DAMMIT It’s not fair!
I have 2 other articles in the hopper, but this one had to take priority.
Last night I got a text from a friend of mine who has MS.
The back-story on our friendship is because of our husbands. 2 years ago my husband was at work and their manager who said, “Arife’s wife was just diagnosed with MS and thought maybe you two could connect” . My husband whole heartedly (because that’s the kind of guy he is) said to Arife, “What do you want to know?” He said, “I don’t know”, my husband then said “here’s my wife’s phone number, have her call her, she would love to talk to her”. Later that day I got a phone call from her.
We talked for a couple of hours.
She was in a place that I was for years. Which is “I am going to beat this”. We had the same philosophy. I am going to be natural and holistic and I am not going to let this affect my life and no one is even going to know about it. We had a lot in common. Aside from the fact our husbands were in the same business we are also mother’s of young children and we are extremely stubborn and fighters. A story that most people with MS can relate.
Over the course of our relationship......
I started to impart with her resources that can make her life easier. She was one of the inspirations for my cause. I didn’t realize how much information I had. I’ve had this disease in my life since I was a child. My mother was diagnosed in 1978, but was coming down with symptoms in the early ‘70’s. I know this disease from the point of a child, caretaker, patient, mother and spouse.
We’ve talked over the past 2 years by phone, even though we live about 25 minutes away from each other. About 8 months ago we finally met at an MS presentation/dinner. We gave each other the biggest hug and it was love at first site.
Over the years we’ve talked about our trials and tribulations and cried for each other as well as be a cheerleader for one another.
We were supposed to talk on the phone this week. She texted me and said, she couldn’t really talk because she took a fall and was trying to recuperate. I told her “no worries”.
I got a text from her “I am in the hospital, got to love MS”. I texted her back “There are easier ways to get attention. What happened?” Well, it turns out when she fell she failed to tell me that she didn’t use her cane and she had been out in the heat (it’s been in the mid 80’s here). The doctor was not pleased with her progress since Sunday and admitted her into the hospital.
MS affects no 2 people the same.
It’s hard for anyone to understand. Because just when you think you understand it, you don’t. It’s hard for the non-patient to understand, it’s even harder for the patient to process. We want to live the lives that we did before the symptoms came. Our brain can’t remember that, it still thinks we are fine. Our gut says “Maybe we should not commit to….” And the brain, ego and pride says “No, we got this, we’ll be fine, this disease isn’t going to control our lives”. Then after we pursue the action the body says “I don’t think so, you forgot to ask us, so now we are going to remind you who’s boss”.
It’s perfectly normal to be angry and frustrated and hate the disease.
It’s not fair! No one asked for this disease. Your game plan has to change, not forgotten! It’s a choice to live in the anger and hate on a regular basis, then the disease wins. But give yourself permission to be sad on those days you deserve to be sad! Just because you are having a bad day doesn’t mean you’ll never come out of it.
Today I am sad
that my friend is a hospitalized because of this disease. But I am also grateful that with today’s technology and drugs that MS of today is not the MS of my mother’s time.
Until then stay empowered,
Team Multiple Sclerosis