I'm a bit stuck for what to write today but felt I needed to unload some of my overcrowded mind. I don't know what to write because, although it sounds weird, I don't know how I'm feeling. It's not as clear as being happy or sad or angry, I'm not ill, but I feel.....not right.
Physically I don't feel ill, temperature has been checked, oxygen levels too, I'm not coughing more or doing anything different to normal which would be a cause for concern, I've had 2 blood tests in the last two weeks and my infection levels are fine. I think the best words to describe how I feel is run down, my energy levels are rock bottom and it's a real struggle to find that "get up and go". By the time I've got washed and dressed in the morning I'm worn out and it just gets worse during the day. I tried to get myself sorted out one rare morning when mum had to go out, thinking "well I can run myself a bath thats no too draining, is it?" Turns out yes it is too draining, by the time I'd run the bath, got in, got out, got dry, got dressed I was literally retching because i was so breathless. It was exhausting physically but also a hard knock mentally too, sometimes i kid myself that I choose to not push myself too hard because its simply not worth the pay back healthwise but the reality is I actually can't do these things without help anymore.
Aside from that I just seem very lethagic, achey and generally run down. Like I say definately not ill, I wouldnt even say sickening for something just feeling like my reserves of energy aren't there. Since HArefield I've been pretty worn out and just doesn't seem to have got much better.My skin is rough and dry no matter how much I drink/moisturise/exfoliate. The last few days I've had times when my stomach went into meltdown with cramps, bloating, aches and bowel problems (lovely!). I've also had times when my breathing has been a real effort. Not constantly but enough to wear me down. No matter how much I rest it makes no difference and decent sleep is also very hit and miss.
It's kept me on my toes mentally and emotionally too. Being so worn out make me emotional and weepy because I don't know what to do to help myself. I am someone who needs to try and "fix" problems and know that I'm doing all i can to help myself but at the moment its like everything I do goes into the big black void. I'm on everything I can be on to keep those pesky airways open and yet they still seem shut most of the time.
My brain feels like its been blitzed at present. I think I was more stressed than I realised about the Harefield visit and since then have been panicking at silly things. Everytime my mobile rings I literally freeze. You've heard the saying "your blood runs cold" thats the best way to describe it, my heart beats fast and my breathing just goes. Its insane and irrational as my life depends on the mobile phone ringing!!Since Harefield I had a slight worry about one of my blood tests (all fine now) but that completely panicked me too, wondering what would need to be done. I definately have my panick mode when the hospital ring, its pure fear about them saying something is wrong that needs addressing. I am in no position to "think about" treatment, they say this needs doing an I have to say when are we doing it then. Its quite a lot of pressure.
Added to that are uni work which is difficult to fit in with how im feeling and also pretty stressful, Christmas presents which have to be bought online mostly as shops are a nightmare near Xmas and the wheelchair doesn't stand a chance. Everyone I know has colds and there are loads of bugs going round so again I am constantly worried in public places when theres coughing and sneezing going on so I'm trying to avoid crowds. It may seem extreme to some people but I've waited 3 years for this transplant there is no way I am getting a call and being sick with a cold so it can't go ahead. It means sacrificing going out but I will just have to play it by ear and do what I'm comfortable with.
I often feel like life at the moment is a very precarious balancing game, a tiny touch and things yo yo out of control. It's a very delicate buisness and getting one thing feeling better puts something else out of balance. You're constantly having to tweak things to try and keep everything from going awry.
So, my scrambled brain and I are going to leave you now. Heres hoping that things straighten out a bit soon and I can report better things next time. :)