The last 2 years have been pretty rough. I have experienced a LOT of pain…that eases up but never goes away. I hate the 1-10 pain scale, but a good pain day for me is never a 1 or 2. I had a friend ask me once where my pain was and I told her that she would have to give me a minute. I had to stop and analyze and scan my body to even be able to tell her. Or what kind of pain? Muscle pain? Bone pain? Nerve pain? Joint pain? Yes! I had pain from my neck to my toes. I have also fought terrible fatigue, which has been since day one but much worse when my pain levels are high.
I have tried so very hard to stay off pain meds. I really, really like how they make me feel and I know how very easy it would be to become dependent on them and as long as I can manage my pain without going crazy, I want to stay off of meds! Having said that, “managing” my pain the last year especially has meant having to get out of my chair and lay down. I absolutely have to get off my backside and stretch out my legs to get any relief. However…that sure stops life!!
I have struggled not being discouraged and just concentrating on one day at a time dealing with all of this. I try to do what I can and when my body says no, I just have to stop. I try to stay busy to keep my mind on other things, and the days out of my chair, I try to do computer work. But…the thought of many more years of this is very daunting at times.
But, may I share a HUGE revelation to us that just happened last week?
I have been paralyzed almost 9 years. I was in horrible pain, went to sleep, woke up 24 hours later and was paralyzed. Diagnosis? Idiopathic Transverse Myelitis. My spinal cord was damaged by swelling at the C5-C7 level. I saw about 4 different neurologists in Cincinnati, OH. I went to Cleveland Clinic for a week. I saw a neuro-immunologist at Ohio State University who specialized in TM as my follow up care until we moved away from Ohio. I have seen several physical therapists and since moving to South Carolina, I have had 3 different seating evaluations. In ALL of this time, I have never had muscle testing of my upper body. I had sensation testing (pin prick for pain perception, cotton swab for light touch, hot and cold, deep pressure and vibration) on my upper body and we always knew there were sensation deficits, but no one had ever done isolated muscle testing on all my upper body muscles to see what was firing or not.
Until last week…
I have been trying to get a new wheelchair for the last 3 years since living here in SC, but have had fits with my insurance and finding a wheelchair vendor who would accept my insurance. I managed to change insurance, and found a national vendor that would accept it. Then, I had to make an appointment to a seating clinic in Charleston that has a seating specialist and a large supply of cushions and back rests that you can actually try! It took me 6 months to get into this clinic. I went on December 6, and had a seating evaluation with the physical therapist who specializes in spinal cord injuries and does the seating evaluations.
As we sat talking and her asking me questions for about the first 20 minutes, she said, “I can already tell that you have quite a deficit in your upper body muscles and know that your chair is absolutely wrong for you.” Mind you, this is my first custom chair that I have used for 8 years now! I said, “What?!” She said, “As we have been talking, I have been watching you and you are struggling just to keep your balance sitting.” I said, “Oh I know. I always have.” She was horrified and said that we were going to do upper body muscle testing.
As she kept isolating different muscles in my upper body, my mouth just kept hanging open. She would tell me to move this, push against this, pull this way and that, don’t let her pull or push…and on and on! I was shocked at what I could NOT do. I kept telling her to do it again and to let me try again! I just kept looking at my husband in shock.
She explained that there are lots of muscles in the arms and hands and upper body that all fire and work together in “normal working” people. The muscles are rated on a scale of 0-5. 0 is NO muscle movement at all and 5 is what normal working muscles would be rated. None of my muscles were 5 and only one set of some hand muscles were 0, but most of mine were from 1-3. She said, “It is a good thing no one told you that you can’t do things because you have learned to overcompensate with the stronger muscles to take over the very weak ones. I don’t know how you are not in horrible pain and exhausted all the time!” I said, “I AM!!! But, I just thought this is what 9 years in a chair must look like.”
She went on to tell me that pain and fatigue will always be a part of having a spinal cord injury but that she felt confident that setting my chair up with the proper support for my body will help eliminate a lot of it. She said that my overcompensation has really done a number on my body and it just cannot do it anymore. I felt like crying for joy! Then I felt angry. Angry that it has been almost 9 years and NO ONE ever muscle tested my upper body to know what deficits I really had. Angry at how easy it is to fall through the cracks and not get proper treatment. Angry that I have been sitting in a chair that has not been the best for my body long term and has caused damage. It has hurt working muscles and made them weaker. It has caused my pelvis to twist. I have slight scoliosis, and it has contributed to chronic pain for the last two years. My sweet hubby sat there watching me try so hard to move things and said he just kept choking back the tears. It was really a very emotional day for us. But, at the end of it all, we were both thankful. Thankful that we finally saw hope for some relief for my pain and fatigue. Thankful that we had found the right people to help me, and thankful for the education that I most certainly want to pass on!
I know that not all chronic pain and fatigue may be caused by a bad fitting wheelchair, but after sharing my story with my other wheelie friends this week, this is a VERY common scenario and one that I hope we can work hard to eliminate. If we can help anyone else not go through what we have, than it will make it worth it.
For those who are wondering, here is what she is putting me in…
- Tilite TRA – titanium and carbon for lightweight pushing weight. We are bringing in the front of the legs of the chair, so that it will help hold my legs in and keep them from splaying out which should help with hip pain.
- Java Forward cushion – that will hold my hips in place and stabilize my pelvis. Since it isn’t an air cushion, it will also keep me from constantly feeling like I am falling to one side or the other and trying to keep my balance.
- Roho Agility back rest – with medium contour that will wrap around me to stabilize my core and abs so that I won’t have to spend so much energy trying to sit up straight. It should also help the scoliosis to not get worse as it will help hold my spine straight.
- RibGrips pushing rims – I tried a couple other kinds of rims which are supposed to help with my carpel tunnel pain, but they were too slick and I just could not grip them tight enough to get a good push. So, we are sticking with my RibGrips which I have absolutely loved as I don’t have to grip them and still get a great push.
- Smart Drive Power Assist – she wants me to consider a power chair as a second option for outdoor and harder pushing, but she is going to see how I do with using a power assist all the time on a manual chair. She is concerned for my shoulders and arms and ruining them if I continue the current overuse and strain, but she is willing to try a power assist on a manual chair and watch me for the next year. I hope it works!
This is what she thinks will help my quality of life, but that doesn’t mean this would work for anyone else. Our injuries are unique, our needs are specific, and our equipment should be just as custom. So, please make sure you are getting exactly what you need!
I would love to hear your story about this, so please comment and share with me if you have one!