I had to get my driver’s license renewed because it expired last October during the 2020 COVID lockdown and I was not able to get the license taken care of. I went to the Secretary of State’s office July 6, 2021 and was told that if I’m not driving it’s best to get a State ID until I’m able to drive again.

I was kind of taken back because I realized after driving since I was 14 years old, at the age of 57 my life span of driving for 43 years is over. I felt defeated and emotional. I was thinking how my life has changed slowly over a 30 year span since being diagnosed with this damn disease.

I used to drive manual stick shift for years and loved it! I had to change to an automatic when I purchased my 1994 Honda Accord because my left leg kept getting tired when using the clutch. Then in 2015, my driving got harder because by then both of my legs were tiring out pressing down on the gas and brake pedals. I had to stop driving for long periods of time.

In 2017, things continued to decline with driving and now as of July 6, 2021 as stated on my State Identification papers, I am no longer able to drive. I feel like my independence is diminishing. It was a hard day.

To someone who wanted me to describe my MS. l thought that was an interesting comment. Let me try to write a visual picture.

Picture your body inside a thick puff filled full body snowsuit with pins embedded inside the puffiness poking at your skin every time you move or touch anything, and your torso is being hugged so tightly you cannot take a breath without gasping in pain.

Your spine crevices are filled with water balloons that decrease and increase with every bit of movement made. Sometimes you feel so full from eating so much food that your chest throbs.

Picture your feet in big heavy snow boots and you are trying to walk in 4 feet high snow banks with someone holding your feet down and you feel that excruciating pain when you walk that feels like your feet have fallen asleep.

Picture your fingers intertwined with rubber bands and you’re trying to cut food, putting on clothes, brushing your teeth and hair, type and your fingers are wound so tight with rubber bunds that you can’t get the fingers to hold, open, grasp, pull without pain shooting you your arm to your brain and zapping it with an electric shock like you touched a live electric wire or got jolted with static electricity.

Imagine laying down quietly watching tv and someone shoves an electric wire in your ear and electric shocks shoot across your face and there is nothing you can’t do to stop it.

Picture your skin always feeling like a bad sunburn that never goes away.

Picture trying to walk and your feet stay stuck to the floor like you stepped in rubber stringy cement glue and your legs stay straight and won’t bend and your body leans forward because your legs do not catch up to the movement.

I have more, but I’m just depressing myself now. 🙃

Here’s the best part, I’ve had a neurologist say that with MS there is no pain. I’ve had doctors stare at me with blank expressions on their face like I’m nuts or something. Then prescribe these tests that they stick needles in your skin and turn on electric volts to see where there is nerve issues on top of the pain you feel everyday. The kind that has sweat running down your back and your deodorant fails to keep your arm pits dry. I’ve had people compare their pain like mine and trust me no ones pain should be compared. Each person has their own hell.

Things have been really different for a few years. Moving home and starting over with my life definitely has been a journey. I still struggle with people in my Deaf community because I don’t think they really understand my thoughts or what I try to relay when I write. For example, a friend thought that because I was commenting about things related to my MS and it appeared to this person that I was depressed, lonely and I needed someone to talk to. Actually it was the furthest thing from my mind, I was trying to show how difficult it is how debilitating disease and trying to get things that I need every day for me. When this person mentioned that to me I was kind of taken back by her comment.

When I share some personal things with people because they ask or because I need to just talk about it, it’s very hard to listen to what other people say because I don’t always agree with their logic. For example, I was talking about a situation that happened in my life and how I have learned to overcome that, words that come out of other peoples mouth, well this person is narcissistic. That’s a hard pill to swallow because I don’t see it that way. Sometimes I get emotional or sensitive about things that I’ve shared it affects my mobility really bad and I have to sit back and wonder if while other people are saying about my situation is really accurate.

It amazes me at times when people that I’m very close to seem to think that they can say stuff to me about my appearance or my hair and compare me to something that’s ugly and they think it’s OK. I don’t do that to people all and it just surprises me that it’s done to me. Sometimes I can’t help about the way I look because they are times I just can’t do a lot because of my issues with my MS. Honestly, I don’t think that I should had to be presentable someone just because they think I don’t look great knowing what my situation is.

I don’t think I’m making a whole lot of sense on this blog post but I’m getting it out because it’s bothering me and I’m trying to figure out some stuff.

