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Ideas for pain relief from Small Fiber Neuropathy (SFN)
Neuropathy | Last Active: Apr 26, 2024 | Replies (449)Comment receiving replies
Hi Rachel. I know how you feel about the changes in your life. Some people mark the time by important events in their life - like a marriage or the birth of a child. I mark time by an event that happened on April 27, 2012. My whole life changed when I became a paraplegic. I had been newly married, just 10 months, and suddenly I could no longer move at all. I could not sit up to feed myself, I was incontinent, and I could not even dress myself. I was hospitalized for six weeks. Because I was bedridden, I had multiple pulmonary emboli which were life threatening. I remember the doctor in the emergency room asking me for the telephone number of my next of kin. I told him to hang a bag or two of heparin and that I would be okay. It worked like a charm. But I still couldn’t take care of myself and I needed a lot of therapy to teach me how to live in a wheelchair. The burning, stabbing pain was there particularly in my spinal cord where the injury happened and also in my legs and hips. I had horrible leg spasms and my legs would go flying up in the air. I had no control of my body. I just wanted to get better. I truly believed that I would walk one day. That never happened, but with five years of intensive therapy, I can walk for a very short distance in a walker, probably only about 20 yards. I did discover how strong I was in spirit. I never gave up and even though I am wheelchair bound, I can take care of myself now. I miss being able to travel though. I am restricted by the pain and the difficulty of going more than two hours in the car. I really want to take a trip for the next birthday. I have looked into taking a cruise, but after seeing what happened to the passengers on the cruise ships with that virus from China, I think that I will forgo any trips on a ship. There are some train trips, but I don’t know how I will travel with my wheelchair and a suitcase. I need two hands to get around in the chair so how do I handle that suitcase? I will figure out something, I hope. My husband hates to travel so I will go alone when I figure out where I want to go. I need to carry a lot of supplies because of my incontinence. That is the worst part of being paralyzed. I hate the pain, but I have learned how to live with it. Because I am now in kidney failure, I have to pay a lot of attention to my bathroom issues. I am also on a strict kidney diet, so eating out is a big problem. Okay! I have unloaded today. We all need to do that sometimes and this forum seems to be the right place. I’m not depressed, just frustrated. I miss being able to walk in my house. I hate cooking from a wheelchair. I drop things all the time. Yesterday when I was taking a big jar of rice out of the pantry and I dropped it on the floor and there was rice all over the kitchen. Oh well, we all have myriad problems associated with our neuropathy. I feel better now.🤪
Replies to "Hi Rachel. I know how you feel about the changes in your life. Some people mark..."
YOU are an amazing woman and remind me alot of my Mom. She was blessed to walk again after a motorcycle accident that broke both her legs. She spent much time in a wheel chair over decades but fortunate to have not been paralyzed.
You politely snapped me out of my pity party and proved that life challenges come in a multitude of examples and degrees. Thank you!
~Rachel
P.S. My Mom was/is a daredevil too and I love that about her!
@darlingtondoll, I have read every word of your post and even caught those feelings that creep in and make a strong statement.
I just completed my first travel adventure with medications, injections, incontinence supplies, foods, beverages, appropriate shoes, and clothing. My first flight took me to Austin, Texas to spend a week with my adorable grandchildren, Jay Paul and Amelia Marie. I made it even though the security lady still had to check out the pocket area around my crotch even after I told her I didn't have any pockets. I kept my cool.
My life partner carried a lot of items for me and made sure I was comfortable and not being harassed or yelled at. So...if you want your best chance at not having to be wanded and searched, then no zippers, no metal of any kind, no wide-leg pants, no body lotions or powders and nothing from the TSA no-can-do list for medications. Don't forget...no ice or water/liquids until you are seated on the plane.
Have you looked at adventures that include accommodations for seniors with mobility issues or disabilities? Are there caregivers who could help you? Is there funding available for that kind of service?
I have not wanted to risk a cruise either.....especially when I am not able to take care of myself totally. If you do decide to cruise, be sure you work with the special needs staff on board. They will help you get through security on and off the ship. I also think they will do everything they can to prepare your special menu and support your mobility.
So was it worth it...? Oh yes, it was. The two images with this post will tell you that....I was just as happy as a lark. So what else will you need? You will need rest. I couldn't believe how fatigued I became and how many naps I took. Without enough rest, the pain associated with this endeavor starts to build up.
You are right next to amazing. Chris
Darlin;This is just awful I’m so sorry
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Hi, @darlingtondoll - you must be one determined lady to make it through all of what you described. That's really a lot to deal with daily.
I'd suggest, long term, anyway, not giving up on the cruise. My family is actually going on one to the Caribbean the end of March, and I truly hope nothing with coronavirus is in the picture. Our previous cruise was one of our best family vacations ever.
When we traveled to Italy for 10 days, my husband just brought a large backpack. Would it work to handle a backpack with your belongings (on your back or on the back of the chair), darlingtondoll, say, if you went on a train trip?