Has MS Made You a Hermit?: I read an... - My MSAA Community

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Has MS Made You a Hermit?

rjoneslaw
rjoneslaw

I read an article "Has MS Made You a Hermit?"

I have to say I have become a hermit. Have you become a hermit as well?

No matter what I'm doing I know at a certain time a day fatigue is going to set in and my mind shuts down completely. As a result I stay home because it's my safe haven

Here is the link

multiplesclerosis.net/livin...

20 Replies
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greaterexp
greaterexpCommunityAmbassador

I do dread afternoon and evening social events due to mental and physical fatigue and increasing muscles spasms or weakness. I have forced myself to go, but only for my husband's sake. I know there may come a day when I will be completely unable, so I want to do as much as possible (especially for him) while I can. I wish i could say that I enjoy those outings, for I'd much rather be in pajamas and watching an old movie.

rjoneslaw I am right there as well. I spend probably 95% of my time in solitude. The other 5% of the time, groceries, pharmacy, and other errand related issues. Just basic needs. Every once and awhile I get out to see a friend. However, it is few and far between. Social interaction causes me to lie. I don't want others knowing what I'm going through, knowing my suffering, my pain, my emotional distress. It makes things worse when I see the distraught looks when I can't help making noises from the agony in which I suffer. If I am unable to bring a smile to my face, stand upright with my head held high, shoulders back and on good posture, I hide. That also sometimes goes for my writing, I often start posts only to delete them when things are reflecting through and I begin having a dark sense to what I am venting about. Sometimes I just have to find a rock to crawl under. My travel trailer has become my sanctuary. I was lucky enough to find a beautiful spot in a RV park with extra large spaces. Lots of grass, Armadillos, Road Runners, and just alot of wildlife just on the edge of town. Its very peaceful for the most part. Not to mention a beautiful sycamore tree right out front to help shade me in the summer time. I really have a good understanding of becoming a hermit.

Kenu
Kenu in reply to Allen5280

Where do you live and what’s the weather like 🤷🏼‍♂️. 🐾 Ken

Allen5280
Allen5280 in reply to Kenu

I live in southern Oklahoma and today is like spring. 74 and windy. My Furnace was running last night and mu ac is runnimg today! 😂However we get our fall, winter and spring about a half a dozen times from November to March

I am still lucky enough to be able to drive myself to Doctor, grocery store, pharmacy, and normal chores. I would like to do more but don’t have the income to go 😔. Being forced into SSDI early has been difficult to deal with 😞🤬 I do feel lucky to have what I have and able to do, but is hard and I just tell myself I need to do it 👍. 🐾🐩🐶😉🙏🙏 Ken

SometimesCrazy
SometimesCrazy in reply to Kenu

I feel the same way Kenu and allen. I was curious if maybe we could start just a forum for people that are in hermit or solo mode for whatever the circumstances. Divorced, never married, don't particularly have a desire to be in the general population. We are different even though we might not look like it. We look disabled that is very en vogue these days but I don't want to be engaged right now with normal well meaning people. Is there something for disabled hermit people looking to hang out with disabled hermit people looking for a comfortable way to try to get back to mainstream population hopefully . Any thoughts anyone ? Xxoo

rjoneslaw another good link. This forum is my safe haven, I can be myself and don't have to hide. Before ms I had a huge circle of friends but now because of fatigued and not been able to sit for too long, I don't mix anymore. I was actually jealous the other day and I am not a jealous person, two of my friends went to watch Swan Lake Ballet in the middle of the afternoon. They said they didn't invite me as they know I get tired 😴. Oh well, such is life, blessings Jimeka 🦋 🍫

Allen5280
Allen5280 in reply to jimeka

Yes, I’ve dedinitely been afraid to travel or commit to events because I never know how I will be feeling that day. I prettt much take the kid to Daycare and then work from my bed until my husband and kid get home. Hang out with them until 8. Get in bed, catch up on social media and go to sleep.

Hit repeat.

