Neuropathy, Spasms and Daily BSS Life
How BSS patients describe their neuropathy pain.
Neuropathy pain may vary, change, and feel multiple sensations at one time. Also reported is crawling under their skin, electricity, jolts, and more. Hypersensitive BSSers may feel an intensity of any of these sensations when their skin is touched by clothing, shoes, sitting in chair, a breeze, water , metal or touch or others. Sometimes a sensation that isn't normally painful may feel extremely painful and vise versa. (such as a droplet of water hitting the skin may feel like being cut with a knife, where as an actual cut may not cause any sensation)
Shoes/clothing worn on the hypersensitive side may feel tighter or create an increase in the neuropathy.
Be aware that one side might have a lack of sensation, and it may also be hypersensitive, yet it may not feel the formation of blisters from rubbing shoes/fabrics, cuts, burns, heat and cold. Always visually check your lack of sensation side, especially if you notice an increase or change in your neuropathy.
How BSSers alleviate their neuropathy-
1. Socks- adding another sensation may send a new signal to the brain and lessen the perceived painful neuropathy.
2. Compression- The same as socks, but the added pressure may increase the relief.
3. Massage- While it may be an unbearable thought to get touched on your hypersensitive side, some report a calming or an increase in their tolerance for touch from having regular massages or gentle touches over time.
4. Medications- See the medications page or the survey repsonses for nerve pain medications.
5. Adding a pillow between your legs while sleeping, under your leg while sitting or under your arm so it doesn't touch your side mayhelp quiet nerve pain.
6. BSSers notice an increase in their neuropathy when they are tired, stressed or did a lot physically. Take time to recharge, rest and destress.
Try a pair of socks to help nerve pain
Wearing socks or compression socks might ease nerve pain
Take time to destress
Many BSSers report how stress increases their neuropathy pain. Take time to relax and recharge after doing work, traveling, cleaning, stress or doing more than your average routine. What maybe be doing a little for a person without BSS may be a lot for a person with BSS.
Be kind to yourself and don't compare yourse'f to those without BSS. Rest and recharge.
Brown Sequard Syndrome LIVING- work, hobbies, daily living adjustments
WORKING-- Below you will find fellow BSSer's responses about returning to work.
Brown Sequard Syndrome
" I was a homemaker before my SCI. So far (almost 3 years) I have not been able to keep up with daily housework by myself."
"No, I haven't returned to work. I was a full time loan coordinator at local financial institution "
"Yes, I returned full time"
" I am fully disabled on SSDI. I was a bus driver for 20 years, cannot drive a car at all"
" I retired from work outside home. Took care of 12 acres, 16 dogs; cats, goats, barn,. 4 level 3000+ sq ft home. Cooked, cleaned, shopped, did yard work, cut grass! Threw bales of hay, carried 50# bags of feed! I was a go getter, hard working woman!!!"
" No, I could never return. I was a financial services representative. I don't have the capacity anymore to do high stress financial trades of millions of dollars without making mistakes nor can I take in all the information required to know about all the 100's of products like I used to be able to do. I no longer can sit, stand, or walk to hold a position anywhere. "
"No, I haven't returned to work. I was a short order cook at a bowling alley. It was very hard work when I was able bodied, and there is no way I could even dream of doing it now. "
"No I haven't returned to work. I worked with children severely affected with autism."
" I was a construction worker. I was retrained by rehab money to be a clinical social worker."
" No they said I will never be able to work again I had ran my own home day care for 18 1/2 years "
"Yes, I returned to work, as programmer/coder you have a perfect work. Working from home."
" I have been declared wholly disabled from my career, currently on long term disability. I was an early childhood special education teacher, specializing in autism spectrum disorders."
" I was a Biologist technician in a lab prior to injury, and became an administrator after the injury."
"Yes, I returned to work, but I'm compromised...I'm slower (I'd like to say more deliberate, but things take me longer to accomplish)"
" I'm an artist, so I work when I feel well "
" I went to college and have worked in Travel and Tourism Industry for 20 years F/T. The last 8 years i've had more mobility issues due to my SCI plus age/pregnancy - so i'm now working full time from home."
