My monthly visit with dr. V. in the FFC clinic was on the program today. Which always means a lot of stress in making sure to be ready in time. Showering needs to be done etc.
To give non CFS people an idea how that looks like I will share this experience with you. ;-)
My appointment today was at a convenient time at 11:30 AM.
Last night I didn't sleep well, my bladder pain was troubling me, no matter what side I lay on there was this throbbing pinching pain. The last time I looked at the clock it said 4:32 AM. I finally drifted away on a dream filled cloud. Got up at 6:00 to go to the bathroom and again at 7:15 so no refreshing sleep for me. Stayed in bed until 9:00 AM.
9:00 AM stretch, open up one eye to see if the world agrees with me today. Open up blinds above me to let sunlight into the room and wake up. Get iPhone, check for important/exciting/fun/loving email msgs, nah... none. *sigh* Check other email account, nah.. nothing only spam. Pet the puppy, snuggle with him, do everything to delay actually getting up. Puppy pierces my ear so I can wear another set of earrings and makes it not easier to stay in bed. Wants me to get up and play! So far for support from your pets. *mumble*
9:15 Carefully sit up, make sure not to sit up abruptly and end up passing out. See if legs still work because feet feel numb. Shuffle to the bathroom, thanking the good spirits that our room is so small that I do not have to walk very far to get there. Avoid looking in the mirror as that only depresses us more. Sit on the toilet to rest, try to fetch the towel hanging too high on a hook while sitting, dang..... hook popped out of the wall. Get up, get non-smelling shower stuff because people in clinic do not appreciate smelly shower stuff on other people and head to W.'s bathroom in the hall because he has a bath with a shower and handrails that I can hold on to. I'm almost there when I realize I forgot my sponge on a stick, shoot will have to go back now. Have to rest on the toilet again before making the trip to W. bathroom again. By now it's;
9:30 Stand under warm water, not too warm because that makes all the blood run to the surface of the skin and not enough to send to my brain which will make me pass out again, wouldn't be the first time, you learn pretty quick when you keep falling on the sharp edge of the shower stall. Call W. for assistance in washing while I hold on to the rails. He washes my hair and all other parts, luckily he works from home today. Rinse,... oh oh turned too quickly and see the room spinning, wait for it to stop. Stupid room. Fetch towel and towel off partly dry, now need to step out of the bath. Stupidly enough there's no rail to hold onto while stepping out, make mental not to fix that. Wonder how long mental note will stay in memory ;-)
Shower as short as possible, can not remember the day that showering was a relaxing wonderful experience that could easily take 20 min.
9:40 shuffle partly dry to the bedroom and fall on the bed exhausted. W. makes sure I lie down ok and goes back to work. My head is pounding just like my bladder and I'm damp and sticky. Try to ignore uncomfortable feelings and practice zen.
Oh God I'm tired!
9:55 get up slowly, am almost dry except nooks and crannies. Brush teeth while studying self in mirror. Hair is falling out again, need to clip it so it doesn't look funny. *sigh* *double sigh* Dark circles under eyes looked interesting end 60's now it looks plain horrible. I don't know the person looking back at me and wonder who she is. I know she could use a spa pampering, a mask, some eyebrow therapy and loads of camouflage make-up to cover up all the marks of a chronic ill person.
10:12 Stand in front of closet try to decide what to wear that I can take off easily and also put back on by myself. Something that doesn't hurt my skin while I'm wearing it would be nice also. There are days that even the seam of a soft t-shirt will hurt so much it's unbelievable. Decide to wear loose sports capri with tank and cardigan and of course flip flops. Can't put on regular shoes by myself. Feel like a toddler.
10:23 have been sitting on the bed while struggling to get bra on. Feel tears of frustration coming up but ignore. Wrestle and finally it's on, now pants, one leg goes fine other one is stuck in the leg. Damn!!! Getting angry doesn't help either. Rest for a while while trying to think positive thoughts. Finally leg goes through and I can pull up the pants. Am sweaty and exhausted again! Wonder what it was like to feel like a woman, sure as hell didn't feel this way!
Put head through the tank and am happy it goes on so well, nice tank! Only to discover I got it on backwards. *sigh*.
10:40 now and I haven't even had breakfast yet. I should dhave eaten before I went to shower. Rest on the bed, take meds and there is W. with daily injection. Okaaaaaaaayyyyyy. Have to pull pants down again for injection, oh dear Lord it hurts like hell. I don't know why that stuff need to hurt so much. Suppose to be 'energy injections' Ha! Pfffffft energy injections!! Think again positive thoughts and imagine fluid spreading fluid wave of energy through body. Must try harder next time, didn't work. Now need to stay in this position until it doesn't hurt to move anymore. Feel wave of exhaustion overtaking me and I drift off........
10:55 SHOOT! need to hurry now, quickly grab energy bar, bottle of water, medical history file and file with notes and out of the door. Will pay for surge of adrenaline later. Can rest in the car on my way to see dr. V.
11:05 sit in our comfortable Saab and enjoy the scenery, if you don't get out much the scenery changes quickly in the spring, trees are blossoming, people smiling because of the sun, nice! Ignore bladder that tells me I should have gone to the bathroom before leaving the house. Will go at the clinic. Arrive nicely in time at the clinic at 11:30.
