Saturday, 29 September 2012
The new antidepressant is definitely working - I manage to do few things on my own initiative nearly daily - but the side-effects are pretty bad. I'm losing weight even faster than I did before, have no 'normal' appetite, then start having pangs of starving when the feeling is not that 'I'm hungry', but that 'if I won't eat something right now, I'm going to get flat down on the floor'. I've seen doctor Moloney, gastrologist (plus few other credits to his name), few days ago - he is a stern, nearly 'dry' man, but he listens with nearly absolute focus, and even if he's writing something when I speak, he always asks questions afterwards showing that he didn't miss even a single word. I like him, and trust him, both as a person and as a medical professional - obviously I don't know him other that being his patient, but I'm pretty sure that he is one of those rare really decent doctors, that I'm sooooo lucky to find looking after me: he asked how I feel about staying in hospital for 2-3 days 'for tests', but it's in Nenagh, so I told him honestly that I don't really fancy the idea. Maybe if it was the Regional - five minutes away from home, and perfectly easy for most of my friends to drop in. So anyway, he said that he will organise the outpatient appointments, first for scans, then gastroscopy and whatever else. He said that we have to get some explanation as to why am I losing the weight...
Last few nights have been awful: I wasn't able to take off the skirt in the evening, so I slept i Pj's bottom and the T-shirt/shirt on top. Stretching, turning, pulling my arms, trying to grab either the buttons or the edges of the sleeves - it was simply too much pain. So instead I had a little bit of sleep, be it in my daily clothing, and in the morning, when I was more rested, I would slowly get the dirty tops off and get into the shower, so that the shoulder pain was immediately treated with warm water...
Wednesday, 19 September 2012
big day tomorrow - my new personal assistant is supposed to come in: got the pleasure three times a week for an hour each time. maybe i would finally get to use the compression stockings again: the way it is now, i can't grab them tight enough to pull them up (even if they are only knee-high, it's simply impossible for me to put them on).
have been seen by prof. Harmon not so long ago: the wrist needs a surgery, there is nothing else to be done to even try to alleviate the pain. while he is at it, the surgeon is supposed to have a look at my shoulder as well: the pain is nauseating at times, it's so bad...
have been seen by prof. Harmon not so long ago: the wrist needs a surgery, there is nothing else to be done to even try to alleviate the pain. while he is at it, the surgeon is supposed to have a look at my shoulder as well: the pain is nauseating at times, it's so bad...
Monday, 3 September 2012
'it's the next stage - i'm so very sorry' said my GP today, when she saw me after returning from her holidays, when i staggered into the examination room with my 'new wheels' = the walker. for a moment i wanted to reply 'yes, but we didn't really think i would manage to get here' - then i realised that if i suddenly jumped from the pain i was experiencing even six month ago to what i'm going through today, i wouldn't have made it, but since i'm going downhill very steadily (albeit terrifyingly fast), i'm somehow able to survive the pain...
for the last two days my legs are playing up: they are really hurting, and they feel weak. they don't feel mine at all, it's really strange - i can see them looking the same as always, but they are becoming an estranged part of my body, part that i can no longer control...
but on a positive note, i think i made two friends last week, one being my student and one being a person who asked me for help in filling in some forms... somehow, they open up to me, and i ended up listening, thinking, feeling, and finally talking... it's so difficult for me to talk to people: those who knew me as a fully abled, energetic, going-going-gone time don't know the person i'm becoming now, and those who meet me now have no idea who i was, who i used to be. i nearly wrote that they don't know 'the real me' but i don't know any more myself who the real me is: i have all this past in me, which made me the 'me' - but this fibromyalgia-crippled body is me as well, yet a completely different one, dependent, constantly exhaused, having great difficulties to do anything.
is this what my grandfather felt after having his legs amputated: that he is not himself any more, that the body he is stuck with belongs to some other Stan, who he didn't know and didn't wish to know? i have no idea, but i know how much he was looking forward to die, to end the pain. because i started my waiting already.
for the last two days my legs are playing up: they are really hurting, and they feel weak. they don't feel mine at all, it's really strange - i can see them looking the same as always, but they are becoming an estranged part of my body, part that i can no longer control...
but on a positive note, i think i made two friends last week, one being my student and one being a person who asked me for help in filling in some forms... somehow, they open up to me, and i ended up listening, thinking, feeling, and finally talking... it's so difficult for me to talk to people: those who knew me as a fully abled, energetic, going-going-gone time don't know the person i'm becoming now, and those who meet me now have no idea who i was, who i used to be. i nearly wrote that they don't know 'the real me' but i don't know any more myself who the real me is: i have all this past in me, which made me the 'me' - but this fibromyalgia-crippled body is me as well, yet a completely different one, dependent, constantly exhaused, having great difficulties to do anything.
is this what my grandfather felt after having his legs amputated: that he is not himself any more, that the body he is stuck with belongs to some other Stan, who he didn't know and didn't wish to know? i have no idea, but i know how much he was looking forward to die, to end the pain. because i started my waiting already.
Thursday, 30 August 2012
for the last few weeks I struggle with really bad depression - so bad, in fact, that my psychiatrist decided I should change the antidepressant, because the one I'm on clearly isn't working any more. so on top of being in pretty bad shape in the first place, I had to be weened off the Lexapro, which I was taking, and only then I could start on a very low doze of Venlaxafine, before the doze can be upped to the level equal to what I was on before, and then gradually raised again...
I know that depression (or bi-polar disorder, which I have - and which is probably the 'residue' of the brain tumour, which I had some 17 years ago) is a very common sister-illness of fibromyalgia (i.e. those afflicted by fibromyalgia very often suffer from depression as well), but it doesn't really help: the lower I am, the more I feel the physical pain of fibromyalgia, which makes me more depressed and unwilling to move or live, which causes me to be more sensitive to physical pain, and so on, and so on... vicious circle...
what keeps me going is the students, and my animals - when I look at them, they still give me a little flicker of joy in this very lonely, otherwise pointless life.
