The Odyssey

By westwind

2 min read

I was diagnosed in 1987 so this is my 30 year anniversary with MS. In 87 I was working for my Dad in his shop. He made school uniforms and I worked wherever I could. I did things like help customers, went out on fittings and bagged the uniforms and a few other things. The summer was an extremely hot one. and there was no air conditioning only fans, Well I was bagging some uniforms and went numb from my toes to my waist. I did not panic I thought it was just a pinched nerve and it would pass. The next day I went numb to the top of my head, now it was time to panic and I went to see my family doc and he sent me to a neurologist, He sent me for an MRI and the conclusion was that I definitely had MS.

The next two years were awful, It seemed like I was having one relapse after another. I was on Prednisone constantly and we all know what that is like mood swings, constantly hungry and basically miserable. It was during this period I had to plan my son's Bar Mitzvah. I don't remember much of it at all except for the outfit my Mom knit for me and the hall we had it at. Today that is a bummer and I have no pictures of it. After the two years things sort of settled down.

There was the unexpected relapses but I never stopped doing the things I had to do. Sadly I stopped going to my sons (I have been blessed with two sons) baseball games because I could not be in the heat. My now ex-husband was of little help to me. He did the laundry for a few months and then announced he was done with that. I followed him around putting the information about MS for over a month and he never even looked at it or asked any thing about MS. We divorced after our 20 year anniversary. The I found out he believed I was lying about having MS and I was just being lazy. I never knew that until our divorce in 1993. If he had only talked to me or went just once to a neurologist appointment with me.

There is so much more but this would become a novel so let us skip to the present. My symptoms today are numb finger, dead feet numb to my knees and short term memory am, my son Loren is my caregiver by his own choice. I have four grandchildren and my best friend of 62 years is always there for me which is easy because we live together and Loren lives with us also.

Well I can tell you I count my blessings everyday and I have many. In spite of having MS my life is doing just fine. I have a goal that I would like to start a friends group so we can share our experiences and ideas about having MS.

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DonnaFA Member
Hi westwind, we're glad you found us. I'm so sorry to hear some of the sadder moments of your journey. Sometimes things happen for a reason, and I hope that you find your life is more joyful without the presence of your non-supportive ex. Please know that we're here to share support, and we thank you for sharing your story with us, -Warmly, Donna (MultipleSclerosis.net team)
1. westwind Member
 Like I had mentioned in my story it was just a quick overview and I could add so much more. I am blessed to have a wonderful support system of family and friends and I am blessed. I am a very spiritual person and disgustingly positive , my glass is always 3/4 full and refilling all the time. Yes MS can be a pain and I could be depressed about it but I am not. I take each day with the promise of only good will come my way. I like to share my positive feelings with anyone that will indulge me. 30 years in and I am still moving forward. Life is a gift and I chose to make the very best of it.
f5hwo4 Member
I am glad you have your son and best friend, I am lucky my husband is taking good care of me. He said we are together for the good and the bad, that it could have just as easily been him. I know two women whose husband left them after their diagnoses, I am sure there is thousands just like them out there. Keep moving forward. Potter
allennance Member
My Wife met me just as my MS put me in a wheelchair in 2012. Then by 2013 I was no longer able to do transfers; and I have to be hoisted by my Caregivers (Personal Care Assistants (non-medical) out of my chair and onto a portable toilet that they roll next to my bedding. (it's called a Traxx system a big crane). I am completely immobile, disabled, and can only go to clinic with a medical taxi. There have been times when I become grossly verbally insulting - either from wen they experimented on me with meds, or when I ran out of pain meds which since they never give me enough I have to break my schedule and take more during trips to clinic because of the bumpy roads and extra pain of travel andits the only way to arrive at the office civil enough to carry on a conversation; and then I pay the price at the end of my script cycle. (Any of that crap sound familiar)? I'm incontinent, bowel issues too, have rather graphic rituals to try and keep that under control which some younger Caregiver temps couldn't handle and quit)... and my in-between caregivers filler has been my wife. I only have a care giver twice a day which is 2x2 hours leaving me helpless and stranded in a chair, unable to even answer the door, for 20 hours out of the day. My wife said at the very beginning, "I don't care if the VA would pay me, nor that I could take full early retirement if I register to care for you, I am not going to do that; my job comes first".....the ironic thing being is she would make MORE money, and get to stay at home if she did this...but she says, "I love you but you're killing me I can't live with you" so the polite lie is she's going back to take care of her mom who is indeed elderly and suffering from diabetes but is surrounded with helpers; *I however am ALONE.* and though she at first gave me a year, that year turned to January, and then to November....why? she got a job offer at her family's home where she wants to move. ..I was floored. My first fiancé I sacrificed everything for. My Job, my schooling, money, ran myself in the ground ragged taking care of her as she died from cancer and this is what I get for my troubles? My contribution to humanity? now I sit sometimes in my own shit and piss, reinfecting pressure sores on my butt that put me into the hospital weeks at a time. And all my SSDI pays the rent and utilities. I make posts and seem salient and able but I'm so far from it. Hours from now my hands will numb up or things will get weird hell I get vertigo just from sitting up too fast,. I've been thrust into behaviors I had no choice or control over, and frankly I think despite times of pain induced arguing and yelling, I never put her or anyone in any mortal danger, hell how can I? but this is why she is leaving she says. "Till Death do us part" means nothing. I'm scrambling now to find someone interested in a fully paid for place whose only request from me is the occasional accident or request to answer the door. I once left the world of technology to try and pursue the humanities because I wanted to try to get a job (Which is no longer tangible) that gave back to my human community. I've been yelled and screamed at but that never stopped me from doing the right thing. And even though she has offered to still send some cash and stay married if I want to (she doesn't really care either way) I cant help but think I made the wrong choice because the one thing I need - someone just nearby not even in the same room with me (we live in twocompletely separate andequipped areas) is the one thing she just feels no responsibility to give. I feel so grossly used, and abandoned, and ive got about 2 months (unless she changes that date again) to contact some place like Care.Com that helps to match people interested in living with someone who needs care with someone willing to stay with them...a live-in caregiver. ... So what happens? I really would like to answer this question: What happens to an advanced Neuro-damaged fully disabled person, when someone watching over them suddenly dies, or walks, or whatever....? what options do they have? because the only thing I see left for me is to wind up hospitalized again and then roll the dice and see what the hospital does with people. I am Paralized from the waist down. What's next?
allennance Member
OH and Westwind, thank you for your story. If I was the husband even now of someone in need as you are, I would not hesitate to take every leftover penny from my SSDI and hand it over for whatever came up. When did marriage stop being a team effort? that son of ***** doesn't deserve you and I wouldn't care if he dropped dead. After being both a caregiver and a caretaker, my compassion grew. Yes, MS screwed my personality up so now i'm like a drug and disease induced bipolar disorder, but in between the painful ebbs and tides when I can think and revert back, I still have a soul. I just don't understand how some people we do so much for, can not focus on returning the favor on things we need the most. In my case that being an occasional watchful eye, pain meds which are a never ending fight to prove, and bedding/cleaning sometimes light sometimes heavy. again, thank you for sharing your story. Allen Nance, Las Vegas, NV