Sometimes a Wheelchair Looks Mighty Nice
Sheila and I came back home from the Amherst Railway Society's train show with a cold. I always need some time to recover after any trip because of my spinal injuries and mostly due to my illness... Systemic Mastocytosis. Needing some time to recover is no surprise but having a cold on top of my usual need for recovery only compounds the problem. That being said, compared to my usual recoveries after trips, this cold so far has been rather 'mild' for me.
Sheila is feeling well enough to be back at work today but my cold is still lingering... clogged head, runny nose, and painful swollen lymph nodes. Of course, whenever I run down my health since procuring this insidious illness, I experience these symptoms to some extent.... some times worse than others. Since Sheila has this cold at the same time that I'm experiencing these symptoms, I'm assuming that I'm also fighting off this bug in addition to trying to recover after wearing down my health.
My spinal injuries have been my biggest complaint since our first morning at the train show. By the time we left the show that first afternoon, I felt as though someone had driven a railroad spike into my lower back... and some common framing nails in my hips... with pain radiating through my abdomen, groin and lower back. By lunchtime on Sunday, I was getting shooting pains down the backs of my legs to my knees.
Since the show on Saturday, whenever I try to change from a sitting position to a standing position, or vice versa, I actually see stars... my vision gets fuzzy and gray... with little sparklies in my vision.
This problem of graying-out brings back memories of my first line-of-duty injury while continuing to complete my mission, running around with a huge pack on my back... graying out because of the pain but continuing on... pushing myself for a month... constantly graying out and feeling as though ice picks were slammed through the tops of my feet and as though I had a spike driven into my spine. That was almost 20 years ago and I'm still experiencing the same pain at times all these years later... even with daily physical therapy. The neurosurgeons say I should not even be capable of standing yet I keep pushing forward and continuing my daily physical therapy. It hurts like hell... but I'm independent and mobile.
Needless to say, while I was experiencing this pain at the show, I was keeping an eye on how people with wheeled walkers (those walkers that have a seat too) and those with wheelchairs were getting around at the show. Truth be told, for the first time in my life, I was wishing I had one of those so I could get off my feet and relieve some of the pain.
So, why was I so interested in how well these contraptions worked for each of them? I suppose what concerns me is that this is a huge step to take... emotionally as well as physically. I also always see these same people continuing to struggle one way or another and that concerns me. I don't really care to eliminate one struggle (pain) by introducing one or more new struggles. It is disheartening enough to see someone need this sort of help but even more disheartening to see them continue to struggle in a different way because this tool which should help them isn't really right for them.
I've always fought to stay out of wheelchairs... I don't know why... even as a five year old after a hernia operation, I refused to get into the wheelchair. I can still vividly picture my parents walking ahead of me while leaving the hospital... I was struggling to keep up because of the pain in my groin after surgery... I'd look behind me and a nurse was pushing a wheelchair waiting for me to give in and sit. That wheelchair was like the devil in my mind, even as a five year old. I've been refusing wheelchairs ever since.
Decades later, while in the Air Force, I was found unconscious... I came to, in a dazed fog... medics wanted me on a stretcher but I stubbornly refused and walked to the transport... then again stubbornly walked into the hospital... a few hours later I awoke again to the Chaplain giving me my Last Rites. So, even being so low to be administered my Last Rites, I still refused to give up my independence and mobility... I continued to push forward on my own.
Perhaps a part of me already knew I would eventually be facing a lifelong struggle with independence and mobility... or, perhaps I am just stubborn... I don't know but, I can still walk on my own.
I'm at a point in my health where I find myself wishing for and needing relief at times... Those walkers with a seat and the wheelchairs looked mighty nice at the train show this past weekend when I was struggling with excruciating pain.
But, which type of device would be ideal for me in my situation with my health?
Those with wheeled walkers with a seat had difficulty getting around when seated. You need to have someone willing to push you around. Those wheels are relatively small too so they only roll well on smooth ground. Walking around with these walkers is convenient because these walkers have hand brakes to hold it stationary when necessary. Being seated looked rather uncomfortable though... and there is the aforementioned problems with mobility once seated.
Wheelchairs, on the other hand, make it easy to get around on my own. I could propel myself using my arms. They do look terribly uncomfortable for my back though. They sort of remind me of those square tubular camping chairs with a straight upright back and with just a sling for a seat... and those things are miserable for my spinal injuries. Actually, I can't imagine those seats are comfortable for anyone! So, even many of these wheelchairs cause some concern for me with my particular spinal injuries. Plus, I would want hand brakes on the wheelchair for using it as a walker since I only need to get off my feet after an hour or two... and I would only be able to stay seated in this one position for an hour or two.
I like to stay as active as possible while protecting my spine. I need constant changes in position... I can only take so much standing... and I can only take so much sitting... and I can only take so much laying down. Neither a typical walker nor a typical wheelchair seem to be suited to my injuries.
