Chronic Disability Chaos

There’s one thing living with this disease guarantees; chaos will happen.

I have this plaque hanging above my living room door to remind me that one must have the chaos to get to the results of living.

Amazon.com: Chaos Chinese Framed Calligraphy Print, Oriental Calligraphy:  Art Prints: Posters & Prints

One moment. One day. One item of chaos and the next little while in my life is FUBAR.

I’ve always tried to be an independent woman who doesn’t need anyone to be happy or whole. This unfortunately led me to also dislike asking for help. Being a single mom made it all harder. Having a child with special needs added more chaos.

Right now I have an awful lot of people telling me how to live my life. I KNOW they are coming from a loving place wishing only a happy life for me. However, that is one thing people who live with disabilities hate the most. The thought that they might know what’s best for my life even though they’re not living it makes me livid.

One friend, speaking to me like I was a child, kept repeating to me “You CAN’T fall again. You can’t. You have to live in a way so you don’t fall.”

I was living my life. I was doing what anyone else who lives in MN does. I was snowblowing my driveway. Like I’d done many many times before and because I AM capable of doing so. Think it’s OK to tell someone to not do what they can because something “might happen?” Do you tell your kids to not grow up because something “might happen?” For heaven’s sake no one lives in a bubble. Anything can happen to anyone at any time. No one wants to live in fear.

This same person told me he was very angry with me for not asking him to do things for me. I do and have asked him to things for me that I CAN’T do. Why should I ask people to do things for me that I CAN still do for myself? Because I “might” get hurt? Because it will cause me some pain to do it? Do ya’ll have any idea how much pain I live with? LOL! Plowing the driveway only causes me as much pain as mopping my floors. Should I not clean my home either?

This image has an empty alt attribute; its file name is see-me-despite-disability.jpg

There was this other guy who I thought about dating, but he told me I posted “so many things on my facebook page that were about chronic illness and pain,” so he figured that was all I was about or perhaps I was making up how much pain I was in. I post about pain so my friends can learn what my life is like and know when things are good or bad. I post because I’m not often out in the world to see anyone in person and talking on the phone is difficult with hearing aids sometimes.

I have a plethora of friends telling me to make sure I always have my phone with me. I was outside in my own yard snowblowing. I didn’t put on my hearing aids because the plow is so loud. Why would I bring my phone that I wouldn’t hear either? Do YOU always have your phone on you every moment of every day? Do I remind you all of the “I’ve fallen and I can’t get up commercial?” The commercial for elderly people. It’s a commercial about wanting and needing to be able to live on your own despite illness or disability. People are only seeing that they fall and need help. They aren’t seeing the happy person living their best life.

So I was living my life and something happened to me that can happen to anyone, but I get messages to take better care of myself. I get messages that it’s my fault I got hurt because I should know better than to do things for myself. I get messages that I’m a lesser person and must rely on others at all times and if I don’t then I deserve the consequences. The message is that I should do nothing, not even the things I am capable of doing.

Even my son, also with the same bone disease and living with chronic pain and disability, wanted to punch the friend talking to me like I was a child. I realize it’s the “way” he was talking to me, the words he was using that my son and I took offense to. I realize he had no intention of making me feel like that. I realize he needed to make himself feel better. But, I simply don’t NEED him to do things for me that I don’t want him to do! I don’t need “taken care of.”

I complain when I DO ask for help with something and then no one is there for me. THAT’S frustrating. But then when I do for myself I sure get a lot of people angry at me for doing something on my own. I’ve been snowplowing my own driveway for years, despite the pain. I’ve asked for help when my snowplow was broken and not received it when I needed it. So, no, I will not stop doing it myself when I can.

When I can. Now, I can’t. So, ya it’s still winter so I WILL need help to do the driveway now. I even need help to put on pants, socks, shoes right now. I have to depend on my disabled son for this. I have caused him an increase in his chronic pain since I got injured. I can’t stand up to cook, I need to figure out IF I can drive, I can’t clean the house. Those things I will need help for, for now. And I’ll ask. I am seriously doubting that I’ll get anyone to help except my son and the guy who talks to me like I’m a child. I have friends that I don’t doubt would help me, but they don’t live here, they are elderly, or they are disabled themselves.

