Anniversary

Happy Anniversary to me! it has been 2 months since i started ravings of the housebound and i hope that i can continue to make it interesting and informative and try and veer away from ranting and moaning too much, although that is bound to occur sometimes. more importantly, it has been 5 months since i first learnt that i had an AVM on my brain stem and since i quit smoking. and it has been a looong five months, but i don't wanna turn this post into a whine-fest. instead, i want to focus on the victories i have achieved, like quitting smoking, which is a HUGE victory for me, but i think i will leave that story for tomorrow.

Repetition

Again and again

well, i have had the week from hell. my body and brain feel just like they did 2 months ago. i am having at least one or two convulsions a day, trouble walking etc etc, and popping the dreaded xanax constantly. the Noise from our friendly, neighbourhood construction sites has become completely unbearable and colin and i had a huge fight on wednesday night, which left me feeling incredibly guilty for being sick, being a burden and also for being a bad sick person. i so wish i could be like those brave, positive cancer patients you see on TV who, i know, have it waaay worse than me. i mean i know that one day, eventually, i will get better, but i am not one of those strong, positive saints. i am a self-involved coward and cry-baby. so, wednesday night saw me in tears to my mother in south africa, over the phone, "i can't do this, i am going crazy, i am so depressed, i am so stressed". and actually just letting it all out to my mom and hearing her calming voice over the phone was really helpful and colin and i had a good heart-to-heart, again. we reaffirmed our love and commitment to each other and realised that colin needs a 'stress-outlet' and i need to be more considerate of his feelings, again ;-).

this was followed by last night, thursday night, spasms and freak-out by yours truly at 5 am. i think what upset me the most was that the horrible pain and crawling pressure in my brain from two months ago had come back, and that scared me. i couldn't/can't go through all of that again! i hit 'rock bottom' last night, again! i am just so tired of dealing with this. all of my new, positive mental commitments went out the window; the plan that i had for dealing with this thing, god i can't even remember what it was.

every time i think i have pulled myself together and figured out a way to tackle the upcoming year i get thrown a curveball. why won't my brain just fuckin' behave?!! why can't i be a better, stronger person? these are dangerous questions to start asking yourself; it means you have lost the hope and belief that you can survive the trial. i want to pretend that i am handling all these difficulties with dignity and bravery, i wish i could. but i have to be honest, sometimes when i am losing my mind, screaming, crying and kicking, giving up; i feel i can look down on myself from above, and i just shake my head in disappointment. disappointing others is bad enough, but disappointing yourself - that's tough to come back from.

but there are some developments. colin, my 'knight in shining armour' (seriously), took the day off work today and has been trying to keep me away from complete insanity (with the help of xanax), while also helping scream at the builders who were happily sawing metal pipes with an electric saw all day. i think i got them though when i leaned out, breasts and all, and told the cunts to shut the fuck up (sorry mommy ;-). the other bit of good news is that we found a new apartment (wednesday)! cheap, quiet, close to work, in the mountains, beautiful, perfect! but we have to wait two months to move in! i had originally thought it was only one month and was already planning on how to pack up my stuff when colin dropped the bombshell (thursday). two more months of hell!

so why should i be freaking out about it now? i have been dealing with the Noise for so long. but i think it was the promise of entering a heaven that then moved further away from me, coupled with my physical relapse, that sent me over the edge. that and the realisation that i won't be able to go back to work in august, probably not even september. i tried so hard to pretend that i wasn't really that sick that i even fooled myself. "silly rabbit".

Sex

people seem to be interested in colin and my sex life, so i thought i should include a post on the subject. the reason i haven't written about this before is that since the whole melodrama of my illness began, sex has been pretty far from my mind. most of the time i am feeling way too ill to even consider it and the few times colin and i have had sex (before i knew what was really wrong with me) i would always end up having a convulsion and trouble walking. now that i know what is wrong with me, i understand why that used to happen. that much physical exertion, coupled with the rush of blood and endorphins an orgasm creates was and is the worst possible thing for someone with an AVM. my brain is having trouble circulating blood as it is so, the 'rush of blood to the head' sex causes would just be disastrous. add to that the fact that i am on every anti-seizure/downer drug known to man (exaggeration for effect ;-) and you have the perfect recipe for zero sex-drive. oh, and i stopped taking 'the pill' because the phenytoin was counter-acting it, so much so, that i wasn't even having my period at the correct time.

