I have now been residing in my lovely housewithrosesinthefrontgardenandeverything for 5 consecutive days. A of course was being an absolute star, he took Monday and Tuesday off to help me get settled in properly and it’s been a fantastic few days; being thoroughly looked after, lots of gorgeous home cooked food, and sleeping in the comfort of my own home. Some things of course are a little strange and taking some getting used to. It is very hard to explain, everything feels so fast, as if I am on the tube with things whizzing by, or in a swimming pool with my head underwater and I can just hear loads of jumbled noise. I suppose it is simply an overload on my completely senses which for quite a while now have been completely under-stimulated by the same quiet environment, where everything from the temperature to the colours within are moderated. We went for a little drive on Monday, to get out of the house, and it was just so nice to be immersed back in human life. I sat back and looked out the window, rapidly exposed snippets of hundreds of different lives as people walked along the roadside going about their daily business; people shopping, people on mobile phones, people reprimanding their children for running ahead too far, people walking along dog trotting nicely beside them, gossiping on their mobile in the other hand…yes I am sounding like something out of an overly flowery novel but the point being all these things are lacking in hospital which makes me all the more appreciative of them when I come out.
I am truly loving being home, I really am, but what a huge torrent of emotions it brings with it, feels like I am standing blissfully happy on a beach but huge crashing waves keep knocking me over. Yesterday for example I really struggled. Plus I did that typical thing which people who are feeling down so often do – I felt down about feeling down, as I felt that I shouldn’t be feeling down because I should be feeling happy. This of course made me feel even more down, till it got so silly that it prompted me to smile. So yesterday I was panicking that I was feeling down and shouldn’t do, and of course today I am feeling that little bit more assured and “normal” which just goes to show don’t panic about these things as the likelihood is tomorrow will be so much brighter; it’s just a natural case of readjusting and getting my head round being out.
There are quite a few things which are a bit of a shock to the system, predominantly that I have the stamina of a shrew (actually shrews are quite hardy in comparison to current self, cant think of a good comparison at present). Having been so very ill, to the point at where eating a mouthful of something needed a long sleep to recuperate, I felt that I had come on leaps and bounds and recovered beautifully. Which of course I had, what I had forgotten was my old level prior to naughtylungcollapsingness was miles above where I am at present, and I have been sharply reminded of such since returning home. However I will adjust to this new slightly lower threshold; my body will get used to it and I'm sure I will hardly notice it after a while.
I have bitten the bullet (can you say that?) and on advice from my hospital got some home help. This is somewhat difficult for a young 22 year old - who feels like she could leap up off the sofa and start dancing around to Fame at any given moment - to get their head round. Home help is something you envisage needing when you are 80, not when your peers are either still studying or just beginning their careers. In fact I will admit it is even slightly embarrassing just typing this, and I don’t even know why. Must be a pride thing, no one wants to be dependant, particularly not at this age, but that is one of the reasons I am posting this, so people (particularly fellow pwcf) can see that sometimes in life it is just a case of swallowing your pride and asking for help…and yes I find doing that as hard as the next person. This morning a nice lady from the home help company turned up, and she really was very nice. She was professional and my feeling of utter stupidity because I am aware of how well I look and how young I am quickly evaporated. She was determined to let me take the lead and to do things to help rather than hinder, which meant even though social service form states that I am to be helped with washing and dressing (not general living needs or domestic chores, it’s a bureaucracy thing, I am not entitled to help with that as I live with someone…don’t get me started) she used her initiative and put a load of washing on whilst I was doing my first nebuliser. By the time she left I had nice clean hair, had breakfasted, washed, dressed and done my morning tablets and nebs, and miraculously did not feel the need to go back to bed to sleep, it was the most bizarre and fantastic feeling. I almost felt guilty as I had this energy left (not really used to that) which meant I could sit down and start tackling some areas of the campaign.
So am quite excited by the prospect of having some energy to be able to do some campaigning again – it is more vital than ever, not only for my sanity to keep my brain active, but vital in the literal sense. I waited 17 months for my first false alarm and am fairly certain that even with stubbornness factor accounted for my lungs will not tolerate the same length wait for a second one. I calculated the other day (whilst lying in bed trying to distract myself from focusing on my rapid and poundy heart rate) that I have been waiting for a transplant for over 13600 hours. I believe this counts as what my psychologist would call a distraction method, time to don my proud face methinks.
2 weeks ago