I have Wegeners for 22 months now but since November when going to bed or driving to work I start crying, having severe mmod swings which i'm taking out on my family. Am I cracking up?
Does anyone else with WG feel as if they nee... - Vasculitis UK
You are definately NOT cracking up. I've had WG since early 2007 and was often asked 'are you depressed?' I've always taken the attitude that depresssion is counterproductive and I do not 'do depression'
I also accept that everyone is different and with the help of your family you will get things in perspective.
Explain your feelings to your family and ask them to be tolerant and help you. If you feel the need, discus with your doctor and ask for help. There is life with WG and although it can force changes on you, you can adapt and live!
I hope you are not offended by my message and I wish you all the best.
Thanks for the advice I certainly don't feel depressed more anxious but I think if I persevere I will get there because I have certainly came through a lot worse.
Definately not offended by your message
Isobel, when you have a disease which is for life, where you have to take medication every day, when you want your old life back but know that isn't going to happen, or is going to take some time, then it isn't surprising you have down days. When you add that your family and friends probably can't appreciate what you are going through, that adds another element to make you anxious.
I think most of us have been there. Try to talk to someone who understands or at least is willing to listen without telling you to "pull yourself out of it". Try and concentrate on the positives in your life. Keep a diary then look back over your entries. Set yourself a goal for every day. Nothing major, like climbing a mountain, but something you have to strive to achieve. You'll be surprised when you go back and read your diary just how far you've come without really knowing it. What's more, there isn't anything wrong having a good old cry occasionally, just try not to do it too often or it will become a habit.
Braindamage is lucky in that he/she doesn't do depressed and seems to have a strategy to cope. It works for some but not for others. If you really feel that you need some help then speak to your GP or practice nurse, they may be able to recommend some action which might not necessitate additional medication.
Prednisolone/Steroids are well known for a depressant side effect.
I am quite a positive person ( WG for 5 Years ) but even I get the odd day when I am depressed. I think you would be unusual if you didnt feel depressed from time to time.
You are in good company. Many have a similar experience. I get over it naturally but also by filling my days with various activities which stop me thinking about WG.
People/friends/family are a good medicine. but dont feel embarrased about your feelings or about taking medication if you need to.
All the very best
Thanks for the encouragement, I don't know how I managed before I joined this group
I've had WG for a similar length of time and have definately noticed that i now shed the odd tear much more often than before, usually when watching the news or listening to sad or emotional stories on the radio. I assume its the drugs we take. However, by chance, I also take Prozac daily for another condition which I am sure helps to prevent large mood swings. As a result I've always had a pretty laid back attitude towards most things which im sure helps with coping with illness. I'd therefore give it a go and see what happens. Its a pretty clean drug and so you have nothing to loose. Despite having damaged lungs I'm now at the gym daily and play five a side football twice a week which definately helps to enhance my mood. Plus as I get my fitness back, I'm loosing weight and looking much better. I'm now planing to do a triathlon sprint in June. I'd therefore also recommend that all those with WG join a gym as its great to see your body improve and get fitter over time. This disease is definately not my life but more of a slight inconvenience, which thanks to modern medicine can now be managed. p.s a spell check function on this website would be useful!
Hi Isabel ihave had WG for 22yrs and led quite a normal life upto 3yrs ago when i had a massive flare up which has affected my feet and legs and also my lungs this time, yes you will have good and bad days but my motto is keep thinking positive and you get there in the end, and i agree totally with what Braindamage has said in there reply.
I was told the news this New Year that i have WG and am totally numb, I cry and yet they caught it really early, it has not affected any major organs.
I just keep thinking they have made a mistake and get very down.
This site is so valuble.
I hate to be controversial but I really do disagree. The 'odd down day' is NOT Depression. Everyone has changes in mood whereas Depression is a very real condition and, invariably, is not something you can pull yourself out of.
I am, by nature, very upbeat. WG hit me very hard 22 years ago. I kept going, working my socks off and pretending it hadn't happened. I pushed myself hard (which was stupid) even going swimming at 6am every morning on the way to work!! Hard to believe. Then, after 7 years back at work I started to deteriorate and Depression kicked in. It was a dramatic change for me. The very best and most liberating thing that ever happened was being referred to a Psychiatrist. There is no stigma but it hugely beneficial (or at least it was in my case). GP's are quite happy to dish out SSRIs without input from the people who REALLY know. It is not a slippery slope and it does not signal any kind of self-indulgence. Mental health issues in people with chronic health issues are really very common. You have not failed by seeking help. You may just feel liberated too !!
