Is your life fulfilling?

2510-
It is common for people with SCIs, and their doctors, to believe whatever pain they suffer is due to the SCI. In one sense that is true- the nerve damage will amplify any pain, no matter the source. The key is identifying the source. Likely you and your doctors have tried to thoroughly investigate the source of your pains but have you considered these contributors?

We in chairs usually end up with slouchy, poor posture. This constricts digestion. breathing, and leads to scoliosis which will cause various aches and pains. The doctors and PTs I've seen in my life have mainly ignored posture, as though it were invisible. Yet when I've found ways to improve it by strengthening back muscles and getting better back support, my pain level has dialed down. There was a period in 2012-2014 when I was often crippled by abdominal pain to the point it was difficult to breathe. It seemed to come on when I was active so I took to my bed often, until I realized that was not helping. If anything, I was getting worse. I joined a gym and began working out. After a bit I noticed improvement and worked harder.

I am fortunate in that I can creep along with a walker for short bits. I can stand, and at that time standing straight was impossible. The muscles and tendons of the abdomen had become chronically constricted. I worked against or through this for a very long time just experimenting with ways of stretching and releasing muscles. I made slow progress such that today I am able to not only stand straight but even put my hips forward a bit. Breathing exercises, or just focusing on breathing so that it expands the tightened areas of my abdomen, has helped. I rarely get abdominal pains anymore.

When I do have pain it is linked to what I ate. Very slowly I've identified many foods that are troublesome for me to digest. They cause bloating and gas. The intestines get inflamed snd swollen. This took years because at first so many things contributed that I could never be sure what was happening. All food seemed off limits and I was happier not eating, which is a poor solution. Yes I slowly identified certain meals that were ok, mainly vegetables and nuts or seeds. From there I could gain a clear space to know the next thing that bothered me. Simple added sauces like mayonnaise made my gut go crazy. Now I have a good understanding of how to eat, though I do not always follow the rule. When I do not, especially eating out, I inevitably suffer a lot of pain and cannot function. Tastes good in the moment but alas...

Most of us get issued a lot of antibiotics during recovery from accidents or when we get UTIs. That throws digestion off in a permanent way as the gut ecology that made digestion easy previously gets ruined. This possibility might be worth investigating for you if you have not already. Obviously I do not know what causes your pain, but clearly meds are not helping. They might be hurting by making digestion and elimination even more difficult.

For people who cannot get on and off the floor to stretch there are curved back supports available you can lay on in bed to stretch out the thoracic cavity and open breathing. I hope you will keep trying things. One never know what might help.

Hello 2510. After reading many items in this forum, I have improved today and think that my approach to the injury was different from others and very fruitful!! I had a skiing accident in 2014 at age 76 that crushed C1 through T1! My outstanding surgeon rebuilt all those vertebrae and put 2 titanium rods in from C2-C6. I was a total quadraplegic for almost 2 months, but was in wonderful Renown Hospital Rehab in RENO, NV. They helped me SO much. I tried to stay positive the whole time which was hard to do. It took 2 months before I was able to finally feel something in both hands. It took another 2 months before I could walk with a Walker. I must say that Exoskeleton certainly helped make that happen (I was a Beta test guy for that in 2014). About a year after my accident, I finally achieved being approximately 60% of my prior normal self and am still that today. My syrominglia was created by the accident and has deterred further improvement.
My balance is poor, I tingle all over, and my hands can not feel any texture (but they do feel temperature and pressure) and they have no sweat. BUT, I can walk (not run) badly, drive well, eat fairly normally, play bridge, and dress myself and shower with many changes that aren’t bad. No sports anymore, but there is excellent TV sports!
I think it is very important to be positive that any para situation can improve to some degree with good rehab help and staying positive. Feel free to call me after 9AM PST at 1-530-559-2106 or e-mail me at thtjr@me.com if you would like more info. Stay positive and keep trying to accomplish the little things. Hopefully, someday you will have a good surprise!

