Saturday, 26 November 2011

A Plateau

I seem to have reached a bit of a plateau in terms of my recovery and it's got me a little down this week. I look back to how I was feeling last Friday/Sat and I can't really see any difference. I am still on the same amount of painkillers (some days this week a few more), I am still mostly in my PJs and napping in the day, I am still sans make up, I can't go out, I can't drive etc etc. I am inherently inpatient and so I have clearly forgotten that I had brain surgery a mere 19 days ago! There have been a few improvements, so it's good to have this blog to reminnd myself!

Mon and Tues this week were awful days overall. I woke with very sick headaches both days and had to go back to bed after having been up only just long enough to eat some toast (wheat free of course) and take my painkillers. That said, I did have my first (non family) visitors this week and that was really nice.

On Monday, a close girl friend came over. On her arrival I felt absolutely awful and she had dropped her little one off at his grandparents as I couldn't face the noise and excitement of an 8 mth old. Gutted as I so wanted a cuddle - he is scrummy. So we only caught up for a short time. But she came bearing wonderful gifts - M&S Lemon, Ginger and Ginseng tea which is aptly called 'Revive' as that pepped me up a bit (in fact it's my new addiction, I'm sat here with a cup right now!), M&S Wheat Free cake - delicious and Gossip Girl on DVD (I've yet to watch any - I've saved the OH the pain, I'll start them next week when he's gone back to work as I think that's only fair. I have subject him to I'm a Celeb, TOWIE, Made in Chelsea, Don't Tell the Bride, even I feel a bit reality-TV'd out!)

Tues was much the same - sick headache, didn't get dressed til the afternoon - and when I say 'dressed' it's a minimal step up from PJs to be honest. I look like something out of Jeremy Kyle, minus the multiple tats and piercings. Apologies if that offends, I actually wanted a tattoo on my neck, under the hairline and the OH said he would divorce me if I did it! And he meant it. As it turns out I have my 5" scar there now so thank goodness I didn't get one! You got to take the positives where you can :-)

Weds, miraculously, I woke without a headache which so far has been the one and only day that this has happened. It was a good day. I saw another lovely friend and her gorgeous little boy (2yrs). They came bearing lovely gifts too - gossip mags, wheat free cake (yummy) and flowers. Her little one was so immaculately behaved. It was good timing as I would've been able to cope with any little one (as gorgeous as he is - did I mention he's gorgeous?) had it been Mon or Tues.

Thurs and Fri - the sickly headaches returned. Thurs I pretty much just laid in bed or on the sofa in front of more rubbish telly. As I mentioned, even I am getting the feeling of slightly overdosing on. I have 5 more weeks off work, I am not sure what I am going to do with myself once the TV stops entertaining me. That said, I am able to read a magazine / book now which I wasn't to start with.

Friday afternoon I managed the slow walk around the block that I'd been advised to do by the physios and thankfully although it was cold, it was really bright and sunny. I was feeling so sick that I thought actually the fresh air might help and it did a little bit. There we are, that's progress from last week!

Shortly after the walk, I had another short visit from another girlfriend and her bubba who is equally as gorgeous and was equally as quiet. More pressies (chocs, mags and a card) and hugs! I've felt very loved this week. It's been lovely to have so many friends coming over. And I have SO many cards - I am overwhelmed, especially in this technological age of email, FB and blogs! And don't even get me started on Royal Mail...

On Friday evening, the OH then took me to the Drs as I was nearly out of anti-sickness tablets. The Dr was really encouraging and was impressed with my scar and progress, which was reassuring. When we got home, I cooked a very quick and easy salmon stir fry. I was absolutely exhausted afterwards and my head was throbbing from looking down, even though it was a matter of 15 minutes. I am doing a little bit of physio each day, looking right/left/down and up, but the prolonged looking down is not something I am used to.

