So this is the first post in a while. I've just been ticking along, getting back to work and normal life. But I can't say that I am back to normal and it's only really dawning on me just how long that might take. I am feeling a bit down tonight actually. So I thought I'd get it all off my chest on here.
I cannot even comprehend that it's been 4 and a half months since my operation. It feels like it's been a long recovery to this point and I guess part of the reason is that I had a complication and so that extended the recovery period. I am used to doing everything at break neck speed and that included my expectations for recovery.
Each stage of recovery is challenging for different reasons. To begin with you're focussing on not being in pain, not throwing up, trying to hold a conversation, then walking, turning your head, washing yourself, eating etc. And slowly but surely returning to driving, going to the shops, getting back to work. And now I've entered this phase of recovery which seems to be characterised by frustration at my own limitations. The other thing that irritates me is that recovery teases you - you have a couple of days where you almost feel 100% again and you start planning... And then bang you're back down to 10% the next day.
On the whole I'm recovering well, but I've got two niggles. Firstly, I'm not as eloquent as I was, I'm not as capable or independant, I don't get stuff as quick, I seem to have forgotten some words / how to spell, I can't do a whole day in the office yet. But it's so subtle that I'm probably the only one who notices it and I know I am hard on myself. I probably used to work longer than I should anyway but I'm in a new team, I have a new manager - they don't know the conscientious Sarah, the one that takes massive pride in her job - they just see this woman struggling for words in meetings, looking a state because a) she's so tired or b) because she cannot fit into ANY of her clothes! And it's even more annoying because I know I'm not right but it probably sounds like rubbish to anyone that didn't know me before. I am feeling like there will come a point where people feel like I am 'milking it' or stringing it out. I promise I am not, I would give anything to be 100% - I am not someone that likes bunking off (anymore - I had my fill of that circa 1998). But at the same time I am still hugely grateful that I've reached this point, there was a time when not feeling sick felt like the biggest and most far fetched goal in the world!
More concerning is that I have been getting headaches. Slightly more than a niggle really. I was going to say 'I've been getting headaches again' but I didn't really get headaches before my op and these headaches are nothing like the agonising head pain I had in August. These headaches are probably down to CSF levels. But because they're not totally crippling I haven't really done anything about them. The benchmark has been set high! When I first had my shunt to treat the collection of CS on my brain, I felt amazing. Then when I started to go back to work I found that every time I extended my hours I'd get these headaches but they'd even out - I assumed the more I was on my feet, the more the CSF needed to adapt. But now I'm finding that I am getting headaches that get worse as the day goes on. Yesterday by 3pm I'd had enough and had to come home from work. Today I've been working from home so it was slightly easier. But I think they are low pressure headaches. Encouragingly I read that a low pressure headache pain is where all the CSF has been drained away so then the brain is being dragged downwards - that was cheerful. Anyway that is the reason that laying down helps. After 2 hours of being flat on my back yesterday I felt near on normal again. Today was a better day all round but standing to make dinner, the pain increased and I started to feel sick. I'm laying down typing this and the pain has subsided.
I wish there was a way to explain everything I've been through and why I struggle some days or not others, so that people who ask could understand. I think people expect other people to go into hospital for whatever it is and then when they come out they're fixed and if they're not, then they're moaners. I guess ultimately as long as those that matter understand then it doesn't really make a difference what anyone else thinks. And actually even when I was healthy and busting my balls at work, I would still mentally thrash myself that I could be working harder and longer. I have always been like that - got to be the best at whatever it is and if I'm not then it's not worth doing (and 99% of the time I'm nowhere near being the best at shuffling paperclips or whatever other ludicrous challenges I set myself). Hence my obssession with running. always got to be a bit better. Secretly I would love to be Paula Radcliffe but even then I doubt I'd be content. Note to self - must work on that.
Anyway it's not really the being in pain that I'm complaining about, it's the terrifying reality that something bad might be going on, like my fluid is at the wrong level again and I could end up in hospital again. But I am not even really complaining about that as I accepted ages ago that I will more than likely end up in hospital sooner or later with this issue. But it's the not knowing. How long do you leave it? I'm fed up of wondering if I'm OK or not. I've started to struggle to sleep again and I'm having non-related nightmares. I need to work on my acceptance around this area of my recovery as well as there isn't an answer or quick fix unfortunately.
I've just hit a wall of tiredness so I think it's time to watch Gypsy Weddings and head to bed. Perhaps tonight I will sleep, perhaps I just needed to be honest about how I'm feeling and give myself a break.
LOL
Sarah x
