The other evening I visited with a friend who has a different but equally voracious chronic illness to appease. He spoke of his longing for his lost career, the 'toys,' he has given up, the dreams that have withered and died. His pain seemed to float on the air like a slightly sour smelling incense. Even though I walk in similar paths and know the gouges and cracks that illness has worn; it was heart breaking to sit and listen. I knew him when, I knew him before. And it quite simply sucks the air from my breast to be so powerless. No bandaid words exist to better him or me, for that matter. And, I realized what an insight he was giving me.
Confession time. I am so alone and lonely that I ache with it. I have many people who 'do' for me; clean, run errands, pray, bring books. The list is endless. I always feel so guilty for that not being enough. But I miss having friends. I miss being part of a bible-study group. I miss girl's night out. I can feel the difference between obligation and desire. Over the past year I have lost touch with many of my closest friends and it kills me.
Being in my life is no piece of cake. And, it was sitting and talking with my friend that gave me a glimpse of what being in my intimate circle must feel like. I've never faulted others who've distanced themselves. As I've said before, my life is one heck of a twisted carnival ride.
I have to find a way to live without my old nemesis's envy, jealousy, and anger. When I hear of others lives and their reasons for not being in mine too often my first visceral response is white hot and ugly. As my own emotions are being worn down to the consistency of drought-stricken corn I simply can't seem to work up empathy. This isn't who I want to be. Somehow I need to slip off the 'old me' and those who peopled that life and learn to find joy in this pared back world that MS has led me kicking and screaming into.
I no longer have the mental or emotional capacity to pursue the ones I've lost closeness with. I dread their upset. I mean no judgement with these words. If anything, maybe reading this can give folks the freedom to live the life that is best for them. Being open to the many hands who reach out to help and accepting the love that accompanies them isn't such a bad way to live with this MonStrous illness.
Friday, August 31, 2012
Tuesday, August 21, 2012
Scary Stories
It was one of those grim slog MS days; to be endured, but most likely survivable. The hubbie transferred me from bed to chair when he arrived home from work and I made my way into the bathroom to empty my catheter bag. I pointed out to him that my caregiver had moved the dog's new plastic bottle-filling water dish outside the door because the bathroom was too hot today and I thought to myself, "be careful not to run into that when you back out." Then, I went in, did my business and backed out and ran over the 'thing' squishing it. And I didn't know what it was for a moment or two. Or why it was there. It was like my memory stepped into a dark room and shut the door. I knew my chair had run over something, but not what it was or why it was under my wheel. I felt the seconds ticking as I tried to put it together. Somewhere between a swear word and my husband responding I figured it out. But for a long black pause, nothing.
Such tremendous fear.
I can handle just about anything that MS has dealt to me. Have thought through just about every scenario that MS is reputed to have in store. But the specter of brain deterioration and memory loss is clearly my achilles heel. I thought these fears were tightly packed away in the back of that closet clear in the back of the storeroom that never gets cleaned out. I've ignored the occasional slips and lately, when bigger ones have happened, it was 'just fatigue' or 'the heat.'
Something about tonight's episode was different. I am not quite ready to pick apart why. The fear was so real I crawled back in bed like a wounded bird. For some reason my body felt numb as I tried to puzzle through what had happened and what I was feeling. The hubster did the guy thing and focused on resurrecting the water dish and clearing up the pool of water. I haven't worked up the energy to ask him if the dish survived. I did the right thing and eventually moved out to the couch. Frankly, I am still feeling too numb, too afraid to care about much of anything.
If you are a prayer, say a few extra for me. Seems like the MS is taking a heavy toll these days.
Such tremendous fear.
I can handle just about anything that MS has dealt to me. Have thought through just about every scenario that MS is reputed to have in store. But the specter of brain deterioration and memory loss is clearly my achilles heel. I thought these fears were tightly packed away in the back of that closet clear in the back of the storeroom that never gets cleaned out. I've ignored the occasional slips and lately, when bigger ones have happened, it was 'just fatigue' or 'the heat.'
