP said it would be amazing not to develop anxiety with what I'm coping with. And that pill, taken daily, makes me a much happier bunny. It stabilises my moods all round.

I find my husband a wonderful support, and when I am really low he is there to listen to me, and help me as much as he can. I find I can talk to him much more easily about this than to my parents, who get rather upset.

[PatriciaAnn]

I can't say that in the eight years I've had WG, I have been so depressed that I had to resort to medication for it, although I know of a number of patients who have and their lives have been greatly enhanced by taking the medication.

When you consider that when one has a disease which is for life, the medication we have to take, the changes the disease and medication make to our physical appearance and wellbeing, and the ever present chances of a relapse, it isn't surprising that we can sometimes feel that it really isn't worth it.

Viv is very fortunate that she has her husband to talk to, others find that a friend who understands the problem can help even if all they do is be there for us and just listen. I just find that if I keep myself occupied with things which I enjoy and which are within my capabilities, I don't have time get depressed - well not often.

Having said that there are time when I feel like having a good weep, the "why me" and the "it isn't fair" syndrome, and I don't bottle it up and I sob and sob. I don't do it too often because I try to keep positive.

Patricia

[John_Mills Volunteer]

looking at it from the "other half's perspective" . John has a very positive outlook 99% of the time. In the beginning back in 2001 John was so very ill before diagnosis and we both thought he was going to die. Which was so upsetting for both of us. But as soon John had been diagnosed and was on the medication and began to feel well again he became quite angry and unaccepting of the WG. It was only 12 months later and the medication was being reduced did he realise this was it for the rest of his life. He became quite depressed after a relapse in 2003, on his retirement from dentistry in 2006, when he was diagnosed with a DVT in 2007 and then after he was diagnosed with a carcinoma of the bladder in 2008. The depression did not last long and he kept himself very busy with the renovation of our house and his job as sectretary for the local dental committee. We also did some extensive travelling. Vietnam, Cambodia, India and North Africa. Since 2008 John has devoted 90% of his time to Vasculitis UK and helping others with vasculitis and their families either by phone, email in the networking groups as well as working with Patricia on the newsletter, website and Route Mapfor Vasculitis. He is also a Grumpa to 2 little girls aged 1 and 3 who keep him very busy. Just before Christmas he was diagnosed with a granuloma of the bladder and was quite poorly. After loads of tests he is now waiting to see how the consultant is going to deal with this problem. I can see this worries him and is at the back of his mind...but now he is feeling well again he is working harder than ever for Vasculitis UK and is on a mission to complete our new kitchen (with his friend Colin) who is just recovering from extensive chemo and radiotherapy treatment for cancer. As for me I go up and down with him...we work together, get grumpy together, we cry together laugh together and as John says we are called BOGOF (Buy One Get One Free). We both, also have a good friend in Patricia who goes up and down with us and we hopefully are there for Patricia too.

[vivdunstan Volunteer]

Following up Susan and Patricia here, I'm struck by my contacts with other vasculitis people of just how positive we are as a group, generally. Given what we cope with vasculitis people seem to be remarkably strong individuals.

That doesn't mean we can't have really down spells. And some people may need extra help to cope with this long-term, like medication. Don't be afraid to speak to your GP for advice. No need to suffer in silence.

Personally I find it really helps that my brain damage causes significant dementia-like problems, including huge memory loss. Each day is sort of like a fresh start for me, or rather each evening by the time I finally wake up properly after an incredibly large amount of sleep (again due to the brain damage). So while I might be upset last thing at night about things (occasionally), by the next day I've forgotten all about it.

My consultant has used the term "phlegmatic" to describe my attitude to things, which was quite nice, though I had to look it up in the dictionary to be sure exactly what it meant in this context!

[PatriciaAnn]

Hi Viv. I think that is a wonderful word to use for vasculitis patients as a whole, because that is what we tend to be. And yes, I looked it up to be sure what it meant in this context.

Patricia

[John_Mills Volunteer in reply to PatriciaAnn]

Just looked it up myself.

[SusanCh]

I have suffered badly with depression and anxiety since becoming ill . It's not the sort of question that I have felt able to raise with other WG sufferers. The main focus is on the physical symptoms and treatment. The cyclo and other drugs made me very agitated at the start and they were tweaked after a couple of months but I have been on Diazepam 2mg each daysince 2004. I use it to help me sleep but in periods of stress, I do panic and may have to take an extra tablet. I was always calm on the outside before but I go to pieces now but then I have had a number of setbacks over the years.i.e. tracheostomy, lung damage etc. At the start the Drs didn't think I would pull through and my family were very worried so I didn't feel I could burden them by telling how depressed I was. I was told to avoid contact with anywhere where I could catch infection so felt isolated. I now reaise after having another flare this year that large doses of steroids make me depressed. I did not realise that they may affected me at the start. I recently had to take 30mg steroids for 2 weeks and then some more for 6 weeks and I felt this fog of depression which I couldn't understand.

On the whole now, I feel positive about the future and have come to terms with the fact that I am not the person that I was years ago and that I must adapt to a new life style. Sometimes it can be hard but there is light at the end of the tunnel, but I wouldn't have done this without the support of my husband, family and friends.

[gsmith]

i wasnt sure if i should raise the subject of depression,but i felt it would help all of us feel less alone to know its normal for us,it will pass and we get our fighting spirit back until next time. personally i sometimes feel i want to curl up in a corner, dry up and blow away in the wind,other times i get very angry.. thank god or whoever for patient understanding husbands, whatever their other faults. georgia

[haze93]

Very intersting to read all the comments. I have been on medication for depression for over 20 years on and off. I could tell when I needed to see the doctor to get put back on my medication. At the time of being diagnosed last year with vasculitis I was off my meds for nearly 2 years, which is good for me, but lately I feel as if i'm slipping again. I don't really want to add to the various tablets that I currently take but if I feel it's getting too much then I will ask to be put back on them.

I would just like to add that if you do feel really down go and see your GP and get help. Sometimes a short course is all you need. But don't just try and put a brave face on, it doesn't help you in the long run.

[Paddy47]

For the past 2 months, I have been suffering with severe nerves in my stomach. Went to my GP on three occasions,as I was very low and also having thoughts of ending my life. Something that I do not want to do, but I feel it is the only way. I have lost all interest in life and living. I am taking three different tablets for my Anxiety/depression twice a day, but to no avail.When I wake up in the mornings, I have these butter fly s in the pit of my stomach. I take my morning medication , but I still feel the same. I have lost interest in my body, my personal hygiene and everything else. Can anyone help or advise me please. I am 68yrs old.

I am at my wits end now.

Patrick

[gsmith]

I am 69 I don't feel as down as you but after 3 years being messed about after my methotrexate was stopped due to it affecting my liver.i wonder what awaits me.nearly 2 years ago after about of gastroenteritis I developed an abcess 2 inches in size in my bowels now that is pain that makes you consider suicide.it eventually cleard up but my bowels are very grumbly. azothioprin disagreed as did mycophenolate.so I am increasing prednisolone to help me cope and expanding rapidly.my rheumatologist is trying to get rituximab ok d for me, but they don't rush.i have been fighting this awful illness for ten years.it don't get easier I wont ask for anything for depression as I know people who it has made suicidal. I would recommend going to meetings ,find someone you can phone and talk to when you are down.take a positive attitude it is liveable with.find an interest/hobby to take your mind off how bad you feel maybe volounteer to help people worse off than we are. yes there are a few.lol hope this helps.i do understand as sometimes I have to kick myself up the ****** and give myself a good talking to ......I would be happy to try and cheer you up if you want to ring me on 01942 722252 georgia