I Don’t Know

I find myself saying “I don’t know” frequently when it comes to my MS when having discussions with family and friends… Here are some examples:

  • Is your MS medication working?
  • Are you going to be in a wheelchair again?
  • How many lesions do you have?
  • How did you get MS?
  • Why do you have a problem with the heat?
  • Are you going to get a more progressive for of MS?

The list goes on

And the list goes on. That just goes to show how much is NOT known about MS; yes, there are theories, and yes, I can tell if my medication is “working” to slow progression or not… but I get asked that question after about a month of being on a new medication.

I feel like I say the words, “I don’t know” way too often… but what other short answer is there? I hear all of the time that MS patients are some of the most educated patients there are. And I like to think of myself as being educated on MS in general, but there is only so much “confirmed” information out there.

We don’t know how we’re going to be

The bottom line is, we don’t know how we’re going to be (physically) a year in the future – or even a week, or even tomorrow! There is so much uncertainty with this disease that I really try not to linger on the thoughts of it. But when I get asked all these questions I don’t have a legitimate answer to, sometimes it makes me think about what the future holds for me.

I’m not a negative person, and I don’t like to have a negative outlook on my life with MS, but I do question things here and there, how can I not?

There are plenty of theories out there about what the cause of MS is… but there aren’t any that have been confirmed 100%.

Questions from my young son

I guess this just recently hit me because my oldest son, who is 7, asked me if I was going to be in a wheelchair again. Of course, he is just curious and wanting to know what’s going on with me, but it’s hard to explain to my kids how I DON’T KNOW.

So, how are we supposed to handle these questions we get asked, even if we are the person asking them to ourselves…?

xoxo

Ashley Ringstaff

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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 (9)
  • Mystery-ailments
    3 months ago

    I don’t know might as well be my first and last names and added to them, I don’t care anymore.
    I haven’t actually been diagnosed with anything other than some guy who walks into the VA and gets ignored by his doctor.
    I read about the symptoms of MS and I pretty much check all of the boxes, but whenever I even attempt to discuss the issue with leg and hip weakness and pain with my so called doctor at the VA I might as well just tell him about the cat I used to have when I was a kid.
    When people ask me questions about my condition it’s usually along the lines of ‘Why don’t you go to the doctor? ‘ which I have many many times only to get the same responses over and over which is to change the subject to anything other than whatever I’m there to see them about.
    I’ve given up and if my legs finally just fall off then perhaps my doc at the VA will ask, “Why haven’t you mentioned this before?”

  • ShelbyComito moderator
    3 months ago

    Hi @mystery-ailments, I’m so sorry you’re having this experience with your doctor! That sounds incredibly frustrating. You may have already tried, but many members of our community find it helpful to get a second opinion when their doctor isn’t providing them with the kind of care they need. Is this a possibility for you? If you haven’t already, you can check out this search tool from the National Multiple Sclerosis Society which has an option for veterans — https://www.nationalmssociety.org/Treating-MS/Find-an-MS-Care-Provider
    I know choices can sometimes be more limiting through the VA, so if this is not an option, this article on communicating with your doctor might give you some helpful tips: https://multiplesclerosis.net/living-with-ms/four-tips-better-care-doctor-and-pharmacist/
    I truly hope you’re able to get the kind of health care you need and deserve. Please keep us posted on how you’re doing. Warmest wishes, Shelby, MultipleSclerosis.net Team Member

  • seenjo11
    5 years ago

    Hello Ashley –

    My name is Sean and what follows is a little something I just posted on the boards at one of the MS sites I belong to:

    *I had an interesting experience last night. Wife had a coupon for 1 week free at the local 24-Hour Fitness center. She wanted to swim. She wanted me to go with her. I didn’t feel like getting in the water but agreed to go. I would read while she swam.

    We got there and went in. She had to fill out some paperwork and the fella signing her up asked me if I was going to use the weights or swim. “Neither – I’m just here to read.” He smiled oddly but continued with the ‘pitch’ about the facility. He brought up the basketball courts – perhaps because I’m tall. “Got intra-league play tonight. Some kids of NBA players and a couple of former NFL guys. They run full-court games.”

    Great. I played basketball frequently and with great gusto for most of my life. I can’t anymore. I can’t run like that anymore. Or even very well anymore.

