We can beat it

3 years ago I went into a coma ..... Lupus had attacked my brain and my spine .... I was asleep for over 3 months .The crash team brought me back twice and my family were told I may not recover .... .. I woke up paralysed and unable to use my right side ... I lost my hair , had a Tracheostomy and a Catheter all whist I slept ..... After 7 months I came home in a wheelchair .... A stairlift , ramp , bath chair were all installed ....... I went from wheelchair to frame to now using crutches. Last week I took 5 unaided steps .

I still have lupus which came on 3/4 years ago ..... My hair is long now my bladder although weak is better . I learnt to speak again once trache was taken out .

Lupus isn't curable but is treatable with a positive mind ................ 😀

8 Replies

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  • Hi Lillyboo, I am so sorry to hear what happened to you & all you have been through, my heart goes out to you!

    You should be tremendously Proud of yourself of how with positive thinking/attitude you have turned your life around & come on so very far!

    I think you are amazing to overcome everything & inspire others, such as myself (I"ve recently been diagnosed with Lupus but spent time in ICU on Life-support before diagnosis!)

    Many congratulations in your recovery, may it long continue to grow stronger for you & your family! Just hearing your story, helps, inspires others that there is hope with this insidious illness to overcome even the bleakest of circumstances! I wish you well for the future & may all of your dreams come true for you as you deserve them too?!

    Sending positive, healing, healthy comforting vibes your way. Look after yourself please?! Thank you for sharing your amazing achievement with us.

    Many blessings

    Lynn XX :)

  • Thank you so much Lynn, the fact that you were also in ICU shows the determination you have as well .

    I had only had Lupus for about 8 months before it knocked me for six. On 5th January 2012 I had taken the day sick . By the time my daughter came home from work that evening I didn't know who or where I was ........ I don't remember anything until end of March I had missed my 50th birthday and winter ... Lol

    I have a 4 years old granddaughter a1 year old granddaughter and a 1 year old grandson ...... I look at them learning to to walk and I copy them lol

    I think we all take positivity from each other as Lupus sufferers . Something else that spurred me on was buying my records from the hospital that took such great care and dedication towards me . To read where you come from and see where you are now makes you give thanks .

    I wish you positivity and strength and know that once you understand how your body works and acts in different situations you can avoid , control, nurture lupus

    Thank you

    Lesley x x

  • Bless you Lesley for such a wonderful empathetic/ sympathetic reply!

    WOW that must have been such a frightening experience for you & your family to not even know who you were or what had happened to you! You are an extremely brave lady. I think lots of us are who suffer with chronic, serious illnesses.

    When I was in ICU, I had Chronic Pneumonia, Septicaemia, Sepsis, Respiratory Failure, Organ Failure, the Anaesthetist who incubated me to the Life-Support Machine had to do it in Resuscitation, as I was too ill to be moved to ICU!

    Both the Consultant/Anaesthetist told my husband, they did"nt expect me to survive until the morning! Our 3 wonderful sons were sent for (youngest in Uni, so had to travel home alone!) were sent for too, to say their "Goodbyes to me!".

    I think it was worse for them than myself as I was completely out of it oblivious to anything happening to me apart from horrific pain! The Staff in ICU called me their "Miracle Patient!", spent a month in there!

    I have a tremendously strong faith which I believe helped me through! I went through a period of not knowing where I was, did"nt know my sons, acting extremely "odd!", invisible knitting (I can"t even knit! Reading Newspapers - with no newspapers! Trying to sign songs from the 70"s (I can"t sing either!). Although my experience only happened over a few days, unlike yours it was frightening, to be told about your behaviour afterwards, not remembering a thing!!

    You are an extremely strong, resilient person to have overcome everything you had to endure in your life!

    You truly inspire me that almost every single obstacle put in our way can be challenged and re-gain your life back.

    I think you are one amazing lady! You should be very proud of yourself, I am sure your family are?!

    Enjoy your new-found freedom of "copying!" your grandchildren to walk again (Role reversal!) but just think of the fun you will have explaining to them when they are older, that they taught you to walk, not the other way around!!

    Wishing you a truly spectacular recovery, may it long continue & grow?! I have many serious Syndromes, 2 of them Progressive, Incurable, Genetic, fatal, life-threatening!

    Thank you for helping me come to terms with recently being Diagnosed with Lupus!

    Sending positive, healing, comforting vibes to you.

    Many thanks

    Many Blessing

    Take good care of yourself Lesley, One day at a time, for that is all any of us have.

    Best wishes

    Lynn XXXx :)

  • Amazing you are just amazing x x It seems as if our roads are more or less parallel ..... Even down to the feeling of family suffering far more sitting watch and waiting on our out comes 😪😪

    I have great faith also and believe fate and inner strength play a huge part .Thank you for you so kind words x x

    Sending you love faith harmony positive vibes x x I am going to keep you in my prayers .

    God Bless you and yours. You are a lovely person and that will hold you high x x

  • Bless you for such kind, thoughtful words! Your sincerity and faith shines through in such a gentle manner!

    I have to agree with you re our "Almost Parallel!" circumstances! Quite remarkable!!

    As Wives & parents, I sincerely believe God gave us that "Inner Strength, determination, courage!" to keep on fighting to be with our families, who need us so much, as much as we need them!

    It is a privileged to meet you and an honour to listen to your experience, strength & hope, as a Newbie myself!

    I am so blessed to be a Member of this Site. I hope we can become friends, to help support each other over the adversities in life, suffering with many ailments?

    Please feel free to PM me, if you feel like a chat @ any time? I feel we have so much in common already!

    You truly are one remarkable, strong, courageous, caring lady!! Keep looking up!!

    God bless

    Sweet dreams

    Lynn Xxx

  • Wow Lillybo, you really have been through the wars! And here I am feeling sorry for myself because of a few mouth ulcers. You know it's stories like yours that need to be got out there to the public domain to really give a wake up call to those you know nothing about these conditions and the horrendous complications they can cause. Thanks for sharing your story and every best wish for your further recovery.

  • Thank you 😀you know ulcers can make a person feel very low also .... Partly because you know why and where they come from .... Best thing is if I have any ulcers now I treat them accordingly ASAP 😀

    So don't think you shouldn't feel sorry and need a hug Lupus treats us all in different ways but in each way it's horrible for all x

    Take care of those ulcers and in all honesty trying to eat is a nightmare and I feel for you x x

    Lesley x

  • Lillybo, You have done well for yourself with your attitude and recovery. May your recovery continue.

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