Now when you have infliximab two nurses have to be present as they read out the medication you are having so they say your name, followed by the drug and then I guess the serial number or something on the box. Most people were having 2 to 4 bottles of infliximab infused. But when they came to read out mine, there were 18!! Even though they have said I was on a high dose from the start and then a really high dose when they doubled that, before doubling it a second time, I don't think I fully realised how high until that moment as I sat there cringing at every new bottle they read out. And saw more and more heads turning in my direction. My fellow Crohnnies, shocked by the seemingly never ending number of bottles, about to be pumped into my veins.
Dan try's to make light of it, and says that I am winning the Chemo top trumps, but it doesn't feel like the sort of thing you want to win at.
Oh and how rough did I look after! I was so tired and my brain was like mush, it just didn't want to function and both Dan and Sam kept telling me to speak up, even though I didn't realise I was speaking that quietly.
And then what felt like the walk of shame, and with a bloody audience too. My weak kneed wobbly shuffle between car and house, clinging to a zimmer frame, desperate to get out of sight as quickly as possible, while across the street, our neighbours watched on, along with a pack of window fitters, there to replace their windows and god knows what else. I was mortified. And in my rush to get out of sight, I forget the simple instructions on the use of said zimmer frame. And instead of moving the frame, getting it set steady on the floor and taking my step, I tried to move the frame and step at the same time, which meant the frame wasn't doing much to steady me, and I was making things harder, instead of easier, but I just couldn't think what I was doing wrong, why it wasn't working, why I was finding it so hard, all I could think was I need to get in that door and out of sight as quickly as possible.
Things didn't get any better once I got inside and tried to make my way to the toilet either. I just seemed stuck in panic mode, and I was burning out fast. By some miracle I made it to the bathroom adn then to the living room, but I was done in.
It's stupid, I know, to feel ashamed of something you have no control over, but I do! I hate that this drug can make me so weak and wobbly and that I need to use a walking frame to get around after having an infusion, but I do.
Thankfully, I did eventually remember how to use the frame properly and once I did it did help, but I won't lie, I was relieved when by the next day I was feeling steady enough on my feet to ditch it.
And that is the plus point in all of this, the more of these infusions I have the quicker I seem to recover. Although whether it is actually working now, this higher dose, I don't know and won't know until my course of steroids comes to and end.
Tomorrow, I get the joy of a pip assessment, I hate pip assessments, I wish they would go back to the old system, but it is what it is.
Most of the week again has been spent minecrafting. We've build some interesting little mushroom houses, and some fantasy style treehouses. And Dan has just started working on the chateau from escape to the chateau, we love that program. Do you watch it? With Dick and Angel.
I changed my profile picture on a lot of my different sites too. To one of my wearing my new wig, I think it actually looks quite nice now. What do you think?
And I have been trying to think what I can do for Crohn's and colitis awareness week, which I believe is the first week of December but I am drawing a blank!
Kye is still being difficult on and off at the moment, I've been trying to get him doing his schoolwork again to try and bring a bit of structure back to him days, but it can be a bit hit and miss. And I've been letting him spend more time on minecraft than I probably should, simply because it's easier, because he tends to behave when he gets to be on there. And with all that's been going on especially these agonising stress migraines I keep getting, I'm way to keen for anything that means I get a peaceful life.
Well that's pretty much it for now. All that remains is to ask, how are you coping with lockdown? What do you think of this new tier system, and do you have any nice plans, for the end of lockdown?
love and hugs all
Joss xx
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