    But that wasn’t the moment I truly felt out of place. That happened later when I was waiting for wife to reemerge from the lockers and I was sitting in the main thruway between reception and the lockers (really nice and modern facility btw). People coming and going. Lots of chit chat and banter: You workin out? You swimming? You lifting? And so on. There I am reading work by poets with disabilities talking about how the world at large defines them via the visual representation of defects or breakdowns that the physically impaired have absolutely no control over. And there I am in my work clothes: shorts, shirt, hiking boots. Looking totally normal on….the…..outside.

    I am struck every few weeks by this peculiar situation that I find myself in. The MS hasn’t ravaged me yet. It’s like I am stuck inside the membrane that separates unimpaired and impaired. I’m a ‘tweener. And I’m reading poetry and taking notes inside a state of the art fitness center where I am not participating in the ritualistic honing of my body.

    I didn’t feel strange so much as I was struck by the juxtaposition of me and them. And by this sort of limbo state. Anyone have similar experiences….the feeling that you are stuck in a Jacques Tati moment? I am curious.*

    Curious about our extraordinarily curious disease indeed. I was Dx 4.4.2012 with PPMS. Still work. Still function relatively close to normal. Still write quite a bit. Primarily poetry for the last year or so. Moving back to fiction soon for a little while I think.

    Someone I know pointed me in the direction of your blog…maybe 2 weeks ago. I like your poetry. I’ve seen several of your pieces at MSWorld. You engage and inspire and inform…and all under the umbrella of being human with MS. It’s truly shocking you know….being human with MS.

    Flattery from a complete stranger?

    Yes of course I have an angle. I would like to ask you to consider submitting a little something something. A slice of poetry. A bowl of prose. A re-purposed blog entry.

    I was fortunate to meet a like-minded person on yet another MS social site and she had an idea for an anthology of prose and poetry written and compiled by people with MS. The ‘We Write for the Fight’ MS social group released Volume 1 of the Something On Our Minds anthology in June of 2013 (available at Amazon and createspace.com). A bit behind schedule but not bad for an editorial/production staff of two. We are now gathering material and tooling up for Volume 2, which we hope to release in March of 2014. We need strong voices. We need reason. We need vulgarity. We need passion in nouns and verbs.

    Something perfectly….normal? Does that almost make sense?

    Please consider it and let me know. If you opt to play with us I can get you a copy of the submission guidelines. The technical deadline is 12.5.

    Regards.

    Sean J Mahoney
    seenjo11 [at] gmail [dot] com

    (yeah I know – breaking the rules)

  • KatrinaS
    5 years ago

    My number one currently used phrase–“I don’t know”. sigh Are the meds helping? Do you feel better?……Yep, I don’t know. Just plugging along. Thanks for your post.

  • Ashley Ringstaff moderator author
    5 years ago

    Maybe we should have a pre-recorded response… like those automated phone lines we get stuck on hold with for a long period of time. lol

  • PaintedTaz
    5 years ago

    I am recently diagnosed and I’m a little OCD and the not knowing is driving me nuts. I hate that I have to say, frequently, to concerned friends and family “I don’t know”.

    I really appreciate your blog. I have only had two really bad emotional days since my diagnosis (not including the 5 days of IV Solumedrol induced random crying fits). Mostly I figure, I’m going to keep my positive attitude and just take it as it comes. Since I have very little control over the situation, nothing else makes sense for me. It does help being able to read about and talk with others going thru the same thing.

    jfalasco – I am having odd cramps and tingle…my follow up isn’t until the 27th and it’s bugging me…should I call, should I just wait, it is random, is it related….I DON’T KNOW…..GRRRRRR!

  • Ashley Ringstaff moderator author
    5 years ago

    Hope you keep your positive attitude – and it’s okay to “breakdown” here and there… everyone does it, even if they aren’t diagnosed with a chronic illness…
    I’m glad you enjoyed the blog post! Means so much to hear that I’ve helped someone with my writing, that’s what keeps me going 🙂

    xoxo

  • jfalasco
    5 years ago

    Wow…I thought it was just me. Trying to stay positive but there are the questions that persistently nag…how long can I work, when will I have another relapse, am I being aggressive enough with my treatment, what was that odd cramp or tingle? Who knows? And the questions from family and friends are more difficult. This is certainly a wild ride. Glad I am not alone.

  • Ashley Ringstaff moderator author
    5 years ago

    I think it’s safe to say that you aren’t alone in a lot of the things that you deal with, when it comes to your MS…

    xoxo

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