Cathartic

Apologies to those readers who will be upset/annoyed at this blog post but I am so pent up with emotion at the moment I have got to let it out somehow. I am so unhappy right now I can't even find the words to tell you, nothing has "happened" as such its just a culmination of every single thing making an overflowing load that is just too much to bear.
Life is so unbelievably hard everyday and I just don't know how much more I can take of it. I hate myself for even admitting that fact. My body is failing me, breaking down in ways I didn't know were possible and reminding at every point possible that its doing so. I mind my diet all day every day to manage my diabetes, my back and joints and tummy ache often in synch with each other, I don't sleep properly and often have nightmares, I'm nauseous and sick each day, I am exhausted and breathless from the minute I wake up till the minute I lay down, treatment is taking over my entire life and thats the tip of the ice burg. The wedding was a treat, I hardly manage any special occassions, outings etc anymore and when I do I whacked for days after and have to suffer for it. I see events like Christmas and birthdays and they seem so far away. I convince myself that I will have had my transplant by then and will be able to join in properly but then they come and go and I'm still stuck in this limbo.
Nothing seems to be going right at the moment, even silly things like buying new furniture or disputes with my uni over something I'm unhappy with are not straight forward and although they are little things they become huge when your life is as small as mine. I feel like I am being blocked at every turn I take, the changes I am so desperate for to make me feel as though I am on the right track just in one insignificant area of my life over which I have no control. I am asking for help, from GP's, doctors, evryone around me, it's not their fault that they don't have the drugs, lungs, answers I need to make things just that bit easier.
I am trying so hard to feel better, to keep fighting but I don't know how to put one foot in front of another right now. Its as though everything is willing me to give up, as though they know I'm not supposed to still be here. I won't give up I haven't reached that stage yet but I can't keep this up without some change. "Helpful people" tell me I have to try harder and that things "don't matter/will be sorted out" but they dip in and out of my life knowing certain details and not the whole picture. They go back to their own lives. I feel really alone at the moment, no offence to anyone but its like they are a million miles from where I am now. The internet is my life line but also a curse, it keeps me in touch with others but also exposes me to people doing all the things I dream of while I can only watch with jealousy from the side lines.
A wise friend said to me recently that serious illness inevitably has an effect on confidence and self esteem, it's certainly true in my case. I have no confidence in myself now and my esteem is at rock bottom. I feel that somewhere along the way I've lost myself, I never really had chance to find out who "me" is, for as long as I can remember I've had to make huge sacrafices for my health. I never feel happy with my appearance because I go for comfort, and never have the energy to be able to try things on properly. I don't like the person I've become always moaning, wrapped up in my health and putting a downer on everyone around me, I hate that person but can't pretend that things don't matter when they do so badly. Friends will tell you that I've been quiet lately and its because I don't feel like talking, bringing others down or putting on a smile and pretending all is fine. It sounds dramatic but I don't know why anyone would want to be frinds with me right now as I have no people skills or anything of interest to say.
I'm sorry for such an out pouring of negativity on here. I needed to get it out somewhere and unfortunately you got lucky! Rest assured I am ok (I know, I know obviously not OK) but I will get back to more solid ground at some point hopefully soon. My life is a gift and whever I have a negative thought I DO remember that, even though it doesnt seem like that.
xx

Pain in the ..........

Last time we spoke I told you I was determined to go to a wedding I had coming up. It was my cousin's wedding and despite the heat I really wanted to go. The day before the big day was absolutely boiling and muggy which doesn't help with breathing. If you had asked me that day if I would get to the wedding I would have said no way. I had the worst day breathing in ages, heart beat runing high, very breathless, feeling exhausted without doing anything, very shakey and I honestly didnt know how I was going to manage to get dressed the next day let alone go to a wedding. Mum and I decided to take things slowly (I could tell she was worried about me) starting with getting physio done, if I managed that then I would get dressed, if I was still ok then get downstairs etc, in other words very small steps. We made arrangements for my sister to take me in her car as it had great air conditioning to keep me really cool and I gave myself loads of time to get ready. I had treated myself to some new shoes which I must say were the most pretty, sparkly shoes I have ever seen and were another factor in me wanting to take them out for their first adventure!

So after a lot of help, breathing drugs and pain killers I was ready to go. I was so pleased to be able to join in with something for a change and had a really lovely day. Everyone looked beautiful particularly the bride and although I found the day very draining it was worth it to be there. I managed to stay until after the speeches were read before finally admitting defeat and heading home for a well deserved rest and several days of taking it easy.

Me and Mum (shoes dont look in any way as nice as they do in real life)

I've been getting a lot of pains recently which has really been getting me down. Lots of back aches mainly but my body also likes to mix it up with a dull ache in my chest, sciatica and general aches and pains in my legs. So the last few weeks I've been having to take pain relief more than I'd like (try to avoid it where possible) which is tricky in itself. For a start although the pain is obviously uncomfortable its not agonising pain or anything, so in a perfect world I would imagine minimal pain relief would be needed. However this is me we're talking about. No matter what I take it doesn't seem to be taking the pain off completely, so now I'm still kind of in pain but twitching from my TENS machine, frustrated that seemingly small amount of pain is so hard to get rid of, not wanting to go anywhere as I'm never as comfy as when I'm at home and dealing with the nasty side effects of pain killers such as tummy probs and weakness, dizziness and generally feeling "out of it". After lots of experimentation with various doses of paracetamol, codeine, co-codamol, and migralieve (I can't take Ibruprofen based drugs) I seem to have found what works best of a bad bunch and my pains have also been a weeeny bit better.

I'm also trying to keep up an exercise regieme (stop sniggering at the back). For anyone who knows me in any depth, Tor and exercise are rarely seen together in the same sentance. It is something I truly hate to do firstly because I just hate doing it, second I'm no good at doing it, third, I get out of breath, sick, achey even more than usual while doing it and fourth the injustice, surely you would think the one perk of being someone who is so ill would be not having to do exercise? Sadly you would be wrong. So after being told I really do need to do more and going through several completely unmanagable exercise regiemes i have settled on something that is better than nothing and doesn't leave me worse than when I started. It's a real effort physically and time wise too do it but apparently it does make a huge difference to post transplant recovery so I'm doing my best. Lots of work with my hand and ankle weights as well as other bits and pieces to build strength etc. Hoping I can keep it up!