" Yes I returned to work. I can not hold a job that I'm expected to be present on certain days or times. My body is not reliable enough for a employer to depend on me "
"I did not return to work. I did computer work. I know I am not physically reliable. So instead I volunteer my time. I know I don't "Have" to be there. I also sell things on Poshmark. Both help me to feel like I contribute."
34 out of 52 did not return to work. The rest returned to full time or part time work. Some changed occupations in order to accommodate their new needs.
The decision to return to work is up to you. It may bring feelings of guilt for not being able to contibute or for not being able to continue your life the way you knew it prior. Only you know if you can continue working the way you did prior. You know your limitations. Have honest expectations.
Some people may react as though you have it easy because you're not working or even that you are lucky because you can't work. You can try to educate them but you don't have to convince them.
Many people do return to work and some decide to embark on a new career path. Discuss options with your doctor, your family to decide what is best for you.
HOBBIES
Many BSSers started a new hobby. Some create to sell online and others for the enjoymement.
" Adult coloring! I LOVE it!!! It helps me with fine motor skills (I lost the use of my previously dominant hand with BSS) and is very, VERY calming. It forces you to focus on the task of coloring and, sort of, eases my mind of anything else."
" coloring, crafting, reading more"
" Facebook!!! LOL!!!"
" Spending way too much time online now. Was a troll for years on YouTube and then gave that up and started support groups instead. I used to do Case Management prior to my finance career so I went back to that and help people with health issues. It's all volunteer as I can only do this when I'm able to stay awake long enough."
" Fiber spinning, crochet, knitting, needlework, herb craft, gardening, social and political activism"
" Raising African Violets"
"Doing the old hobbies again. Piano playing, reading books, making music production with my daughter."
" Computer Aided Drafting, Vintage audio repair, Watching British murder mystery shows"
"Crocheting, painting'
" Yes some car repair and cosmetology/hair."
" Reading, binge TV, bridge"
" Collecting and playing magic the gathering card game and geocaching."
" quilting. daily gym workout"
" Hiking. Cycling"
"I can't work now, so I volunteer bits of my time, in areas I find exciting. I try to help others with BSS and give back."
Daily Living Adjustments
BSSers needed to make some adjustments to their daily lives. Here are their suggestions-
" Just do little bits throughout the day, resting in between lessens getting overtired "
"Have someone help"
"Take breaks to rest my legs"
" I do online shopping for food, I do the dishes slowly and I have help with the laundry"
" I hired a cleaning Lady. I order my groceries on line from Amazon Prime, I use Instacart and Shipt."
" I have a PCA worker who helps me with everything I cannot do on my own. I also now live in a handicap accessible apartment with underground parking and storage so I don't have to shovel my car out of the snow.
I use a cart to haul my groceries and packages from my car to my apartment. I made trips more often to the store so I didn't have to walk too long or lift too many bags.
I put my cat's litter box near the toilet so I could sit on it to clean out the box and bought a litter genie to put his mess in until I could get it out to the trash.
I used a cart to put the trash on, take it to my car, and then drive it to the dumpsters to empty.
I don't do heavy housework without help."
" Everyone needs a grabber! It helps with laundry, picking up things off the floor and more! I also have a stool beside my stove so I can sit and cook."
"I have a big shower with grab bars. I use a wheelchair in house and a cane. I also made my house wheelchair accessible."
"Take plenty of rest breaks"
" I’m mindful about what time of day I do things, how long an activity might take as I get tired. My pain limits my activities significantly, I need to get things done by 2pm as the pain is out of control daily by then."
" I have bought a Roomba to vacuum and ask others to clean areas I can 't."
" I try to wear clothes with less buttons. I found a way to lean against my bed to help put on my pants. For cleaning, I am just slower. I have to pace myself. To clean toilets and showers,and such. I use cleaning products that can be used "as you go" are helpful so that more thorough cleaning can be done less often."
"I purchased a electric, rotating brush with a long handle. It has different brush heads. I use it to clean the bathrooms. No bending over and it does all the work."
" *Shower bench *Clothes with no buttons or laces *Cleaning lady since i can't reach high or low *Use electric carts at grocery store/Target *Hubby does all the physical stuff around the house."
Most of the responses were- to do things slowly, pace yourself, take breaks, don't over tire, hire cleaning people, use delivery services for meals/shopping, have help with anything heavy and simplify your life as much as possible.
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