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        Supporter's Corner >> Supporter's Corner >> like a weight lifted from my shoulders
        
(Message started by: lydia on Aug 14^th, 2002, 6:33am)

Title: like a weight lifted from my shoulders
Post by lydia on Aug 14^th, 2002, 6:33am

I found this site yesterday. Reading other peoples experiences made me cry and again today I'm filling up. My partner of 8 years has suffered for the past 5 years with CH. It took about 2 years for him to be diagnosed during which time he had teeth out because they thought it may be due to nerve pain. last year our GP prescribed him epilim and he went for 9 months without an attack. We hardly had a cross word in all those months. This last week they have returned and he has been growling and trying to cause arguements for the last 2 weeks. I am aware after these last 9 months and coming to this site that it has nothing to do with our relationship,that he feels so grumpy,its due to these awful headaches. How could he not feel grumpy when he's going through such a living nightmare. I printed out the info on oxygen and last night he took it to his GP who hadn't heard about oxygen treatment for CH. He left the printouts with the Doctor who said he would look at this site to gain more info. In the meantime he is trying prednisone he took his first dose last night and woke with a clear head this morning. he was so pleased! He has to go back to the doc on Saturday to see how he's got on. Just from being able to understand other people's experiences here has made me feel so much relief. People don't generally understand how severe these attacks can be. Thankyou for being here.

Title: Re: like a weight lifted from my shoulders
Post by Ree on Aug 14^th, 2002, 9:44am

Lydia... glad you found us Welcome...
Ya ...you need to consider his pain... but he needs to consider yours. It is very hard to feel helpless in the course of an attack. If he gets abusive verbally there is no excuse for that... You are a wonderful supporter believe that. He is lucky to have you merely because you took the time to research the web and find us... I am sorry the cycle has begun for your family you will be in my prayers. Read the site and become familiar. Good luck ~~~~Ree

Title: Re: like a weight lifted from my shoulders
Post by smartie on Aug 14^th, 2002, 1:05pm

Dear Lydia
Hope you are managing, it is very hard to be on the outside of the pain, when in fact you feel it too. I know I've felt so tired I've found it difficult to function. The fact we have a strong relationship keeps me going, having a little one makes it difficult, especially when he is a Daddys boy and won't settle with me sometimes-very hard when Ali having an attack, trying to keep little man quiet!!! I know when Ali is in full swing of a cycle, he kind of goes off into the distance, I just wait for him to come back again, thankfully we seem to be getting on top of the situation thanks to this site and we have better medications this time so the cycle has been about half the usual length of time - fingers crossed!!!
Not counting our chickens yet but happiness seems to be in a bigger supply now!!
If you get a good moment - not easy I know, try to explain to your other half how all this makes you feel, he may not even realise what he is doing and it may just be he's scared - Ali get a look like I did when I was in labour - "help me it hurts" - very hard to deal with I know, remember you can feel down too. Don't lose sight of yourself - there are people here who understand, I cried when I found this site as I didn't realise that anyone else felt like me - we are not alone anymore - Good luck! Take care
Luv Helen

Title: :)Re: like a weight lifted from my shoulders
Post by lydia on Aug 16^th, 2002, 6:22am

Thankyou for the welcome
The prednisone seems to be working,I know its very early days with them but he has only had a few twinges. He has had trouble getting to sleep on them though,and wakes up extra early full of beans,chatting away! He hasn't been abusive as such just very grumpy, these last few days have been much better,does anyone know what to expect next when he comes off these steroids? do the attacks usually come straight back? I hope the relief will last longer for him.He's such a hard worker that even when he's mid cycle he injects himself and carries on at work, he would rather sit in his truck and wait for it to finish so he can get a few more hours work in afterwards then come home in the evening looking dreadful and completely worn out. when the attacks start he gets the look of a frightened bunny rabbit. I feel so helpless. I did a reflexology diploma last year and have practised on him which has helped some of the time, now we can't get into a position thats comfortable for the 2 of us as I have this enormous lump in front of me! not for long now though. I will mention accupuncture to him though. Helen we have a bit in common! He is self employed too, we have a son already and I'm expecting our 2nd baby in about a month.
Well i'll be off now, I seem to go on and on when I start on the subject!
Thanks again
Lydia

Title: Re: like a weight lifted from my shoulders
Post by Ree on Aug 17^th, 2002, 8:16am

You are such a wonderful companion/supporter Lydia keep up the good work. I will pray over the weekend that you have some relief from the Beast that is taking away your happiness... The prednisone usually does work for some... A side effect of it though is that the person taking it can sometimes get crabby so he WILL really have an excuse if that happens BEWARE... Goodluck he is so lucky to have you... He sounds like a great guy too... Ree