“I make plans, I cancel plans, all in the name of MS.”
“Friends just don’t understand, I’d rather just stay home.”
MS can be overwhelming in so many ways that most others can’t understand or relate to. Many individuals with MS find it can be exhausting and tiring to get out and socialize. The constant forgoing of plans, canceling on activities that you may have looked forward to for weeks because of a flare-up, or the feelings of exhaustion and frustration that come along with your daily MS battles may push you more and more towards a hermit-like life. We recently shared an article with our community from our advocate, Laura, called Has MS Made You a Hermit? The response from our community members was amazing. Here are some highlights from what they said.
“I tend to push people away that want to help, forgetting this is new territory for them too.”
“Regarding help and independence, it’s annoying because OFTEN people want to help me when I DON’T want help, and don’t want to help me when I DO want/need help”
It’s challenging going places and dealing with people who insist on “helping”. Sometimes, when you go out, others feel the need to constantly try and “help”, when, in actuality, you are capable of doing things on your own. It just may take a bit longer than others, which is totally okay! However, it can get taxing to continually try to explain this to others.
“I feel this way a lot, but sites like this keep me going and help me realize I’m not alone.”
“Thank you for speaking out with this piece. Once again, so relieved I’m not the only one.”
Social Media can also be emotionally exhausting on anyone, yet even more draining for those with a chronic condition. It’s tiring for those that are researching facts and cures and deciphering between lies, truths and half truths. Social Media can trigger many emotions when reading others comments and situations, and can cause a lot of confusion and frustration. Conversely though, social media sites and communities like ours can often provide a safe social haven where you can get the social exchange you might occasionally want, without having to leave your home or expend a lot of energy!
“For me, it’s been easier to not go out and talk to people. Fatigue, cognitive problems and the fact that I really don’t enjoy social events that I would have had fun at before…”
“Been easier to hang out with my dog since she doesn’t ask questions.”
“I love my friends and family, but fatigue says I love my bed a tad more. And with Netflix, popcorn, and wine, I can’t say it’s not time well spent…”
At times, going out socially can cause apprehension and overwhelming feelings, as some attempt to go out for a fun social evening, yet try so hard to avoid negative conversations and situations. It really can set you back and take a toll. Sometimes you may just want a rest from all the exhaustion that these situations bring. Especially if you feel like just getting through each day is a chore!
It is completely understandable if you just want or need to to stay in and stay to yourself to avoid the grueling challenges out there. You know the balance you need, and what your body can and can’t handle. It’s completely okay to say that a hermit’s life is the life for you when you need to!
Thank you for this article. This is so true…I cancel so many appointments, services, dates, parties, etc. in lieu of enjoying a day of relaxation and a day of enjoyment. All this in the name of MS.
I’m glad to know hermitting is normal. I go through sensory overload as well. There is a constant woshing in my ears; like I’m in the car with a window patrially open on the freeway. It can be unsettling at best. My sensitivity to cold can be acute. I know exactly when the Sun has gone down. My body feels it quickly. The fatigue is the worst. I push through it. It just feels like your wading in molasses. I manager yhe best I can. I don’t let others dictate what should be doing. I chose to smoke marijuana because it’s natural. So are the material I use to smoke it in. I’ve not had a shot in years and I no longer need to take 18 pills a day. I’m down to 2-3. I took and mri this year and my lesions have healed. There are no new ones. I still take Tazanidine for spasms during bad weather. I’m ok.