Putting the shoe on the other pain-free foot

May 24, 2014

I’m used to being the patient. I don’t think I play up to it but I’m used to people asking how I am, I’m used to never being fantastic but knowing the appropriate response to make people feel comfortable enough without me lying.
I’m used to the frustration of feeling like a burden on my loved ones and putting limitations on the people I am with.

And then two months ago, my boyfriend hurt his back at work. He’s a chippy and he doesn’t know exactly what he did but while I was overseas for work he suddenly became bed-ridden.

I came home exhausted from a media trip to Vanuatu, feeling on the edge of a flare as I always do after a work trip and ready to crawl into bed for a Sunday of sleep before going back to work on Monday. But as I walked in the door and saw the mess and found him still in bed at midday I knew that the tables had turned and this was not a dull back ache.

I mentally picked myself up and cleared up the house, put on a load of washing and began thinking about whether we had food in the house for dinner. I thought – he has nursed me through some bad flares and general day to day MCTD miserableness, this is my turn to care for him.

Two months later, he is still off work, can only walk for short periods at a time and is only showing very slow signs of progress. He is feeling down and bored and struggling to see the light at the end of the tunnel. We know he will get better, we just don’t know when. And in the meantime, I try and hide my own pain, which thankfully right now is not too bad, and concentrate on giving him the understanding he needs that endless doctors, constant pain and restricted freedom is the worst and just as he will continue to hold my hand through a lifetime of MCTD, I will hold his hand through this…and whatever else life throws at us.

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6 Responses to “Putting the shoe on the other pain-free foot”

  1. Krish said

    I really loved the way you being practical … Hope u guys get well soon and there is nothing in this world to get bored of 🙂 .. Easy to say I know!

  2. jodiebodie said

    Hi Naomi, I am sorry that both you and your partner have suffered together but glad you are both committed to mutual support. I have been following your blog as I am also an Australian with MCTD. I am not well versed with Word press however and my attempts to leave a comment directly on your blog haven’t worked. This comment is being added through the WordPress Reader so I hope it gets to you. If you are interested to share notes, you can email me through jodiebodiecrochets@gmail.com I also keep a blog (not on wordpress) where lupus and mctd get a mention but you do such a great job of describing the experience of living with it that I will refer people to your blog rather than re-invent the wheel! It is reassuring and interesting to discover that my collection of symptoms, which is so unusual to local drs, is not that unusual for anyone with the mctd diagnosis. All the best with your daily struggles. Sincerely Jodie

  3. Lorraine said

    Hi Naomi:
    Wow, I love your blog! I’ve been diagnosed over 3 years ago with MCTD. Your blog helps me remember how I felt back then! And you share things that I deal with and feel all the time! I find it so hard to tell others how I felt (and feel) because every day is so different. I’m on Plaquenil which really helps me. I actually found your blog while googling a connection between MCTD and throat problems. Right now my voice is very crackly (thanks for your humorous blog on that by the way!) and it’s very frustrating! I’m constantly clearing my throat. Do you struggle with dry eyes? That is one of my worst symptoms right now. And ya, I miss playing sports like I used to but hey, there are definitely other things in life to enjoy.
    Thanks for your positive blog!
    Wishing you all the best.
    Lorraine.

    • Hi Lorraine,

      Thanks so much for the msg. I’m glad the blog has been helpful and apologies for being so lazy with posts this year.

      My doc doesn’t think my throat has to do with MCTD and i went to an ENT who said I had a nodule which I had removed in an expensive operation.

      I recovered for a bit but now a few months later my voice is cracking and unreliable again. Especially if I’m tired.

      Frustrating. Anyway. Thanks again
      Naomi

  4. Mayra said

    God bless you 🙏🏻 the first 2 years I went undiagnosed, my husband relapsed from AML (cancer) we took care of each other. He was an angel. I worked full time, hard labor. My fingers were swollen like sausages. I had fevers every day. I had night sweats everyday, fatigue, chest pain, and the list went on and on. He passed away April 2014 and that is when I saw how lonely my life would be without him. I know it’s hard but you still have each other.

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