And no, this is not how recovery was supposed to go

In the post I wanted to write I would be telling you all about how I was running again, and cycling again, and had spent heaps of time in the pool. I would be describing the weights workouts which were restoring my lost muscle and how I'd been getting heaps of stuff done around the house with a slightly lighter exercise schedule.

Well, that's not quite what has happened. I've been to the gym once. I sat on an exercise bike for half an hour, wound up feeling like I was about to have a vertigo attack, got off and went home. I went for a lovely long walk around the Karori Wildlife Sanctuary with Jo, walked home from the hospital earlier this week (around half an hour), walked into town once (around an hour), and walked around the block a couple of nights back (again, around a half an hour).

I haven't even been able to return to work full time. I've managed a few full days, had a few days off, and worked a few reduced days. I haven't taken back my team manager role officially yet, and probably won't now till next year.

I hate this. I feel like I'm letting my office down. I feel like I'm letting everyone else down as well. I want to be the mad, hardcore, bouncing back quickly person everyone thinks I am. I hate worrying the people who care for me. I want to be the active, positive and happy person they are used to me being. This is, I know, very silly, but it doesn't stop me thinking that way.

All my life I've had periods of time where my body has done things which have thrown me into a spin. Some of those incidents have been triggered by earlier neurosurgeries. There were the two months spent trying to find the Addison's Disease diagnosis. There was the horrific viral illness I came down with after my Masters degree that led to a year or so of depression, panic attacks and weight gain. During each of those times I wondered whether I'd ever feel normal again. However I've been so well for the last few years that I guess I'd come to believe it couldn't happen again.

Instead I'm left with some kind of weird post-surgery thing that has left me feeling trapped in my head. It got so bad I went back to the A & E on Monday. At least this time I only spent three hours in the waiting area, and another three hours out the back. I had a CAT scan, was told it looked fine, and was sent home. The neurosurgical registrar couldn't really offer much advice, other than to suggest that my brain might still be trying to get used to normal pressure.

It's been a month since surgery and I don't in any way feel normal. I still experience a pounding sensation like blood rushing to my head when I stand up or move in a way that increases the pressure in my skull. I still often feel like I'm about to have a vertigo attack at any moment. At times I feel like I have a thousand little electric shocks going off in my skull. There's a strange kind of pressure sensation - not pain, just like my head is being squeezed. It centres mainly around the base of my skull, but can move elsewhere at times. I can't get away from it and it's extremely hard to relax. It has at times driven me to distraction and to tears. I've once or twice caught myself on the verge of a panic attack, but have so far always managed to get my breathing under control.

I've done what I can to rule out contributing factors. I had huge issues with my neck after the hospital bed rest so have been getting massages, physio and accupuncture. They've helped to some extent. On Thursday I went to see a cranial osteopath, which did help calm me, but didn't really help resolve my symptoms.

I've had big issues with sleep. I ended up getting some sleeping pills and then, when they ran out, trying Valerian. The first night without sleeping pills left me staring at the ceiling for most of the night, however sheer exhaustion led to me sleeping solidly for ten wonderful hours last night. Bliss!

I have no appetite so have been eating utter rubbish just to eat something. Eating also distracts me from the unpleasantness, so I've been eating even when not hungry. Of course that's leading to a little weight gain, which isn't helping with the general stress or with my sense of needing to live up to people's expectations. I also worry about how much harder it will be to get myself back into form once (hopefully) this is all resolved.

I have another hospital appointment on Monday and will be pushing harder for some reassurance. The problem is that there really won't be any. It seems likely that the issues I'm facing are indeed due to the change in cerebrospinal flow. However I doubt anyone will able to give me any advice as to how long I can expect to feel this way. I am again left afraid that I will never feel normal again. I realise it's a bit soon to be pushing the panic button, but it is what it is! There's another part of me which dreads having to be operated on again, with the resultant sleepless nights jacked up on Solu Cortef and the discomfort.

It's not all bad news. My sense of humour is still holding in there and I haven't completely lost the plot. In my more rational moments I know this can't last forever and that there will be an answer. I will never again take feeling normal for granted, and I'm sure that I will appreciate running and cycling and all that so much more when I can do it again. A big part of the challenge is simply finding ways to distract myself so as to not let it all get on top of me, and thankfully I have some well-honed coping strategies which I'm having to dust off and put in place again.

Oh, and there are the cats, and there's Hamish, and there's my great friends, who are all helping. It's been hard reading all the Thanksgiving blogs when I feel so rotten, but I am grateful to you all.