I have been on antidepreeants for 2 years now, this illness and the medication you have to take can bring you down, you cant always fight it because you feel so ill sometimes. My doctor was amazing and listened to me, I thought I could fight this , not give in, after all who wants to admit they cant cope mentally. I gave in gracefully I am coping so much better, I feel a lot more positive and this site has helped so much.
You will get through this hang in there Isabel12.
I have been suffering from w.g since 2010 .I can only descibe my feelings on dignosis as complete shock that something like this could affect me .Like some others I seemed to be in denial but noted that when pushed to describe symptoms I became weepy and distressed .This was a new phenomena for me .I have recently had consultations with myhealth care team about depression which has hit me fol lowing a serious relapse which is still ongoing .I believe the key is that you can,t always be the strong one and need to acknowledge you require help whichever form that may take .
Hi Isabel, sorry to hear you are having a rough time of it just lately. No you are not 'cracking up' just going thru the wonderful range of side effects which this illness and the drugs bring.
I have noticed a 'Pred' fuelled rage which is totally out of character for me and fortuantely my wife is very understanding and tolerant!
I have found myself to be very upbeat and positive after my DX nearly 4 years ago and after a 'near death' experience, appreciate the simple things in life so much, however, I too find myself bursting into tears at times and have noticed a trend over the past 3 months which has given me cause for alarm.
Luckily my hospital is on top of all things related to WG and after speaking to them about the problem, they are going to fix me up with some counselling.
Sometimes it helps just to vent to an absolute stranger!
P.S. This site is superb and full of valuable comments.
This really is a message for vasculitis patients, and I guess your Mum won't read it.
It must be difficult for you. I remember one time when I got really ratty with my dearest friend. Without her I would have been up a gum tree without a paddle. It wasn't until afterwards that I realised I'd hurt her feelings and it looked as if I wasn't appreciative of all the help she had given me.. I know you can't say this to your Mum, but sometimes you just have to forget feeling sorry for yourself and taking it out on others or ignoring them, especially when all they want to do is help. The problem is that family members tend to have to put up with it, friends don't and if we aren't careful they won't be around for much longer.
Hi Isabel, I am an upbeat person most of the time (WG 11) but I get down particularly when I`m tired or. stressed. Even I need a shoulder sometimes.
I agree with Geoff above about the site but have scared myself a bit by reading others comments about their WG. I think I stuck my head in the sand regarding my condition and when I joined last week was, well, scared silly about how severe this disease can get and how lucky I am to be as well as I am despite one relapse..
There's such a lot of rubbish out there in internet land about vasculitis. Here people try to help others by telling how it is or has been for them, to reassure them that what is happening is usual for some of us. That doesn't mean that because they say "x" occurred that it is happening all the time. You must remember that we are all different. We have different vasculitis diseases, we have different medication, and we all react differently to the disease and the meds.
Just because something has happened to me or to some of the others doesn't mean it will happen to you. Similarly some things may happen to you that haven't happened to me.
There is no getting away from it, vasculitis is a serious illness. "Sticking your head in the sand" isn't a good idea. The informed patient is the best patient. If you are under the care of good doctors and remain under review and your medication is appropriate, then things can get better or at least remain stable.. Unfortunately, they can occasionally get worse, but you need to be aware of that.
Thanks Patricia, being a nurse you think I would be a bit more sensible!! Im under a superb consultant although I only see him once a year now and am well and not on medication so here s hoping it will stay like that for many years to come. Thank you
Sorry to read you are feeling this way. You are not alone and you are certainly not cracking up. There have been some excellent answers on here
I was diagnosed with WG in April 2011 and feel exactly the same as you - but NOT every day. If I am honest, I have more good days than bad, but when it's bad, it's VERY bad. It must be hellish to work with me sometimes
I saw my consultant at renal clinic on Friday and he suggested me having counselling (I posted a question about this myself on Sunday) as I wanted to know if anyone else has had counselling and the replies I got suggested that it would be a good idea to take up the offer. I think for my own sanity, and those of my work colleagues, it may be very helpful for me.
Hang on in there sweetheart, we here on this site, are all in it together
Thanks Jacqui, glad to know i'm not alone. My work don't seem to understand or maybe they just don't want to listen to how bad it is somedays! The last couple of weeks i have been really struggling but i was upbeat and accepted my condition for the 2 years before this. I seem really bad some mornings but as the day goes on i'm a lot better? x
Hi I have the wonderful wg too I went on anti depresants about 3months ago after 'coping' for the past 6 years I had a lot of other things going on step daughter with bi polalr being one. I am still working but was exhausted and being unable to sleep till the small hours then going to work. I read on this page before that if you have an infection you wouldnt hesitate to take the medication Its is the same with depression. I am going to try and come off them in a couple of months but if you need them take them talk to your GP
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