Au Revoir

February 12, 2013 § 10 Comments

Sus - Before I was Ill

I havent written anything in this blog for ages. It hasn’t been because I haven’t thought about writing posts, I have. It just seems to evade me to actually write them down.

I was wondering about this and asking myself, why haven’t I been able to tell you about some of my latest health issues. Like the fact that I had some bloods done lately that found an auto antibody called PMscl which basically means  I now seem to have an overlap disease, schelraderma. And this (and I need to confirm this once I have my next consultancy appointment) means I have a rare form of dermatomyositis called schleradermatomyositis (say that while eating an apple!). It’s so rare there isn’t even an article about it in Wikipedia.

So why haven’t I written more blog posts of late?

I think it is because I am starting to feel better (with, or without, the schleraderma).

I am back at work full time (although often that really takes it out of me and I get exhausted).

I feel a lot stronger in myself.

I am managing to do  4 minutes on the cross trainer, twice, most days.

I can walk much further.

I am even going to my first business meeting next week: It’s been at least 10 months since I was able to, not only travel to a meeting, but actually have the strength and stamina to sit though one. It’s in london at Imperial College and its also signficant as it’s the end of a 2 year project I’ve been involved in that I’ve somehow managed, through the illness, to stay afloat with.

Myself and Suz started this blog to help us cope with a shocking and difficult reality, of being very sick. This blog and the people who read it and had conversations with me about the trials and tribulations I wrote about, has helped me to get through what has been, probably, the most difficult year of my life, both emotionally and physically.

I know I’m not completely better and it’s an incurable disease anyway, so will rear its very ugly head from time to time, but for now, I am moving forward. Dermatomyostis may be clinging onto my shirt tails and causing some drag, but I’ll wear some skates and pull it along with me, I will no longer let it control me, I want to live.

So my blogosphere friends, I say, for now, au revoir and thank you for being there with me: I wish you all, health, love, happiness and peace.

Sus xxx

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§ 10 Responses to Au Revoir

  • Michelle says:

    Hey Sus,
    First I want to say ‘Yay!!’ for feeling better and moving forward. :) I too haven’t been writing (I stopped for a year..) and today I got online to write, yet there’s so much going on I can’t seem to write it down.
    Wishing you all the best. xoxo

  • PussDaddy says:

    I hope you are still doing well?

    PD

    • susiemorrow says:

      Im OK Pam, hope you’re well?

      I am a little under the weather at the minute, hoping its a bug rather than a flare of the disease. I see my consultants in a couple of weeks so ill talk to them about it then, just dont want to have to up my medication again.

  • Diana Lopez says:

    Just diagnosed today. Feeling a little scared.

  • Maria says:

    How are you doing? I hope still well! I was diagnosed with DM about 3 weeks ago (been sick since Feb.) I am so scared and tired of feeling this way. I am on 20 mg of Pred and started methotrexate on Monday. I don’t know how to have the patience to take this, or if it will get any better. Your blog gives me hope that you were able to start back to work in Feb. I hope you will tell me that you are still doing well?!!!

    • susiemorrow says:

      Im doing very well indeed…apart from making the mistake of spending a little time in the (rare in this part of the world) sun, which has caused a mini flare up (sore muscles, my larynx is struggling and so my voice is weak, etc.) but over all, im doing pretty well. You will too, it just takes time. Have you tried to look at your diet? I am sure being gluten free and not eating meat has helped me to weather this awful storm. YOu really should join the facebook support group: http://www.facebook.com/groups/118333201479/ if you’re on face book, or if not, check out the myositis society. Good support makes a massive difference. It’s a bit of a long road, but you’ll get to the end and you will feel better. xx

  • JillinoisRN says:

    I just saw this (not sure why it took me so long). Scleroderma is a big illness to wrap your head around as it can affect so many different things. I’m sending my thoughts and prayers. <3

  • Hi there, I’m Lindsey! I have a question and would love to speak with you. Please email me when you have a chance, thanks so much!! lindseyDOTcaldwellATrecallcenterDOTcom

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