What a year, as always... many people write something in your Christmas card along the lines of have a great 2000 and, the next year hoping to be better than the last. They used to, quite a few of my family and friends gave up saying anything like that a long time ago. I only got one 'let's hope 2016 is better than 2015' And I do I really do, it was a shocker of a year and at times one of my happiest.
But Christmas, again one that could be the last, my dad again. Spinal surgery, again, risk of... the usual and the high risk.
I've had one last Christmas in 1999 when I had my brain surgery booked for January 2000. The bringing in of the millennium was the grimmest I'd ever faced. My sister and I sat on the sofa in my mum and dad's front room and tried not to say the things we were thinking. I said after the successful surgery that I wouldn't do that again, last Christmases are rubbish, everyone tries too hard, they are tense and it just makes you sad. I wish I'd been there (at the meeting) to tell them that when they were given the possibility of an operation date of 23rd December, they went for 13th January.
This Christmas proved to be all of the parts I hoped it wouldn't be. Of course the bits I did want were there too - Initially I had that brilliant feeling of a proper pile of presents under the tree, I had two stockings! My absolute favourite bit. My daughter had a great time and I went to church and sang the descant to O Come all ye faithful. We ate too much food and I was recovered enough to drink and get a bit tipsy. But along with those bits, there was a huge amount of tension, short sharp responses, snapping and criticism galore. I was no longer the flavour of the month, I could do no right and my sister seemed to fluctuate between joy and irritation. There was of course moments of fun and joy, laughter but t didn't last long and when you can't even lay a table without getting something wrong the days are like walking on egg shells. Who'd have thought that less than two months ago I was a darling daughter, incapacitated and in fear of what miserable life might await me. My mother holding vigil at my bedside. Now I am the same old pain in the arse I was before.
My mother is always one for the drama and looks for the absolute worst possible outcome. It comes in handy sometimes, when I need to feel miserable, when I need a good cry. Why is this relevant? Well because now she doesn't know what the worst or best could possibly be, there are no good outcomes for my dad any more. The best is simply that things aren't more shit! And this is what partly made this last Christmas so miserable, so mixed so odd and so oddly familiar.
An account of my thoughts and feelings about having a genetic disease. Von Hippel Lindau disease, VHL. Not necessarily factual but real all the same.
Tuesday, December 29, 2015
Saturday, December 19, 2015
Counting blessings again
I'm crying, I feel very low and I have some minor silly things that are of little consequence running over and over in my mind. I can't shake it.;
My hormones are rather fucked I think, I'm tired and I feel lonely.
I was dreading a night out last night, with work friends because I didn't know what to expect, how I would feel and it was good in the end. And most of today I felt ok too but it's hard not being well.
My dad never complains, never, well not in my earshot. He doesn't moan and apparently neither do I. A few people have pointed this out to me recently, I do!
I've made steps, I've driven, been into work twice, travelled on a bus and had a drink of the alcoholic variety. Progress right? So suddenly I feel like shit and I went and sat in a dark room and cried and then found someone to hug and thought of the things I should be grateful for.
My daughter
My amazing friends
Having a family
My home
A secure job - even if I don't feel welcome - and why is that well I think my boss might be very good at drawing out my anxiety. You just don't always need to tell someone they are disliked, or not doing something 100% perfectly, because I'll admit it I'm playing at being ok, that awful phrase, fake it until you make it. I'm vulnerable and I'm trying to get back.
The CBT didn't work, there was nothing there I hadn't already thought of or tried but, as we now know, my brain wasn't right and I don't think my hormones were ok, I've certainly slept better since the tumour and cyst were removed.
I'm not officially back at work, right now, very unusually for me I never want to go back.Right now I want to curl up and stay away from almost everything and I know there are only a few things that have a chance of making me feel better, this is one of them, have a good cry and count my blessings
I'm not poor - in fact we are in a good financial position -
I don't live in a war zone or under a dictatorship
I don't feel like I did in November - but I'm terrified of something similar happening again.
I'm loved and valued by others
I'm not bad looking and I don't look all of my years, considering how physically and emotionally hard those have been that's good. I need to put on weight.
One of the toasts last night, said just the once but meant a lot to me was along the lines of, to me not being dead. And I'm not dead, possibly a little brain damaged, maybe permanently but not enough to stop me, not completely. A very good friend came to see me the other day and we talked, she let me talk lots and lots but it was so helpful to hear her tell me that getting on with my life was normal, right and ok. This is hard and right now, no matter how much I try I don't feel like I am coping. I'm not. Perhaps it's not even VHL, perhaps it's other things, things I also have no control over.
That bucket list might need a review - I need something to aim for and not just getting back to normal.
Perhaps what has brought all this on is the volume of TV I've been watching, the banality of human life and the averageness of life, I get excitement but does it have to be related to medical crisis and general - you can't have that.
My hormones are rather fucked I think, I'm tired and I feel lonely.
I was dreading a night out last night, with work friends because I didn't know what to expect, how I would feel and it was good in the end. And most of today I felt ok too but it's hard not being well.
My dad never complains, never, well not in my earshot. He doesn't moan and apparently neither do I. A few people have pointed this out to me recently, I do!
I've made steps, I've driven, been into work twice, travelled on a bus and had a drink of the alcoholic variety. Progress right? So suddenly I feel like shit and I went and sat in a dark room and cried and then found someone to hug and thought of the things I should be grateful for.
