No umbrella… no dancing shoes…

I recently added the tagline to my front page: “My life with Myeloma… And learning that life isn’t about waiting for the storm to pass, it’s about dancing in the rain.” Sounds great, doesn’t it? So spiritually aware and positive?! Only today, I feel like I went out with no umbrella and no dancing shoes… 😦

I have days like this… Low energy, low mood, low motivation. They’re the days when I’m taking Revlimid but not Dexamethasone – and it’s important to log these too – all part of the whole experience.

So today, although I went to my T’ai Chi class, I had to sit down for parts of it because I felt dizzy. I came home and went to sleep for an hour on the couch. In the afternoon, I got out in the garden and managed to change the tap on my water butt, plant a couple of plants and do some watering, but then I was pooped and had to retire to the couch again. This is how these days go…

For those of you who know me well, you’ll know me as a busy, active person, rushing around, trying to do too much in not enough time… Well, I can laugh at that me now – and envy her a little too. I don’t have a choice except to be slower, calmer, choosing to just do one thing and then rest and leave the other things for another day. It’s frustrating when you know you only have limited time and still feel the same sense of urgency inside.

So many things I want to do… create an attractive garden, front and back, get a dog, which requires having fencing installed, which I am struggling to get anyone to give me a quote for… and it all takes so much energy to just make phone calls and negotiate.

My aunt has offered to pay for a cleaner for me, as I can’t do it myself, but again it takes effort to just find someone. I’m still looking.

The slow tedium of the days when I’m not taking steroids… It is boring, frustrating and I get very emotional – bursting into tears at the least opportunity.

If I think of doing more sedate activities, such as writing this blog, I can’t always find the words, can’t concentrate or necessarily string sentences together.

I also feel some pressure to keep up a positive front from the “oh you’re so positive!” group of friends/family, to be that dancer in the stormy rains, but sorry folks, there are days when I’m down and emotional and lacking energy… Not quite so Pollyanna!

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2 Responses to No umbrella… no dancing shoes…

  1. Lilian Black says:

    Total and unalloyed empathy, me too.


  2. Hi Jet,

    I totally understand when you talk about being at a loss for words when you come to write your blog. I’ve been feeling like that myself, due to lack of energy. I really appreciate your comments, i’m pleased that you’re finding my account of things reassuring. I’ve been neglecting my online life as I was down in London visiting friends. I had a brilliant time and actually find myself dancing along the street to my ipod whilst walking back to my friend’s house at night. Exhilarating. Wish I felt like that all the time! I’m in hospital at the moment,awaiting a blood result that will determine whether I have to stay in or not. Oh the tedium of waiting. Even on this fancy young adults ward, time still drags.
    Hugs for you too.


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