Chaos. I like the way life is constantly changing. I can go with the flow. I’m trying not to be angry at how these people think it’s OK to tell me how I should live. It’s happened before, it will happen again. We must push against difficulty to make our dreams. I have a dream of a world where people with disabilities are treated like other people. A dream where simply living isn’t more difficult for us. A dream where whenever ANYONE needs help they don’t feel bad or guilty for asking for help or have others tell them how they should live instead.

I’m just going to add some stuff from the internet:

If you see a person with a disability struggling with something, your first instinct may be to jump in and help. However, without knowing that person’s specific needs or intentions you may be doing more harm than good. Always ask before offering your assistance.

  • Sometimes, a person with a disability may seem to be struggling when they are actually fine. It may simply take them longer to do certain tasks, but that does not necessarily mean they need a helping hand. If you think they might need help, just ask.[6]
  • If you see someone with a disability struggling, simply say “Would you like any help?” or “Do you need assistance?” You do not have to say any more than this.
  • If someone declines your offer of assistance, do not be offended or insist on helping. Simply go on with your day.[7] They know their needs better than you do, and pushing them would come off as rude.
  • Do not offer medical advice, especially if you are not a doctor. While suggesting yoga for someone with chronic pain may seem helpful, remember that person already has a doctor who knows his specific medical history and giving out advice without solicitation comes off as condescending.

Ask before helping out. One of the first responses of many people when they see or meet a disabled person is to try to give them help. While this gesture may seem kind, you could actually be irritating them or getting in their way. Ask if they need you to perform a certain task.

  • “Would you like me to push your wheelchair?”
  • “Do you need help walking?”
  • “Would you like me to guide you?” (to a blind person)
  • “Should I move this chair out of your way?”
  • Let the person tell you what they need instead of automatically assuming what they need in the moment.[1]

Know that disabilities can be more severe on some days than on others. They can waver based on the person’s energy level, the weather, what they did today, their general health, and many other things. Just because someone can or can’t do something today doesn’t mean it’ll be the same tomorrow.

  • Wheelchair users may be able to walk short distances, or may even be able to go without wheelchairs some days.
  • Autistic people may be able to enjoy hugging one day, and be unable to handle it the next day.
  • When in doubt, ask.

DON’T MAKE ASSUMPTIONS
People with disabilities are the best judge of what they can or cannot do.
Don’t make decisions for them about participating in any activity.
Depending on the situation, it could be a violation of the ADA to exclude
people because of a presumption about their limitations

People who use canes or crutches need their arms to balance themselves,
so never grab them. People who have limited mobility may lean on a
door for support as they open it. Pushing the door open from behind
or unexpectedly opening the door may cause them to fall. Even
pulling out or pushing in a chair may present a problem. Always ask
before offering help

It’s about respect

Please read.

I don’t post this stuff for sympathy. I post to advocate for ALL people with disabilities. I post so everyone knows what it’s like. I mean you all don’t go to disability websites, blogs, Facebook pages etc to learn unless something happens to someone you know or love. Well, guess what, everyone needs to know this stuff so everyone can help to make it better.

If you see someone parked illegally in a handicap space; REPORT IT to the police, not the store. They don’t care. I mean, Walmart changed out a bunch of handicap spaces and made them into spaces for people running in and out to their pharmacy. I get it during Covid when pharmacy employees had to be running in/out to deliver, but now? Lazy people park there so they’re closer to the doors if they’re going to the pharmacy or not plus shopping the entire store so the space isn’t available for an hour. Clinics pharmacies put up those spaces, too, but they only allow parking in those spaces IF an employee is bringing out your medicine. ONLY!!!!!!!!!!!! Can people just stop being SO lazy? 3 of those spots were taken up by vehicles WITH proper handicap parking stuff at Walmart today. GOOD FOR THEM!!!!!!! Show people who SHOULD be able to park there.

If you see youth playing on the electric shopping carts YELL AT THEM EVEN IF THEY’RE NOT YOUR KID! The last 5 times I’ve gone to Walmart there have been NONE available and 4 or 5 of them marked Do Not Use: broken. Target has always had one available or tries to find one for you. Leukens? Usually has some available. Marketplace had one available. NO other stores in town have them. Not sure if Home Depot or Menards or Fleet do, but I’ve never seen any available.

