am i being selfish ??? my partner contracted vasculitus in may , in really do feel for him after everything he has been through

[babyface67]

but i dont know how much longer i can cope with him being such a horrible person , he bad mouths just about everyone , never has a good word to say about anyone . Its like the whole world owes him . He hardly ever changes his clothes , and he has to be told to have a bath , i buy him certain food which hopefully will make him put some weight on but gives it to the kids the moans he has nothing , i dont know what to do anymore its making me so miserable . Am i being selfish ???

[PatriciaAnn]

Oh dear, I really feel for you. Seems he has got himself into a very dark place.

Unfortunately the Prednisolone in particular can really give us mood swings and make us so bad tempered. I know, I've been there. Also, his life has just changed, almost overnight and he is mad as hell about it. He doesn't want this life he has, he wants his old life back. His way of dealing with it is to take it out on those nearest and dearest to him.

I was dependent on my family and friends, and one day I heard myself and the ungrateful things I was saying. It is a wise patient who stops and thinks. I was in danger of losing my friends (friends don't have to stick around like family tend to do). It suddenly dawned on me that I needed my family and I was grateful that they were around.

Maybe some counselling might help, although I guess getting him to agree would be difficult. Maybe you ought to change your tactics when dealing with him. Only you know how you could do this under your own domestic arrangements.

It may not help to resolve your problem but at least you know you are not alone. As the Pred reduces, and he comes to terms with his condition, things should, hopefully, improve. Take care and best wishes.

Hope that helps.

PatriciaAnn

[babyface67 in reply to PatriciaAnn]

Thankyou PatriciaAnn , the counselling would be a waste of time as he doesnt think hes doing anything wrong , at the moment i cant stand to be in the same room , i just wish he would realise what hes doing , everyone has done so much for him but he doesnt appreciate anything , hes gonna end up with no one

[JacquiM Volunteer]

Hello,

I am so sorry to read about the problems you have having and I agree that Prednisolone can can cause mood swings. During a particularly bad time it totally changes my personality I'm sorry to say mainly due to frustration I feel sometimes so I can understand how your partner must be feeling right now.

Vasculitis has had quite an affect on my life I feel. My sense of self worth and my mental health have suffered as a result. I was always a healthy, reasonably active person then out of the blue I'm in hospital, very poorly and feeling I was about to die at any moment. I thought I just had an extremely bad case of flu!!

It was tremendous shock as I had no idea what was happening. I was absolutely terrified to be honest. It is a scary disease especially when we are first diagnosed as we don't know anything about or had never even heard of it.

Your partner's diagnosis is very recent so he may still be in that 'what the heck is going on' stage perhaps. It must be very tough for families having to watch their loved ones go through and learn to live with this disease as you cannot know or understand how the person is feeling both physically and mentally as they may look very well on the outside.

It is very easy to get into that dark place sadly. Have been there myself and still have an odd day when I think why am I bothering and feel very sorry for myself indeed but I believe that is due to the fatigue thing so no longer beat myself up about it.

I'm surprised your partners consultant hasn't suggested counselling already. Mine did, along with anti-depressants, and it helped me a lot although I rejected that at first.

Learning to come to terms with the disease, and it's affects, takes a lot of hard work from the person dealing with it but it can be done. Once I understood that I am grieving for my old self I found I could cope a bit easier. Accepting that I have a long term condition and will have to learn to live with it as best I can also helps although it's not that simple sometimes but it does get a little easier in time.

As Pat has said, once the amount of Prednisolone, and other medication, is reduced he may feel things are improving which will hopefully help with his mood.