Something about tonight's episode was different. I am not quite ready to pick apart why. The fear was so real I crawled back in bed like a wounded bird. For some reason my body felt numb as I tried to puzzle through what had happened and what I was feeling. The hubster did the guy thing and focused on resurrecting the water dish and clearing up the pool of water. I haven't worked up the energy to ask him if the dish survived. I did the right thing and eventually moved out to the couch. Frankly, I am still feeling too numb, too afraid to care about much of anything.
If you are a prayer, say a few extra for me. Seems like the MS is taking a heavy toll these days.
Monday, August 20, 2012
Life With Fog: Is It Worth it Part 2
Yesterday was Sunday. I needed a haircut in the, 'if I don't get one I'll either shave my head or folks will think I am a transient,' kind of way. It is odd now that I am a full-time bed filler rather than a professional worker that what I look like is no longer critical. (except to my hubbie who still seems to think I am the cat's meow). I mean, you don't see many fashion accessories that complement a catheter bag. So we headed to the mall to one of those haircuts in under 12 minutes places. It was one of those rare cool in August mornings, my MS was at a low thrum, and it seemed possible to be out and about. Lurking in the background was the ever present question: For how long and at what cost?
Recently, one of my closest friends said that she has trouble seeing my cognitive dysfunction. I tend to be talkative, happy, and positive. I finish the Friday and Saturday New York Times crosswords about 70% of the time. So, I am no dumb blonde. I am also rather stoic about the endless gnawing pain and creep deep in my cave when it becomes unbearable. No one wants to hear about it and I am sick to death of living with it. I can blithely explain the cognitive impact as that I have trouble following directions and remembering the last thing or two I am asked to do. But what is harder to explain is the fog. Thick soupy stuff that winds in sticky tendrils through my brain before making its way down over my eyes and lips and finally wending its way over my arms, torso, and legs. Until I am cocooned in a gossamer shell that I can see vague images through, but can't seem to break free from.
Haircut joint...fog free. Wandering over to lunch...feel the first tugs or slips; my left arm has to be reminded to do its thing, the sunlight hurts my eyes, I can't quite process how to negotiate the curb cut/street/parking lot combo to our destination. At the restaurant the noise and conversation start the downward spiral. It feels like my brain is stuck on a tilt-a-whirl. I can't seem to filter out any of the myriad noises around us and so can't concentrate on the menu. Eventually I pick something. After the waitress leaves I realize I am not sure what I ordered. I smile at my hubbie, we talk and food arrives. Oh, good, salad. I can eat that. I want so badly to be here with him; but my brain is at war with reality and my body is paying a high price.
Our plan was to stop at JC Penneys on our way back to the car. Sounded good at the outset, but now I am not so sure. It is so hard to explain. My body is drained, my mind is befuddled and I can't seem to keep them in sync or on track. We go in and ask a clerk the way to our department. I can hear her, but can't follow what she is saying. I ask for clarification and I can tell she finds me odd. John leads the way. I can't seem to track the item, size, and style I am looking for. I am snarly and trying to put on my normal face.
Back home, after a 1.5 hour jaunt I am smooshed out like roadkill. Two maintenance errands and a bite to eat have cratered me for the rest of the day. My nerve pain is roaring back and the MS fog has rolled in. I can't seem to work up enough fluff to converse with the old man or answer the phone.
Damn, but I quite simply hate this illness. Quite a high price to pay for a cheap hair cut and a pair of sweats.
