Saturday 30 May 2015

MS and Lemtrada fine .... Otherwise devastated and heartbroken

At 10:45am UK  time my younger brother passed away at the ago of 40.

I'm in bits and trying to hold everything together. So i can't promise to keep this properly updated for a little while.

In the last 24 hours I've spent a lot of time at Heartlands Hospital Birmingham wearing a mask, gown, gloves and covering myself every 15 minutes or so in the antibacterial gel on every piece of exposed skin. The hospital freaked when I told them about the treatment last week and no immune system and and my response was 'try to get rid of me - it's MY risk to take'

The MS isn't bothering me, no fatigue other than emotional exhaustion and no other bits and pieces. 

I was there until Ian's last breath, and dear god it hurts so much.

So apologies if my updates are not regular ..... But if my precautions work and it can help others before / during and after Lemtrada with how to carry on ( or not be so bloody careless) then so be it. 

Love, best wishes, hope and a bucket load of tears

Rest In Peace Ian, I hope you are with Mum and Dad again, I will love you always xxxx

Tracy xxx




4 comments:

  1. I really am so sorry Tracy, I have been with you all the way during your treatment, and totally unaware of anything else you were going through. MS can be all consuming and can make you lose focus on others around you, so for you to be with your brother to the end is an incredibly selfless act, especially after all you have been through.
    I know we only have MS and Lemtrada in common, but I hope you can accept my deepest sympathies and hope you have a good network of friends and family around you. By the way my wife passes on her sympathies too,
    John.

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    Replies
    1. Thanks John, got up this morning and I can't stop crying, everything seems to set me off, the poor dogs don't know what to make of me, so they're just snuggling up to me and won't leave my side. My heart hurts and it's hard to breathe, I just can't understand how this could possibly have happened so quickly

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  2. We are here for you too.
    Both Arfs and I know the pain of losing someone, so our hearts, thoughts and prayers are with you and your family.
    Love and hugs.
    Mie

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    Replies
    1. Thanks Mie
      Appreciate that, hope you guys are doing okay xx

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Far too long between updates (again)

 So what have I been up to in my long absence and how have I been ? Well the Crohn's is under control and back to how it's always be...