Been researching all morning for transportation services to my doctor appts. Cheapest one transportation is a fee of $35 plus $3.25 per mile. Doctor is 35 miles one way, 70 miles round trip Equals out to $262.50 per visit, plus my copays for appts. Very frustrating and so discouraged by this. #mymsandme

I do not expect people to understand my life and my disease. I have come to realize in the last few years of becoming more wheelchair bound, people have either become insensitive or just do not get it. I want to lean towards do not get it, but there are friends who are just too damn insensitive and think that I am too harsh to them when I stand my ground or really have something to say.

The way I look at it is this: if you are not going through a disability that robs you of the everyday THINGS that you, yourself can do without struggle or even think about it, you do not have the right to voice your stupid ass shit about anything.

Do not feign such a surprised WOW, look of shock, or hurt if you feel offended by my comments. When things change daily in terms of people, help, medical, life, government, medicine, food, car, support to me, it is a big fucking deal. Just shut the fuck up and show compassion or say How Can I Help? Otherwise please do not show your look of surprise if I snap your damn head off.

My life, my money situation, living on SSDI has taken such a huge toll on me stress-wise. So, when I need to sell things or improve something that will make my quality of life better, it does not help when you voice your stupid ass opinion on something, that I have set a price on and then compare yourself to my issue saying I have had to really lower the cost to get rid of this. You are probably going to need to do that too.

I have never once mentioned to anyone how they should live their life or manage how to do things, so why is it ok for someone to do that to me? When you have what I have then you can comment and say what you “feel” you must say if that gives you power and control over me and validates your happiness.

Every day is a day of the unknown for me. I wake up never knowing how I am going to feel. To do daily life chores is a huge energy drain for me. I literally have to pick and choose what I am able to handle doe that day.

My Multiple Sclerosis does not really allow me to do multiple tasks that most people can do. I have to decide do I go grocery shopping or make calls. Both tasks are equally draining and often I am only able to do one thing then spend a lot of hours in my chair lift recliner recuperating.

I thought of those board games that we used to play that have the spinner to tell the player the next move or step to be done. My life is like that. So, I created an MS Task/Energy Spinner for me to show others some things I go through everyday that robs me of my energy and I do not have a lot of choices.

Interesting art piece I created.

There are different types of Multiple Sclerosis. I went for years not knowing which type I am. People often ask me what type am I? For me, it was not a priority to know. There is no cure and I always thought, ok then.

Now, through my Multiple Sclerosis team, I found out that I was relapsing-remitting MS for years, — about 80% — eventually I’ve moved up the ladder and I’m secondary progressive MS (SPMS). The relapses and remissions that used to come and go change into symptoms that steadily get worse. The shift typically begins 15 to 20 years after you’re first diagnosed with MS. I’m the (SPMS), I’m the (SPMS), I’m the (SPMS) … 🤔

I’m not relieved, this I do know. The diagnosis, I don’t feel it helps me with anything at all. To me, Multiple Sclerosis is debilitating and it changes your life, goals, relationships with family, friends, and relationships. To get services, accommodations, just simple daily stuff that people “do” take for granted remains the same. Trying to understand why it’s so important to some. #mymsandme

Well, things in the universe are shifting! I put my name in several barrier free handicap accessible housing about 2 years ago because things were getting harder for me to do. The one thing that was the hardest was getting in and out of my bathtub when I showered. I have not showered now for almost 2 years and wash up at the kitchen sink and sit on my toilet for the rest of my body. Not showering I felt was the last straw for me and I felt defeated.

On September 24, 2020 I received a call from one of the places I applied for saying if I wanted the apartment to call back. At first, the message with phone number, I thought it was from another doctor’s office. I didn’t answer the call. My gut kept bugging me so I looked at the message that was left. I got so excited and hopeful. Called the woman back, asked her what all kinds of questions. Number one was did the have a walk in shower? She said, “YES”. I got so excited. Made an appointment for September 28th.

The day arrives, my friend who helps me with everything came and got me to go to the apartment appointment. When the manager of the apartments opened the door, a big burst of sunshine, white, clean, brand new apartment became my needs became so real and the light at the end of the tunnel was within reach. Everything was open, bright, clean, accessible, just simply amazing.

