Thanks for the good wishes everyone, sorry I haven’t posted, it’s not been a great for days for pain and fevers.
Seems to have really ramped up in the last few days and haven’t been able to do anything much, feel completely useless and dread the night fevers (sadly not the John Travolta kind). They only get to about 38.5°, so not very high, but make me feel fluish and pretty ropey and my resting heart rate is fast, it’s actually fast all the time but mental at night. Paracetamol seems to be best for that, but again not great for liver so can take max 6 a day, but only ever take max 4 as trying to take as few as possible.
Even just weeks ago before this horror erupted I was such a busy person, I barely stopped from the time I got up until the evening (blamed being busy and active on some of my pains, had honestly just got used to the mid back ache and had a hot water bottle most evenings thinking it was normal). Anyway, awful feeling like an invalid, so grateful I have the support around me and people who are more than happy to do the things I can’t. I honestly cannot express my gratitude for my family enough, they are superstars as it’s not easy for them and I hate feeling like my DH is my carer. I cannot imagine going through this alone, and yet people do, it upsets me to tears to think about other people having to deal with this alone, I don’t know how they would manage.
I was prescribed pregabalin on Friday, but I’m not sure it’s doing much, although I’m slowly increasing the dose, makes me feel a bit tired although also a bit more relaxed. I’m back on the Dexamethasone and have to take paracetamol and codeine when needed. The worst pain that has started late last week is a really gripping one that takes my breath away, very sharp and like someone has squeezed my liver very tight, it only lasts seconds at a time, but happens often and it’s totally paralysing. I’m actually scared of that pain and so I try to sit very still, quite hard to take deep breaths as that sets it off too. Moving from sitting to standing can bring it on too, so my mobility is a bit more limited, but I am trying to walk an bit and move when I can because that’s really important for circulation. Getting comfy in bed is a challenge - you’d think that it would be better to lie on the left side, but that’s excruciating. Lying on my right is actually easier and once I get to an ok position, with help of DH, I try not to move. Not ideal, but I do manage to get a few hours sweaty sleep.
My scan is at 3pm and I’m so glad it’s happening but worried about lying flat for the 45 mins it takes and having to take deep breaths. It’s not the claustrophobia, that’s the least of my worries, it’s that I’m really sore lying flat and breathing deeply. My nurse called this morning and said to take 2 paracetamols and a codeine an hour before the scan, so I’m going to do that. Never had so many pills before in my life - my former self would be appalled, but needs must.
DS was upset last night that I was in so much pain, I’m trying to hide it but it’s sometimes impossible if I get one of the gripping ones. He gave me a cuddle and told me to be strong, that we will get through this together and we will beat it. Brought me to absolute tears. He doesn’t deserve to see his mum like this, it must be so scary for him. His last exam is on Thursday, he’s been revising hard all weekend and today he’s gone out with his girlfriend into town for lunch which I’m glad about.
Thankfully I don’t have to fast for the scan, I’m really trying to eat and keep my weight. Going to have some lunch now and then get organised to go to hospital.