My daughter
My amazing friends
Having a family
My home
A secure job - even if I don't feel welcome - and why is that well I think my boss might be very good at drawing out my anxiety. You just don't always need to tell someone they are disliked, or not doing something 100% perfectly, because I'll admit it I'm playing at being ok, that awful phrase, fake it until you make it. I'm vulnerable and I'm trying to get back.
The CBT didn't work, there was nothing there I hadn't already thought of or tried but, as we now know, my brain wasn't right and I don't think my hormones were ok, I've certainly slept better since the tumour and cyst were removed.
I'm not officially back at work, right now, very unusually for me I never want to go back.Right now I want to curl up and stay away from almost everything and I know there are only a few things that have a chance of making me feel better, this is one of them, have a good cry and count my blessings
I'm not poor - in fact we are in a good financial position -
I don't live in a war zone or under a dictatorship
I don't feel like I did in November - but I'm terrified of something similar happening again.
I'm loved and valued by others
I'm not bad looking and I don't look all of my years, considering how physically and emotionally hard those have been that's good. I need to put on weight.
One of the toasts last night, said just the once but meant a lot to me was along the lines of, to me not being dead. And I'm not dead, possibly a little brain damaged, maybe permanently but not enough to stop me, not completely. A very good friend came to see me the other day and we talked, she let me talk lots and lots but it was so helpful to hear her tell me that getting on with my life was normal, right and ok. This is hard and right now, no matter how much I try I don't feel like I am coping. I'm not. Perhaps it's not even VHL, perhaps it's other things, things I also have no control over.
That bucket list might need a review - I need something to aim for and not just getting back to normal.
Perhaps what has brought all this on is the volume of TV I've been watching, the banality of human life and the averageness of life, I get excitement but does it have to be related to medical crisis and general - you can't have that.
Wednesday, December 16, 2015
Where am I now?
The recovery feels slow, still.
I thought I had a lot to say today but now I've started to write I've lost the inspiration.
maybe later.
I thought I had a lot to say today but now I've started to write I've lost the inspiration.
maybe later.
Saturday, December 05, 2015
A lot of time on my hands
I am looking forward to going back to work, 4 weeks since surgery and feels time to go back, I need to take my time as I know I want to rush back. I shouldn't.
I'm well enough to be quite bored until days like today and then it hurts.
But in more interesting news, it has occurred that while I'm satisfied with my lot, even content, happy and have a plan, my husband might not be and perhaps I need to consider that.
I don't want him to look back and regret his life, he doesn't seem happy to me, and it seems he wants to travel.
So we need to consider it.
I don't want to really, but it's not like it would ruin my life.
I'm not sure what we'll do, will the little one do it, want to do it?
I need to not be selfish, it will be a while to organise it. A bit of me thinks, maybe we might not all go!
I'm well enough to be quite bored until days like today and then it hurts.
But in more interesting news, it has occurred that while I'm satisfied with my lot, even content, happy and have a plan, my husband might not be and perhaps I need to consider that.
I don't want him to look back and regret his life, he doesn't seem happy to me, and it seems he wants to travel.
So we need to consider it.
I don't want to really, but it's not like it would ruin my life.
I'm not sure what we'll do, will the little one do it, want to do it?
I need to not be selfish, it will be a while to organise it. A bit of me thinks, maybe we might not all go!
Friday, December 04, 2015
Stiff neck
I look back a week and I know I must be getting better,
goals reached
goals reached
- toilet on my own
- dressed myself
- bath
- got out of hospital
- climbed the stairs
- ate food at a table
- proper shower
- emptied dishwasher
- walked my daughter to school
- cooked
- dropped fentinayl (don't know how to spell it)
- put Christmas tree up
next steps -
- shops
- drive car
- walk to school
- hair cut
- tidy house
- get off the drugs!
then - get back to work, begin to feel like I'm really me.
Tuesday, December 01, 2015
counting your blessings
I'm alive, a good place to start. I'm able to take and pick up my daughter from school. My work are being really supportive and I don't feel pressure to return too soon.
I am getting better, slowly...
My friends have proved to be wonderful, caring and positive and just amazing, I feel loved and valued by them,the real friends are there when you need them, the people in my life are good people.
I know myself in a way I didn't before which is actually a mixed blessing because I know some things I want but can't have. That's hurting.
I should remember that recovery takes longer than you think it should
I still feel quite sick.
My body isn't mine.
I can't process it all yet, I don't know who to talk to. I don't know who'll listen well, I am self indulgent at the best of times but I do need to talk this one through and I don't know who'll listen, well. Who the hell would want to? I feel changed and I don't know what the consequences of that are.
Who can I be honest with? Who can listen?
I am getting better, slowly...
My friends have proved to be wonderful, caring and positive and just amazing, I feel loved and valued by them,the real friends are there when you need them, the people in my life are good people.
I know myself in a way I didn't before which is actually a mixed blessing because I know some things I want but can't have. That's hurting.
I should remember that recovery takes longer than you think it should
I still feel quite sick.
My body isn't mine.
I can't process it all yet, I don't know who to talk to. I don't know who'll listen well, I am self indulgent at the best of times but I do need to talk this one through and I don't know who'll listen, well. Who the hell would want to? I feel changed and I don't know what the consequences of that are.
Who can I be honest with? Who can listen?