See kids (or asshole adults) pounding the button to open the door electronically or simply standing there repeatedly pushing the button? TELL THEM TO STOP!!!!! Ask them if they know how difficult it is to get in a door using crutches or wheelchair, etc, when those buttons are SO OFTEN broken? Tell them they SHOULD CARE because it will be their grandparents, a family member, or a friend who WILL need those buttons some day.

I understand now why my Mom has been refusing the wheelchair for 25 years. It totally takes away your independence! It causes pain to use! (At least for people with multiple medical disabilities.) And she has a husband to help her.I am lamenting the loss of independence and self-ability (is that a word?) I didn’t want to be in a wheelchair at 52, almost 53. No one does. Being single really doesn’t help. I don’t have a partner to help push a cart so I can roll the chair. Take Aidan with me? Sometimes (OK, a lot) I really just want to get my errands done without worrying how bad his anxiety is at that moment. I just can’t do it without him anymore. I realized that today. Had a momentary crying jag in the car of physical pain and emotional frustration. Then told myself to stop and just accept it.

After the fiasco of trying to get my temporary handicap parking permit (back and forth 3 times to clinic to DVS,) on my crutches; I am in SO much pain now. Plus, slipping on ice on crutches makes your back twist. Not fun. I HATE ice melt crystals due to the impact on the environment but USING IT IS NECESSARY. It’s not just a nice thing to do that very few stores use beyond their front door. You CAN’T use a wheelchair on ice! That’s a whole new concept of “sit and spin.” LOL. Walkers, canes, crutches on ice? ASKING FOR PEOPLE TO HAVE A BAD FALL. Please ask your stores to use ice melt on their sidewalks and maybe even around handicap parking spaces.

Walk Safe This Winter – Newsletter – Orofino Physical Therapy

ALSO, snow/ice from shoes/boots tracking in/out of stores NEEDS TO BE WIPED UP ASAP!!!! I almost wiped out slipping on my crutches on melted “water” at 3 places today. Businesses in northern states should just KNOW that once the sleet and snow falls they need to have at least one employee on each shift mopping up water all day long. Is it a sucky job, sure, but do you want your customers to come back? Do you want to be sued, or at the very least have to pay for someone’s medical bills? When you’re on Medical Assistance and go to a doctor for an injury they send you a questionairre EVERY TIME asking if you got injured at home or elsewhere. If MA can get out of paying a bill they will go after the place where you got hurt – even a friend’s or family member’s home.

I'm scared to go outside because my crutches slip on all this rain, ice and

Honestly, people still stare???!!!! I thought people had got passed the whole staring at someone in a wheelchair. I’ve never had SO many people openly gawking at me and talking about me until today (that I know of, tee hee. Let’s not think back to some of my hair color choices.) I was pushing a cart while wheeling the wheelchair. OMG must stare at that person!!! No, it wasn’t easy. Do you KNOW how difficult it is to go around corners with one hand? I was doing pretty good. Had the cart hooked on the front joint of the foot steps of the chair so I could go in straight lines. Not too bad. Had to lift the cart off every time I had to turn a corner. I saw 3 other people in wheelchairs, but they had grandchildren or husbands pushing their carts. 3 other people asked if they could help me. ALL OF THEM WERE AT LEAST 80 YEARS OLD and walking slowly themselves.

Place For People With Disabilities - 'It's Rude Not To Stare' A smart copy  twist on a familiar phrase champions the brilliant athletes competing in  the Paralympic Games #paralympics #games | Facebook

I had SO MANY more people push their carts out in front of me or walking out in front of me making me have to suddenly stop. PEOPLE ARE JUST SO RUDE AND UNCARING! Even at the self-checkout the Walmart employee just stood their and watched my struggling to check and bag my groceries. All my 5 items. Grrrrr. What are they being paid for anyway?

A poem i wrote. (C) SJB #disability #disabilities #poem #poetry  #poetsofinstagram #SJBpoetry | Writing groups, Words, Poetic quote

There were nice moments. When I got stuck between the door to the milk jugs and my cart a lady stepped in to help. When I was leaving the store pushing the cart with my chair a young man who had already entered the store turned around to help me get to my car. He said his grandfather had been in a chair. He understood. Then when I was lifting the chair unstably into the car the elderly lady in the car next to me came to help. With my feet in so much pain my balance is shot to hell.

