Thursday, August 01, 2013
First off I want to say thank you for the comments on my last post. The last admission was a scary one and I found myself pretty much having to vanish with all my energy into making each day last till the next one. Since my transplant, when I spent weeks learning to even sit up on my own and months redeveloping my muscles to walk and stand, I promised myself that I would never get to that point again. It was why, even when ventilated, I insisted on walking around my bed space with help) It was why I forced myself to get moving right after this big op. But as things dragged on, and days became harder, I found I needed my energy just to stay awake long enough to keep myself hydrated and the rest went on the complex task of breathing. I have lost a lot of muscle during this admission and as a result, things are very tiring now. I am building it back up, but it takes time.
and so, since getting home, I have done very little with my time. Not to mention, that I have hospital appointments nearly every day. And next week, comes the journey to Leeds again. Not that I am complaining. I will always stay under my orginal transplant team, as long as they have me. They know their stuff and I trust them.
But things have changed a lot. from new meds and injections, to just breathing. Right now, I have to give myself injections every day, which is no great hardship in the grand scheme of things. The more irritating thing, is that I have to have my tube restitched to my neck every few days. Not only does this equal pain each time it is done, I have to wait on my hospital ward for a doctor who feels confident enough, to be free to put the stitches back in. This often takes about 4 hours and I hate sitting in hospitals.
I am not complaining, Not really. Breathing is still pretty crappy, but I am back in, less than 2 weeks and so I refuse to complain too much as I am kinda enjoying the fredom. Not to mention there is tons I need to catch up on at home. Things my parents cant do. Anything to do with wiring, internet, printers, phones and tv ariels. I mean, my mum is 65, luckily still in remission, but has server arthritis and osteoporosis, yet, she is still up a ladder painting the kitchen celling. She shouldnt be doing that and I wish I could take over. But my lungs and throat wont take pain fumes and I cant bend my neck the right way. One day, I am going to be in a position to take care of both of my parents. I have to be. I am the only one who can. But whole other story for a whole other day.
No, what I want to get off my chest tonight, is a much more annoying and harder to fix problem. In the last few weeks, I have had what I would class as 3 bad flashbacks. Now thoughts kinda float into my mind frequently, and I have the whole exaggerated startle reflex. Nurses hate waking me up for medication and treatments, as I almost jump out the other side of the bed every time. But these flashbacks have been vivid ones. Not to the point where I cant tell the past from present, I dont think I will ever have them, I have played the past over far to much. But the kinda that I can see happening like a movie in front of my eyes. I can still see the present, but with the past overlaid on it. The kinda that plays over and over and I cant block it out no matter what I do. Music, films, closing my eyes, counting sheep, ignoring it, nothing stops them. Its tiring and leaves me wanting to scream. I often find myself literally shaking and very stressed, just trying to get through it.
I havnt had any as bad as this for about a 18 months. So to have 3 of them in recent weeks, is a little frustrating. I am hoping I wont get any more. I really dont want to slip back into old habbits, nor start dissociating again. I cant afford any more scars, wounds or infections. But I do find myself drawing away from people, preferring to spend time alone once again. So If you text me and I dont reply, its nothing personal, I have probably dumped my phone some place and have not yet had the desire to go find it. I am a typical introvert who was bought up to be polite and social, yet I slip back into old ways when stressed or energy levels are low.
Anyway, sleep calls so enough ramble.