Recently, one of my closest friends said that she has trouble seeing my cognitive dysfunction. I tend to be talkative, happy, and positive. I finish the Friday and Saturday New York Times crosswords about 70% of the time. So, I am no dumb blonde. I am also rather stoic about the endless gnawing pain and creep deep in my cave when it becomes unbearable. No one wants to hear about it and I am sick to death of living with it. I can blithely explain the cognitive impact as that I have trouble following directions and remembering the last thing or two I am asked to do. But what is harder to explain is the fog. Thick soupy stuff that winds in sticky tendrils through my brain before making its way down over my eyes and lips and finally wending its way over my arms, torso, and legs. Until I am cocooned in a gossamer shell that I can see vague images through, but can't seem to break free from.
Haircut joint...fog free. Wandering over to lunch...feel the first tugs or slips; my left arm has to be reminded to do its thing, the sunlight hurts my eyes, I can't quite process how to negotiate the curb cut/street/parking lot combo to our destination. At the restaurant the noise and conversation start the downward spiral. It feels like my brain is stuck on a tilt-a-whirl. I can't seem to filter out any of the myriad noises around us and so can't concentrate on the menu. Eventually I pick something. After the waitress leaves I realize I am not sure what I ordered. I smile at my hubbie, we talk and food arrives. Oh, good, salad. I can eat that. I want so badly to be here with him; but my brain is at war with reality and my body is paying a high price.
Our plan was to stop at JC Penneys on our way back to the car. Sounded good at the outset, but now I am not so sure. It is so hard to explain. My body is drained, my mind is befuddled and I can't seem to keep them in sync or on track. We go in and ask a clerk the way to our department. I can hear her, but can't follow what she is saying. I ask for clarification and I can tell she finds me odd. John leads the way. I can't seem to track the item, size, and style I am looking for. I am snarly and trying to put on my normal face.
Back home, after a 1.5 hour jaunt I am smooshed out like roadkill. Two maintenance errands and a bite to eat have cratered me for the rest of the day. My nerve pain is roaring back and the MS fog has rolled in. I can't seem to work up enough fluff to converse with the old man or answer the phone.
Damn, but I quite simply hate this illness. Quite a high price to pay for a cheap hair cut and a pair of sweats.
Friday, August 10, 2012
Was It Worth It? Ode to Uncle Bill
I went camping! Or, more accurately, my alter ego, Uncle Bill, as well as my extended family escaped to the Oregon High Cascades for five days to family reune (this should so be a word) and celebrate my brothers 50th. What a week, I never thought I would be able enough to pull off such a feet. And, it is clear that I no longer am. Without the army of folks who cleaned and shopped and packed; the attentive family members who waited on me hand and foot; my right hand hubbie; and my own pig headed stubbornness—it never would have happened.
When the hubbie and I were first together some 26 years ago we camped from a 1969 MGB convertible with a pup tent and a 6-pack cooler. Several years later, he and I and our then 4-year old son took almost a month to camp our way from Alaska to the lower 48 in an old Dodge van; a trip of a lifetime. Now, I need a flotilla of gear just for medical equipment and supplies. A gimps gotta have her commode and substitute hospital bed as well as catheter and copaxone and on and on and on! Little hiccups like keeping meds cold and the chair charged and this and that sterile. A tremendous pile of work.
Was it worth it?
I have to introduce my other MSers to Uncle Bill and give them permission to use him. To explain that some back history is needed. Probably from birth, I am someone who has excelled at and enjoyed planning, organizing, and executing things: from tea parties with friends, science conferences for work, to 80th birthday parties for my gramps. It was a big part of the career I once had and the role I played in the family. Not in some sort of Martha Stewart matchy matchy way, but more in a desire to bring people together and create notable experiences. It is also something MS has stolen from me. So, I created myself the alter ego of Uncle Bill. He is that kindly bachelor uncle who is good for a laugh, loves to play games, enjoys the kids...but often nods off and naps, is never expected to cook or plan anything and really can't be trusted to pick things at the store. No gathering would be complete without Uncle Bill. Now, when my family gathers, I put on my Uncle Bill hat and consciously set aside my old organizer, planner extraordinaire persona. It's a great way to let others know what I can and can't do and a gentle way for them to remind me when I slip back into my old role.
