Social Fatigue Post... What can we do?

[Tracy42]

That you so much for the social fatigue post! There isn't anything I don't relate to. And, I have been wanting to give up. I cancelled a Dr. Appointment yesterday, fatigue.... Then I pushed myself in the afternoon to go to the store and it was TERRIBLE. It's like I am a lost confused old person, with a racing heart trying to accomplish something, anything. I wanted to get stationery, and could not find any, also a birthday card, but couldn't find the right one. After 10 minutes, I was having to hold onto things, I grabbed a soda and some gum and got in line. I thought JUST GO HOME, but that would feel like defeat. I fumbled with my money and quickly shoveled myself off to the side as to not slow down the normal people.
Here is where I could use help, brainstorming. I DONT WANT TO GIVE UP! I find when I try to participate and, well I have to retreat, I get depressed. Like why bother at all. My life is to simply exist. Sleep, take up real-estate with this stupid disease, and I'm 48. I could have to do this (and worse) for a looong time. Ugh. What could make it easier for us? I feel like I have PTSD to the world. Do you think a therapy dog could help as a buffer? Stabilizer? Any other thoughts? Maybe I need to move out to the country.? God has been great to me, so I realized he wants me here (I really wondered) but there has got to be an easier way.....

Thanks for listening
Tracy

[marti]

If we had a "Like" button I'd "Like" your post.

I totally understand cancelling appointments, shying away from going anywhere, talking myself out of shopping or gettin gas in the car etc etc etc.

It's all so tiring... so exhausting.

And I have to agree completely with your feelings about your heart racing, feeling old, fumbling with money and just going home!

What can we do? I don't know.

[frosty123]

Do

What you can, don't do what you can't, that is my take on having MS. So far, I am new, but that is what I have concluded.

[Tracy42]

Thank you!

I am trying to figure an action plan, when getting out is just soooo uncomfortable. maybe a service dog? I am not sure. Feels like it could take the pressure off me to look "normal". A dog could lower my heart rate and help people to understand (and keep some distance) no matter how I look, I need a buffer. Thank you for you responses and I'll let you know as I try to figure this out. Thank you so very much for your responses. Thank you!!!! Tracy

[Tawanda]

maybe a service dog? I am not sure. Feels like it could take the pressure off me to look "normal". A dog could lower my heart rate and help people to understand (and keep some distance) no matter how I look

I love this idea.

[KatieAgain]

A dog, not necessarily a Service Dog would give you companionship. I have 10 pounds of fluff that gives me unconditional love and friendship...and he does not shed!

As far as outings...it sounds like you are trying to be fully ambulatory when you shouldn't. I would use a Rollater...one with a seat and shopping basket. A Rollater will provide you with the necessary buffer as well. You can sit down and look at the cards.

Go shopping when stores are not as crowded.

Plan events such as a game of cards at your home or going out to dinner or a movie. Something that does not require a lot of physical effort. When I was in a flare once a friend of mine and I did a 4-night marathon of "The Tudors" at my home.

Order stuff online and buy as much as you can in bulk. Those Birthday Cards for example...buy several.

Find a hobby. I think I was the only 30-something taking quilting classes. It was addictive and at 51, I am exceptionally good at it, and I have fun doing it.

I know this is a hard one, but exercise every day. Even if it is from a chair. Make it routine.

Go to your local Senior Center and volunteer to play cards and board games. They will love it and so will you.

BTW...I permanently retired at 46. I know how you feel. I am doing better because of Tysabri and not as bad, but I do have limits.

Also, one thing I have done to improve my life is I have a standing appointment to have my hair done every week. I have long hair and it is too tiring to wash, blow dry, flat-iron etc...

A game plan is always a good thing... Be creative.

[Tracy42]

Wow.

Thank you Tawanda, and Kate Again, WOW.
I need to sit with this, because you are 100 percent right. I do go out as a "normal" person. And, sometimes I can do it. And sometimes I can do it and am MISERABLE (and no one gets it) and now if have started to just isolate, give up trying.
I have been called to a great church (and hold onto the chair in front of me so the music doesn't throw me back). Also, I called the MS society about a navigator, and the church has set me up with a therapist. Also, and I am just sharing in my safe home here, I decided to try an anti depressant, wondering if some or any of my fatigue could be depression. Working out, was something I did daily, and after my last episode, I have been to embarrassed, tired and mad at the work in the gym to regain what I lost. But really? Cry me a river, right?!
I am just typing off the cuff here, but after 8 official years fighting this I have to ask myself why I would choose to eat rice for a week, because I can't get to the market, and have never considered using a roller aid (can't remember the name). Thank you for this....and I have lot to think about this morning.
Much love,
Tracy

[Dale76]

Thank you Tawanda, and Kate Again, WOW.
I need to sit with this, because you are 100 percent right. I do go out as a "normal" person. And, sometimes I can do it. And sometimes I can do it and am MISERABLE (and no one gets it) and now if have started to just isolate, give up trying.
I have been called to a great church (and hold onto the chair in front of me so the music doesn't throw me back). Also, I called the MS society about a navigator, and the church has set me up with a therapist. Also, and I am just sharing in my safe home here, I decided to try an anti depressant, wondering if some or any of my fatigue could be depression. Working out, was something I did daily, and after my last episode, I have been to embarrassed, tired and mad at the work in the gym to regain what I lost. But really? Cry me a river, right?!
I am just typing off the cuff here, but after 8 official years fighting this I have to ask myself why I would choose to eat rice for a week, because I can't get to the market, and have never considered using a roller aid (can't remember the name). Thank you for this....and I have lot to think about this morning.
Much love,
Tracy

For me I know part of it is a fear of being watched. Basically I know I move slowly for my age and I have a difficult time with the simplest things, like getting my car keys out of my pocket or unlocking a door. I feel like people are watching me and judging me as lazy or slow in the head.

