Monday, December 21, 2009
I went to an Optometrist today to see if I could get some answers as to why my eyesight felt all crazy. By some extremely lucky coincidence he had had a patient with Hydrocephalus before. He started off by telling me a big long story about some issues he'd had with treating her vision problems. We went through the usual tests, which were all fine, then he through in another test and, well hey, Houston we have a problem.
Turns out I have EXACTLY the same problem she had. He likened it to being vertically cross-eyed, as in my eyes aren't working together properly. It explains the strange visual issues, the unsteadiness, and even the neck issues. He guessed that I might be having a tendency to tilt my head to the right, and guess what? I am! Apparently that's an innate attempt to try to correct the eye problem, and it's causing my neck muscles to seize up.
Needless to say he's writing a letter to my GP, and I have an appointment with her tomorrow, and he's strongly recommending we get in touch with the Neurologist again. Of course now we're butting up against Christmas, so I may just have to deal for a couple of weeks. I have (don't laugh) a few tips, including covering one eye (and even a nifty wear-at-home children's eye patch) and he's bent my glasses to sit slightly crookedly.
It's nice to know that I'm not imagining things, but it's frustrating as all heck to have to deal with, especially when there is no quick solution. He can treat the eye problems with new lenses, but there's a bigger question as to whether I need more surgery.
So I'm not done with being a medical drama yet!
Saturday, December 19, 2009
Back at home today I'm feeling much better. We're planning Christmas and a huge calendar of weekends away over summer/autumn. It's good to be having something to look forward to!
Friday, December 18, 2009
Friday, December 11, 2009
I put in a full day of work on Wednesday. I had lots of meetings to resolve lots of thorny issues. That night I ended up back at hospital again. My balance is going on me and I feel like I'm about to have a vertigo attack - all - the - time. So yeah, it's a bit draining.
I had a referral from my GP so went straight through this time with no waiting around. I had a CAT scan and was told it was fine. Given the option of a hospital bed or my own, I went home again and dosed myself up with a sleeping pill to get some sleep. It's impossible to drop off when you feel like everything's in perpetual motion.
On Thursday morning I was back at the hospital, where they admitted me to a bed back in my old ward. The woman in the bed next to me was regularly having some kind of full volume screaming fit, which led to me fleeing to the hallway each time. The nurses took pity on me and I was offered a room of my own which, of course, I took.
I was too far down the queue to have an MRI on Thursday and elected to stay in rather than head home again. Another sleeping pill and some medication designed to help with the dizziness (which made me groggy more than anything else). It took a while to drop off but eventually I managed it.
I spent a lot of today just sitting around waiting. Finally I was able to have the MRI. If you can imagine how it might feel to be constantly dizzy, then to have your head shut into a small tube and stuck in a loud imaging machine for 20 minutes then you'll understand what an ordeal that was. I was quite panicky and shaky by the time they were finished.
The MRI was fine as well, so then I had to endure a lumbar puncture. The worst bit was the injecting of the anaesthetic into my back. Boy did it sting! The actually drawing of cerebrospinal fluid itself was fine. Now that the anaesthetic has worn off though I feel like someone's kicked me in the back.
Surprise, the lumbar puncture was fine as well. So here I am at home, waiting on a referral to see a Neurologist. It seems like every time I think I've hit rock bottom I slip a bit further. Honestly, at the moment I don't know how I'm not a quivering, crying wreck.
During this time Hamish has been working 11 hour days, so I haven't even seen him. He's tired and stressed and I'm mentally and physically exhausted. I need a hug badly. I want someone to tell me they know what's wrong and how to fix it. I want all this to be over.
I miss my life and I want it back!
Tuesday, December 08, 2009
Thankfully the doctor agreed with me. I got told not to worry about taking the sleeping pills. I could worry about getting off them when I was feeling better. He wrote to my neurosurgeon to ask him to look at my case again. He was wonderfully sympathetic. He even suggested anti-depressants to get me through this patch. He suggested I might have a cerebrospinal fluid leak, but also that I'm still getting used to having normal brain pressure. How long that might take to get over, well who knows?