At the same time, laying on the chaise lounge, while others flip the flapjacks, cast the line, and hike the trail to see the rare orchid, I have moments of envy and jealousy that burn through me like lightening bolts.
Was it worth it?
Thursday, four days after we came home an MS attack hit with all of the ferociousness it could muster. I have Occipital Neuralgia that pulsess from the back of my head with a white hot band of pain and stabs into my eye. My left arm lost a big chunk of use and my nerve pain ratcheted up to an almost unbearable level. Most scary of all was the precipitous drop in my right lower leg and outside of that foot. The foot is curling under and, to my eyes, it looks something like a preying mantis . Eleven days later and my body seems to have short-circuited and doesn't seem to know how to stop. Of course this episode could be from anything. It could have happened whether I went camping or not. I'll never know.
Was it worth it?
My answer varies from moment to moment and day to day. Our house is still a disaster zone and my body is a mess. But my heart is full of the love from my family and the chance to get back into the mountains and camping that were once such a part of my life. Will I try it again? I do know that just the two of us will probably stick closer to home. I am a lot of show for one man to take on the road.
But if Camping 2012 is to be my wilderness swan song. Then, yes, it was more than worth it.
When the hubbie and I were first together some 26 years ago we camped from a 1969 MGB convertible with a pup tent and a 6-pack cooler. Several years later, he and I and our then 4-year old son took almost a month to camp our way from Alaska to the lower 48 in an old Dodge van; a trip of a lifetime. Now, I need a flotilla of gear just for medical equipment and supplies. A gimps gotta have her commode and substitute hospital bed as well as catheter and copaxone and on and on and on! Little hiccups like keeping meds cold and the chair charged and this and that sterile. A tremendous pile of work.
Was it worth it?
I have to introduce my other MSers to Uncle Bill and give them permission to use him. To explain that some back history is needed. Probably from birth, I am someone who has excelled at and enjoyed planning, organizing, and executing things: from tea parties with friends, science conferences for work, to 80th birthday parties for my gramps. It was a big part of the career I once had and the role I played in the family. Not in some sort of Martha Stewart matchy matchy way, but more in a desire to bring people together and create notable experiences. It is also something MS has stolen from me. So, I created myself the alter ego of Uncle Bill. He is that kindly bachelor uncle who is good for a laugh, loves to play games, enjoys the kids...but often nods off and naps, is never expected to cook or plan anything and really can't be trusted to pick things at the store. No gathering would be complete without Uncle Bill. Now, when my family gathers, I put on my Uncle Bill hat and consciously set aside my old organizer, planner extraordinaire persona. It's a great way to let others know what I can and can't do and a gentle way for them to remind me when I slip back into my old role.
At the same time, laying on the chaise lounge, while others flip the flapjacks, cast the line, and hike the trail to see the rare orchid, I have moments of envy and jealousy that burn through me like lightening bolts.
Was it worth it?
Thursday, four days after we came home an MS attack hit with all of the ferociousness it could muster. I have Occipital Neuralgia that pulsess from the back of my head with a white hot band of pain and stabs into my eye. My left arm lost a big chunk of use and my nerve pain ratcheted up to an almost unbearable level. Most scary of all was the precipitous drop in my right lower leg and outside of that foot. The foot is curling under and, to my eyes, it looks something like a preying mantis . Eleven days later and my body seems to have short-circuited and doesn't seem to know how to stop. Of course this episode could be from anything. It could have happened whether I went camping or not. I'll never know.
Was it worth it?
My answer varies from moment to moment and day to day. Our house is still a disaster zone and my body is a mess. But my heart is full of the love from my family and the chance to get back into the mountains and camping that were once such a part of my life. Will I try it again? I do know that just the two of us will probably stick closer to home. I am a lot of show for one man to take on the road.
But if Camping 2012 is to be my wilderness swan song. Then, yes, it was more than worth it.
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