What a Shock-etc

I don't write very much on here, biut I do love to read the blogs it gives me great support knowing that some people do understand just how we really feel..I have had Lupos for 5-6years..like a lot of others I have suffered with Lung problems 50% work as my Diaphram is paralised,rheumatoid Arthritis,Reynolds, always getting infections, CFatigueS. Fybrobyagia, and now I was told las week at the eye clinic I have Macular Degeneration(Dry) this is where through time I lose my central Vision, this has came as a Shock, coping with everything else is hard enough but even the thought of losing my sight has just shocked me, but as usual we will just get on with it+cope with another problem, I now feel that my fiancee of 3 year is not taking this too well, I didn't feel well yesterday after taking my medication I had to go lie down on the Sofa he said that I was acting it..This is my fault because I always try+stay strong happy when they are around+i look after the family+house at my own pace as they are out at work so they don't see the real me when I'm exhausted+in pain+ive been stuck on stairs couldn't get up due to pain, its so difficult trying to shower+get dressed my joints are so sore. He has only once cooked a meal for me, he now said he doesn't want to go on holiday, which I was looking forward to, I had a fall 2 years ago+operation+of no support anymore I think he's had enough now, I think its time for our relationship to end, I now need to be a bit selfish+ think of myself+look ahead+get my life sorted on my own, I'm lucky I have a good family+friends, whick is very precious to me..this is going to be emotional+i also need to find a new home..Sorry for going on but its good to say all this out loud as I've never mentioned this to anyone yet..

13 Replies

  • Oops I've just spotted my speeling mistakes, well at least my eye site has not gone yet..LOL x

  • You deserve so much better than what you are having to go through with your partner, on top with coping with the problems that lupus brings. I do hope things work out for you, as you say you have the support of good friends and family and you really do have to put yourself first.

    Take care of yourself x

  • I think you are absolutely right to think about ending your relationship.

    I lam not in a relationship - and haven't been since Lupus onset 7 years ago. Sometimes it is lonely - but it is difficult enough to manage my own expectations about what I should be able to do - without having to worry about someone else's needs and expectations.

    At least I CAN go to bed when I need to; if I am too tired to cook, there is no one to moan; ditto with going out, housework, gardening etc.

    Be brave - you may find life is easier alone!

  • I am happy you have a supportive family, so if your partner is not being supportive again then it is time to move on. Lupus is enough stress already to add to a broken down relationship. I pray things work out for the better for you because you deserve the best.

    rest as much as u can

    ije xxx

  • It can be very being the partner of someone who is chronically ill, the relationship is not an equal partnership. My husband helps me a lot and is very supportive and understanding but to be honest I don't know if I could cope if the roles were reversed.

  • Fj14, I really feel for you. I hope you find the strength to get through it. My husband has just bailed out so I'm right there in the thick of the emotion. I think we know in our hearts the answers and obvious outcomes of our dilemmas and situations long before we act. I have taken a lot from MaggieS's message, so true. I'll be referring to her wise words from time to time. Thank you MaggieS and hugs to Fj14 x x

  • So sorry you're going through this. My partner shows a (mostly) united front with my difficulties but I know I'm more of a hindrance now that I can't work full time, do all the gardening and housework and look after the family.

    It's good to know that you have great friends and family behind you. Take care of yourself as you are number 1; if your partner can't handle the effects of lupus then it's his problem, not yours. :)

  • Your so lucky to have this support been ill four about four years. Partner and friend have disappeared over the years. Wish I could.. bex

  • am so sorry to here about ur partner not being suppotive to u and help u , u deserve so much better lv i cant complaine iv got a verry understanding husband who always ther e for me does cleaning cooking when i have my bad day with is more andmore often these days and he nows befoure i say i dont feel well when am aving a bad day he leavs me in bed untill am ready to get up in my own time ,hope u find a lovely partner who understands about sle and not being selfish hope u feel better soon and do what u think is best for u xxxx

  • But does he know much about lupus,perhaps before kicking him out the door,ask Lupus UK for there DVD its only £2 to cover P&P that both of you can see together and perhaps this might help.

    Remember it is hard for someone to understand and if this don't help the there's the DOOR

    all the best

  • Gosh Thank you so much everyone for your kind and wise words and support,I know I deserve more support from my partner, I know it must be very difficult for him when I'm not working now and He is... I think first of all I will send for the DVD from LupusUK let's see if this helps any, it will be good to watch it with my partner and take it from there..take care everyone I'll keep you informed..X

  • I'm really saddened by the number of people I've heard about recently who's partners are struggling to cope and being rotten. How often have you supported him over the years? I'm in a similar situation my hubbie of 10 years said last night that he's struggling as its happening to him as well. I wrote about how that makes me feel on my blog SuzyB.net as I hate hurting him but equally I'm annoyed that I'm having to support him

  • Hi fj14, I'm glad that you are deciding to put yourself first and be a bit selfish. I wonder whether that's a character trait of us lupies.. to always try and put others first until our bodies demand that we start being more selfish?! Perhaps your partner would benefit from learning some compassion and empathy?! I think getting the DVD and watching it together is a great idea. And I agree with janicaeray that if he doesn't want to try and understand then you can show him the door! Sometimes I wonder how much easier it would be if I had only myself to look after instead of having a family.. but I feel fortunate that my husband watched the DVD with me and really made an effort to understand, and now he is really supportive and protective of me -it can happen!

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