Day +69: Toughest times I've had, and they're not over yet
1 minute read time.
FormerMember
The last few days the steroids have just been wrecking me, I've been trying to survive off a couple of hours sleep a night and it's just been turning my brain to jelly, which has been making me worry about absolutely everything. Eventually today it came to a head, I just started screaming and shouting, I couldn't calm myself down so we went straight to hospital and the Doctor's put me on some dopamine to keep things in perspective and keep me calm.
It was meant to help me sleep tonight and I've had a few hours but it's 3am now so I think they're going to have to up the dose tomorrow. It's hard to say what I'm worried about, pretty much everything, but if they keep the edge off with this valium, or dopamine or whatever they decide to give me I'm hoping it'l keep me going until the steroids come down and I can start sleeping properly again.
A big source of stress is the routine I have to keep every day:
7am to 8:30am - Hook myself up to a machine at home, using hyperdermic needles, saline solutions and have this anti-virus drug. It's called Ganciclovir and it's a twice a day thing so, 7am and 7pm.
8am - Have all my morning pills: intraconazole, steroids, cyclosporin, MMF, potassium, magnesium, penicilin v, septrin.
2pm - Afternoon pills: potassium, magnesium, omeperzole.
7pm to 8:30pm - Again hook myself up to the machine again.
It can only get better from here right :)
My family have been great, they're here 24/7, I just cant cook, or clean, or look after myself, everything I do is a massive amount of effort, just replying to text messages from friends or on facebook really taxes my brain after everything.
FormerMember
Hi Will, I absolutely am not surprised you had to let off steam! You have had so much happen and so much to take on board in the last few months and had to basically put your life and plans on hold. As you have said before, alot of it of it your managed on your own (and as I recall, because you did not want to ask for help or inconvenience people!!!) So, now you have come through the absolute worst, you have family and friends supporting you (which they want to do and were waiting for the nod!), you are taking steroids and getting better, albeit too slow for your liking, you can relax a little and hey presto let off steam!! All that pent up energy was wasted bubbling away, so hopefully now that has gone you can concentrate on the final steps to recovery. I can absolutely guarantee you 100% your brain is not jellied, the hospital would not let you loose with needles, fluids and drugs if you were 'zombified'!! You also wrote a perfectly reasonable and logical blog :-)
I agree routines can be dull, tedious and mind blowing, but can be necessary. In your case of course it is stressful, it is a constant reminder throughout the day, every day, every week that you are still not 100% fit and are not yet independant either of people of drugs, hospitals or doctors. Taking medication as prescribed is so important, as you know, so actually hats off to you for having a routine and adhering to it. It will reap benefits, and you will never have any regrets.
Make the most of having your family and friends around, they are so precious. Show them your blogs, or cut and paste onto facebook. It is a good way to keep in touch and one message hits all - so you can minimise effort but still stay in touch and folk will understand.