After viewing the apartment, I said I wanted it. I was super nuts to turn it done. We all headed back to the office and discussed all that needed to be done. Deposit to hold the apartment needed to be made. Rent estimated was roughly $300 less than what I am paying now. Paperwork was filled out and signed. The waiting begins. The manager said it will take 30 days for all the paperwork to be processed and things like background checks, bank information verified, social security information collected, and other personal stuff.

My sister flies into town for the week on October 9th. I called and made an appointment again for October 12th, so I could show my sister. We go, she’s impressed. We – sister, manager and I all go back into the office and was told I was approved for the apartment. The relief and happiness was just unbelievable and emotions just overwhelmed me. My gratitude and being patient, praying, asking for this in the universe paid off. I forgot everything I was supposed to do. Ha! The MS journey of my new chapter begins.

My biggest pet peeve: when someone shares their daily life struggles with you, do not compare yourself to them. Their struggles and your struggles are not the same. Life with MS is not easy, just because you have a similar experience does not validate your issues and that you feel that it’s the same. Similarities BS! In my opinion, not by a long shot.

An actual conversation (trust me, not the first time), about my not being able to take a shower for 1-1/2 years soon 2 years because of shower seat dimensions, not being able to get my legs over the bathtub, mobility issues often like body-spaghetti noodle feelings. I was compared to a person’s struggle with surgery and not being able to shower for 3-4 weeks or broken limbs with casts on.

Another, a full college degree licensed professional explains how to get my legs over the bathtub, gets flustered and annoyed says just use your pants to pull up your leg over. I did that, whoo hoo a milestone, but I’m sitting in the bathtub fully clothed. How do I do this without clothes on? Asked therapist that more than 3 times, concept was not understood so the physical therapist’s intern had to explain it. Sigh. Finally the light 💡 bulb came on. Double sigh.

Please believe me when I do sympathize with your issues, but for crying out loud… 1-1/2 years going on 2 and my disease is FOREVER! Just shut up!

I had some things that happened within the month and those issues have affected me negatively. I thought I was ok, but when I talked with my new neurologist recently, we talked about a lot of things. Between my recent therapy sessions and the neurologist, I have come to accept how things in life really do affect me. The impact of not listening to my feelings, my body is forever screaming from the constant upheavals of struggles with friends who do not respect me, losing friends, daily stuff, and the many prior triggers.

I’m always in a fight or flight mode unconsciously thinking eh, just a bump in my life journey. But what I keep forgetting is that I am definitely a person with unhealthy habits. Years of verbal, physical, mental abuse from family members, friends, Deaf communities, relationships Deaf and Hearing, I’ve shoved my thoughts, fears, anger, hurt, the list is endless down so deep in me that my body is in a constant state of stress.

When a friend takes advantage of me I tolerate it for a long time and then one day their spoiled and whiny behavior just snaps my patience, I blow up and there’s nothing that can stop that. What more, I’m told that I’m not supporting enough and because of my blowup, the friendship has changed. I need to learn to not accept the behavior of others taking advantage and say no I cannot do this for you. This way, the tolerance of allowing people to take advantage stops when I say no and it doesn’t build up to where I explode. I’m always in a constant state of guilt because I am told “the friendship” has changed forever. I don’t get that. What ever happened to we had an argument, say sorry and move on?This is growth and we learn about each other better.

When a person is abused for years it becomes the norm. This happens often with me. I pay a heavy price for that because now, I cannot tolerate anything that is disruptive in life like the daily things I need to do to get stuff to help make my life easier. Current events like the coronavirus, our very disruptive unhealthy government, causes so much stress I’m constantly in a fight/flight mode. Prior life events do creep up and trigger me, I’m constantly having to reassure myself I will not allow this to control me. It is done, I cannot change it.

Talking with the neurologist and therapist has made me see that I cannot heal if I allow these things to invade my personal space. I’ve been struggling to walk everyday just to do the simple tasks that are taken for granted like cooking, cleaning, running errands, even sleeping because current disruptions have invaded my personal space. I’ve come to realize that negative disruptions are silent killers that affect. I must constantly be aware of that. Listen to my body say, hey! I don’t like this, it makes me nervous, upset, uncomfortable and learn to say no and stop the crap from invading my well being is the key to change and stop things from spiraling out of control.

The bottom line is learn to say no, don’t allow guilt to invade my thoughts and decisions, I have an autoimmune disease, I must constantly protect my personal space from fight or flight mode because my body is constantly attacking itself and I cannot heal.