So actually yesterday was a busy day, all in all. I think I probably overdid it, but I have read about some amazing people that have been through far worse than me and it's so often their attitude and approach to life that gets them through. When I was in hospital, some days all I could do was repeat meditations over and over in my head, with my eyes closed and laying down. I wasn't capable of anything else. I could hear my family talking around me, naturally really concerned about me and I so wanted to just say 'I'm OK, I'll be OK' but I just couldn't. That was awful. Everyone keeps saying 'You're doing so well' and I can't quite believe it myself. I'm almost waiting for something bad to happen, like an infection, Meningitis, numbness of the limbs or a CSF leak which are all possible side effects. The OH summed it up well - if it's going to happen, bring it on now, so I can deal with it and get over it. I guess I just feel so grateful that my recovery has so far been quite 'straightforward' that I can't quite believe it.

The sickness is pretty unpleasant and frustrating. But sometimes I have to just force myself out of bed because bizarrely although that's ALL I feel like doing, I have to try and get on with normal life and it usually helps to get up and get washed / go for a walk / do something normal. This morning I forced myself to sit up in bed and I started our Christmas shopping. We are now all done (online shopping is literally amazing) apart from our gifts to each other. Now I've finished my 'Revive' tea and had another anti-sickness, dare I say it but I think the nausea has passed. It's especially horrible nausea because normally if you had a bug, you would be sick and you'd feel some relief, but with this you don't want to be sick because then you'll have thrown up the pain relief and anti-sickness and you'll feel worse sickness AND you'll be in pain. Not to mention me freaking out about bursting my stitches (and now wound) if I'm sick. I have been reliably informed that that can't happen, but trust me, it doesn't help alleviate my fears.

The other thing I am really suffering with at the moment, is not being able to sleep. When I was in hospital I slept all the time, then when I first got home I would nap all through the day and still go to bed at 8pm and sleep through til 8am. Now, I go to bed at 10pm (ish) and I lay there for probably 3-4 hours, sleep til the early hours (usually needing painkillers), then I sleep in til 10am, when I wake in pain and find it hard to get up. The worst part is the 3-4 hours where I am awake. Every time I go to drift off, my tummy flips over (kind of like the feeling I used to get the morning after a night out - 'what have I done?' a lot to be ashamed of, 'who have I  upset?' everyone, 'Who have I phoned at 3am?' people you really shouldn't have) and I get this lurching feeling of
  • Oh God, I've had my brain cut open / I've got an implant in my brain
  • I have a really serious condition that potentially could effect my whole life
  • The nurses could've done me in while I was hooked up to the Morphine PCA
  • What if they hadn't diagnosed me and I ended up unable to walk?
  • What happens if I never get off these painkillers?
  • I've really frightened my whole family (and friends)
  • General guilt about what an awful wife my OH got and is he wishing he had never met me!?

Totally irrational and totally unexpected. I spent a long time worrying before the op and about my immediate recovery in hospital, but the recovery at home was always an unknown. I guess the other reason I can't seem to sleep is because I'm not actually doing a lot in the day. I know the answer is to go to bed at 10pm and force myself up at 8am or whatever, regardless of what time I managed to fall asleep, just to break the cycle. The OH is back to work next week and his alarm will be going off around 6am so I guess that will help.

So onto next week. It's all change! OH is back to work and my Mum is coming in in the mornings. I pretty much have visitors planned for the afternoons too, which is nice. I am much more capable than I thought I would be by this point i.e. I'm out of bed, but I can't manage on my own just yet. E.g. I can't make all my meals, I'm not allowed to wash alone, I can't always get dressed unaided, I need help with the stairs, I need help with my painkillers etc. I'm obviously not able to drive, so I need help to get shopping / misc stuff. So massively appreciate my Mum's help.

I've also decided to go in and visit my Mum's colleagues before the Christmas break. They've all been so lovely with cards and texts, asking my Mum everyday how I am etc.

Right, I'm off to have my bath. It's 2.15pm.

S x

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