Falling to pieces

Well after a fairly upbeat post yesterday (mainly written the day before), I’m not feeling so good today. In fact, I sunk to a brilliant low last night. It always seems to happen after I’ve had relatively positive news from my consultant and I don’t know why at all.

I’m just really fed up today and trying to work out why. Nick has been trying to help me too as I couldn’t even get out of bed until about half an hour ago. So I thought I’d use my blog for what it was always meant for…getting things off my chest and trying to understand why I’m so bloody miserable.

1. Thought of Transplant not having been successful – no matter what I said in my blog yesterday, this is really worrying me. I am so scared of not getting the time I had hoped for, and just because I got longer for my first transplant, doesn’t change this. I don’t want to spend the rest of my life on treatment, or worrying about my future. I try to be so positive about things and then it just doesn’t seem to go my way. And being in limbo just makes life really hard to plan for. Work. Family. Holidays. I know none of us know what tomorrow brings, but the knowledge it ‘might well’ happen, is much harder to live with than most people can imagine.
2. Bad Back – just after Christmas, I developed a muscular pain in my back. It isn’t myeloma related (I’m 99% sure) but I’m in a lot of pain and can’t do anything without it hurting. I’m needing paracetamol 24/7, using magnesium spray, on pregablin and have a near permanent hot water bottle on it. And still it hurts. That means I can’t exercise, can’t get out on walks (especially in this icy/snowy weather), can’t help as much around the house and am generally feeling totally useless.
3. Lockdown – still shielding after 10 months. Whatever I have said, I am well and truly fed up of being stuck in our house. The only time I have got out in the last 10 months has been to walk Marley or to go to hospital. I can count on my hands how many times I have seen friends. I am sick of zoom being the only way I can mix with people and even more fed up that my condition has stopped the rest of the family being able to mix with their family and friends. I listen to other people being frustrated by lockdown, totally understand it, but am now starting to lose sympathy. Try doing 10 months in our shoes, with a transplant in the middle of it, and see how it feels. I’m sort of fed up of trying to sympathise with everyone as if what we’ve gone through is on a par. It isn’t. It’s been really crap. For all four of us.
4. Lack of purpose. I knew that this period post Christmas was going to be hard. It is why I set myself up to do the London to Paris. But my back means I can’t get on the bike yet, and even when I can, I will need to borrow Sam’s as I can’t get an ebike for love nor money. I also really want to work. I still do a tiny bit of social media work but it doesn’t bring in much money these days as I don’t do online training and so can’t really do much promotion. I’d really like to go back to doing Community Fundraising, and had made that decision before Christmas, but the fact that I don’t know where my treatment is taking me, makes that very hard. I don’t want to put any charity in the position where they take me on, for me to have to leave. I’ve even thought about a general shop role, but I can’t do that until I’ve been fully vaccinated and until lockdown eases – and even then, they aren’t normally flexible enough to take into account my hospital visits. So I end up being responsible for the house. Cooking and cleaning. Boring. Uninspiring. Feel like everybody’s slave.
5. Putting on weight. I suppose this comes partially from the bad back and the inability to walk or exercise. Also not helped by eating too much cheese over Christmas. I’m also frustrated that I never lost the weight during that useless transplant, despite being so ill and not eating for 3 weeks. It all feels very unfair.
6. Homeschooling. Lots of people know how depressing this is. Fed up of moaning at the kids, nagging them to do their best rather than the bare minimum, and fed up of feeling like the school isn’t really living up to expectations.
7. Nick back at work. Christmas was lovely. It really was. I enjoyed having Nick around all the time and spending proper time with him. I find it hard now that he is upstairs working all of the time while I continue to have no purpose but to make sandwiches and dinner. I know he doesn’t feel like that, but I do. We had booked a few days away for half term to try and get away from the house for a bit, but of course that is now cancelled and we don’t know when we can book next as we don’t really know what Rebecca’s GCSE’s look like now. Even the summer is hard as Rebecca may or may not be going to Romania with Girl Guiding, her and Sam may or may not have DofE expeditions and I may or may not be on treatment. So many unknowns and by the time we do know, everything is likely to either be fully booked or far too expensive.

I know that everyone has their crap to deal with at the moment. The last year has been hard on everyone. But I think it has all suddenly come down on me. I feel like I just want it all to end. I don’t really want to be around Nick or the kids today. I just want to curl up and someone to come and take all this shit away from me. I can’t answer the phone or emails and really just don’t want to do anything. I know that I’ll pull myself out of this but at the moment, I almost don’t want to. I’m not writing this for sympathy. It wouldn’t help anyway. I just needed to be honest and get it out there.

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