Please give me hope of a "normal" life. Is it possible ?

Hi all

I am looking for hope . Seven years ago, after a long time thinking I was a hypochondriac I was diagnosed with lupus SLE without organ involvement . I had to give up work and for the last six years went through good and bad times. More bad than good. Two years ago I had a break down and soon after got diagnosed with Generalised Anxiety disorder and recurrent depression . I felt awful and started gaining a lot of weight due to a concoction of medications and lack of motivation to do anything.

Luckily I have a very loving husband and family, they have helped me a lot. Last year after a very bad flare of what we thought was just lupus my husband , who had already taken all his holiday leave to take care of me gave up work to become my full time Carer. As we decided that lupus mixed with my mental health was getting too much for me.

Not long after he gave up work we discovered my bad flare was due partly to lupus and fibromyalgia . A new condition ! I got more depressed and the cycle started again. The start of this year I found out I also have chronic fatigue syndrome/ME .

I have specialists and drugs and support from my husband and my family and I also know there are people a lot worse off than me but I just want to know does life ever get to be any kind of normal ??

Please any advice would be greatly appreciated

6 Replies

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  • I am so sorry that you have so much pain and all I can say to you is not to beat yourself up about the illness Lupus is not an normal illness and we never know what is in store I am 62 and had it all my life some good times when my illness was under control ,but I have learned never to take for granted those well times .Rejoice and enjoy them be positive and yes it gets us all down as we say WHAT NEXT and as you say there is always someone worse off . I am trying to be upbeat and let you know that what is normal for me is not normal for someone else . Learning to pace ourselves is one of the hardest things to do and even then Lupus comes and bites us in the bum so to speak. I pushed myself as I did not have a loving supportive husband when I was first diagnosed you are a very lucky lady I used to have to work come home and crawl into bed only to be told I was lazy and it was all in my head. I left him and found myself slowly coping with my son who really was my carer back then he was only 9 .I now have a most wonderful partner for the past 16 years who is amazing and cares for me so well without him I would be lost he is my soulmate and this has allowed my son to have a life which he deserves. I'm just coming out of a bad flare

    , but I have friends coming to visit so I am on total rest so I can enjoy them being here I need things to look forward to these give me a purpose not to give up and go into a downer . One big thing I learned the hard way was to become selfish about my health and well being and to put myself first If someone does not enhance my life I don't waste any time or energy on them See yourself as an egg timer and when you turn it over that sand I'd your energy running through so use it well and don't waste it on negative people who bring you down It is precious use it wisely to make you feel better and to do what you want. I give myself a little goal most days but then I feel good about myself and I find that helps. Lastly I understand the weight issue I have struggled to keep my weight down all my life as even putting on 5 lbs weighs me down and causes me even more pain on my joints. So I have done the elimination diet and found all the foods that affect me. Like now I am gluten free don't eat red meat tomato and lots of other stuff I know that this helps me, and yes always I think why can't I be normal but I quickly change my thoughts and think I will get better This is just our challenge in life and from this site we are not alone. Sorry I'm rambling on but I felt your were in despair and I am trying to put down everything that keeps me going. I do hope you have a better day On a lighter note if I manage to paint one hand with nail polish I count that as an achievement if its a bad day , never give in just give yourself a pat on the back for every little thing you do .Im sending you hugs and a big blanket of cotton wool to wrap round yourself which will figuratively protect you x

  • I know you were replying to the other lady but after reading your reply, made me feel bit better too, I like you had an unsupportive partner, my daughter is pretty good although she has a husband and family of her own, and it looks as though she may also have Lupus, she is waiting for a diagnosis. I had to give up work just over a year ago, I have a new partner, who I met 6 years ago, 2 years before my diagnosis. He seems to be pretty good at the moment, but not sure how he will cope as things do seem to be getting worse with me. Wouldn't be surprised if he gets fed up with me eventually.

  • Thank you for your reply voutton , I can relate to so much you said! . It makes me realise I am not the only one , which at times I do a lot as I don't have friends as I am now 32 and they all pretty much gave up on me when I was 27-28 because I couldn't enjoy the things others my age could.

    I am going to be getting help from a occupational therapist who is currently helping me battle the DLA , who quite frankly made me question whether my conditions are real ( my specialists tell me most of there patients are doing the same at the moment thanks to the government) anyway OT is going to help me learn to pace and stuff so hoping that will help.

    As for the energy , I do feel lazy a lot of the time and give myself a hard time for being lazy but I will try and stop doing that, it's amazing reading your words as it gives me hope that if I do give myself a break then maybe my conditions will be more manageable

    Thanks again

  • you are definately not on your own. I have Fibro and UCTD and i have felt down at times.

    I appreciate the so called little things that i hardly used to notice ! and rejoice in the good days ! It has taken a couple of years for me to make improvements with 'the Pacing thing' i have found this really hard but i know that i am getting better at it !!!

    I try to be as positive as i can be and have learnt how to say no ( most of the time )

    I always say ' this too will pass' on the bad days ( Echart Tolle book ) and know that there is an ending to feeling bleep bleep !!!

    I still get down but thankfully manage to be positive most of the time.

    Hope this helps x

  • Hello Zforsyth

    What has been said above is pretty much what a lot of us will tell you. And you are far from alone, though a lot of illnesses -especially the auto immune types - are by nature very isolating.

    My immune system fell apart back in the mid 80's when i was in my mid 20's. ME was all the rage in the popular press and after dealing with German measles, chicken pox and discoid eczema, I then went through glandular fever which never really resolved. A year later my GP told me that I had ME.

    BUT; He also tole me this 'You will get your life back'. Those words may well have saved my life. They gave me hope and something to hold on to through mental confusion, working, a young family and a wife who still says that lupus is made up illness.

    And many years on, I do have my life back, I have had it back for ages. OK, I never got to run the new york marathon or get my black belt in karate. But now aged 53 I remember the words of another doctor who said he would rather see me 'comfortable in the slow lane, than crippled in the fast'.

    Many of the people I went to school with are no longer with us, I will take this deal over theirs.

  • Thank you for your replies , your kind words help a lot. I am just finding things hard at the moment and can't see a way out of this mess. Each time I think I am moving forward or turn a corner , something else pops up and I have to start again. I hate people who self pitty normally, but at the moment I do feel very sorry for myself . This site seems very useful though and hopefully as I get on this programm with my OT I will learn to PACE and things will be better. Thank you all again. You have given me hope :)

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