Having a rolleraid would help me too as that is the other issue is not having anywhere to sit. I 'm just not ready to go to that yet. I have been planning to get a really light weight folding stool I can carry with me. I really don't get why our entire world is setup for people to stand everywhere! What is so bad about sitting down that they can't have more chairs in public places?

[CatMom0001]

I feel your pain

Yep, I would push the "Like" button, too, if we had one.

I still enjoy doing some things, but I have armed myself with a cane for those times when walking from the handicapped spot at the market looks about 100 miles to the door of wherever I'm going.

Also, even if I go to the market for one thing, I ALWAYS get a cart. Pushing the cart gives me the stability I need when getting around the market.

Also remember, sometimes our fatigue lets us talk ourselves out of doing something. Sometimes I make myself do something and have a great time; sometimes I make myself do something and I come home early.

Think things through. Is it that you don't want to go wherever, or is your body really rebelling?

Keep us posted!
Robin

[Tracy42]

Not ready

Dale, I'm not ready either.
I feel the same, very self conscious. Like a deer in headlights.
I feel I have PTSD to the world.
I thought a service dog might help, be a buffer, allow me to move slower without feeling like I am being watched (I think sometimes I am watched for shoplifting, because I am so slow).
I will discuss this with my navigator. And I love the chair idea, thank you.
I ran off the Social Fatigue thread and put it in my neighbors mail box. She does not get it, and I hope it helps he, and me.
I still want a life, a good life.
Thank you for your thoughts and ideas.
Love,
Tracy

[MSW1963]

Tracy42, ditto here on nearly every point in your post.

I particularly like the 'Cry me a river, right?!' part. I've also cancelled neuro appts due to fatigue, felt the effort to 'get ready' was about all I was capable of, for both doc appointments and social engagements, and definately have eaten more than my share of rice, to the point I thought I'd gag on the next bite.

I'm a bit shallow and vain so I understand your hesitation about the Roller, plus my neuro has not exactly suggested any type of mobility aid, despite my 'stooped posture and shuffeled gait', and the many times I mentioned that I'm only able to shop if there's a shopping cart to hold on to involved, and if it's a smaller type market or retail store.

But I also realize even the most brief exchange with someone, be it the clerk at the store, the MS nurse, etc., lifts my spirits. I make a point of getting out of the house every day.

BTW, the convenience store clerk where I regularly shop at mocked my walking last week. This clerk has also made regular comments like 'come on, you can do it' to me when I've had particularly difficult days walking.

One day he dropped and fumbled my items including my card and I said 'come on you can do it' to him. He remarked that I was repeating comments he made to me in the past. As convenient as it is at the corner of my street, I haven't been back there since he mocked me. What a ***, in spades.

Anyway, just to let you know you're not alone, even after your 8yrs and my +15yrs since dx. I hope I figure this out some day, but I'm not too optimistic that's going to happen. So cry me a river, right?

Huggs going your way!

[Mermaid Susan]

My Rolling Walker

This is a wonderful thread.

I just want to add my encouragement to use a rolling walker.
I bought one this summer, and it has expanded my world. I thought I was doing OK with my tall cane because it was so helpful with my balance. But I didn't realize how much my fatigue was inhibiting my choices. I did not have the ability to endure even the most interesting events. And attempting a necessary errand or appointment would demolish a whole day.

With the walker, which has a mesh seat and a mesh bag to carry "stuff," I can take the little rests I need. And I can always have a bottle of cold water with me to settle me down with a little break. I can pause and really experience my life.

I can't believe it, but I went to something called "The International Festival of the Horse and Drum!" Arenas and ceremonial grounds all over the place. It wasn't until I had that wonderful day that I really appreciated how small I had let my life become.

Take courage. Be strong.
Stay lifted,
Mermaid

[Thinkimjob]

There's a "Where's the nearest public toilet?" site for Queensland. Very handy, in a strange town, if you've got your phone on you.

Thinking of starting an "easier places to shop in this town" site for those of us who get extremely tired, or can't walk much, or who use a wheelie walker or a wheelchair.

Points for short distance from door to counter, no stairs, no loud music, friendly staff who offer to carry your bags, chair to sit on, scooter to ride if need be, handicapped park out the front etc.

And maybe a "beware" site for some of the others.

[Dale76]

There's a "Where's the nearest public toilet?" site for Queensland. Very handy, in a strange town, if you've got your phone on you.

Thinking of starting an "easier places to shop in this town" site for those of us who get extremely tired, or can't walk much, or who use a wheelie walker or a wheelchair.

Points for short distance from door to counter, no stairs, no loud music, friendly staff who offer to carry your bags, chair to sit on, scooter to ride if need be, handicapped park out the front etc.

And maybe a "beware" site for some of the others.

Yes that is another big issue for me is washrooms. I can rarely last an hour without a washroom but there are times when I need to go after 20 mins. In my area the public washrooms often get trashed so very few businesses offer them anymore. I have even seen gas stations in my area that do not offer a washroom!

[Tracy42]

Ditto

On the washroom issue!! I want to write more, but I need to nap. Yep, I do. I am going to take these things and see if my navigator can help me come up with more ways for it to be a more friendly world for me. I'll let you know
Thank you for helping me think about that the quality I long for my be just as distant as my ego.
Oh, I don't like the way that reads, but there it is.
Thank you

Much love,
Tracy