Life's a bitch then you realise what is really important

Anyone who read my last post will remember the joy. I have been in a wheelchair for 2.5 years and suddenly I was able to walk. Don't care what you call it but I have just spent 5 days picking up dirty clothes off of my kids floors and all I call it is bliss!!!

Thing is after just 5 days I can feel the legs shutting down again. I know without a shadow of doubt that very shortly I am going to loose this freedom and I envy the old part of me that could just go out for a walk and hold my daughters hands instead of steering my wheelchair.

My husband is away till tomorrow and I refuse to let on to my girls that the legs are going. I put on some boxing gloves and wanted to punch something but worried it would wake them so instead I took them off and ordered a punch bag and wondered what angles I could get on a back blow from a wheelchair.

Sometimes the worst thing in life is the chance of hope and yes I write this wondering where the tissues are, but then I also know I really don't care passed how my girls are. If life has just teased me with the idea of walking and that is all it is I don't care. As long as I can spend time with my daughters nothing else matters.

12 Replies

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  • Positive yes

    Well done girl that's the

  • Hi Davros,

    In spite of everything you still seem to find an upside.

    i think to deal with this illness you have to have a positive attitude otherwise we would never get out of bed everyday.

    I must admit though I think the reason I have fought Lupus so hard for the last 12 years has been for my children, they have given me the reason to get up everyday. And even though they are now 17 and 19 i still get up to see them off to school and work and make their lunch to give me a sense of purpose too.

    Keep fighting and staying strong :)

  • I understand exactly where you are coming from, for my son I pick myself up, dust myself off, get back in the saddle & fight on! My heart goes out to you, lupus plays some cruel tricks.

    Love, light & blessings to you.xx

  • You are amazing. Keep fighting, I agree nothing matters but my two lovely boys. Lupus is crap but we can beat it, you are doing a great job. Wishing you well and sending a hug xx

  • So sad that this has been short lived. Sending you a hug x M

  • It is the thought of not being with the children and loved one that keep you going but when they are all grown up along come the grandchildren and you get the boost to see them grow up. I have had a bad year (a bit better at the moment but never take anything for granted) but the thought of my love for my new granddaughter keeps you going. I don't feel at 55 I am old and have had this following me round for 30yrs so I say to every one have plenty of hugs and pat yourself on the back for being a survivor how ever hard it is. good wishes to you all and Davos i hope you get to keep your mobility a bit longer and you never know maybe you will get it back again. Well done.x

  • If it came, it will come again. Do as you're doing... go with the flow. You are an inspiration to me! xx

  • Big hugs x x x

  • Keep being positive... visualise yourself walking....keep fighting it came back it will again....don't over do things....Take Care.....Hugs xxx

  • I'm sorry things didn't stay as long as we all wanted and hoped for you. Remember your family love you even if your sitting down just so long as your there. So enjoy what you can the other stuff doesn't matter xx lots of love and hugs from me xxx

  • That's the spirit girl with lupus we live one day at a time and make the most of it. Its a hard life but we are warriors, only who feels it knows it. Keep the faith and remain strong.

  • Hi, I really, utterly relate to you.

    I have had MS for 8 years, and have been in a wheelchair for 3. I am now being investigated for Lupus, having had three episodes of life threatening blood clots since January.

    I had a week when I could walk. It was bliss, as you say. But, it didn't last for long, and that taste of what I missed so badly made the longing to walk so much more strong. I felt I had accepted an identity. Me = wheelchair... ok. Then, me = walking .. who was I now?

    I'm back in the chair, undergoing the lupus tests, adjusting to warfarin, sleeping all the time, and all I want is to be able to run around with my three daughters, and do the mundane things like, as you say, picking their dirty washing up off the floor.

    I can't say anything other than I am afraid, frustrated - I am a lively person who's body doesn't agree, and that I understand that sometimes, the good times just feel like a smack in the face because they are but a reminder of what has been lost..

    Sorry if this seems negative - I simply wanted to say that I get it. I understand.

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