You may already know what MS is or have heard of due to the celebrities that have been in the news recently. If you didn’t know what MS was, here is a link to help understand it a little better – https://patient.info/health/multiple-sclerosis-leaflet. Trust me; just like when searching WebMD for certain symptoms when you feel a cold coming, you can get lost in a rabbit hole of searches.
I feel like I can’t “celebrate” the new strides being made or help bring awareness to a disease that only a handful of people know I have.
I feel like I’m hiding some of myself away as I don’t want certain people to know due to my fears of the unknown.
How would this affect my career?
Will they say I’m no longer needed due to they don’t know how my disease could progress?
Will I have to get a job with more stress and make less money?
Will my friends finally understand that I still want to be invited to events but may not always show up?
Will people change the way they see and treat me?
Will they give me that sad look of pity?
What if I want to have a baby but now I’m too old and won’t be able to keep up due to my symptoms?
Can I go off my prescription for a pregnancy?
Will my symptoms worsen after pregnancy?
Ughhh Stupid fears and mind spinning out of control what if scenarios…
I was diagnosed 7 1/2 years ago and the people that do know are so supportive and loving towards me. I’m sure they have their thoughts and maybe worries of what will happen. They also don’t know the day to day struggles that I have. Most symptoms are minimal. I do have some tingling and numbness at times. I sometimes get wicked headaches and have serious fatigue. I have to ensure I use the restroom right before I leave anywhere. I also need to know where every possible stop for use of a restroom is just incase that sudden urge of the less talked about symptoms of having to pee and not being able to hold it a second longer moment appears. I appreciate the comments of trying to reassure me – like “you’re getting older or I have to pee a lot too.” I don’t think they understand the serious panic one feels over the fact that not only could they pee themselves or even worse poop their pants in public but those events have happened already. I even cringed at typing that last sentence for fear of some unknown person reading it and feeling sorry for me. 😒
How about the welcome to MS Awareness Week I received yesterday. Saturday’s are my medication days, all went well then sometime in the night, I woke up with a headache. I couldn’t do much but try and sleep. When I finally got myself out of bed and to the couch, I was in and out, with ice packs on my head and only getting up to got potty or throw up. I slept for about 15 hours from Saturday night till about 6 pm last night and then slept the whole night. So far I have some lingering pain but seems to be better than yesterday for sure. People really don’t realize the hidden symptoms and it’s really hard to explain them. How do you explain MS headache and MS fatigue to someone who had no idea how it feels to try and stay awake but all you can do is sleep? I’ve tried to pin point the headache – hormones, food intake (salt, allergies, etc.) or just symptoms of this beast I live with daily.
I’ve recently tested out the “let’s tell someone new that I have MS” due to her being my massage therapist. I saw her face change into “oh no, what do I say? Oh dang. She has an incurable disease..” then the sadness came into her voice. Thankfully, I feel like I’m one that can portray that I’m all good and handle this with ease. Plus I was made to lay face down to start the massage.. Honestly, my heart sank at the thought that she was pitying me or was thinking back to her schooling and possibly realizing that my body is causing it’s own deterioration and I may end up with less and less functions as time goes on.
I mean science is making strides with stem cell research (https://www.vox.com/2019/1/15/18182095/ms-multiple-sclerosis-stem-cell-transplant) along with the set backs that twice and many people now need solutions and a cure (https://www.nationalmssociety.org/About-the-Society/MS-Prevalence)
I really do try to look at the bright side of things but some days it’s harder than others. When those days occur, I listen to uplifting podcasts like EmpoweHER by Kacia Fitzgerald. This one really helped today with feeling normal and that my emotions were relevant. 💖 https://itunes.apple.com/us/podcast/empowerher/id1444456380?mt=2&i=1000431016433
I hope you have compassion for the next person you meet and at least a little understanding that everyone we meet is fighting their own battles. I know I will try to remember that as well.
So here I am saying, if only to a few of you, I have MS, I need a cure and I will donate to help find one. I hope you’ll join me.