Fancy1959
Fancy1959CommunityAmbassador

Rjoneslaw, it's Fancy1959. The very nature of this terrible monster and how it sometimes weekly,sometimes monthly, increases our disability makes us destined to be Hermits if we do not fight it. It takes so much more effort to do the little things that everybody else takes for granted. We have to plan hours in advance to do basic errands. We have to make sure we take along anything and everything we might need depending on our MS and the ways it affects us. I have bladder issues so I must always pack extra clothing shoes and underwear or depends type underwear. I also have to pack a walker for stability and often pack accessories for my Walker so I can be self-sufficient when I make my stops. I prefer to Take Along my electric scooter but right now I'm under weight restrictions due to my shoulder surgery of picking things up and I cannot handle the scooter by myself in and out of the trunk. And I'll be darned if I can get my screwy husband that I love to invest in a small scooter hauler that fits into a hitch on the back of your vehicle. They often have little drop-down tailgate that make it easy to just drive the scooter on and off.

I also think that many of our close friends continue on with their active and busy Lifestyles and we sometimes get left in the dust because it's hard to keep up. The important thing is to remember not to give up. To become a Hermit is to become a small introverted person and depression just seeks us if we do that and attacks us all the worse. Since the monster doesn't affect our friends like it does us they think nothing of going out in the heat in the summer, sunbathing, doing outdoor sporting activities that we know deep down in our hearts would be bad for us so we decline invitations and the cycle snowballs from there. I often feel so very blessed to have three wonderful sons who never leaves mother behind. Who will on the weekend offer to go to matinees with me just to get me out of the house. And who pitch in and help with anything I ask. And finally there's my husband who also make a valiant effort to help me and to do things with me that otherwise I could not do. God bless this chat room for such good support, our families for such love and understanding, and our spirits for being so darned tough.. Together we are stronger!

rjoneslaw I am a complete hermit. My birthday was a few Fridays ago and my hubby took me to the nicest restaurant in Salt Lake City. I never go out at night and was reminded why. I fell asleep in this gorgeous, super expensive establishment while I was eating! 😝 My sweetheart just panicked, kept saying, Kelly, you HAVE to wake up. This is why I love my bed from five p.m. on! I never see anyone anymore, it is too difficult to get around or make plans. And so many buildings are not wheelchair friendly. Nope, I am a homebody!

I have definitely become a hermit, rjoneslaw. Sadly, my son and daughter-in-law have learned not to invite me to family events with her family - because said events usually don't start til 9:30 pm or later, when I know I would be just a blob on a chair! They've accepted this fact gracefully and without fail will offer the invitation, beginning with "I know this is probably too late for you, but, if you feel you could make it, we'd love to have you".

In my case it's true, I have Progressive MS and I can only use my left arm and hand. This too is slowly going away so in my case this is a necessity for me. Meditation is the thing that keeps me sane.

John, I know what your talking about. I have SPMS and it seems the only thing that still works is my right hand for typing. Scooterjon at scooterjon58.com

CalfeeChick
CalfeeChickCommunityAmbassador

Absolutely, especially this time of year. Colds and flu, cold weather, exposure to germs everywhere. I went to church on Christmas Eve morning and was sick with a cold by that afternoon. It took weeks to overcome that cold. Fortunately, I can watch the sermon on the PC and download a bible study sheet. My friends do try to understand and we visit by phone. This forum is filled with my friends that understand what we are each going through protecting our health as much as we can.

CalfeeChick
CalfeeChickCommunityAmbassador

Absolutely, my circle of friends was 50-75 people I always believed were my close friends and now that number is probably less that 10-15. Less than 5 if it's the ones I know for sure. Most recently, a friend of over 10 years, I only hear from her if she wants me to sew something or help her with something. Never thought of her as one that would cut the ties like that. AND you know what, I care less and less.. My true friends call and ask how I am, if I need anything, etc.. That's the less than 5.

Instead of "hermit" I use the word "recluse" to describe my life. I don't do anything anymore and it's all because of MS. The only time I get out is to see a doctor, whoopeee! Once spring comes in ND and it dries up I can take my scooter down the street where we have a little mall, DQ and a dollar store.

Nothing works below my waist, most days I'm in bed by 8pm and my wife has to help me with everything. She helps me from putting on clothes to picking up stuff I've dropped on the floor which I'm doing more and more. Now, I've noticed I can't even button my shirts anymore. I agree with you RJonesy and that post. I agree with anyone whose brave enough to put up with this crap called Multiple Sclerosis!!

Scooterjon at scooterjon58.com

Has your doctor tried PlasmaPheresis on you? ❤🌷

Only sometimes. I try to stay social a little. My kids are in sports (field hockey, softball and baseball) so I stay busy and see/talk to other parents. 👍😊❤🌷

I just came across your old post. I think socializing American style is overrated. We have this forum, and that's more socializing than I had before I had any MS symptoms.

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