How have I not actually come on here to talk about this? Maybe its because my blog is kind of like that one closet door you hope no one ever actually opens.
Everyone has one, right? No? Just me? OK, cool.
Its messy and the idea of taking care of it overwhelms me. BUT I have preached the importance of sharing this part of my life and being transparent and part of me still can’t believe this is even something I have to deal with but here. we. go.
If you follow me on instagram (#doitforthegram ) you maybe have heard my MS story, or maybe you decided to swipe left and skip my long winded story, because you were like,
I don’t really blame you. Hearing someone has something as scary sounding as MS is uncomfortable. How do I know this? Because I’ve been there. Avoided the sad and the hard stories on days when I just didn’t want to hear them (still do, if im being honest). But some of you watched and listened as I talked about how, at 38 weeks pregnant I was diagnosed with Relapsing Remitting Multiple Sclerosis.
SO. If you’re here and you’re like, “ok but what is MS?”, I would say, “look at THIS LINK“, and if you’re like “I dont have time for that” Id say “its incurable disease that attacks your brain and spinal cord” and then I’d mention the word myelin sheath and you’d be like “ok, what is that?” and I’d say:
In all honesty, it’s so complex and I’m still finding myself learning and trying to figure out how to better understand what is happening in my own body – but its incurable so I guess I’ve got time.
I don’t really (at all) want to talk about the science here though. I want to talk about life with this monster and my experiences and just be really freaking honest about what I have felt over the last 16.5 months, and maybe add some humor because, spoiler alert, sometimes its like
and other times its like
and some times you just need to say
even if you aren’t.
If you have MS or someone you know has MS you likely know that this thing shows up unannounced and unwelcome, in many different ways. For some it messes with motor function, for others it messes with sensory stuff and for some it does both – sometimes at the same time, sometimes at different times. Fun, right? Oh – and you never know / can’t predict what part of the body it will effect. It can just pop up wherever and ruin your day. Remember whack-a-mole? Its like that.
For a quick background on me, for the two of you who might be curious, my symptoms have been almost entirely sensory, and I have 20 something lesions in my brain and one in my spinal cord. I likely had the disease for about 5-6 years before I was diagnosed, but honestly I wonder if it might have shown itself first when I was in high school (i’ll get to that)
So my main symptoms that are definitely MS that have shown up over the years are
- numbness and tingling in one of my legs and a sensation that water was being poured down my leg (if you know, you know)
- vertigo (kind of felt like I was drunk and/or like I had been on a boat all day and was trying to get my sea legs back)
- severe burning pain on the right side of my lower back and right side of my lower abdomen area (above my hip)
- numbness and tingling in my tongue, and left side of my face
- cognitive issues (losing words is usually the biggest one for me)
- loss of taste
All of these have been temporary, and I have recovered 100%, minus little secondary flares when I’m super sick or stressed.
One thing that I think might have actually been a first sign was unexplained Gastroparesis (slow stomach emptying) that I had in high school and in college (MS is considered a risk factor for it). But honestly its not really worth my time to wonder if it was or if it wasn’t, so
My decision to be open about my diagnosis is simple.
When I first was diagnosed I didn’t feel like I was able to find anyone who I could relate to on social media (to be fair, I was looking for someone pregnant, recently diagnosed with MS and I now know I’m sort of a unicorn because pregnancy is supposed to be an easy time for MSers but for some of us NOT SO MUCH), and that had me walking through life those first few weeks after diagnosis like,
But as I worked my way through the grieving process and accepted this was part of my life now, I realized there are so many more of us than I thought… not necessarily the pregnant thing, but the Millennials with MS thing – there are so many of us and when I realized that I felt less like,
And more like,
So if you’re like me 16 months ago, and you are currently scouring the internet trying to find someone, anyone, who is living with MS who you feel like you can relate to, I want you to say, “HI!!! WE ARE HERE!!!!” We get you in a way that only other people who have gone through this will get you. The MS community is freaking great – strong – resilient. There is a reason why the term MS Warrior has taken off, and it’s because you don’t really have a choice but to figure out how fight. But let me tell you, fighting is a lot easier when you have an army behind you
I’m not going to post any resource pages for you – honestly, ask your doctor for where to get the best information on this disease – the internet is a scary place full of message boards that will do more harm than good. BUT I am going to share the links to some of my favorite MSers to follow, who keep it real but will give you the reassurance that a normal, full, life with this disease does exist.
These are all instagram pages, btw – follow them and be prepared to feel a little less like you’re flying solo (btw you can follow me HERE ):
I’m probably (definitely) forgetting some people and I promise to update with more when I think of them. But right now I have to go because I’m pretty sure nap time for my toddler is over and I now need to post this without proof reading.
TTFN
Britta
