Oh, it can’t be that bad
These past few months for me have been terribly difficult. I think I have experienced every emotion imaginable. I have cried more than usual, lost my temper for seemingly stupid and even unknown reasons, and become more withdrawn than I ever thought possible simply because my body and brain won’t cooperate.
I can literally feel the changes happening in my life, so much so that if I allow my thoughts to linger on my increasing weakness and struggles, it scares the crap out of me. (That’s just me being honest.)
It’s hard to talk with people about those fears and the crazy emotions I deal with mainly because, 9 times out of 10, I am met with “Oh, it can’t be that bad” or “You just need to think more positively.” I find it to be exhausting trying to explain progressive MS to people who aren’t willing to actually listen.
Here are a few things I wish more people would try harder to understand about life with multiple sclerosis:
1. There is no cure
No matter what you read online or hear people say, there’s nothing that has been proven to eradicate the disease from a person’s body aside from a miracle. There are symptom management techniques through supplements and diet and medications that work to slow the progression down, but that’s not a cure.
2. My symptoms are unpredictable
One minute I may be doing well managing the pain, weakness, sluggish thought processes, and vision difficulties. The next minute I may need to climb into bed and be unable to move for hours. I am not being lazy. I’m taking the rest my body needs in order to function. You have to remember, it’s fighting every second of every day just to survive.
3. Things will get worse
I know you think that’s not being positive enough, but no amount of not talking about the truth will help others (or even myself) come to terms with my reality. MS is progressive. That means that as time passes, symptoms will build and my life will become more difficult. I need to prepare for the possibilities of tough times so I’m not caught off guard when they happen. Help me to not allow my difficulties to be the only thing I focus on, but allow me the space needed to face the truth.
4. I need help
Just because I don’t ask for help every time I do something doesn’t mean I don’t need it. From my perspective, I see the burden I have become on others and know that in the future it will be an even greater need. I also know that I can’t give back like I could in times past. Those thoughts weight heavy on me at times. Regardless, never stop asking if you can help. Just the asking makes each day better because it shows me you care.
5. Please invite me
I know I am limited in the places I can go because I have to ensure accessibility and that it’s not too late or I’m not too tired, but please don’t decide for me if I can join you for a time out of the house. You may hear no more times than yes, but I feel included when you ask.
6. Little things matter
I know it may sound silly, but a text asking how I’m doing or just to say “thinking of you” makes any day brighter. So does picking up the mail, dropping off a meal, doing a load of laundry, taking out the trash or just sitting for a chat. Those things matter more than you will ever know.
7. Don’t get offended
I have a brain that can’t keep information in order. If I don’t remember a special date, have trouble putting words together into coherent sentences or I’m not engaged in a conversation, don’t hold it against me. Most of the time it’s difficult to keep things organized in my head. Even with lots of notes and reminders I confuse things.
1. Simplify your life.
I struggle some days, others I feel I can cope.
I get it. Hugs xoxo
the list is great! spot on.
some days mentally can be a huge challenge. MS is so unpredictable. i just hold on for the ride!
I defiantly have to hold on for the ride too.
You hit the nail on the head, as always. Rarely can someone understand MS and its progression, unless they have MS, too. It’s such a bizarre disease, and each person experiences it differently.
You manage your progression with such courage and grace. Thank you for always being honest about your struggles, too.
This is awesome. Very helpful for me to share with my friends & family. They don’t get it at all.
Hugs
Suzanne
This new season is hard…because I wasn’t ready for it. I understand even when others don’t. Gentle hugs 🧡
As said you’re spot on with this article! Thank you for the article
As said you’re spot on with this article! Thank you for the article
Wow. This really hit home for me very hard! I felt I was reading my own thoughts. It’s difficult when I tell people that I can’t join them just to hear “What’s going on with you NOW!” or “I thought you were feeling better!” It hurts but I try not to let it or I’d be in constant tears. I have explained things to friends and family about how MS affects me. I think I get tuned out – until I get another huge kidney stone or I fall and fracture vertebrae and end up
In the hospital. Even medical professionals will doubt me when I have to go to the ER for treatment. Mostly for pain. They won’t help me with pain meds. Even after a CT scan and X-rays. The last time I went in after fall and was in so much pain I was sent home with a prescription for 3 pain pills -and a prescription for Narcan. I had fractured two vertebrae! I can’t take Tylenol because I also have an autoimmune liver disease! No Tylenol. No NSAIDS because I take a strong prescription anti inflammatory for horrible joint pain. I look fine on the outside. Even when the inside pictures show why I have pain it gets ignored. I guess I come off and a pill shopper because why would they give me Narcan!! It’s not a frequent occurrence that I visit the ER. I have learned to live with chronic pain. I cannot even say how it makes me feel to be treated that way. I won’t go on but I will say how sorry I am that you all understand this and that you, too, have to fight so hard to find some kind of normal. I want more than anything to be a participant in my own life. I love all of my friends and family. I don’t like saying no and wish I could always say yes let’s do it! Thank you for listening and let’s stay strong. 🧡