Sometimes I Feel Like a “Normal” Mom (Impostor Syndrome?)

What is normal?I was diagnosed with Multiple Sclerosis almost 15 years ago. I don’t usually show any symptoms, very rarely any that someone would notice. Usually they are subtle and/or invisible enough that there isn’t attention drawn to them. I also don’t often talk about it. I bring up my diagnosis if there is someone who I am hoping to help with information I learned because of my relationship with MS, or if someone asks what I’ve been working on. This site when I mention it often leads the person I’m talking to, to ask if I have MS, and when I’m asked directly I don’t lie about it. I’ve even wondered myself if I “really” have MS, but I have not been able to get a doctor to consider this possibility because of those dang spots on my brain.

MRI from November 2014

Many times when the “truth” does come out, a flurry of “Oh I’m so sorry!” and “How are you feeling?” type comments come spewing out of their mouth, I then calmly smile and let them know that I’m lucky, I haven’t personally been experiencing symptoms as of late, and also I often mention that I have my “toolbox” of ways to deal with symptoms when they do come up and they seem to be working for me. I sometimes feel almost guilty (and always grateful) that I feel so normal.

Here are some answers to questions I’ve seen/heard asked many times over the years:

How do you treat your MS?:

Mostly I take supplements (as recommended by my naturopath based on blood tests) and am careful about eating as much organic vegetables and fruit as possible along with smaller portions of meat and organic rice. I focus on keeping out the chemicals used in conventional farming and food processing. I avoid things like fast food, boxed food, and milk.

What have you tried that didn’t work and why?:

When I was first diagnosed in 2001 I was put on Avonex right away. This only lasted for about six months because it made such a horrible impact on life. I was a Junior in college and feeling like I had the flu once a week along with a super busy schedule did not work for me. After this I was switched to Copaxone for a few years, I eventually stopped when I was pregnant the second time. I hadn’t been good about taking it regularly anyway and the doctors I had at the time didn’t want me using it while pregnant. I haven’t felt tempted to go back.

What advice do you have for a mom recently diagnosed re choosing a treatment?:

I would recommend doing research and asking lots of questions. There are so many ways that people are treating their MS that is or isn’t well known at this point. This is a big part of why MomsWithMS.org exists is to give moms access to each other quickly so that you can meet women utilizing anything from the big ABC’s (Avonex, Betaseron, Copaxone) to things like CCSVI (Chronic CerebroSpinal Venous Insufficiency), MMJ (Medical Marijuana), HSCT (Hematopoietic Stem Cell Transplantation), LDN (Low-Dose Naltrexone), IVIG (Intravenous Immunoglobulin), Naturopathy, a variety of dietary methods and more for example, most of which recommend avoiding dairy for reasons discussed by Naturopath Fiona in videos on her page. Sometimes doctors don’t stay up to date on the current trends/treatments/nutrition and what is working for people in other parts of the world and so it is important that we advocate for ourselves. This advice is near opposite of what I was told in 2001 which was to not look online, but things are changing so fast I feel it is very important.

UPDATE: I just ate my lunch after publishing this post and realized I left something out. We are normal. We are all human beings and something I’ve realized in the last 15 years is that just about everyone thinks there is “something” wrong with them. 1 in 5 people have an autoimmune diagnosis of some kind and more are being diagnosed each day. Let’s all make the best of what we DO have and focus on that, in my experience it helps a lot to improve what works and sometimes forget about what doesn’t, because it just might start working again. Just being a mom will expose you to TONS of other moms and what I’ve noticed is that we’re all trying to do better…we really aren’t that different. In many ways we have a special perspective about things that might be more worrisome to someone else, because having experienced something as serious as MS and what we go through to get diagnosed gives us a kind of strength. I hope you all find the beauty and strength within yourself because you are normal in the most awesome way, we are alive. We have created little humans and we are raising them each day. Go MOMS!!

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Hands Temporarily Out of Order

Hands Out of OrderFortunately at this point, I can type. I am writing this article just over a month from when symptoms started appearing from what can be called a flare, exacerbation, attack, or even just an episode of Multiple Sclerosis (MS). For a period of time I lost most feeling, control, and strength through a lot of my body. Most impacting for me in my life was experiencing this with my hands! I am often asked ‘what it feels like’ to have MS, and so this is the first in a series of articles covering the wide variety of symptoms that have recently come and gone through this most recent episode.

Currently I can type, which I consider my ‘coordination’ as well as ‘strength’. About two and a half weeks ago, this was not possible! I was barely able to communicate digitally, moving a mouse was near impossible and required the use of both of my hands! I think this is most clearly described as feeling like I was wearing multiple layers of rubber gloves, as well as weighted wrist bands, over a pound, probably about a pound and a half and trying to do anything quickly. Usually if one tried to do something like this, it would be difficult when first trying to do something like move a mouse, but then after a minute or two it would get easier. Normal feelings in my experience that fit this description are compensated for by the body making impairment temporary. However with this MS flare-up I experienced it was like that initial feeling of being out of control gradually hit, it took about a week for it to manifest to the worst symptoms, and then it has been slowing waning since. At the worst part I was able to ‘type’ ever so slowly using only the pointer finger on my left hand, being slowly and strategically placed over a key, lots of errors and absolutely painfully slow.

I started getting the coordination back before the strength and the feeling, at this point it was uneven as well. I My left hand improved much more quickly than my right (I’m right handed) for instance and while I could type pretty well with my left hand, my right kept ‘floating’ over to other keys, so my “L”‘s were often showing up as semi-colons and so for th because the drifting re-aligned where my hand was placed, imagine the kind of weakness you would feel after unpacking and organizing a huge bookshelf of books and then doing a couple pages of typing and I think you will understand what I’m describing a little bit. I had to watch my right hand to make sure that I had my fingers over the right keys, which was very distracting as I usually am a very fast typer!

Right now, about 4 weeks from the beginning of all of this, I’m almost completely better in my hands, I can sign my receipts, fill out forms, drive, type, change diapers, do dishes and so forth. I think right now is the most interesting as far as how they feel though. I describe it as feeling like I just got my hands wet, dipped them in some kind of flour or corn starch, squeezed them into fists making the substance cake in random places, and then putting some tight thin rubber gloves. So I can feel, but not fine details. Smooth surfaces feel bumpy and definitely not smooth, (this makes cleaning a little crazy because it doesn’t really feel clean). I’m hanging in there though, the hardest part is keeping myself from touching everything and observning how it feels as I watch and take note of what it looks like it should feel like.
In addition to all of this I experienced a symptom called “L’Hermittes,” “MS Hug,” and a kind of burning ring around my neck. MS is a very interesting condition to have.

This post was written by Kristin Bennett in February 2010 and is re-posted here with permission.