My life will never be the same ....

[elodielupus2]

I have to accept that my life will never be the same ....let me give you a quick history ...

Had a stroke at 15 (10 years ago ) suffered with epilepsy , headache, joints aching and extremely tired , I was n wheelchair for 3 mo ths recoveri g from that ...then I was diagnosed with sle and aps, for these last 3 years my health has gone downhill and unfortunately it is since having my children I should be enjoying them and yet i feel like im failing them because im not active and always ill . I've lost my job, almost my marriage and our home. Im constantly in pain and on codeine or morphine ebryday. Im on azathioprine, plaquenil, warfarin and so on ...am I ever going to feel human again? I cant deal with the constant fatigue and I've been diagnosed with aplastie aneamia and reynaud which probably don't help, I often feel like im better off gone , I've got no family support in this country and I have to rely on a carer everyday. Do anyone know of any support group in kent ?

[Paul_Howard Partner LUPUS UK]

Hi elodielupus2,

I'm really sorry to hear that you are having such a difficult time. Please don't give up. Please persist with your doctors and hopefully they can help make you a lot more comfortable with the correct medical regimen.

There is a kent support group. I'll send you the contact details for them now in a private message.

[pollywolly]

i really feel for you, please dont give up, ask for help,dont try to go through this on your own,your kids love you for who you are and not the illness youve got,you mean the world to your kids and you are not failing them at all.xx please try to be as strong as you can. sending love xx

[Hidden]

Please stay strong for your children,insist your doctors do more too help you,,and you know what,,better days on the horizon,,i just know it!Get on to that group in kent and people are always hear too listen.Big hug to you.x

[teecayc]

So sorry to hear you're struggling I'm sure you're children don't feel like you're failing them at all! Are there any friends/neighbours you can rely on? Remember there's always people on here ready to listen

[LaughItUp]

Sorry to hear that. I'll pray things will improve for you. It's great you have. I bet they love you more than you know.

[NeeNaw]

Hi I am so sorry to hear that you are having such a bad time ...... I remember all those feelings only too well ......... and yes your life will never be the same again, but you can make changes to your life. I thought that everyone would be better off without me, how wrong was I?? Your children don't expect you to be Supermum, it is ourselves who put these ridiculous demands on our bodies, when all our children really want is for us to be there for them and love them. Learning to pace yourself, and stop fighting your disease, as this causes stress and stress in turn adds to the pain. My life is slower, I have somehow turned into this oracle of knowledge, I can listen, I can offer understanding, I can love, ..... I was the sporty business woman, who was always on the go, presented the perfect life, perfect home, perfect family and it was the toughest years of my life when I could no longer do this and grieved for the person that I was. Yes I am not the person that I once was, physical activities are no longer on the agenda, but, in many ways I am a better person and I have found that the one thing that helped me more than anything was facing up to the lupus and saying "right ok, I know you will always be there like the elephant in the room, and some days I will be able to ignore you and other days you will be in control, but I am no longer going to do anything that will cause you to be in control everyday" Being diagnosed with lupus, is not the end ...... just a different beginning. God Bless