I have only joined today and have enjoyed reading through current and older posts. I am 51 years old and had my accident in 2009 but in same age bracket as 2510. I also still have some of the issues he has mentioned. And I think we have to be careful when giving advice (I certainly don't want to put anyone's nose out joint with my first post) as sometimes it can actually make you feel worse. And one of those things is comparing your injury to someone else's. After seeing a myriad of shrinks over the years, some better than others, I was able to realise that comparing my disability, a T10 complete paraplegic, to say a high level quad, was not a way to make me feel better about my own situation. While obviously I am very thankful that I have use of my hands and am empathetic to those who don't, it doesn't mean my thinking is then "hey, my situation is so much better than this person's and I should be so grateful for what I have". We as individuals are not made up like that. We can only deal with the situation we are in. I'm a paraplegic and I have had to deal with that disability. I had massive issues with bowels for years which nearly drove me to suicide. And it is completely wrong that someone compares my disability with someone who is worse off and infer that I am weak or whatever because I struggle to deal with "just" paraplegia. You can only deal with your issues 2510 and never compare yourself to others. All this does, I know because I used to do it, is make you feel even worse about things. Because on top of what you are dealing with you then have this overriding guilt that you are somehow not as strong as others because they deal with worse situations than yours in a seemingly much better way. When you overcome that at least it's one less thing to worry about. Good luck.

Well said cat, I recall someone posting simular and the comparison stuff we go through. I am a para and yes it sucks, I remind myself how much better my life is with just the use of my arms. I a grateful I am just a para.
The person had posted that whatever level you are at it is most likely the worst thing that has happened to your body and so life changing for you and your family. People always say how great I am doing. But what other choice do I really have. I do a update post each year on Facebook. My one son said, thank you mom for making it look like it is easy for you. even though it is not. I am not one to share my own anger or frustrations with others since there is nothing they can do.there are days I want to b**** about how hard life really is,but I know doing so on here would not work because I do have it so much better than many on here. I got ripped over on aparalyzed years ago. I see people with higher injuries and think how do they do it. We use to travel each year to Mexico but have not in the past 5 years because of my fear of the unknown and how much other help I would need to get into a pool or to dive again. We dove the blue hole and devils throat and loved diving and now it scares me. Plus just the hassle of getting off the plane with a lift, or getting into a pool with help, either getting into a boat to dive, plus having to pay more to get a boat with a lift or paying much more for transportation. Sure we could try somewhere else in the U.S., but then again I am comprising again. I am 58 and think about injuring myself more and being even worse off. We traveled in Minnesota to a very nice resort for my sons wedding, they checked several times about a handicapped room. I couldn't shower alone since the controls and seat were the same distance as a normal tub, the deck was not accessible. I have family in Belize right now but the place they are at is not accessible for me. It's a place they go each year so they do not want to change. So I look at pictures on Facebook.
But I drive, own my own flower shop for 23 years, garden, watch my grandson and for the most part do a lot if what I use to do. But still in the end, I am in a wheelchair and it sucks.
It has been a very difficult week and I needed to vent. I am sorry I feel this way and am only a para verses a quad. But it is still the worst injury I have ever had and life at times is still very difficult.

lavender, noooooo!! Please never say again that you're just a para! Should I be grateful that I'm not like you because I'm a walking quad or tetra, who although is a walker like myself, she is worse off than me? No, tetra has made me feel better about myself because she empathises...she's given me some great advice too which has helped. Just because I'm a walker doesnt mean life is easy even if I dont have yours or her issues. Please never feel guilty for wanting to vent...all SCI's suck whatever the level.

I'm so sorry that someone ripped into on Apparylysed, if I'd seen it I would have said something. Someone said something similar to me on this site that I don't understand their issues which upset me and that was some of the reason that I did a search for others in my position who understand that although I'm a walker, it doesnt make life easy, hence why I am also on that facebook SCI walkers site. I feel so much more accepted there and I know I can complain because they understand. Also, because of that site, I don't feel as guilty that there are others so much worse off than me.
There is a para wheelchair facebook site which you could check out if you wanted to message with others in the same position as yourself....you may feel that you can vent there without feeling guilty

Your son sounds lovely and wise...my daughter is 18 now and has never known me as an able bodied person but she knows me better than anyone else and I can be me with her, when I trip and fall at home, she knows straight away if I'm ok or not, when we are out and about, she holds my hand because she can see the ground is uneven and knows I struggle.
When I do something silly and make a mistake she laughs at me which makes me laugh at myself.

I understand the fear of the unknown...I used to be fearless (part of my old job was to be fearless) and I reveled in the unknown but now, all I think of if I go anywhere is how difficult is it to get around, are there toilets nearby etc.

Lavender.....please vent as much as you want....I hope you also give yourself permission to cry....who cares if others are worse off than you...a SCI life sucks and you have every right to be upset if you feel like it.