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!

Positive

okay, so i feel i need to quickly add a more positive post as my last few have been full of 'doom and gloom'. i am attempting to deal with the obstacles in my life.

i have been resting more so i feel a little bit more healthy and i am also trying to find the hope that i seem to have lost along the way somewhere.

for the Noise, i will be going away on weekends.

for the boredom and loss of meaning in my life, i am planning to start some new art projects, perhaps a 'mixed media' collage of paint and my MRI and angiography images.

for my depression, i will tentatively start walking and taking photographs again.

and i also got Dina to braid my hair; just for fun, to remind me of south africa and to boost my self-esteem. don't i look hot? ;-D

Noise

Touch our construction site

as i write this it is a lovely, cool, spring day outside in taipei city and i would love to have every window open so that i can enjoy the refreshing breeze running through my house. but i am sitting inside with every single window and door closed, trapped inside a small, airtight, suffocating box. i also have rubber earplugs shoved way down into my ears, which cause pressure to build up inside my ears giving me earache, headaches and vertigo. why?

because on either side of my lovely little flat are huge construction sites. the buildings must be very important because the construction workers are happy to use pneumatic drills on concrete and electric saws on metal from 8 am - 5 pm, 7 days a week without taking a break. the construction site outside our kitchen window is so close i can almost touch it. my poor little flat actually shakes, rattles and rolls from the Noise they create. it feels as though they are pouring the concrete straight into my head and then drilling steel bolts into it. needless to say, this is not a positive force on my road to recovery, especially since my hearing is directly affected by the AVM on my brain stem and vice versa. in fact, it has often been the cause of hysterical tears when i am woken up at 8 am by the sound of huge bolts being driven into iron girders 'in my bedroom'. on the weekend, the cars of the foremen etc. are regularly 'egged' by a furious colin, with me 'egging' (tee hee?) him on. sometimes i switch on the old, loud air conditioner just to try and drown out some of the construction noise and also in the vindictive, but vain hope that the hot air will blow onto the construction workers and cause them some discomfort.

Another construction site

this Noise is typical of taipei though. i used to try and escape it by going for walks with Dina, but around every corner there is another construction site! there are even construction sites by the park! you see, taipei is a 'city on the move'. they are rabidly tearing down all the old, crumbling buildings and erecting huge, shiny monstrocities in their place. it is 'the march of progress'. this malaise is common in many big asian cities and other areas of economic growth in asian countries. for example, colin and i were stunned when we went to an island in the phillipines, found the most secluded beach for our one holiday of the year only to be confronted with a huge construction site. "gotta build another hotel so that more tourists can come and stay!"

this Noise makes me miss my suburban home in south africa where we used to complain if there was a dog barking! oh, and i had a garden! sure the house has been broken into a few times and you are paranoid of everyone around you when you walk the streets day or night, but at least it was calm, peaceful, quiet. i guess what i am trying to say is that i feel that i have a right to relax in my own home with my windows open. the Noise has become increasingly worse and causes extreme stress and unhappiness in both my and colin's lives. we have looked to move, but everywhere is just as noisy. so, in the interests of sanity and peace we have decided to leave our home every weekend and stay in a hotel, just for a goddamn bit of peace and quiet. what i really wonder is whether our taiwanese neighbours feel the same way we do or whether they have just accepted it by now.