Knowing When to Stop

Knowing when to stop has never been something I’m good at. I’m going to go full steam ahead, 125% until whatever it is, is done.

The problem with that is MS doesn’t give a shit what you want to do. Knowing when to stop can be the difference between partial completed and ok or having it done but being useless for days.

This has been a struggle for me since diagnosis. Whether it was work, household chores, physical therapy, it doesn’t matter. You tell me it would be better if I could do these balance exercises twice a day I will, until I can’t see properly and can barely move after two or three days because my body and my brain have communication issues.

I’m not going to lie, I still have problems with holding back. Anyone who has MS can tell you some days are better than others. Don’t make it harder on yourself by pushing through when you should be taking a break.

4 years since diagnosis and I’m still learning, my disease is ever changing though so I have to keep adjusting. Today I did the dishes, then I rested, a lot, I also got a migraine. Yesterday though I was in a house full of people for 30 minutes before trick or treating and I should have taken that into consideration today.

If you’re reading this and don’t know MS or anyone with it you probably think I’m lazy for only doing dishes, but I’m not. I managed to give myself a migraine by trying to get something done today instead of resting my body and brain.

Take time, take breaks, chronic illness sucks hard. It’s a learning curve and I am right here with you, learning too.

Multiple Sclerosis Anniversary

Exactly 5 years ago today I got my official MS diagnosis. It feels like so much longer but since it can take over a decade for a MS diagnosis I guess that’s why.

MS sucks, it sucks super hard, for me anyway. Every person’s MS shows up with different symptoms and/or severity.

From 2016 through 2017 my brain volume measured the same. From 2017 to 2018 it decreased in volume compared to other women my age with MS by 11%. From 2018 to 2019 it decreased another 16%.

My “norm” went from the 91st percentile in brain volume compared to other woman with MS in my age group to 64th percentile in 3 years.

While the scans show no new lesions it cannot measure my symptoms or disability. My EDSS score has been 4.5 since a study I did for a neurophysical therapist in 2016. The only way it increases is if I go to a wheelchair.

I see posts about people being “warriors” and envy them. I wonder how they can stay so positive and hopeful. What’s the secret? Is their MS not as sucky as mine or am I just weak?

People have asked my opinion about Selma Blair and her bringing light to this disease. At first I was super pissed about it. Good for her, she has money and unlimited resources and probably doesn’t have to worry about working to survive.

The treatment she chose to under go is not something available to those of us with the same disease because insurance only covers it for most as a last resort or not at all.

Here’s what I do know, I can’t move to Europe where stem cells are approved form of treatment. I cannot afford to do it on my own, especially since I only got a 15 month break from some of my symptoms not even all.

I know my boys need a mom, I know that my experience may help one person to feel understood and less alone. I don’t know what the future holds or what it will look like.

I hold some semblance of hope that treatments will get better before it’s too late. Someone out there hold an idea on how to fix our brains, they just may not know it yet.

Checking In

I realized a couple of days ago that I am in kind of a slump emotionally. This year has been a whirlwind of one thing after another and most of it has been stressful.

I haven’t felt like blogging, reading, genealogy or anything. Today I had therapy and was discussing how I’m just not feeling it. My mind of course goes first to my anxiety meds, changed over a month ago, do they need to be adjusted?

We discussed all the things that have been happening, my switch to keto which is going fairly well. I mentioned Oak (service dog) had a vet check last week and his public access test yesterday. I went to my second graders class too to discuss Service dogs, the different jobs they do and what you can and should not ask/do.

When she asked me how I felt about all those positive things I had no answer… Fine I guess.

Then I told her about the upcoming MRI on Thursday, the annual check of lesions and atrophy of my brain. I love MRIs, I love looking at the disc of images, how else would you ever get to see your brain?!

With her help I discovered the anxiety that comes with this imaging. Being denied my medication for so long before finally starting a new med that I had a lot of side effects from. There is so much pending this test that consciously I wasn’t noticing.

Did the delay cause more lesions? Did the high dose biotin help reduce the atrophy? When in the previous year there was a huge percentage of atrophy compared to “normal” MS patients.

So while I’m not scared to get in the tube for 45 minutes and I enjoy having information, I am very worried about what the information will be.