Here is the other sticking point about needing a mobility aid such as this... I only really need something such as this for events like this train show... on hard, unforgiving concrete... not nearly enough seats available for those needing to get off their feet... and needing to keep moving.
When we are out sightseeing... say in a city someplace... I seem to have less of a problem with my spinal injuries because I have more freedom of motion (I'm still in terrible pain but I can more easily adapt and manage)... I can find more places to lean or sit for a short break and a little bit of relief and recovery... I can even find room to do a little stretching when necessary. None of this is possible at these crowded train shows.
Of course, a "crowded" train show brings up other issues. For instance, would we have enough room for pushing around a wheelchair or walker? Would I be sitting high enough to view all these operating model railroad layouts? Squeezing into crowded areas would be difficult or impossible. On the other hand, I could use this walker or chair to hold stuff that is usually slung over a shoulder which would help my spine too.
I really don't know what the answer is at this point. A part of me still feels as though accepting even temporary help from a wheelchair or walker is somehow 'giving up'... but, I have to say that some of those walkers and wheelchairs were looking mighty nice when I was in pain at the train show this past weekend!
Maybe I need to design one specifically for my own needs... for only certain limited times...
EDIT - 5 Feb 2016: I've been continually thinking about this issue over the past week. I am not ready to emotionally accept that I sometimes need a wheelchair or walker of some sort.
Sitting in a wheelchair or even one of those walkers with a seat would only cause additional problems while solving just one... giving my screaming spine a break. Here are the problems a walker or wheelchair would introduce to an already painful problem:
1. If I sit in a wheelchair or on one of those walkers with a seat, then I will be sitting too low to view any of the model railroads... rendering this potential solution useless.
2. Even when I am feeling relatively "good", I am still in considerable pain. When the pain is so bad that I must get off my feet, my spine is extremely sensitive and in excruciating pain. Any little bumps we roll over in a wheelchair or, worse yet, one of those walkers with a seat with small wheels, will cause terrible pain. If rolling over small bumps is extremely painful, I'd might as well just continue to struggle with walking.
3. Dragging one of these things around until I need it... or until I might need it... would be a pain in the butt. As a result, I would probably just leave it in the trunk of the car... then I would feel bad about sending someone back to the car to retrieve it when I do need it. I don't need to be putting myself on a guilt trip any more than I already do because of sudden changes in plans due to my health.
For now... this train of thought of purchasing a walker or wheelchair is a dead end... I feel that if I give in and say, "Okay... I will use a wheelchair occasionally" then, the overall condition of my spine will just deteriorate much more quickly. I must keep on moving...
Sheila is feeling well enough to be back at work today but my cold is still lingering... clogged head, runny nose, and painful swollen lymph nodes. Of course, whenever I run down my health since procuring this insidious illness, I experience these symptoms to some extent.... some times worse than others. Since Sheila has this cold at the same time that I'm experiencing these symptoms, I'm assuming that I'm also fighting off this bug in addition to trying to recover after wearing down my health.
My spinal injuries have been my biggest complaint since our first morning at the train show. By the time we left the show that first afternoon, I felt as though someone had driven a railroad spike into my lower back... and some common framing nails in my hips... with pain radiating through my abdomen, groin and lower back. By lunchtime on Sunday, I was getting shooting pains down the backs of my legs to my knees.
Since the show on Saturday, whenever I try to change from a sitting position to a standing position, or vice versa, I actually see stars... my vision gets fuzzy and gray... with little sparklies in my vision.
This problem of graying-out brings back memories of my first line-of-duty injury while continuing to complete my mission, running around with a huge pack on my back... graying out because of the pain but continuing on... pushing myself for a month... constantly graying out and feeling as though ice picks were slammed through the tops of my feet and as though I had a spike driven into my spine. That was almost 20 years ago and I'm still experiencing the same pain at times all these years later... even with daily physical therapy. The neurosurgeons say I should not even be capable of standing yet I keep pushing forward and continuing my daily physical therapy. It hurts like hell... but I'm independent and mobile.
Needless to say, while I was experiencing this pain at the show, I was keeping an eye on how people with wheeled walkers (those walkers that have a seat too) and those with wheelchairs were getting around at the show. Truth be told, for the first time in my life, I was wishing I had one of those so I could get off my feet and relieve some of the pain.
So, why was I so interested in how well these contraptions worked for each of them? I suppose what concerns me is that this is a huge step to take... emotionally as well as physically. I also always see these same people continuing to struggle one way or another and that concerns me. I don't really care to eliminate one struggle (pain) by introducing one or more new struggles. It is disheartening enough to see someone need this sort of help but even more disheartening to see them continue to struggle in a different way because this tool which should help them isn't really right for them.
