Hi all . . . I was diagnosed a year ago with MS . . . its something I've felt coming for a long time so it was no surprise to me . . .
I am "fortunate" that I am still walking unaided most of the time and my peripheral tests are still in the normal range . . . my problem? I suffer from all of the "invisible" symptoms - extreme fatigue, easily weakened, random tingles, spasms, and pain, . . . well I'm sure that you all know what I mean . . .
However, because my family can't see what I feel, they assume that I am exaggerating my symptoms or making them up altogether . . . they are constantly pushing me to do things that will just wear me out and exacerbate my condition, I don't know how to convince them that I can't move furniture, or that standing at the kitchen sink for long periods of time just makes me weak, stumbley, and exhausted, or that the nap I take daily is really necessary and not just an indulgence . . .
I don't know what to do anymore, and unfortunately, I've been forced to move back in with them because my disability would not cover my apt. . . . so now this has become a daily hassle and just adds enormously to my stress level . . .
Help! I could really use some advice!
Thanks in advance
How do I get my family to understand?
how to get your family to understand
Dear Maeve,
I don't know. What helped for me was reading stuff on the net under the heading "invisible symptoms" Not that I found a way to solve the problem with my family and friends, but I did find a way to understand why they were and are so ignorant, and whilst I don't excuse it, I don't carry the stress of the disappointment so much. I don't think there is a majic sentence that will get them to understand (I kind of think the majority of the Normals-non msers- have the emotional depth of a car park puddle sometimes) but I think it is possible for you, me, us, to find ways of being less hurt or disappointed by their shortcomings. There was one time back I said to a friend once, when whe greeted me with the surprised (almost disappointed expression) "but you look fine?" - My response was:
(my husband has since warned it was a little harsh, so haven't used it again, but the woman hasn't said it again)
It's MS, it's eating my brain, not my face!
(I must admit, in the following days I did agree with my husband it may have been a little harsh)
good luck
cheers
cris
I don't know. What helped for me was reading stuff on the net under the heading "invisible symptoms" Not that I found a way to solve the problem with my family and friends, but I did find a way to understand why they were and are so ignorant, and whilst I don't excuse it, I don't carry the stress of the disappointment so much. I don't think there is a majic sentence that will get them to understand (I kind of think the majority of the Normals-non msers- have the emotional depth of a car park puddle sometimes) but I think it is possible for you, me, us, to find ways of being less hurt or disappointed by their shortcomings. There was one time back I said to a friend once, when whe greeted me with the surprised (almost disappointed expression) "but you look fine?" - My response was:
(my husband has since warned it was a little harsh, so haven't used it again, but the woman hasn't said it again)
It's MS, it's eating my brain, not my face!
(I must admit, in the following days I did agree with my husband it may have been a little harsh)
good luck
cheers
cris
1- simple part: take one of them with the neuro with you. i had to do this with my own husband. because i'm like you. or was at first. now i just use my cane a lot. my neuro told my husband to get off his butt and help. told him exactly what was going on, and that if i did not get my nap every day, not to expect much from me the rest of the day, including his dinner.
2- here's the extreme, i have done this too. because i'm sometimes an idiot/vindictive bi--h. DO IT ALL. that "they" think you can and should. yep, you will throw yourself into a relapse. and those same family members will have to take you to the er to get you steroids, and actually hear the neuros/docs/nurses, telling them that you are doing too much and isn't there anyone available to help you in the home?
i know, the second one is really bad. and i have not actually done it "on purpose" it has just happened, b/c no one thinks i look sick or damaged or whatever..
ok, i'll shut up now.
good luck.
2- here's the extreme, i have done this too. because i'm sometimes an idiot/vindictive bi--h. DO IT ALL. that "they" think you can and should. yep, you will throw yourself into a relapse. and those same family members will have to take you to the er to get you steroids, and actually hear the neuros/docs/nurses, telling them that you are doing too much and isn't there anyone available to help you in the home?
i know, the second one is really bad. and i have not actually done it "on purpose" it has just happened, b/c no one thinks i look sick or damaged or whatever..
ok, i'll shut up now.
good luck.