I've been frustrated by the inconvenience of SCI over the years. "Do I really have to adapt to this?" Yep, I sure do have to...to darn stubborn not to!
What is really frustrating, among many other things, is having 2 flat wheelchair tires on the same day!
Oh-oh, I just made the decision to replace my worn-out solid tires with inflated!!! Hope I don't wind up with 2 simultaneous flats... I really don't want to carry around spare parts, especially bearings and the tools needed to replace them! Note to self: travel to places where I speak the language!
I see an Exercise Physiologist three times a week and do hydro once, but that is all I do outside the house. The lengths we have to go to to make sure somewhere is accessible just angers me. No friends have houses I can get in to. I also feel like I don't have anything in common with my friends anymore. In the end I end up going no where. And my anxiety fights me from leaving the house. I know this is not good. I'm trying to work past it. I've recently made friends with a girl of a similar injury level. It's good to have someone to talk to who has similar issues. She is very outgoing and I am hoping it rubs off on me.
You are still relatively new in your injury, and sounds to me as if you are making the right moves to come to terms with the "new normal". Great that you have found a friend in similar circumstance who can really relate, and that you enjoy being with. From other Aussie members, I think you have more challenges in accessibility than many in the forum. (Ask Butiki about his bush wheelchair!!!)
Most of us have experienced loss of friends that we cannot share activities with any longer. They could adapt to our circumstances if they really valued us as people, not just companions in activity. Guess that is rare. Even my real friends live in inaccessible houses and fear that I will pee on their furniture or leave wheel marks on their floor. My B&B anxiety keeps me home when necessary. And inviting people over is very uncomfortable since my potty chair is in the kitchen (only way I can use it), because I cannot get to second floor to use bathroom. Just the frequency and length of time it takes for B&B freaks out my AB friends. Part of coming to terms with SCI for me was letting go of people to whom I had to justify myself, or those who were toxic (critical, mean, mocking)--and then overcoming vulnerability in reaching out to new people. Another part was finding new activities to replace the kayaking, rock climbing, hiking, and biking that I loved and were my stress relief.
With my disease that caused SCI, I don't have energy to spend on anger, but I do get frustrated with limitations. Finding stress relief and enjoying what we can do helps ease the emotional pain. There is still the need to grieve losses, but not get bogged down in that. There is power in knowing that we can make choices that improve our outcome! And I am very thankful for this forum to share with others and learn from them.
hobo, thank you for sharing what has given you strength. I cannot imagine dealing with SCI before the information/support sharing that the internet has provided. What you have posted lately in this and other threads has been most helpful to me!
wavewolf, your post above to Kjp77 was spot on to my experiences with past friends and access... My injury was long before the internet and I just reinvented the wheel as I went not knowing how other people did things. I have to say though that when I met my darling Patricia she lived in a 2 story apartment with a big entry step. I'm glad that I learned early on to crawl up stairs!
Wow, this is a thread that I have been needing the past few days. I am that guy that has let the depression and anger take me to the lowest of lows. I've turned to over indulging in alcohol and drugs to hide the pain. I am thankful that I am not dead after those years. My wife came into my life after my SCI and for that I am thankful. However I didn't always act like I was. Thankfully she saw past that person and loved me for who I am stuck with me during those dark days/months/years.
She finally convinced me to talk to a doctor regarding my depression. I had agreed many times but for some reason I always "rescheduled" the appointment. Finally i made it. I did agree to Cymbalta because some people had found some Neuro relief with it. So I wasn't doing it because I was crazy, it was to help my feet and legs. Well the feet and legs aren't getting much relief but my mind has. The past several months, for the most part, have been depression free. I have my days but it is much easier to pull out of the funk now. Before I would isolate myself from everyone. I never contemplated suicide but I will admit I didn't care if I lived or died. I just did not care.
It surprised me when the doctor said I had a form of PTSD. I can see it now and after 19 years of living like this I would love to help others that are new to SCI. I had no one that understood. I had no one that could relate to what I was feeling and of course, NOT feeling. Nothing will ever make me feel better about a bowel accident or blasting a big fart out in the middle of Wal Mart. But I am me and my time on earth may end tomorrow, we never know, but if it is NO ONE can say that Jeff didn't live life to the fullest regardless of his limitations.
Good for you jeff1967! I've had some pretty dark moments but none around SCI. My first wife of 27 years left me when our kids turned 18. She stuck with me for 14 years or so after my injury. I alternated being angry with her and myself. I was one of those guys who felt we were married for good and divorce was a failure that must have been all (or at least most) of my fault. I needed some anti depressants for about 6 months and got back to being my obnoxious self! I've been married to Patricia for 15+ years and it is like a totally different life! She had a spinal tumor many years before we met so she had some idea of what she was info marrying me. Life is good!
Thanks tonka! Sometimes I hate the thought of taking a pill because I cannot handle my emotions. But I can honestly say that my quality of life on that end has greatly improved. I was a pity party waiting to happen and just could not understand why Cheryl (my awesome wife) would want to be with someone like me! My temper was so short that the least little thing would set me off into a rage. Now some of this could be my screwed up genetics too LOL. Regardless, I am very content with taking a medication to help me with those issues. Some people can maintain without and that is awesome.
Cheryl and I will have our 15th anniversary in November and our relationship is better than ever. She still needs to give me kick in the butt (figuratively because I couldn't feel it literally lol) occasionally but the love she has is unending and I consider myself the luckiest man alive.
It certainly isnt the easy road is it! Threads like this and you guys sharing, makes such a difference to someone else who is going through the same.
Especially those who are newly injured.
Lαrα, It is a rough and tough road for sure. There are morning that I just don't feel like I can get up and tackle the day but I dig deep and tackle it head on.
I am finishing a degree in Communication Arts and I hope to someday speak to those that are newly injured. I know that would have been a big help to me 19 years ago. My goal is to reach out and help as many people as I can. We are all veterans of this terrible injury/disease and probably have a world of knowledge for those just starting this long journey.
Absolutely jeff1967..and the degree study sounds great! That was one thing I needed, to be mentally stimulated, I do like to challenge myself ( within some reason of course lol)
Lαrα, I started my degree soon after my wreck. I "strayed" in my ways and learning wasn't high on my priority list lol. Working full time and school full time definitely doesn't give me much time to get into trouble anymore LOL
I have to say though that when I met my darling Patricia she lived in a 2 story apartment with a big entry step. I'm glad that I learned early on to crawl up stairs!
Patricia must be a darling to inspire a butt hop to the second floor plus a "leap" up the entry step!!!!! God bless you both! Here is a saying I like: It doesn't matter where you go in life, it's who you have beside you. One of my dogs gave me a plaque with that inscribed.
tonka and jeff1967, thank you for sharing the dark times and how you got through. Your experience grappling with SCI, the normal crap of life, and now aging is valuable for all to read. You are both blessed with wonderful partners in life, definitely a big plus! And you both are tough men, not afraid to face what stands before you. There is no shame in taking med for emotional support, same as taking pain med or other med to help us cope with other aspects of medical challenges. Long-term depression is a medical condition, with chemical changes to the brain and other parts of body. That is why meds are needed, sometimes just to set things right again and other times to maintain the fix. Cymbalta seems to be a med that is multipurpose, helping stabilize emotions and manage pain.