I've always fought to stay out of wheelchairs... I don't know why... even as a five year old after a hernia operation, I refused to get into the wheelchair. I can still vividly picture my parents walking ahead of me while leaving the hospital... I was struggling to keep up because of the pain in my groin after surgery... I'd look behind me and a nurse was pushing a wheelchair waiting for me to give in and sit. That wheelchair was like the devil in my mind, even as a five year old. I've been refusing wheelchairs ever since.
Decades later, while in the Air Force, I was found unconscious... I came to, in a dazed fog... medics wanted me on a stretcher but I stubbornly refused and walked to the transport... then again stubbornly walked into the hospital... a few hours later I awoke again to the Chaplain giving me my Last Rites. So, even being so low to be administered my Last Rites, I still refused to give up my independence and mobility... I continued to push forward on my own.
Perhaps a part of me already knew I would eventually be facing a lifelong struggle with independence and mobility... or, perhaps I am just stubborn... I don't know but, I can still walk on my own.
I'm at a point in my health where I find myself wishing for and needing relief at times... Those walkers with a seat and the wheelchairs looked mighty nice at the train show this past weekend when I was struggling with excruciating pain.
But, which type of device would be ideal for me in my situation with my health?
Those with wheeled walkers with a seat had difficulty getting around when seated. You need to have someone willing to push you around. Those wheels are relatively small too so they only roll well on smooth ground. Walking around with these walkers is convenient because these walkers have hand brakes to hold it stationary when necessary. Being seated looked rather uncomfortable though... and there is the aforementioned problems with mobility once seated.
Wheelchairs, on the other hand, make it easy to get around on my own. I could propel myself using my arms. They do look terribly uncomfortable for my back though. They sort of remind me of those square tubular camping chairs with a straight upright back and with just a sling for a seat... and those things are miserable for my spinal injuries. Actually, I can't imagine those seats are comfortable for anyone! So, even many of these wheelchairs cause some concern for me with my particular spinal injuries. Plus, I would want hand brakes on the wheelchair for using it as a walker since I only need to get off my feet after an hour or two... and I would only be able to stay seated in this one position for an hour or two.
I like to stay as active as possible while protecting my spine. I need constant changes in position... I can only take so much standing... and I can only take so much sitting... and I can only take so much laying down. Neither a typical walker nor a typical wheelchair seem to be suited to my injuries.
Here is the other sticking point about needing a mobility aid such as this... I only really need something such as this for events like this train show... on hard, unforgiving concrete... not nearly enough seats available for those needing to get off their feet... and needing to keep moving.
When we are out sightseeing... say in a city someplace... I seem to have less of a problem with my spinal injuries because I have more freedom of motion (I'm still in terrible pain but I can more easily adapt and manage)... I can find more places to lean or sit for a short break and a little bit of relief and recovery... I can even find room to do a little stretching when necessary. None of this is possible at these crowded train shows.
Of course, a "crowded" train show brings up other issues. For instance, would we have enough room for pushing around a wheelchair or walker? Would I be sitting high enough to view all these operating model railroad layouts? Squeezing into crowded areas would be difficult or impossible. On the other hand, I could use this walker or chair to hold stuff that is usually slung over a shoulder which would help my spine too.
I really don't know what the answer is at this point. A part of me still feels as though accepting even temporary help from a wheelchair or walker is somehow 'giving up'... but, I have to say that some of those walkers and wheelchairs were looking mighty nice when I was in pain at the train show this past weekend!
Maybe I need to design one specifically for my own needs... for only certain limited times...
EDIT - 5 Feb 2016: I've been continually thinking about this issue over the past week. I am not ready to emotionally accept that I sometimes need a wheelchair or walker of some sort.
Sitting in a wheelchair or even one of those walkers with a seat would only cause additional problems while solving just one... giving my screaming spine a break. Here are the problems a walker or wheelchair would introduce to an already painful problem:
1. If I sit in a wheelchair or on one of those walkers with a seat, then I will be sitting too low to view any of the model railroads... rendering this potential solution useless.
2. Even when I am feeling relatively "good", I am still in considerable pain. When the pain is so bad that I must get off my feet, my spine is extremely sensitive and in excruciating pain. Any little bumps we roll over in a wheelchair or, worse yet, one of those walkers with a seat with small wheels, will cause terrible pain. If rolling over small bumps is extremely painful, I'd might as well just continue to struggle with walking.
3. Dragging one of these things around until I need it... or until I might need it... would be a pain in the butt. As a result, I would probably just leave it in the trunk of the car... then I would feel bad about sending someone back to the car to retrieve it when I do need it. I don't need to be putting myself on a guilt trip any more than I already do because of sudden changes in plans due to my health.
For now... this train of thought of purchasing a walker or wheelchair is a dead end... I feel that if I give in and say, "Okay... I will use a wheelchair occasionally" then, the overall condition of my spine will just deteriorate much more quickly. I must keep on moving...
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