Feeling humiliated?

Moss Point, MS(Zone 8b)

I live next door to my parents homestead and know many of my neighbors and their kids going back more than 40 years. Before I became disabled, I was busy with work and my own family. A wave was about all the interaction we had.

The year before disability, I semi retired, got my greenhouse and had a fantasy front yard. I could barely get anything done for people stopping and rolling down windows to chat and admire my flowers. I enjoyed it totally.

Then the yard began a steady decline as I was unable to tend it. Not just couldn't but wouldn't. I feel totally humiliated to be on display in my wheelchair. When I go to the mail box I hide behind the shrubbery if I hear a car coming and then make a hasty trip. I don't have any of these feelings with strangers. So do any of you have similar feelings with old acquaintances or folks you used to work with? If so, how do you deal with it. I get angry with my self because I know it's stupid.

Hughesville, MO(Zone 5a)

Yes, I understand your feelings. You don't have to explain it all to strangers. But family and friends seem to almost doubt our disabilities at first. Sometimes they never do accept it. I went into amnesia from the lack of understanding & support in my family.

You didn't say what caused your disability. Others may already know all about it and want to visit with you, encourage you, etc. I encourage you to talk to family and friends a few at a time. Let them know how you truely feel. They probably don't not want to talk to you. But they sure don't understand why you won't talk to them anymore. If someone isn't understanding it is their problem. Don't let it become yours. Only your body has changed it's abilities. Your mind and spirit are still there. Sometimes we have to accept ourselves before we can help others to accept us.

I hope I helped you. It has been years since I was in a wheelchair but I have had several spells of generalized paralyisis due to unknown reasons since then. They are usually very short spells, a couple days, and come on very quickly and unexpectedly. We can usually piece together the events leading up to them and figure out what caused them after I have recovered. Then I know to avoid those triggers in the future as much as possible.

St. Louis County, MO(Zone 5a)

Twiggy, withdrawing is not unusual when your body and abilities change, I've done it, too. Don't be hard on yourself, but try really hard to force yourself a tiny bit at a time to connect with people again. Gentle Hugs, Cathy4

Moss Point, MS(Zone 8b)

Thanks leaflady, I needed that. When my daughter was in jr. high she was very shy and I'd have to give her a pep talk everyday after school. She'd say "They don't like me. They never talk to me. They never invite me." etc. I'd say "Did you speak to anyone yourself? Did you smile? Did you approach?"

I know I put people off because I can't bear sympathy, I can't keep my house as nice as I'd like, dress in rags to work my flowers, always need a haircut, always sweaty and a million other excuses. I feel very inadequate. With strangers it is so much easier because they can't make a comparison with the old me. Strangers are always polite and accept me as I am.

I have the chronic form of Guillain-Barre Syndrome called Chronic Inflammatory Demyelating Polyneuropathy or CIDP. Nobody, including me and the doctors, understands it. They all think I'm just lazy and sometimes I agree with them. There seems to be no permanent progress. Everybody thinks if I would just exercise I could get back to normal but my weakness ebbs and flows without rhyme or reason. It may last hours or days.

I guess I need to remember all those pep talks and just force myself to carry on and see what happens. Maybe if I wave at everyone passing and spend time on my front yard folks will realize that I haven't turned into a hermit. It's been like I don't exist. I really would like to feel part of the neighborhood again.

I just previewed and saw your post Cathy. I know you are right but it is so hard for me to do. I really don't know any other handicapped people and I guess I'm still in denial much of the time. It's good to know I haven't gone totally nuts.


St. Louis County, MO(Zone 5a)

Twiggy, now you know me. I have a rare liver disease, no one has ever heard of it, they think I'm lazy, have to sleep 12-14 hours a day, I get terribly weak. Please dmail if you'd like to talk privately. It is one thing I'm good at.

Hughesville, MO(Zone 5a)

I understand the ebb & flow of energy. I have Fibromyalgia which is much like Chronic Fatigue Syndrome. Today is not a very energetic day. I had a busy day planned but it isn't happening. Some of my children have it too so they do understand. 2 refuse to admit they have it but they admit to the list of symptoms. One does admit to Adult ADD but not the Fibro. I have ADHD.

Cathy, what is the name of your liver disorder? My late husband had Hemochromotosis.

St. Louis County, MO(Zone 5a)

Leaflady, I have an autoimmune disease, Primary biliary cirrhosis, or PBC. My body is trying to shut down my liver. It is not related to drinking or drugs, as I have never used either. A great website if anyone would like to learn more is www.pbcers.org. There is no known cause, and one medicine that slows it down, but doesn't stop it. Transplant is the only "cure", and then the process starts all over again.

Your husband had a difficult disease, too, I'm so sorry to hear that.

Hughesville, MO(Zone 5a)

Cathy, I just read the article. Very interesting. Are you in stage 4 of the disorder? Are any of the meds mentioned helping you? Or have they been offered yet? A lot of questions I know. As a nurse any medical problem is of interest to me. Autoimmune disorders are so complex because it means the body has turned on itself.

GOD bless and keep all of you.

Moss Point, MS(Zone 8b)

Cathy I read the article too and I just hope research will hurry up, for all of us. I see what you mean about looking normal and yet far from it. That surely would complicate relationships. It's just a fact of life that people believe what their eyes are telling them. I used to be one of those judgmental types because I spent my whole life never having to deal with illness. Also my mother was truly a whining hypochondriac every day of her 94 years and I was convinced that most complaints were not based on fact. My thing is also autoimmune.

Leaflady my daughter got her BS in nursing about 1 1/2 years ago. She won't violate patient privacy but does tell me about some of the interesting cases she deals with. I'm always interested and often just count my blessings afterward. Some days she'll call me on the way home and say it was one of those 5 gallon bucket days. That means her bladder had to stretch that big because she was so busy she didn't have time to go. Other times she'll call me 2 or 3 times in one day saying half her patients went home and she's bored. I know you are proud that you've made a difference in so many lives.

Hughesville, MO(Zone 5a)

My nursing career didn't last very long but during I mostly worked with the elderly and in stroke rehab. That is where my heart is. I grew up helping my mother in a nursing home before laws were passed making it illegal for anyone under 18 to work in one. After that I had so many grandmothers, aunts, etc. that I could hardly remember which resident was which if someone from the state came in.

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