A reliable support system

The Importance of a Reliable Support System

My PML Scare

So if you’re wondering why I have not been posting too much either here or on my personal blog it’s because I have been really busy lately. You see, I had a bit of a health scare, possibly PML (Progressive Multifocal Leukoencephalopathy), and it was a bit of a wake up call to say the least. I did not have the support system I once had which I did not even realize I had. As I have said before, “you don’t know what you have till you lose it”; it’s cliché but true. The life I was trying to build for myself just was not working out but at least I can say I tried.

Let’s start from the beginning; I was starting to feel… “Off”. I just didn’t feel generally healthy. I also started noticing myself dropping things more often and my legs were growing really weak. If you look it up almost anywhere, one of the very first signs of developing PML is clumsiness, which is what caused my initial alarm. I called my neurologist in Colorado to voice my concerns as well as my desire, no, my need to get an MRI. Ever see a PML lesion? Not hard to miss, Google it! I told them it could be nothing but it would be irresponsible not to check because the number one reason PML is not caught in time is because people mistake the symptoms of PML for an MS flare/relapse. Even still they were dragging their feet on the matter as if everyone in the office switched to some sort of new lead based shoe.

I was having a rough time keeping up at work, my truck broke down, I was getting a ride from one of my managers (wonderful lady), money was becoming a much larger issue than usual, and I was starting to feel very alone in this new state where I really had no “safety net” to catch me if I fell. My stress was on the rise as my happiness, my quality of life, began to fall. I don’t like asking for help, it’s an issue I have been working on since my diagnosis in 2010, but when I finally muster up the strength to be humble and ask for help only to find that no one is there for me it is very disheartening. I didn’t want to admit it but it was starting to become clear to me that I had bit off more than I could chew by leaving everything behind in California to start fresh in Colorado. I had to move back. Not only did I need a doctor who knew what he was doing, a doctor that I trusted, and the entire network of healthcare professionals that I had built but I needed my support system back; I needed my parents and I needed my best friend who I knew would be there for me if I needed her. I loved my solitude but too much was a bad thing; I missed the company of my friend and my parents.

So on Saturday December 6th, I packed up my apartment into a trailer and my parents helped me move back to California and before my neurologist even replied to my last email in Colorado my neurology team here in SoCal was already getting me back into their system for treatment and appointments. I have gotten to spend much time with my friend and it’s nice to be around my parents again. I no longer feel alone on a tight rope with no safety net to catch me if I fall. I have a support system again; family, friends, and a great medical team. I miss Colorado, the weather, the local feel of it all, and yeah, the weather. But you can’t have it all and when I weighed the pros and cons of moving back to California the scale was tipping far towards California. I learned a lot in my short time alone in Colorado and now that I am back in California I feel like I know what I want in life because I finally got a few moments of clarity to just think.

As far as the PML thing goes, I don’t think I have it; I think the stress of my life was just getting to me because I am feeling so much better now and all the weight I lost out there is slowly coming back as well as my strength. I am still going to do all the testing to be sure and getting around to all my appointments won’t be an issue as I got a new car, a 2010 sedan with 28,000 miles, it’s reliable and I get about 32 miles to the gallon so I won’t be stressing about gas money like I was with my old truck that got a whopping 12 miles to the gallon on the highway. I am glad for everything that happened because it has definitely further shaped me into who I am and helped me realize what and who is important to me in my life.

Now I have a vague direction as to where I am heading in life. I really want to start working on a career in the world of Multiple Sclerosis; perhaps it’s time to really start pushing my speaking career? I would much rather help people with MS than help people with an attitude looking for some movie that is not even out yet. But hey, I had to get my feet wet; I needed to see the “bad” to better see the “good”. I tried and even though it did not work out the way I initially thought it would I can at least say that I tried which when you look at just how much I was trying to pull off? Well, it was a much larger leap than even most people without a chronic disease can say they tried. Again, in the grand scope of things? I am happy that things worked out the way they did because I can really see just how much I had and just how much I gave up. I just hope I didn’t burn down any bridges. I feel like life will be much easier to navigate now.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • Mspbfh2
    4 years ago

    Having the right neurologist is a huge part of a reliable support system. I finally found one, and I am willing to drive an 1.5 hrs to see her. Her mother had MS so she totally gets the nuances of MS. So glad you were able to get back with the team you,feel comfortable with. Welcome back,to California. (Are you enjoying our current weather with snow down to 1,000 ft!)

  • Matt Allen G author
    4 years ago

    Yeah, speaking from experience, DON’T LET GO OF THAT haha. I am still trying to squeeze into my doctor’s crazy schedule but he did order me Acthar I just need to get in for tests and treatment. TIME. And yeah, it’s a nice moment of temporary NOT-SUPER HOT weather but next week temperatures will be shooting right back up. Yay… lol…

  • Cathy1959
    4 years ago

    I was diagnosed 30 years ago. I was 24 with a one year old girl and three year old boy. Neither my family or I had ever heard of Multiple Sclerosis. In the beginning everyone was treating me like I was going to die very soon. After a few months they realized I wasn’t dying so they went back to treating me the way they always had, which is getting together for holidays. I am lucky to have the best husband in the whole world who has stood by me all these years. I, in turn, have strived to keep myself as independent as possible. I don’t like people doing things for me. After a fall and ending up with a cast and sitting on the couch all summer, I realized I do need help. I got to see who was there for me and who was not. I am 55 years old now. I use a walker and a cane, depending on the day. I lost 47 lbs. at Weight Watchers and I go to the gym as much as I can. It’s nice to know I have a support system when I need it, but right now I try to do as much as I can by myself.

  • Matt Allen G author
    4 years ago

    I am in the same boat regarding not liking to have to have people help me BUT, it’s nice to have a team, more so the team of having a significant other who is by your side willing to do anything and everything to be understanding and help when necessary. I have always wanted that so I am glad to hear you have had it.

  • Pam
    4 years ago

    sometimes you need to step back to see what’s in front of you… glad you’re doing better!:)

  • Matt Allen G author
    4 years ago

    you really do. Hold a penny in front of your face and it looks huge. Step back and you see just how small that penny is and what all is surrounding it that you couldn’t see while it was in front of you face!

  • MR. M.S.
    4 years ago

    Good luck with Your new “new normal”. I’m quickly learning the value of a support system. This is scary enough with one. I don’t even want to think about not having one!

  • Matt Allen G author
    4 years ago

    I got through a lot of this feeling “alone” but I didn’t realise how much I actually had until I WAS alone. So yeah, it sucked haha. Thanks you!

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