Life Beyond Multiple Sclerosis
I don’t do a lot of real life posts, but this one has been in the works for a while now, so I figured there was no better time to hit that publish button than on the last day of Blaugust. It’s been a heck of a month.
For those that don’t know, I was diagnosed with Multiple Sclerosis earlier this year. It’s an autoimmune disease that shows itself through a whole lot of different ways, basically no two people are alike, and that makes it hard to diagnose. For me personally, I have the type that goes away for a bit and lures you into thinking that everything is OK, and then randomly things are very not OK. I had some of the symptoms for years, but thought “oh I’m just getting older” and thought they were normal.
It started with pain in my hands and feet. Gaming some days is almost impossible. I had a bunch of tests and bloodwork done to see if there was any inflammation and there was not. All my tests come back clear which is what makes getting an MS diagnosis so much more frustrating. The pain in my feet is worse in the mornings after sleeping, or after any length of time not moving. It’s bad enough that I have to have support to walk around my house for a bit. A lot of the time I cannot control my hands properly, it makes things like opening containers, holding cups, and other mundane tasks very difficult. I can’t prepare meals easily, I can’t use a knife, and I struggle to do the basics. Since these symptoms are not ALL of the time, but only when I relapse, I thought I might be making them up in my head.
This year cognitive issues started. I often ‘lose’ my words right in the middle of talking. I have short term memory issues where I forget what I ate for dinner even though it has only been a few hours. I get frustrated when I can’t think of a word for something that I’ve said a million times in the past.
I also started getting vision problems. On relapse days/weeks my vision blurs, I see a white haze around everything, and it looks like the house is filled with smoke. My eyes will bother me, feeling tight or heavy. I started writing down all of these things, when they would happen, and tracking them. Sometimes I’m good for a month or two, then symptoms will come back for a few weeks, and then they’ll vanish again.
To say MS is frustrating is an understatement. It’s so hard to explain to people (including doctors) what is wrong when you can’t SHOW them. That’s the main reason why I started writing symptoms down – so I would have SOMETHING to show the doctors besides me saying “well, sometimes I forget my words, sometimes I have pains, sometimes this sometimes that, but not all the time…” Anyway. I’ve had to adjust my life and make some changes. I am a lot slower than I used to be at everything. Walking. Cooking. Gaming. I need a lot of sleep and rest. I need to recognize when my body simple can’t handle any more. I need to be gentle with myself. On the plus side, it is NOT a death sentence. On the downside, it IS (at the time of this post at least) a life sentence. There are medications and things to help slow down progression but there is no cure (yet). It hinders my ability to do very basic things, like drive. On bad MS days I have difficulty taking care of my kids alone. I can’t lift them up, or play outside with them. I always have to tell them to be careful around me. Living in an isolated post makes it even more difficult. It’s frustrating and annoying – but it hasn’t stopped me. It has just slowed me down.
Any way. Why write about all of this? Just to hopefully let someone out there know that you are not alone. That things go on, that you’ll go on, and it will be OK. Maybe not right away, but eventually I found my groove and even though things are really difficult they are manageable. I’m a billion times thankful for all of the support I DO have, and I’m grateful for those days where everything goes ‘OK’ instead of brilliant. Keep trying. Keep pushing forward.
Many of the symptoms you describe sound like what’s been progressively getting worse over the past few years with my wife. Yet her test always come back “everything’s fine, you should be completely healthy.”
I don’t think anyone’s looked at MS as a possibility for her though. I’ll have to take her in to the doc again and ask them to look for it, I suppose.
MS is one of those annoying things where getting a diagnosis is frustrating, and takes a good amount of time. It starts with narrowing down what it isn’t (they checked hormones, blood work, thyroid, all that stuff first) – and you have to do a LOT of advocating for yourself. It took me years of knowing something was wrong but not knowing what was wrong and everything under the sun being suggested and even some doctors telling me it was all in my head. It was NOT all in my head. Eventually after exhausting all other options they do an MRI/CT scan and find old/new liaisons (if it’s MS) and you FINALLY know you’re not crazy, and have an answer.
That was my experience, at least.
It’s not uncommon for doctors to ignore a woman’s symptoms (heck, the subreddits I’m in are full of stories where women’s pain is ignored and overlooked). So be her champion. Challenge her doctor, especially if she’s getting worse. Knowing your partner is on your side and fights for you is the best support. Good luck.