So I snivelled a bit, felt grateful to him for letting me feel sorry for myself, accepted the prescription, and went home to hide. I even skipped the celebratory party I'd been invited to at work.
There's a part of me that wants to scream that this isn't fair. Two months ago I was feeling great and enjoying life, other than that niggling little headache that seemed to be getting worse. Of course life isn't fair. Some people have horrid things happen to them. Chances are I will eventually return to normal, pick up the pieces, rebuild my muscle and ditch the weight. If that happens I will really, truly, be grateful for every chance I have to don my running shoes or jump on Cleo for a spin around the Bays. Right now though I've lost perspective. I can't really see a way out of this.
So in the meantime I'm doing what I can. On Sunday that was a 4k walk/run round Belmont. I ran little bits, walked the big hill. Afterwards my left eye started to do something funny on me and I started to freak out. Thankfully after around ten minutes it came right again. For the rest of the day the pounding in my head was even worse. Having managed to get around five hours' sleep the night before without a sleeping pill, on Sunday night I was feeling too demoralised to try to sleep without the sedative.
Yesterday I decided to go for a walk. From Tawatawa Ridge at the Southern end of Kingston I dropped onto the City to Sea walkway in reverse. All was going well until the path turned into the steep descent of doom. With only loose dirt and gravel underfoot I slipped over three times, grazing and bruising my left hand. I battled anxiety and threatening vertigo the whole way down the slope.
Eventually, and with a huge sense of relief, I reached the Berhampore golfcourse. My relief was shortlived as the path I was following took me through the course itself. I ran the gauntlet of the many golfers out on what was a stunning evening. One young guy whistled, as if he were calling a dog. Not realising he was trying to call to me (he didn't appear about to swing a club any time soon) I kept walking, only to have him mutter something to his companion about someone (presumably me) being completely oblivious. In my already fragile state I was completely demoralised. If he'd just called out to me to ask me to wait a few seconds I would have done so.
All up I was out for an hour, and really it was good to be out in the fresh air. I discovered a whole network of trails I hadn't even realised existed, and some lovely old streets and houses. However it wasn't the same as going for a run. It also didn't relieve me of the need to take a sleeping pill that night.
So sorry, the pity party's still firmly in place here. I just have to accept my current state and try to have faith that things will improve. I still can't quite believe that this has happened, to be quite honest. I'm scared I'll never return to normal. I still want to be Pip. I don't want to be this strange shadow of myself. I need your cyber hugs and good wishes, and hopefully I will soon be able to be updating you with the news of my recovery.
Saturday, December 05, 2009
I could have run more but I wanted to start out with a Couch to 5K run just to make sure I wasn't going to do myself any damage. I was running so slowly that I never broke a sweat, despite it being really warm out there. My legs however - boy am I going to have to start hitting the lower body weights.
I still have the same issues with a tight, pulsing feeling in my neck and head and I've been letting the anxiety get the better of me. I'm still having the same problem with standing up or moving my head too quickly and I'm still taking sleeping pills. I hate having to do so but I need the sleep. However the more I get up and do the better I feel. Sitting around thinking too much makes things worse.
I have to hold onto the hope that I WILL get better. I'm seeing a physio, accupuncturist, massage therapist and cranial osteopath. However nothing much is happening at the moment because I'm so stressed I spasm up again as soon as I walk from the therapy room. I really just have to give myself permission to relax and to get better, but that's not as easy as it sounds!
Tomorrow I'm hoping to walk/run a 10k race in Belmont. Unfortunately it looks like the weather's going to turn bad before then. Today it feels like summer here for a change!
Monday, November 30, 2009
I actually had a great day yesterday. The weather was stunning and Hamish and I finally got the vege garden planted. Unfortunately I then spent the night tossing and turning in another bout of hellish insomnia. There can be nothing worse than lying there wanting to sleep and being absolutely exhausted but being unable to drop off. At 5.30 I finally gave up and formed a nest for myself on the sofa where I read until Hamish got up to go to work.