With my very wishes and take care

Jacqui

[Suzym2u Moderator Vasculitis UK]

Hi no you are not being selfish. I could write a book on how John was the first two years of diagnosis. I am surprised any marriage/partnership works after someone has been diagnosed with Vasculitis. Even parents and children sometimes become alienated from each other especially in the early days of diagnosis. Vasculitis is a very difficult disease to come to terms with and I can honestly say it took John 2 years to come to terms with his Vasculitis. on top of this the prednisolone can cause big mood swings and hyperactivity. vasculitis.org.uk/living-wi... I wrote the attached link for the VUK website. In the early days John was sometimes really horrible and had no idea he was doing anything wrong at all. John was a dentist before he retired, when John eventually went back to work, after the first week his dental nurse of many years threatened to resign. So he had to take a step back and we had a long talk. all I can say is things can improve and they did for us. If you want to private message me anytime please do. Xx

[HiveMind]

I agree with everyone's comments.

It's very hard having this condition (perhaps an understatement!) but it must be just as hard to watch someone you know go through it too.

The bottom line is: you and your families lives will never be the same once you have this condition. Fact.

The very very hard part is to navigate through the rest of your life NOT being bitter, sad, angry and despondent. Easier said than done? Absolutely. 100%.

BUT you have to TRY. I know it's SO hard, even more so with all the drugs we take messing with our minds (yes, Prednisilone, I'm talking about you!).

Personally speaking, at times, I've felt like a stranger to myself. Saying and doing things completely out of character. In fact my husband sometimes says to me "when is the nice you coming back"? Which just breaks my heart. The "nice" me always comes back, eventually but the "not so nice me" is never far away but I've learn't to watch out for her and sometime I can head her off before she lights the fireworks!

What I find astonishing is that for people like us and our families, that are going through some of the strongest emotional and physical upheaval that anyone could possibly go through; there isn't any organised emotional support. None that I know of anyway. I'm sure lots of people would benefit from this.

I think the nearest we come to receiving any kind of support is this site and the FB site, which are great for sharing experiences but personal struggles that threaten relationships/families (I feel) need professional assistance.

End of sermon.

[metalback]

I agree with all the comments above, we are hard to live with sometimes we dont see how difficult we are. But before I became ill I was a carer for my husband who was also on prednisolone. I asked for a carers assessment from social services. They talk to both of you and it made my husband realise how difficult he was and how much help and support I needed. Just looking at things differently.

[Chris-Bromsgrove]

Prednisolone is certainly a Jekyll and Hyde drug. When I was in my initial treatment phase I was a foul person to live and the thing was I never realised I was doing hit. I used to get angry at the most trial things, shout and not realise I'm shouting but I wouldn't acknowledge is was any different. My wife said I had totally changed and when I returned to work my colleagues noticed as well. It was like having "Incredible Hulk" moments. It wasn't always anger; there were times when I would get quite euphoric. There's no doubting that coming to terms with the diagnosis is a heck of a shock to the system and the drugs don't help. I'm certain as your husband goes to lower doses of prednisolone things will start to change.

Best wishes

Chris

[BronteM]

There are some wonderfully wise comments above...and all come from the depths of experience. But it is only three months since your partner's diagnosis, and the realisation that this is not a 'take a pill and get better' disease, but one that is going to take time and some really nasty drugs if he is to improve. You are being really tough on yourself, as well as him, and you both need time and space to get through. The prednisolone has dreadful effects on everyone's tempers and moods, and is just as hard for you as it is for him. I felt as though I was shut in a box for months, barely aware of what was going on around me, and I hardly remember much of last summer. My husband had an important birthday, but I have little idea who I invited to the party...though I do remember longing for them all to go!

It is more than eighteen months since I was diagnosed, and a text from my daughter last week said 'I think we have almost got the old you back'. This is not meant to be depressing...just realistic. There have been good times in the last year or two, and it is fantastic that I am still here, and that my family have coped. There were lots of times when they would have been fully justified in giving up!

Hang on...it will be worth it, but you are going to have to be so tough. I do hope you have a good friend, a sister, or someone that you can share all this with, and who will understand your fury at your changed life, and the 'new' partner that has emerged so suddenly.

