Feeling lost

I haven’t written for a while….largely because I have been really chocca trying to get on with things. But the last week or so have been really tough and I’m really feeling lost and don’t really know why or how to cope with it all.

I don’t seem as able to cope with things since the summer and I find that all so frustrating. When I first got told it was time to start treatment, it was on the basis that my life would go back to ‘normal’ afterwards, but that just hasn’t happened. To everyone around me, things are fine again, life is hunky dorey, and I should be happy…..but I just don’t feel quite like that. I go through phases where I can cope….and then bang, it all seems to come tumbling down. And not always for any good reason. Recently, just trying to redo our bedroom has all seemed far too much. In the past I’d have thrived on this, but this time I just can’t cope. I can’t multitask. So trying to do the room, help at school, keep in touch with friends, and organise a ball has all just got on top of me. And I can’t deal with the fact that I can’t find what I want. I do nothing else all day, so feel it is down to me to find what we want for the room and when I can’t, I just feel like a total failure. And what makes it worse, is that I know it is only me that feels like this. Not Nick. He is brilliant and just wants me to be happy.

It’s not straightforward I know. At the moment I’m particularly sad as one of the guys from our ‘Under 50′ site, died over the weekend. I always find it hard when something like this happens as it brings home just how real my myeloma is and just what might happen to me. I’d just felt back on track mentally, and it has sort of brought everything crashing around me. I hope to dear god that my remission will last many years, and I have been living life thinking this, but when people die or relapse, you realise that what you wish for in life doesn’t always come good. I can’t stop thinking about her at the moment and I didn’t know her more than to write to. It just makes me feel so, so sad. God it’s all so rubbish.

Things are hard work these days. Nick thinks that part of it is that I have to learn to deal with being in remission. I feel like I should feel lucky to be in remission. There are people I know who have relapsed already, and god knows how they’d feel reading this – probably thinking that I should thank my lucky stars. But what do you do? I seem to be fine for a while and then things just build up and get on top of me. I don’t sit there thinking ‘It’s the myeloma’, or ‘I’m so unlucky’, but most of the issues we have these days come back to the fact I don’t really know whether I’m coming or going these days. I don’t know whether I have 6 months ahead of me, or 6 years. How do you live your life on those terms. With 2 kids, I can’t just go ‘sod life’ and do what I want. I still have the things I have to do everyday. And we still have the financial obligations. I want to go back to work if I’m going to be well for a long time, but not if I relapse this year or next. I want to enjoy the kids and have special time with them, but don’t want them to become spoilt or think that we can do that year after year. But I hate the idea with everything that I will assume/hope that life will be ok for ages, and that if I relapse I’ll look back and wonder why I didn’t take the opportunities when I had them.

Somehow with all of this I still feel obligated to so many people. Like I can’t let people down. Luckily my oldest friends are being really good…and I am very grateful to have people who I know in the main, take me for who I am. Now. But to so many people around, I feel I have to put on a bit of a show. Maybe we all do in life. It just really stresses me out now as I feel the conflict like I never did before. I want to be selfish and put Nick and the family first and foremost (and not care what the wider family and friends think). But I can’t do that. It’s just not me. I worry too much what people will think of me…or how little they’ll think of me. It frustrates Nick to pieces…..he just wants me to be happy again.

So, the question is how to get that back. I think I am happy when I’m busy…I feel like I’ve got it all under control. But then something seems to break me very quickly and I collapse. I don’t feel sad most of the time, but I think Nick is worried that I’m not very happy with my lot. I suppose it’s not really surprising but it must be so hard for him. How do you deal with it if you think the person you live with hates their life. Which I don’t. Not most of the time. But I do find it tough. And conflicting.

God, quite a self-indulgent post. But I really needed to write some of what is going through my head down. And hey, this is for me more than anyone else too.

More wine needed I think…….