17 tips for talking to and acting around a person with a disability - Rare  Gems Blog

Maybe it’s due to growing up with a disabling disease that most family members had. Maybe my parents just raised us better. My siblings and I ALWAYS stop to ask if someone needs help. We hold open doors. We reach for items for others. Common courtesy is gone. Now people would rather video you on their phone and laugh. People with disabilities just have to think outside the box and figure out how to do things on our own in a world built for healthy physically fit people obsessed with themselves.

Common Courtesy by Steve Gergley - FICTION on the WEB short stories

The Walrus in the Room

Yes, I know the usual adage is about the Elephant in the room that nobody talks about, but there is another more sinister “animal” out there that lurks in the shadows that has come about. Some crass people do talk about it, but those with compassion and courtesy and who were taught “if you don’t have anything nice to say, then don’t say anything at all” will keep their thoughts to themselves.

Not all of us were born with the genetics to look like a supermodel. We don’t have the willpower to eat like a rabbit either and nibble on broccoli and celery all day long either. The idea of starving myself just to placate the mass hysteria of what a woman “should” look like according to some stale male ideal is just NOT in my mind’s selection of best hits.

Being born with a genetic disease that causes my ribs to form a barrel that sticks out a bit more than the average Joe, it can make me “look” a bit heavier as it squishes my fat out the bottom. You can also look at every person on that side of my lineage and we all look the same: short, squat, and big tummies. No matter if we are in great shape physically or not, we carry our weight in our mid-section. Yes, we look like pears, or Walruses. Average sized heads on top and not necessarily overly large breasts (there are of course some, we’re not cookie cut-outs,) then the big middle, and slim back down to the legs, with these flappy things called arms sticking out on the sides.  Sound like a walrus?

So, OK, if we gain weight and get overweight, we gain it in the belly area. Nutritionists and doctors will tell you this is the bad area to gain weight. We already have medical problems due to the Osteogenesis Imperfecta, now add the heart disease issues. I also have fibromyalgia and arthritis. I am supposed to work-out, get exercise. When you’re in chronic pain what kind of exercise can be a good question.

Yoga anyone? People with big breasts complain about trying to do yoga saying their breasts get in the way. Try doing some of those poses with a belly you can’t get around and joints that won’t move. I’m not saying I don’t want to move them due to pain. I’m saying they WON’T move. Some of them have been broken too many times. Calcium build up or bone spurs cause them to NOT move. Sometimes there may be pins, screws, plates, or rods in the way. So, how am I supposed to lessen the big belly? I am not going to starve myself. We must modify yoga poses. We still get some benefit from the poses. It’s still better to do what we can, than not do any of them at all. On days when there’s not too much pain stopping us. You ladies with the big breasts? Bring it on! Bunch of complainers.

“Oh I can’t find a bra to fit.” Oh whine. I can’t find parts for my wheelchair that I can afford. Cry me a river.

Sorry. I get carried away by what some people whine about in our first world problems. I keep looking until I find what I need, because I can. WE can, because we live here and not in a 3rd world country.

Anyway, next try: swimming? Try to find swimsuits for walruses and then actually go out in public wearing them. The same goes for the clothes in the yoga classes I s’pose, but I just wear sweats there. I don’t go in for the skin tight yoga pants and tiny workout bra in public. What’s the problem? People! Yes, they DO talk. Apparently they didn’t listen in Kindergarten when they were told it’s not polite to whisper about what people look like. Heck, some of those people will talk out loud to each other about what you look like. It’s not nice.

Who said workout pools and spas and yoga places were for fat people? Do you see a lot of fat people there? Not usually. They are full of skinny people wearing the latest workout fashions built for size zero people. Know what else they do? They take pictures and send them to their friends on social media! I don’t know about you, but I don’t want to end up “trending.” Even if you go to the beach to try to do your workout in a lake or river you have to deal with rude adults and children. “Look at the whale trying to workout!” No, I am a walrus.

Tai Chi Chih can be OK, if not a very good cardio workout. If you haven’t heard of it it is a series of 19 movements and 1 pose that together make up a meditative form of movement to which practitioners attribute physical, personal and spiritual health benefits. Obviously this is a lesser physically stressful version of Tai Chi. This can be done by the elderly in nursing homes, so I should be able to do this, right? Sometimes the nerve pain in my shoulders can NOT even handle this! Doing Tai Chi Chih on one particular day sent me to the floor in excruciating pain. OK, I could do the leg stuff, but not the arm stuff. It really sucked. Kinda hard to get to the spiritual health benefits when you’re on the floor “praying” for the pain to stop.