[AndrewT]

Dear babyface (nice name!),

I'm so sorry that you, and your partner, are having such an awful time, at the moment. I can only agree, with what the people above, have said. I feel however that, despite appearances to the contrary, your partner may actually feel frightened and alone. He does know, I'm sure, that his actions are upsetting you and he is feeling guilty about this- it doesn't show but he does feel it! Basically his emotions are in knots; in short, he doesn't know whether to shit or shower! He does love you, more than you know, and is just using you as a 'chopping block' for the way he feels. That said you don't have to put up with being used/abused like this. He does have a rational part- although it may be buried from view- talk to him and appeal to his love, tell him not to feel guilty, for hurting you, that you do understand (even if you don't entirely) and, most importantly, that you love him despite it all. If/when (I'm sure it's when) he responds to this tell him firmly but fairly that his actions are hurting you and the relationship.

Please do reply to me, us all, to say that love has one through- I, for one, would be delighted to here this!

I send you my very best wishes, and prayers.

AndrewT

[kath12341 in reply to AndrewT]

Hi as all the above hang on in there. I have recently had to go on anti depressants> I wish that I had done it before.can you record his behaviour and then give him it to look at and leave the room Does he have a specialist nurse where he is receiving his treatment who might be able to talk to him about his feelings? It is difficult to suddenly find everything you have know removed and unlike cancer or MS people dont realise the severity of the illness and as we often after treatment look okay good luck

[babyface67]

Thankyou everyone for your comments , maybe i need to see a counsillor to help me to understand and cope with it all. I have spoken to my partner but he is adamant he needs no help . My 3 year old grandson lives with me aswell as my other children so things do get a bit hard sometimes. Im nearly 50 and i think i need a holiday lol

[Albasain in reply to babyface67]

Hi! Reading all the comments given I can only agree with all of them. However, we must face reality.

I was diagnosed last year with vasculitis. Research into the disease did not present a positive outcome and obviously I became morbid and quite awful to live with (so my wife says) but, and this is the point, I eventually accepted the challenge and met with the disease I was now confronted with.

Yes, it was a hard haul and I still have my down moments but I have determined to control my life as it is now is. For example, while hospitalised it was recognised that I was, shall we say a maverick, my determination not to be a ward patient transmitted to other patients in my ward. I made changes to their outlook which enable them to meet with their condition and take charge in their recovery. In one instance one patient who was terminally ill with cancer and with dementia was brought to normal behaviour by my action. This was noted by the family and medical staff at the time. Still, it was remarked that I was mischievous as a patient. Hey! What the hell ! I did good in the circumstances.

Now coming back to your partner, I know how he is feeling, but that is only in the beginning, it will pass in time but he has to accept his condition and turn it into something positive. There is no point in him remaining in a negative state.

Again in that respect I started the London Vasculitis Support Group because there was a need for others with the same condition to meet and share experiences and gain knowledge.

I therefore would suggest that your partner adapt the same attitude to the the disease as I have or similar.

In the beginning while I was struggling to come to terms I made a phrase: " Nos vivere sed mori. Sed non tamen!" which translates as, " We live but to die. But not yet! One is a given but the second is what we determine..

Your partner still lives, he needs to take charge and meet with his condition and do something positive about it. There is plenty of advice about via the Vasculitis UK site and the HealthUnlocked site.

I'm sorry if I have come across too hard but reality must be faced and met with positive attitude.

Dave

[babyface67 in reply to Albasain]

Hi Dave , thankyou , you are so right with what you are saying i just wish he had your positive attitude , and i hope in time that he will , hes very pig headed , he doesnt do anything with his days and it does feel like im more his slave than his partner , simple things like making a drink or a sandwich he expects me to do it all , ive told him i wont do everything for him as he has to do things for himself otherwise i think it will feel like we are both just exsisting , and yes he is still liiving , he needs to realise that other people do have the same condition and they as you have that positivity , lynzy