[unaluna]

Ugh. I had guests over to swim last weekend. Then they said, what say we all go out for dinner? I checked how I felt and said, I think I'm done for the day. This was after 3 or 4 hours. I had a mild stroke last September that left me crosseyed for almost 6 months (I'm 61, my friends are a few years younger). Anyway, I just got an email where the woman told me to "get some sleep in advance" so I could go out to dinner after swimming next time. This was after I explained to her, via email, that stroke survivors have fatigue issues, probably due to balance, that they are just starting to study.

Dinner is just not going to happen. I was slurring my words and needed to lie down. Maybe we can do brunch before. I guess I should be grateful I still have friends, but what part of I'm pooped did she not understand? I feel like I gracefully drew a boundary, and she rather ignorantly stomped over it. Now I have to bring it up again - I don't like that. Is that what they call negotiation?

[NWgirl2013]

Wow Hankster! You are such a sweet heart to have people over to swim! Can I be your new friend?!!! I love swimming ...

No really, your friend probably just thinks she is being encouraging or something. Who knows ...? One of my dear friends is in this situation too, can't really leave the house anymore, for very personal to him reasons, so he just says no. Doesn't feel required to explain anymore, even when people press him. He just waits for them to stop sputtering or whatever and changes the subject ...

I find a smile goes a long way sometimes and I don't have to say anything
But you could also suggest She bring dinner in ...that would be thoughtful of her!

Take care ~

[DolphinLuver]

Hankster,
I can very well relate, and some people just refuse to listen & understand when you tell them how you feel. I have Lupus, Fibro, Lyme Disease and am Fatigued all the time, although there's moments when I have some good days, but even then I try not to over do things. People really need to be more considerate, and most of all listen, and NOT be concerned so much with their needs & wants. Great you stood your ground, and continue to do so.

Have a Great Evening!

[Tamster]

considering buying a pool just to be able to move my muscles sometimes. 2 of my doctors have said I should get one, the pain is intolerable and nothing works. It seems that no one understands this pain and I try not to talk about it too much .

[sabby]

I think that unfortunately, most people don't really understand that fatigue is not usually remedied by "taking a nap" in advance of something. Maybe this person could use some help in understanding what you are going through and why just taking a nap ahead of time won't necessarily help you keep up your strength longer.

I think this pdf pamphlet may be some help to you to help your friends understand better.

http://www.stroke.org.uk/sites/defau...r%20stroke.pdf

Hang in there hankster, I'm sure you are doing the best you can.

[Gus1234U]

i'm sorry to be able to say i know what you mean, Hankster~! so many people in my life are young and strong, as i once was, and they just go and go like the energizer bunny~! it's inconceivable to them that a 5 hr car ride will leave me flat for 2 days... :P

i nap almost every day, and sleep 6, 8, or even 10 hrs on top of that, but that's the only way i can even keep my attention span up. if i weren't for PC i would have no social life at all. and recently there have been so many demands on me, so much stress, i am exhausted all the time.

now my cousin is home visiting and wants me to go and go with her and her 2 little girls,,,, oh nooo~! she just can't understand! i try to tell people, "imagine i'm like a 3 yr old, and when i get tired i get grumpy, and then mean; red in the face and stupid, staggering and then running into things"... they just look at me, like i must be imagining it... who would imagine such things ??

well, just do not feel so all alone~ get creative in educating your support group, and remember to be (and express) grateful for the sharing of company ~!

best wishes,
Gus

[avlady]

I know my fibromalasia, arthritis etc... makes me unable to do certain things. I just let them know it's not such a good idea for me to participate unless they want me to have a seizure or something jokingly, but they get the picture.

[planejane13]

It is hard having fatigue. Im kind of going through the same thing. Friends and family invite me to lunch and parties or outings all the time. I have Postural Orthostatic Tachycardia Syndrome so when I stand and sonetimes sit, the blood vessels in my pelvis dont constrict and the blood rushes to my feet, causing loss of oxygen to my brain, causing fatigue and fainting. It is difficult because to everyone else, us fatigue sufferers may look fine, if only we could make them feel how we feel inside. Unfortunately there are no symptoms that can be seen with the naked eye. I politely remind people (a lot) that my fatigue probably wont allow me but if anything changes Ill let them know, or if its family, Ill pull up a webpage explaining my condition and have them read it. Sometimes we have to "prove" ourselves, otherwise its not believable to them. Every once in a while I have a good day but my normal routine is to sleep for 9-10 hours and then nap for 2-3 during the day. We have to schedule our lives around our sleeping and this is frustrating. Its nice to know there are others who are going through the same thing, it helps in not feeling so alone. I hope this helps and wish you well!!!

[yellowted]

people simply do not realise how tiring it is to do the simplest of tasks for people who have lost /are relearning lost automatic movements which others take for granted.
i often have to remind people i will need a duvet day after a busy day, i also have a rule that i do not leave the house before 11am, that way i know my day will not be too long! if i am out in the evening i must rest in the afternoon or i will pay dearly the following day. I arrange meetings at home rather than in the office so i do not have to rush about, if friends want to meet up and go on somewhere i try to do it that the meet up point is at my house so my energy is not wasted getting to the meeting point. i cook for four and freeze three so i have a variety of frozen meals which just need microwaving to save cooking every day etc so my energy is used for having a life. people are getting better at respecting when i say i can't do things , but still need reminding sometimes.
the hardest thing i find is getting people to commit to plans, they still do not get that i need to know well in advance so i can plan my energy around things.
being fatigued does not stop me doing the things i love, it just limits how much/often i can do these things. life is for living.

[~EnlightenMe~]

(((Hankster)))
I wouldn't negotiate this boundary. Use your humor to say no, again.

[Gus1234U]

are others suffering with this heat wave?? omg~! i nap in front of the little portable water cooler, we are having record highs, 100~! in June~! if you don't see me it's cause i'm asleeping

Gus

[unaluna]

Thanks for the new wallpaper! I didn't realize we were twins, gus! Are you wearing nylon anklets?? Those have got to be hot! Fortunately it's cooler in michigan this year, we are hardly hitting 80 most days.

Hankster,
I think you don't even have to explain your tiredness. Your friend just doens't listen. Even if you said you were having a heart attack she would still try to control you. I am sorry she didn't listen, must be hard to do anything after a stroke and I think giving up 3 or 4 hours to spend swimming with her was more than generous of you.
I have fibromyalgia and get drained so quickly and am constantly explaining to people- I do not have the energy for that, they don't listen because they are not willing to walk in our shoes and to experience what we experience and thats ok, they are not obliged to, they are only obliged to respect anothers boundaries.
Next time tell her to bring the dinner