I have pah-lennnn-teeey of physical therapy exercises I’ve learned over the years that I’m supposed to do at home. Just need the willpower to do them. You know, this is why yoga and all those other things are done in groups. People like to do things in groups. Part of it is about the socializing of it all. Actually being able to GET OUT OF THE HOUSE would be nice once in a while. I know, a person learns what PT they are supposed to do one-on-one with the therapist, then they are supposed to keep it up at home. Boring! Why can’t they get together with other people who are supposed to do the same type of PT and do them in groups? We could tell each other if we’re not doing them right. Breathe right. Tighten our core. Get some needed socialization, too. The best part; no one to be there to mock us!

You know what those walruses sound like, that barking sound they make? They can get really noisy when they are in a group. When they are in a collective group they are called a herd, pod, or huddle. They do indeed sound like they may be mocking each other sometimes, especially when they call each other out to fight. Maybe I’m not the walrus. Maybe the dark animal lurking amidst our society that makes us feel not right according to the way we look are the walruses, lying around in their huddles mocking everyone by how they look. Their “barking” is annoying and I say we ignore them, dress however we want, and exercise however we can. If they’re the walrus in the room, then what animal am I?

I’ve Found Bigfoot!

Now, before you get all excited and start waiting for me to download great pics of this thing I have to warn you-it’s not what I expected at all. As they say a lot in Hollywood movies, “I thought you’d be a lot taller in person.”

For starters it’s a She and only about 5 ft. 1inch tall and lives in MN. She doesn’t really have a very big foot at all. Only ’bout a size 7 1/2. I guess she could kick your ass with it though. It would depend on just how badly you had pissed her off and what day of the week it was and what the weather was like. She can get a little ripe. That depends on several factors. Apparently taking a shower can be painful.

OK. OK. I give up the gag. You’re too smart. Yes, it’s me. I can get as hairy as the Hendersons (insert movie reference.) It’s really not my fault. I blame the Osteogenesis Imperfecta! I blame the fibromyalgia! I blame the Joint Hypermobility Syndrome! I blame my gad dern body. It just doesn’t want to obey. I have several medical/physical issues that cause chronic pain.

Chronic pain can cause even the most mild human being to roar like a forest monster. The poor cashier at the grocery store won’t know what hit them when I’ve been through their isle on a bad pain day in a hurry to get home to my comfy chair. The phrase “bit their head off” comes to mind. Sound a little bit like a grumpy hairy monster-like fellow?

The fabled beast has been noted to walk funny, or have a rambling gait. I have no idea why HE does, but my mobility problems are because I have bone spurs all over the place and arthritis in my joints. That causes me to walk slowly, rambly and funny and makes people get mad at ME! Well, toot toot, go around me if yer in such an all-fire hurry. Geesh. I try to stay close to the side if I’m going up or down stairs just so people CAN go around me, but I still have to listen to their grumbles about my slowness. On the days when I’m in a wheelchair; holy cow are people rude!

I’d like to see the big furry guy in a wheelchair. I’m betting no one would be rude to him.

Even if he smelled like a boy’s locker room. Well, I don’t get THAT bad. There are times when I have to go a few days without a shower. I just can’t lift my arms high enough to wash, or I just can’t climb over the side of the tub to get in. Especially in the summer this can lead to some smelly situations. I can’t afford to have A/C, so my house averages about 90 degrees Fahrenheit. You can understand where I’m leading about the smell? A few days, or weeks, of sweating in my bed and not being able to change the sheets by myself…you get the idea. I don’t even think the Yeti would want to come cool me off.

Without being able to wash means, yes I also can’t shave my legs. Good thing no one is currently running their hands up and down them except me. To put lotion on! Wow. Get your minds out of that gutter! So, anyway, I am quite furry and alas the Bigfoot sighting. It’s been a while now. You know what it looks like when you’ve had a cast on your leg and you get it taken off? You grossed out now? Well, it’s not THAT bad yet. Just thought I’d give you a fun visual. LOL! Not quite man-hairy, but not very lady-like either.

This is no way for a single woman to live. THIS is not very “come hither-ish” quality to catch a good date. Ya think? How ’bout that bigfoot? Think I could catch him? He might be available…