Puts things into perspective

In July 2012 I was diagnosed with RA, the same month I started with a strange feeling in my right leg and thought it was connected to my RA. My specialist nurse noticed I was dragging my leg and recommended I saw my GP. A lot of time has been wasted with me being passed from pillar to post and finally after I have lost use of both legs and 1 arm with limited use in the other and speech also affected. I have been diagnosed with Motor Neurone Disease and have a limited life span probably no more than 2 years with my breathing and swallowing affected as those muscles stop working too. I now feel that RA isn't the worst disease I have to cope with and I say to everyone, enjoy what remissions you have and always remember to enjoy the little things in life cause you never know what is round the corner. xx

35 Replies

oldestnewest
  • That certainly puts things into perspective, I am so sorry to hear your news x

  • I am sorry to hear your news,yes remissions are lovely.All i can do is send you lots of hugs from me.xxx

  • That really is awful. yes you are wright enjoy what we have xxxxxxx

  • Big hugs. I had a friend with this disease and you wouldnt wish it on anyone. I hope you can make the most of things and are comfortable - small comfort isnt it. XXX

  • Bless you...you are so right and thank you for your wise words.

    Sending you love and hugs.

    Maddie xx

  • Thank you for sharing this with us and reminding us that we have to put things into perspective. Take care and I hope that you are able to enjoy your life even though you have more limitations now. xx

  • So sorry and as others have said - thanks for sharing this with us. xxx

  • So sorry to hear ur sad news ((((hugs)))) also thanks for sharing x

  • Sorry to hear your sad news, my sister-in-law had that so I know how awful it is, sending you lots of hugs, enjoy what you have while you can.

    Wendy xxxx

  • So sorry to hear your sad news. So many things to think about.so many thing to do. Hope you have lots of nice things planned and things to do. So glad you feel able to share your news. Always here with a friendly ear for a chat.

  • How true, and a good reminder, thanks. I feel for you, it is an awful disease. Polly

  • so so sorry to read ur blog,you are right to tell us to make the most of wwhat we have, one very very brave lady

    lots and lots of love from Ali xxx

  • Sorry to hear your news, you are so right as none of us know what is around the corner.

    xxxTracy

  • I think you are an amazing lady and thankyou for making us so aware of how important each and every day is ...lots of love xxx

  • Hello there,

    I'm really sorry to hear your sad news and I hope that you are at least being kept comfortable.

    Life has a way of biting you on the bum when you least expect it !!

    Well, that's my own words for it, since my daughter of 26 years was diagnosed with Leukaemia and died 10 months later. That was 16 years ago and since then I have lived for the day and let tomorrow take care of itself.

    Thank you for telling us about your plight and for as long as you can manage to keep in touch with us, we will be pleased to hear from you. Sending lots of hugs, June xx

  • HELLO

    So sorry to hear of your news,we should all Count our Blessings.Stay strong Sue

    love to you, PATXX

  • I think this should bring home to us all. me included as definitely been selfishly moaning recently that there are worst things, our disease doesnt kill us in a short time span,

    If I can offer any support or a chat please message me, part of me hopes that your diagnosis of motor neurone could be proved wrong xx

  • Well said Summer!

    Sue...you have been in my thoughts this evening,

    Maddie xx

  • So sorry to hear your news. My heart goes out to you Sue. You are very brave sharing with us. Sending you my love & prayers. Janet xxxx

  • Hi Sue, what a shock. I must admit that often when dragging myself around I thought this isn't just RA, so when I saw the neurosurgeon I asked him and he said I didn't have the signs. My relief was enormous as I don't know how I would cope with your illness . In our neuro unit they had a lady on the desk from the motor neurone society who was very lovely and there to back up sufferers and their families. I hope you are getting lots of support and help and enjoying everything you can from your life.

    My aunt died a couple of weeks ago from terminal throat cancer and she had time to settle her affairs, plan a wonderful funeral and talk to everyone. It was a joy to say what I wanted to her before she left us, the Macmillan nurses were so good and the hospice and she was so calm and serene. I think I would just be angry and upset but for some reason she found a lot of strength to enjoy her time.

    Thank you for putting some hard hitting reality into our little joint complaints when yes things could be worse and sending you hugs and thinking of you , Hugs Axx

  • Hi Sue

    I'm so sorry to hear your news. What an awful shock. You are in my thoughts.

    Dotty xx

  • I have tears in my eyes. What an amazing person you are sharing this to make us feel better. A big cyber hug

  • Morning Sue, what a brave lady you are,we take so much for granted,until its put into perspective,thank you for sharing your story.

    Soft hugs to you

    Angie x x

  • How sad to read your blog, I can only send you kind thoughts and pray for you xx

  • Hi Sue,

    What a brave lovely lady you are. Life can be so cruel at times and we should all make the most of each day that we have. I hope you are not in too much pain and have family and friends to support you at what must be a very difficult time for you.

    Thinking of you lots xxx

  • Sending you lots of love. Any chance that IVIG infusions would help?

  • You are so right. We all need to make the most of life and enjoy whatever we can. Thanks for reminding us and sending you hugs and very best wishes.

    Caroline.

  • So sorry to hear you news.

    Mary x

  • So sorry :( xxx

  • What an amazing lady you are......hoping this finds you comfortable and able to enjoy those little things yourself.....xxx

    This is my first post on this site ..waiting to have my diagnosis of RA confirmed by consultant...however Dr was completely convinced....grr......

    I shall remain positive (bit like my bloods!!)......and think of you in my prayers...

    Wendy..x

  • Thankyou everyone for all your friendship and messages of support, I will do my best to stay positive and enjoy the rest of my life to the best of my ability, taking each day as it comes. On the positive side, I am now getting visits from long lost friends which is lovely! They all say keep smiling Sue and I will amongst the tears.

  • I am so sorry, thank you for reminding us how pressures our life is and not to take it for granted, my thoughts are with you, Please keep in touch with us and let us know how you are, We are still hear for you, lots of love Shirley XX

  • I just didn't know what to say to you when I read your blog yesterday & was worried I'd be clumsy with words. But I'm sure you'll forgive any clumsiness. So sorry to hear your news and hoping that there will be many happy times ahead for you despite this very upsetting diagnosis.

    Thanks for helping to put my RA into perspective - that really helped me when I was feeling sorry for myself.

    Thinking of you,

    Luce xx

  • sue i am so sorry to hear your news, i hope you have many enjoyable days ahead and i send you all the love hugs and comfort in the world, just sorry cant be there in person to give to you. I hope you get all the help and support you need to make your days more comfortable.If you ever need to chat to i am also here for you. love and best wishes lena xxx

  • Sue, thank you for sharing this difficult time with us, it really does make you stop and think and take stock of things, I for one can become preoccupied with the day to day strategies needed to cope with ra and reading your touching blog has put a much needed perspective on my own lot. I do hope you have plenty of support and help, as well as the love and friendship of family and friends to keep you positive, purposeful and leading as normal a life as you can for as long as possible. Sending best wishes and lots of positivity, please do consider this site as a source of friendship and support, we will all be here for you, love Ali xx

You may also like...