Unfortunately with all that tossing and turning I've spasmed up my neck muscles again, and I can quite categorically state that it is my neck which has been causing that pounding sensation at the base of my skull. I am really annoyed with myself, but I know that I can deal with it again and that massage will help. I did, however, beg my GP for some more sleeping pills. I am developing an absolute hatred of Valerian and I need a break for a night or two. A couple of stress free sleeps and I'll try sleeping sedative-free again.
Onwards and upwards I guess. I did at least get in around 40 minutes of walking between the hospital and the GP's office, exploring some new trails I didn't know existed. Now it's raining very softly in the most romantic kind of way. There is no wind out and the tui are singing loudly in the Norfolk pine. Now all I need is some sleep!
Saturday, November 28, 2009
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.
Wednesday, November 11, 2009
Tuesday, November 10, 2009
What I can tell you is that I've been tired - much more tired than I expected. Thankfully I haven't had too much disassociation. I guess the change in brain pressure from a ventriculostomy is more subtle than a shunt revision, and my brain didn't freak out too badly. However it has become clear to me that I really wasn't that with it before the actual operation. Hamish reminded me that I'd had a CAT scan and x-ray the night I was admitted to hospital (I could only remember the CAT scan). He also reminded me that he was there for both of them. I even had to ask whether he was there when the neurosurgeon was discussing whether to install another shunt, or whether to do the endoscopic procedure. I'm glad he was, as he's been able to reassure me that I went with the surgeon's preferred option. I'd started thinking that the surgeon actually wanted to put another shunt in, and that the ventriculostomy was something I'd pushed for.
I really wasn't myself for those first couple of days after the surgery. I felt overwhelmingly grateful to everyone who was so supportive to me, but I had to deal with a bit of guilt and dented pride, feeling like I'd become a bit of an overanxious, whining nuisance. Of course the nurses are used to dealing with far worse than me, but I wanted them to know that I'm normally a lot more rational. Stupid woman - you just had brain surgery. Of course you're allowed to lose a little perspective!
In the aftermath I've been dealing mainly with neck and shoulder issues, which were brought on by having to lie flat for two days and lifting my head off the pillow in an attempt to eat. I didn't have a headache as such, but my head felt really tight and standing up was causing my blood to pound in my head. In my more paranoid moments I was worried this meant there was still something wrong, and that the operation had somehow been a failure. I spent too much time reading up on ventriculostomy failure rates and ended up having to tear myself away. It was this tightness, as much as the actual surgery, which was causing me to feel so worn out.
In my defence, I didn't exactly take the weekend quietly. I got up on Saturday morning and went grocery shopping (one week post-procedure), and then Hamish and I went shopping for a new bathroom vanity and taps. I rested up that afternoon, but on Saturday night we walked down the hill to visit friends at their new house. I drank several glasses of wine then walked back up the hill again.
I'm finding that my sleep patterns are still a bit disturbed, and Saturday night was a good example. The tightness in my head bothered me to distraction. I couldn't relax and got maybe a couple of hours maximum. It took a big dose of Hydrocortisone and a long hot shower to get me moving the next morning.
On Sunday I drove Hamish to Paraparaumu for a glider flight. The weather was perfect and he escaped without air sickness, even flying the glider himself. He landed with a huge grin on his face and it was nice to do something for him after putting him through so much stress. Now both of us have expensive hobbies ...
We followed that up with lunch at a beachside cafe, then returned home where I felt unable to rest. Instead I headed out into the garden for an hour or so, and only after that did I allow myself to crash. Thankfully I did at least sleep well.
