Covid, coughs and crappiness!

It’s been a while (I’m so rubbish at this blogging piece these days!) but part of the reason for that is that we’ve been a pretty crook house for the past 3 weeks.

It started with treatment week at the beginning of April which as you all know, hits me a bit anyway in terms of lethargy and general flu like feelings. By the end of the week though I wasn’t feeling great at all and was in bed by 8pm on the Friday night. Nick hadn’t been great a couple of days before so I didn’t think much of the fact I was in bed for most of the weekend. He’d tested for covid and been negative.

By the following Wednesday I was still not well though. Still working but not at full functionality. Nick’s mum was scarily admitted to ICU with kidney failure (thankfully she’s on a normal ward now although still on dialysis so we’re still obviously very concerned for her). Things were feeling worrying across the board!

So while I was feeding the dog and everyone was moaning how much the food smelt, and I couldn’t smell a thing, it suddenly dawned on me that perhaps I should do a covid test. I genuinely didn’t think it would be positive as I’ve gone 3 years avoiding it, have had all my jabs, and hadn’t really been anywhere (apart from the hospital!) that I could have picked it up. But positive it was!

It’s all been very frustrating since as I’m still not well now, nearly 3 weeks on. I’ve tried to keep working throughout as we don’t get sick pay but on Thursday was so bad they sent me back from the Team Development Day we had. Nick has also been ill too and Sam has had the hacking cough – we’re convinced what we’ve been dealing hasn’t just been covid, but covid and a nasty bug. But of course it has meant that we’ve been unable to visit Nick’s mum, look after his dad or help particularly which is so frustrating and really bad timing. The guilt you feel even though you can’t do anything about it is mad.

I’m absolutely testing negative now and have been for nearly a week (I wouldn’t have gone to the Team Development Day otherwise), but it really has hit me for six. I’m still in bed writing this after a night not just of coughing but also being in pain – I’ve now pulled a muscle in my ribs from coughing and I can promise you that isn’t fun when you continue to cough.

I haven’t been able to cycle for over 4 weeks but am meant to be in training for RideLondon at the end of May (over 100 miles in one day). I can’t even see when that might change at the moment. I am now on antibiotics thanks to my consultant so hopefully that might help me turn the corner.

We’re still unable to visit Nick’s mum as we can’t risk giving her this bug. If it’s hit us like this, we know what it could do to her while she’s so poorly.

I am so bored of this now. We both are. And so frustrated. I know people are dealing with worse but this is our daily reality and it’s grim. With Nick being really poorly too my wing man is down and out too. And the kids – well they’re great but they’re teenagers 🤣🤣.

Anyway, keep your fingers crossed that perhaps by next weekend we’ll all be well again – just in time for treatment week 😫🥴

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Just because

I thought it might be time for a bit of an update – I only ever seem to write when things aren’t so positive – or I’m after fundraising donations 🤣.

But actually neither is the case this time (well I could do the latter but I won’t!!). My paraprotein numbers continue to frustrate me, Nick and the consultants by going up and down so that we never quite know if a rise is a blip or something to start worrying about. They went up to 8.5 two months ago, but thankfully have dropped back to 6.5. I’ll find out later this week what this months look like – but to be honest we have to wait for two continuous months before we worry/ relax. It’s hard because it’s never off your mind but at least they’ll pick up problems early.

I think last time I wrote I talked about whether or not to stay on treatment. But I spoke to my consultant, and, unsurprisingly he convinced me that it was likely that the drugs were keeping my numbers down and that if I came off, that could change. I knew that of course. And I probably knew it wasn’t really a choice. But I also felt like I needed him to know I was struggling a bit with it all. The reality is that no matter how hard I can find it on treatment weeks, trying to balance work and home, that a new drug could be far worse for me. Far more toxic and far less accommodating. So I’ll stay on Dara for as long as I can – fingers crossed that will be for some time!!

And while that carries on, I’ll keep going with everything else. I don’t think life has ever felt so busy. Work takes up huge amounts of my time these days….but I really love my job and so it all feels worth it. It certainly helps to cover the current bills!! I’m still cycling regularly and try to do a 40 miler most weeks – two if I can fit it in around everything else we’re doing! I’m continuing to try to get Nick to join me but unless I can find a whisky bar at the end of the ride I’m not sure if it’ll ever happen! And we’re doing the ‘nearly last part’ of our house renovation. Just got Sam’s room to do after that – just when we thought we didn’t have to, he has started to keep it tidy!!

So that’s the update for now. I’m sorry if I’m rubbish at keeping in touch these days. I don’t mean to be, and people are always flitting in and out of my mind (often while I’m cycling!) so it’s not a lack of thought…just a lack of action.

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Wax Melts for MyelomaUK

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