Post 18 – Dose of reality

I’ve been busy recently. Really busy. Until last week, I was working 22 hours a week, looking after the kids and trying to fit in 40 Challenges around all of this. So what’s the problem I can imagine lots of you saying. And you’re right to a degree….loads and loads of people do that…..single parents do all of that without any support – at least I have Nick to help me out. Lots of people probably do even more than me.

BUT, every now and again, I get reminded that I am not quite the person that I used to be and that my health is a little bit wobbly. Don’t get me wrong. I am very, very clear that I am lucky with my myeloma. It could have been so much worse. I could have relapsed by now, I could have had bone or kidney issues. I could be constantly ill. So this most certainly isn’t me moaning about it, but just me trying to let people know how things are.

Generally I am really well. I get on with everything these days, and rarely think about my myeloma apart from as a fundraising focus. However, underneath it all, the drug that I am on that I believe keeps me in remission (Revlimid), causes me to have low neutrophils. The lower my neutrophils, the greater my risk of infection. If I become neutropenic, I am at risk of being taken into hospital until I’m not! Basically it would mean that my body couldn’t fight the infection efficiently and I would need to be monitored. At the moment, I have neutrophils of about 1.0….a bit on the low side. If they went under that and I got any sort of infection, I could be admitted.

I know all of this. But I slightly stick my head in the sand, ignore it and keep going. Last week I kept going because it was my last week at work. Then I had the sad event of my godmothers, husbands funeral…I wasn’t about to miss that as she (and he!) have been amazingly good to me throughout my life and now I need to be there for her. And then I fell flat. I got aches, headaches, a sore throat and a cough. I spent the Friday in bed…..until the evening when I made a couple of cakes for one of my challenges that we had on the Saturday…..Nick was NOT impressed. And probably he was right as I felt awful again by Saturday evening. We had to spend fathers day apart as he took the children to visit his 96 year old nan and I couldn’t risk making her ill. I’m still not well although now I think I sound worse than I feel.

it is the one bit that frustrates me these days. I want to keep going like I used to be able to and I don’t want to feel like people are always watching over me, that I have to be careful with what I do, or that I have to ask for help. I want to be 100% again, and not just 95%. Greedy isn’t it?

As I say, I shouldn’t complain though….I just wish I didn’t have that niggling reminder of what my reality is these days!


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