On Monday the weather changed and it was cold and wet as I made my way to my office for morning tea. My neck and shoulders were still bothering me, the tightness in my head in particular an issue. It was great to be back at work for a while but catching up with everyone was overwhelming. I had optimistically taken a gym bag with me in the hope of sitting on a stationary bike for a while. Instead I headed straight back home again. I put a DVD on and snuggled up under a duvet on the sofa, but fell asleep a few minutes in and woke as it was finishing.
It was only then that I think I really accepted recovery was going to take a little while. I fell asleep quite quickly last night but spent an hour or so in the middle of the night tossing and turning. I made an appointment with my physio as soon as her office opened. A few good cracks of my back later and some gentle kneading of my neck and I was feeling more human. It was becoming clear that the strange head sensations were indeed neck and shoulder tension and not a sign of anything more ominous.
I've taken it easy all afternoon. I have no plans for tomorrow, and although I've said I'll head into work for a few hours on Thursday if it feels too much I'll head home again. As much as it kills me I think any form of workout is going to have to wait till next week. This resting stuff is hard!
Thursday, November 05, 2009
After the horrid race I got a cold which knocked me out for another couple of weeks, during which time my back refused to settle. I got the physio's permission to try the next race on the Taupo lead-up schedule, a four-loop 100k'er in Waikanae which was mostly flat. In the end I made it round one loop, with the back injury taking all the power out of my legs. I didn't have it in me mentally to keep going as I watched pack after pack fly past me.
At the same time I was battling more hormonal issues. My doctor and I suspected I was going through premature menopause, so I came off the pill so we could really see what was going on. I'd been blaming the poor training and the roller coaster of emotions on that. However over the last month it felt more like depression. I couldn't run because of my back, I couldn't seem to cycle for peanuts, I lost my appetite so was eating crap in an attempt to just enjoy eating SOMETHING, and my swimming wasn't going to be ready for the Rotorua half Ironman. In fact, my bike form was so dire that I even doubted I'd be getting around the Taupo Cycle Challenge.
To make it worse I then started suffering from increasing migraines. I spent Labour weekend on the sofa with no energy to do anything, with my head pounding, kicking myself for not cleaning our untidy house or running or cycling. Jo and I had been planning a Rimutaka incline run but I was in no state, and the Gearshifters had headed out to Paekak hill without me after I failed to keep up with even the slowest riders (having the day before finished second to last in the time trial).
I battled my way through work this week but by Wednesday night it was fairly clear there was something more ominous going on. I wanted to get through Thursday before heading off to hospital. I had to sit in on two interview panels and the Immigration Bill was due to go through its third reading. I didn't want to miss the event I'd been working towards for nearly four years, and I didn't want to miss celebratory drinks! I somehow made it through the interviews but twenty minutes into the third reading my workmates were bundling me into a cab and I was off to the A & E. Six hours in the waiting room in horrendous pain (nearly crying each time they called out someone else's name), then six hours out the back, where I at least had a cubicle for most of it, I finally made it onto a ward at 3am.
By way of explanation, on top of my four autoimmune disorders (Addison's Disease, Hypothyroidism, Pernicious Anaemia and Premature Ovarian Failure) I also have Hydrocephalus, or water on the brain. I was diagnosed at six months, had a shunt inserted to drain the cerebrospinal fluid, and managed to live a fairly normal life after that. I've been lucky in that the shunt remained unblocked for nearly 15 years. However it seemed my luck was finally over. The increasing buildup of cerebrospinal fluid in my head was causing a rise in intracranial pressure, horrific headaches and nausea. I was not in a good way!
I spent the next day waiting for surgery that never came, on nil-by-mouth and a drip, and then most of the next day as well. By the end of the next day the intracranial pressure had increased to the point where I was sleeping most of the time anyway. Finally I had the operation. I thought I'd just be getting the shunt repaired, but the surgeon recommended an endoscopic third ventriculostomy (slight crustiness warning). This meant that they drilled a hole in my skull and inserted a probe through my brain and actually made a hole in the wall of one of my ventricles to enable the fluid to drain away more naturally. The video I've linked to above shows the probe being inserted into a guy's skull and the hole being made in the ventrical. It explains the procedure quite well.
