Setting Boundaries without Being a Bitch

Personally I have no issue with enforcing personal space boundaries. Having nerve issues and a compromised immune system requires I set those boundaries regardless of politeness.

Setting boundaries for children, friends and family are a little harder for me. I’m a people pleaser by nature and if I’m able to help someone I try, usually without regard of how it impacts my body and/or brain.

There are blogs, books and articles about setting boundaries for kids that are healthy, so the idea is easy enough with kids but sometimes I’m tired and my body hurts and I give in so I can just be done. My kids know this and usually try to wear me down, obviously that is a problem, I am actively working on that. I’m the grownup so we all know our places in those situations.

All of my friends and family know about my MS and the correlating issues with it. However, sometimes, I agree to something that may be a reoccurring task and unless you tell me I’m done, I’m going to assume you need me to do it. I have to make calendar invites and set alarms so I don’t drop the ball. If something changes, I expect the receiver of my assistance to tell me. Though this doesn’t always happen and causes extra work of verification on my end which causes me anxiety.

That’s where the people pleaser and boundaries needs a swift kick in the butt. I want people to let me know what’s happening, however, because I’ve got it covered it seems to be a low priority on their brains.

My aunt is amazing and keeping me updated on things when I’m helping her with things. If dates change she lets me know as soon as she does. She is organized and knows how taxing the tasks can be on me so she does what she’s able to keep me informed.

So, how does one go about setting boundaries with people after the fact? I’m struggling with this, if I had foreseen all the potential issues I would have set clear boundaries in the beginning. Now that it’s been a thing that I have been proactively checking each time how can I set boundaries without coming off as a bitch?

Turns out, an honest communication works. Thinking worst case isn’t always how it works. Your friends and family will understand, especially if you have a logical reason for your needs.

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.