It’s not feeling a lot like Christmas

I’m sick of being sick. I’m sick of myeloma. I’m fed up with the pressure it puts on my life on an ongoing basis. I’m great 95% of the time, but this other 5% is absolutely horrible…and this is when I’m only on maintenance therapy. It’s miserable and it takes over everything….especially when lots of small things just tip the balance.

I think in one of my more recent posts I said that my paraprotein numbers had gone up. And they did a bit. They’ve been in the ‘7’s’ since then so all should be good. I’m relatively stable so I shouldn’t be worrying. The number of times people that say that they might not go up for ages. Or that it’s just important that they stay stable. And of course it is important. Don’t people realise that I know that. I should be happy.

But I’m not – I’m really struggling at the moment. It made me realise yet again, just how fragile my state of health is and how quickly everything can change for me and for the family. Which should make me want to be happy and make the most of things…..not to argue with the kids…..not to get upset about work or friends or family….But somehow it is doing the opposite and just making me super anxious, and now with just a few things tipping me over, I’ve gone into depression again.

I’d been so proud of how I’d reduced my antidepressants over the past couple of years to a really small dose. I know that I need them and I’m not ashamed of it at all, but I was pleased I was coping a lot of the time with very little. But in the last week I’ve had to increase them again to make sure that I can function. I don’t want to see anyone. I don’t want to talk. I seem able to function in a work capacity, but am taking things far too personally. Thankfully it’s not my supporters that see the brunt of it all….but I really feel for my poor boss at the moment though 😦

Nick tells me that I have lots going on…more than most….but really most things are the same as for everyone else…the only difference is the myeloma and by now I really should have that under control. But sometimes it is exhausting waking up every day and having to think how it impacts life that day and that week. Do I have appointments? How is treatment affecting me? Is the ache in my shoulder bone damage? Is the sore throat recurring infection that I should be worried about? Why is my back hurting? Will those numbers go up at my next appointment? I really can’t shake that one either.

And that pressure to keep going and make the most of life can sometimes be more exhausting than anything else and that’s how I feel at the moment. Like it’s all just a bit too much. I’d quite like to crawl up into a ball and just fall asleep for a month or two.

It’s not just me. There’s lots of other stuff going on too. My mother in law has been in hospital for 3 weeks (thankfully out today), the kids are being typical kids (but still cause worry), the charity sector is hard to work in at the moment, I’ve got more aches and pains that I can even voice any more (since there is no reason for them), I’m not sleeping well and I haven’t managed to get out on the bike for weeks now.

So I don’t feel much like Christmas this year. So if I’m not responding to you, it just me. Please don’t take it personally – and please just give me a bit of space. No messages needed – I’ll be fine…..just bear with me.


About Deb Gascoyne

I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve was on maintenance until November 2018 but my figures went up so officially relapsed. I have been on dara since 2019 and had my second transplant in September 2020. Still on dara and keeping fingers crossed.
This entry was posted in Myeloma. Bookmark the permalink.

1 Response to It’s not feeling a lot like Christmas

  1. Margaret Jackson says:

    One huge hug from me! I’m not feeling very Christmassy either. I’m fed up with where I


What are you thinking?

Please log in using one of these methods to post your comment: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s