Because they'd actually made a hole in my brain I had to spent another couple of days completely flat. It wasn't a particularly pleasant time. The change in brain pressure caused the poor organ to freak out a bit so that I apparently didn't always make a lot of sense, and I had a reaction to the Tramadol I was on. I had some extremely unpleasant auditory hallucinations. It sounded for all the world like there were flies buzzing around in my head. Plus I was on such a high dose of my cortisol medication post-surgery that I was completely unable to sleep.
Thankfully my cortisol medication was dropped just enough to finally enable me to get a little sleep. I also took myself off the Tramadol and the hallucinations gradually eased. To my surprise I was hauled off for another CT scan which showed the procedure seemed to be working and my ventricles were returning to a normal size. With no signs of any brain bleed I was slowly allowed up and, with the exception of a brief vertigo attack, I was able to convince the physio and occupational therapist to let me go home. Question from the physio "So, what kind of activity do you usually do?" My response: "OK, really?" followed by a brief description. He decided I'd probably be fine after that! I mean I was at the gym doing shuttle runs and burpees the night before I was admitted to hospital FFS! And yes, hello stupid!
So now I'm home with seven clips in my skull and some reducing brain-pressure related disassociation. All things considered I'm feeling remarkably good. However obviously the Taupo Cycle Challenge is off, Rotorua is off. I'm feeling bad about being so hard on myself over the last few weeks when there was obviously something wrong. I don't know how many months my shunt's been blocked, as the pressure builds up gradually so it could have been affecting my training for some time. All I know is that it's good to know I came second to last in our time trial for a reason!
My plans now ... well, I don't think I should really have any because I have no idea how long I'm going to take to return to normal. I just wish I could have the very cute hospital physio as my very own to develop my comeback plan! I think I should probably just take the next couple of months to get better and enjoy myself and slowly rebuild the muscle I lost lying around in bed not eating. Sigh!
I'm feeling so much better that I'm contemplating a little time on a stationary bike next week, and then some walking with a little running thrown in after that. I'll get a PT to throw a rehab weights programme together for me so that I don't completely lose my muscle. Once the wound in my head heals I'll be back in the pool a fair bit I think.
So, well, that's my life! How's everyone else?! Mike - planning to travel to Welly for that U2 concert? :)
Now that I'm back you'll probably be getting reasonably regular updates on my rehab. I have a new pink pair of MiAdidas and a cute pink and grey 2XU set of trishorts and singlets to try out, so you can bet I'll be wanting to get some use from them!
Friday, August 14, 2009
when our eyes were averted,
too busy looking inwards
to notice the attack from outside.
They took us on the beaches
first of all, our defences weak,
their firepower stronger.
While we were still dusting the
sand from our arms and gathering
together the possessions we had
clutched to ourselves as we
scrambled to retreat they
turned on our utilities.
Before we knew it our
water and our power
were no longer our own,
left begging at the
doors of strangers to
cook our last suppers,
scraping together cash
to pay for enough light
to see as we tucked our
children into their beds.
But it will all be ok, they
crooned to us, as we lined up
to fill buckets so we could
heat water for our weekly baths.
You see, things are more efficient
this way. Your dollars
are still your own.
So we sat on cliff tops
looking down at the waves below
us while we sipped on Pepsi and
Bud, unable to afford to drink
what used to flow freely from
our taps. We kept bees for
the wax and felled trees from
the local reserve
That which was what ours
was not truly quantified
until it was listed on the
asset sheets of those that
Thursday, August 13, 2009
Friday, August 07, 2009
When the cancer
spread to his brain he
began seeing five cent
coins on the floor.
My uncle spent hours
on all fours groping around
for the invisible currency,
keeping him happy.
After he died the same
in the corners of
our bedrooms and
sat gleaming on
our desks, shelves and
gleaming in the
twilight, winking up
at us from the floor.