Are you tired yet? ;-)
Will report tomorrow about dr. V.'s visit, need to catch up on some sleep now.
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To give non CFS people an idea how that looks like I will share this experience with you. ;-)
My appointment today was at a convenient time at 11:30 AM.
Last night I didn't sleep well, my bladder pain was troubling me, no matter what side I lay on there was this throbbing pinching pain. The last time I looked at the clock it said 4:32 AM. I finally drifted away on a dream filled cloud. Got up at 6:00 to go to the bathroom and again at 7:15 so no refreshing sleep for me. Stayed in bed until 9:00 AM.
9:00 AM stretch, open up one eye to see if the world agrees with me today. Open up blinds above me to let sunlight into the room and wake up. Get iPhone, check for important/exciting/fun/loving email msgs, nah... none. *sigh* Check other email account, nah.. nothing only spam. Pet the puppy, snuggle with him, do everything to delay actually getting up. Puppy pierces my ear so I can wear another set of earrings and makes it not easier to stay in bed. Wants me to get up and play! So far for support from your pets. *mumble*
9:15 Carefully sit up, make sure not to sit up abruptly and end up passing out. See if legs still work because feet feel numb. Shuffle to the bathroom, thanking the good spirits that our room is so small that I do not have to walk very far to get there. Avoid looking in the mirror as that only depresses us more. Sit on the toilet to rest, try to fetch the towel hanging too high on a hook while sitting, dang..... hook popped out of the wall. Get up, get non-smelling shower stuff because people in clinic do not appreciate smelly shower stuff on other people and head to W.'s bathroom in the hall because he has a bath with a shower and handrails that I can hold on to. I'm almost there when I realize I forgot my sponge on a stick, shoot will have to go back now. Have to rest on the toilet again before making the trip to W. bathroom again. By now it's;
9:30 Stand under warm water, not too warm because that makes all the blood run to the surface of the skin and not enough to send to my brain which will make me pass out again, wouldn't be the first time, you learn pretty quick when you keep falling on the sharp edge of the shower stall. Call W. for assistance in washing while I hold on to the rails. He washes my hair and all other parts, luckily he works from home today. Rinse,... oh oh turned too quickly and see the room spinning, wait for it to stop. Stupid room. Fetch towel and towel off partly dry, now need to step out of the bath. Stupidly enough there's no rail to hold onto while stepping out, make mental not to fix that. Wonder how long mental note will stay in memory ;-)
Shower as short as possible, can not remember the day that showering was a relaxing wonderful experience that could easily take 20 min.
9:40 shuffle partly dry to the bedroom and fall on the bed exhausted. W. makes sure I lie down ok and goes back to work. My head is pounding just like my bladder and I'm damp and sticky. Try to ignore uncomfortable feelings and practice zen.
Oh God I'm tired!
9:55 get up slowly, am almost dry except nooks and crannies. Brush teeth while studying self in mirror. Hair is falling out again, need to clip it so it doesn't look funny. *sigh* *double sigh* Dark circles under eyes looked interesting end 60's now it looks plain horrible. I don't know the person looking back at me and wonder who she is. I know she could use a spa pampering, a mask, some eyebrow therapy and loads of camouflage make-up to cover up all the marks of a chronic ill person.
10:12 Stand in front of closet try to decide what to wear that I can take off easily and also put back on by myself. Something that doesn't hurt my skin while I'm wearing it would be nice also. There are days that even the seam of a soft t-shirt will hurt so much it's unbelievable. Decide to wear loose sports capri with tank and cardigan and of course flip flops. Can't put on regular shoes by myself. Feel like a toddler.
10:23 have been sitting on the bed while struggling to get bra on. Feel tears of frustration coming up but ignore. Wrestle and finally it's on, now pants, one leg goes fine other one is stuck in the leg. Damn!!! Getting angry doesn't help either. Rest for a while while trying to think positive thoughts. Finally leg goes through and I can pull up the pants. Am sweaty and exhausted again! Wonder what it was like to feel like a woman, sure as hell didn't feel this way!
Put head through the tank and am happy it goes on so well, nice tank! Only to discover I got it on backwards. *sigh*.
10:40 now and I haven't even had breakfast yet. I should dhave eaten before I went to shower. Rest on the bed, take meds and there is W. with daily injection. Okaaaaaaaayyyyyy. Have to pull pants down again for injection, oh dear Lord it hurts like hell. I don't know why that stuff need to hurt so much. Suppose to be 'energy injections' Ha! Pfffffft energy injections!! Think again positive thoughts and imagine fluid spreading fluid wave of energy through body. Must try harder next time, didn't work. Now need to stay in this position until it doesn't hurt to move anymore. Feel wave of exhaustion overtaking me and I drift off........
10:55 SHOOT! need to hurry now, quickly grab energy bar, bottle of water, medical history file and file with notes and out of the door. Will pay for surge of adrenaline later. Can rest in the car on my way to see dr. V.
11:05 sit in our comfortable Saab and enjoy the scenery, if you don't get out much the scenery changes quickly in the spring, trees are blossoming, people smiling because of the sun, nice! Ignore bladder that tells me I should have gone to the bathroom before leaving the house. Will go at the clinic. Arrive nicely in time at the clinic at 11:30.
Are you tired yet? ;-)
Will report tomorrow about dr. V.'s visit, need to catch up on some sleep now.
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