in fact, sex hasn't even been an issue to me, and colin, being the wonderful guy that he is, hasn't complained or mentioned it at all. again, i have been so self-involved that i haven't seen how hard this is for colin. he can handle the 'no-sex-thing', but recently i have discovered that he misses physical contact and intimacy. everything has been so much about me and my comfort that i had completely forgotten about an important part of colin and my relationship, physical intimacy. physical intimacy is not just sex, it is kissing and hugging and just general affection. everything in my life has changed so completely that i didn't even really notice or miss this part of our relationship, but recently i have been trying to be more aware of how colin needs it, and truly our relationship needs it. so now, if i am feeling up to it, colin gets a bit of 'attention'. right now, i am not too interested in getting some 'attention' myself. mainly because if walking around too much gives me convulsions, what damage could an orgasm do? i'd rather not find out.

writing about the physical part of colin and my relationship has made me realise that we have lost a lot of other parts of our relationship. we can't drink/party together. i can't even stay up late with him. it is difficult for us to even go out for a dinner together. in some ways we have become estranged from each other, which causes a lot of bickering. but in other ways we are closer than we ever were before. we now both know that we are 'in it for the long haul' and we are happy about that. we can talk about our distant future travel plans and know for sure that we will do them together. and the fact that we can still have fun even though we can't drink, party or have sex together shows that we have a deeper connection. we can still chat, laugh and generally be ridiculous together. and we still have our compulsive 'series watching'. Lost is finished so now we have Heroes (season 1 ;-).

basically we are just two, very flawed people desperately trying to climb the mammoth mountain that fate has chosen to put in our way.

Payback

as fate would have it, just as i finished writing about my wonderful weekend and my new attitude towards my situation i got hit with a 45 minute doozy of a convulsion.

complete with muscle tearing, brain bursting, skull shaking, eye rolling, pain and terror, but this time i didn't despair or cry. i took a xanax and just got angry, impatient.

i am sick of being sick. so i will continue to go for my walks and write my blog and do things that make me feel useful and worthwhile even if that means more convulsions. is this a good attitude?

i don't know. probably not. maybe it is a dangerous attitude, maybe i am in denial, but i am running out of patience and i need some semblance of a life to retain my sanity.

i want to feel like i have some kind of control, over my body, my movements, my life.

Wulai

well, things have gotten a bit better since last i wrote. physically i am on an upswing right now, but i have now learnt not to get carried away. i am aware that there will be a downswing again and i am going to try my hardest not to lose all hope when that happens. i am also trying not to overreact every time i spasm, convulse, feel dizzy, nauseous or just plain 'funny in the head'. i have decided that i need to be mentally tougher on myself, if i act and treat myself like a useless invalid then that is what i will be. of course, i can't control my brain, but i can control how i react to the convulsions and how i face the difficulties of my situation. so, with that in mind, i am trying to enjoy my upswing as much as possible.

i have started walking again, but i now leave my camera at home and keep the walks to a short distance. but i am using all the beautiful photos that i have been taking. i went and printed a lot of them out and am busy covering our big, hideous cupboard with my lovely photos. not only does this give me a creative project, but it also gives more meaning to my obsessive photo-taking now that they are being used for something more than just a website that nobody looks at.

The cupboard

actually, colin and i took more cool photos at Wulai this weekend, May 26 - May 27 (which i will be putting up on my website ;-). we had finally had enough of the noise of the city and i was seriously sick of looking at the inside of our flat (even though the cupboard was looking prettier ;-). so we decided to go away for the weekend, feeling pretty sure i could handle it. Wulai is a gorgeous mountain area with hot springs and a river about an hour away from where we live. the big worry was whether i would manage the trip there and back. it is a 5 minute walk to the MRT (underground) station, then a 30 minute ride on the MRT, then a 30 minute ride in a taxi and another 5 - 10 minute walk to a hotel. pretty gruelling for someone who struggles to walk 10 minutes a day and hasn't caught the MRT in over 5 months!

but I was okay and i have Xanax to thank for that. i have always been hesitant about taking the xanax that dr. tai gives me. i feel like if i use it i am 'giving up' or 'being weak'. i am also very aware of how habit-forming a drug it is, which makes me scared to rely on it too much. but colin helped me to see that it was given to me to be used, to make my life just a little bit easier and to enable me to do things like survive the hour trip to, and back from Wulai sans convulsions.

once there, i was 'happier than a pig in shit'. we stayed in a hotel with a balcony overlooking the river and had hot spring water pumped straight into the stone bath in our hotel room. we ate tasty taiwanese food outside, looking at the mountains. i couldn't go for a walk, but i was quite content to sit on the balcony watching the swallows dive for insects over the slowly moving river, staring at the green mountains and enjoying the peace and quiet of the place. the only thing that was missing was a cold beer, but i have learnt not to dwell on the things that i can't have and try and appreciate the small pleasures that i am able to enjoy, so even if everyone else around me can drink and smoke i don't really feel that jealous. i just focus on how happy i am that i can have visitors at all and when i go to bed early while everyone else stays up to party, i just try and remember that one day i will be able to party again. and then i will be back with a vengeance!