I realised recently that what I miss most is the 'direct' human contact: any time when one of my friends hugs me, even for a brief moment, and does it because they want to and not because it's some sort of ritual or expectation - this moment of being held by another human being is a confirmation that I still mater, that I'm still a valid person despite my disability, that there is somebody who cares about me... it's whingy, what I'm saying, but fibromyalgia is a very lonely illness, because it's not visible - so people think that everything is 'all right' because one doesn't look 'so bad', and so they expect the person to act at the same level of activity as one always did, and when one doesn't - it's this unspoken presumption of laziness, 'lack of moral fiber', 'taking things easy' instead of 'just pull yourself together' attitude... sometimes I envy those, whose illness/disability is clearly visible. at least nobody expects impossible of them...
I know that depression (or bi-polar disorder, which I have - and which is probably the 'residue' of the brain tumour, which I had some 17 years ago) is a very common sister-illness of fibromyalgia (i.e. those afflicted by fibromyalgia very often suffer from depression as well), but it doesn't really help: the lower I am, the more I feel the physical pain of fibromyalgia, which makes me more depressed and unwilling to move or live, which causes me to be more sensitive to physical pain, and so on, and so on... vicious circle...
what keeps me going is the students, and my animals - when I look at them, they still give me a little flicker of joy in this very lonely, otherwise pointless life.
I realised recently that what I miss most is the 'direct' human contact: any time when one of my friends hugs me, even for a brief moment, and does it because they want to and not because it's some sort of ritual or expectation - this moment of being held by another human being is a confirmation that I still mater, that I'm still a valid person despite my disability, that there is somebody who cares about me... it's whingy, what I'm saying, but fibromyalgia is a very lonely illness, because it's not visible - so people think that everything is 'all right' because one doesn't look 'so bad', and so they expect the person to act at the same level of activity as one always did, and when one doesn't - it's this unspoken presumption of laziness, 'lack of moral fiber', 'taking things easy' instead of 'just pull yourself together' attitude... sometimes I envy those, whose illness/disability is clearly visible. at least nobody expects impossible of them...
somehow, i still can't get rid of depression - and pain. had a very bad narcolepsy attacks for the last three days: i just freeze suddenly, and next thing i know it's maybe 15 minutes or maybe 4 hours later... i learnt to recognise the first symptoms of when it's likely to come, so if i'm driving, i can estimate whether i have time to get back home, or it would be safer to pull in and sleep till i wake up. but the driving is likely to go in the next few months - unless the neurologist (i have an appointment for 5th september) finds a way to keep me more alert and helps me regain the balance, because it's pretty bad...
Maurice said yesterday that i looked great. i know he meant well - but whenever i hear something like this i want to scream 'it doesn't bloody matter how i look, my illness is invisible but it's killing me anyway!'. on that note, i suddenly remembered a song i used to sing years ago: 'it's so funny to be dying when all you want is to live / [...] how funny it is to thing about something / and know you lack the words / to jump without warning from the sunlight / into the darkness of a laughing moon / it's amusing to want and not be able to / or be able but don't want / [...] / don't die yet, Pinokio / try to be through another night' - how well i understand these words now... it's not that i want to live at all cost (in fact, the worse the pain, the more often i start to think how much longer would i be able to withstand it - and what for: there is no cure anyway, and my life is getting more and more difficult by the day, i'm becoming dependant on others with even the easiest tasks like cooking for just one person, ironing, shopping, cleaning, showering, getting dressed - and those who know me well from my 'normal' times know, that i was always fiercely independent, moving with a speed of light, doing everything i could and more - but what is left of the former me is the name and the outer body, because the inside of my body is all fecked up). there is so many things i 'want but am not able to'.
Laura recently asked me, if there is anything on my bucket-list that i still might be able to do, but am likely not to be able to sometime soon. it was the most unexpected, yet the most understanding and caring question anybody had asked me since i got ill. it showed me the care, the respect for me as a still-valid human being. the illness strips this validation off the person, and more and more often i became just an invalid, not a 'normal person' any more. and it hurts...
Maurice said yesterday that i looked great. i know he meant well - but whenever i hear something like this i want to scream 'it doesn't bloody matter how i look, my illness is invisible but it's killing me anyway!'. on that note, i suddenly remembered a song i used to sing years ago: 'it's so funny to be dying when all you want is to live / [...] how funny it is to thing about something / and know you lack the words / to jump without warning from the sunlight / into the darkness of a laughing moon / it's amusing to want and not be able to / or be able but don't want / [...] / don't die yet, Pinokio / try to be through another night' - how well i understand these words now... it's not that i want to live at all cost (in fact, the worse the pain, the more often i start to think how much longer would i be able to withstand it - and what for: there is no cure anyway, and my life is getting more and more difficult by the day, i'm becoming dependant on others with even the easiest tasks like cooking for just one person, ironing, shopping, cleaning, showering, getting dressed - and those who know me well from my 'normal' times know, that i was always fiercely independent, moving with a speed of light, doing everything i could and more - but what is left of the former me is the name and the outer body, because the inside of my body is all fecked up). there is so many things i 'want but am not able to'.
Laura recently asked me, if there is anything on my bucket-list that i still might be able to do, but am likely not to be able to sometime soon. it was the most unexpected, yet the most understanding and caring question anybody had asked me since i got ill. it showed me the care, the respect for me as a still-valid human being. the illness strips this validation off the person, and more and more often i became just an invalid, not a 'normal person' any more. and it hurts...
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