i try not to talk about my symptoms unless they're visible so i don't freak them out when some new symptom arises. sometimes it feels like the basic help i request is always met with sighs and refusals. for instance, i have heat intolerance. where i am it's still brutally summer. with family visiting, i awoke today to dizziness, brain fog and worsened ataxia. sometimes pmt makes me extra wobbly as our body temp increases, so i wasn't sure why i felt worse. my mother told me the family member was freezing, so she told them to adjust the ac. this evening, i told said family member i have heat intolerance.
my mother said, 'she knows that." so they both knew and just disregarded it. i offered her blankets and my mother said, 'it's only one more night." i know they don't understand so i went back and told my mother about my worsened symptoms. she told me i was being unfair and how dare i make a visitor feel uncomfortable.🙄 the irony.
i'm working on moving, but in the meantime i'm stuck with someone who should care, but just doesn't. it doesn't have to be a mother, but does anyone else have similar experiences and if so, how do you cope? the emotional hurt is just as bad as the increased staggering.
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hi BlanketTime1 I know the feeling. my husband asked me to pick up stuff he dropped outside. Really? Then he said the most childish thing ever: "I help you when you need help, Why don't you want to help me?" this helps me remember he just doesn't get it. This happened last night which led to a larger argument. How i handled it? 1. Prayed for him, 2. talked to friends who have a spiritual center/higher power and who love and support me. 3. locked my bedroom door and stayed in my room until the violent feelings passed. (not really violent) :0
violent feelings😀. she said something similar. "you need SO MUCH help." the funny thing is, i don't, but i barely have enough spoons to take care of myself and often find myself having to rest up after. no way do i have enough spoons to look after another human being.
A certain family member of mine is one of the least empathic people I've ever known....not just regarding my MS stuff but with everything and everybody.
She will never change and once I let the idea that she'd change go (and her-lol) things are so much nicer.
I'm not advising anyone to dump their family member but for me, it was a very good decision.
As for house guests that lack understanding.I'd tell them to stay at a hotel next time.
They might give you a hard time but too bad, ya know
kdali "spirit animal"😹. i didn't even think about the hotel bit. the funny thing is, my friend said my visiting relative probably felt guilty, didn't know how serious heat intolerance is b/c my mother dismissed it. and when i looked at the temp the day she left, she'd actually lowered it more than i do.🤗 which is where the hurt comes in. someone i rarely see was more concerned than the person who is supposed to love me the most.
It is tough, BlanketTime1 , but you have control over your own actions. I had a few people in my life who were ‘toxic’, so I either stopped them from being in my inner circle, or I minimized my interactions with them. Similar to my ever increasing food intolerances , I know how miserable I am when I ingest them. So far, I haven’t missed those ‘friends’! As for the foods, that’s a work in progress! Keep Smiling, my friend!
Hi Carole, can we talk about food intolerances? Saturday I had some gluten free crackers and "coincidentally" i had trouble walking and couldn't stop peeing. D@rn. no more crackers. I usually eat unprocessed food but it was supposed to be a treat. What happens to you when you are food intolerant?
Horrible stomach cramps, Sandydemop ! I am going to the doctors to see what could be the reason behind my latest pains. You should let your doctor know about this. Perhaps they could let you know if those crackers were really the culprit!
thanks Carole, she is very conservative so would probably say it was unrelated. But it happens every time i eat processed food. I'm going to do a stool sample test to see if there are any unwanted microbes in there.
carolek572 i hear you on the ever-increasing food intolerances! do you have ataxia? my food intolerances seemed to increase exponentially once ataxia set in.
i think i have a hard time letting go of expectations (which is the key here, isn't it?) b/c she's my mother, but i'm working on it.
sandydemop1 i also have this increased staggering thing when i eat processed food. for me, i think it's the xanthan gum. unfortunately, that's in almost every gluten free treat!😢
hi BlanketTime1 switching to plant based whole foods seems to work for me. Once when I had sugar free ice cream everything went haywire!! wish you the best.
Yes, it happens. I also tried never to talk about my M.S. problems with my mother, father, and sister who lived with them. My dad had his own health problems. My mom too, but also did not think anything of mine. My sister, toxic, to the point where even if I wasn't having any problems, she made me physically sick. She had psychological anger issues. Why? She never worked except for a short time as a therapist. You have problems, so you become an expert therapist? Or seeking solutions for yourself? Anyway, the whole gang never understood at all what living with M.S. was. Dad got sicker. Mom too I guess. She shot and killed dad, and herself. Sister got every penny from them. So that's how it goes. At least my sister doesn't confront me anymore. She got everything after I worked way too hard for too many years, giving everything I made to my parents for several years, definitely does not want to see me anymore. Couldn't live with it, after the whole time living like a queen.
Life goes on. I lost my pet hamster when I was a kid. Buried it in the backyard. Then got a bird, and then a fish...lots of fish...now I've got a cat, that loves fish, the smellier the better. Life goes on. Do you forget? Mira? The hamster, I did not name it, it came named? Rest in peace! LOL!
MarkUpnorth i'm so sorry! i often think my family would make for a great b soap opera. my dad understood, but it's b/c he was also sick from agent orange. i think his denial was about feeling guilty. we know my illness came from his exposure, but i never thought (like he thought) it was his fault.
your sister sounds like a right c***. i can't understand why you got nothing after helping support them? and she probably knew that. you'd think she'd try to help you just b/c of that, not to mention ms. i don't think that's something you could completely get over. i hope you are learning to live with it.
i love your wicked sense of humour. i told my mother chronically ill people develop a twisted sense of humour b/c it helps us cope. good on you! and thanks for sharing with me.🤗
Haven't seen her since she stayed with us right after, but since she left, and let me know it was "their will" that it all goes to her. Hoped for years she would correct that. Nope. So we simply don't communicate any more.
sandydemop1 there's no history of neuro/neurodegenerative disease in my family. my dad was exposed. he had a roommate once whose agent orange exposure led to this rash that gave him tumour like lesions, affected his breathing and caused heart damage. though there was no history of anything like it in his family, his son had the exact same thing. VA admitted the father's was agent orange related and pretended the son's wasn't. though scientists in the states deny it, agent orange studied by other countries (not complicit since they didn't make the poison) have proven the effects are intergenerational.
along comes my dad who developed parkinson's after his exposure. i have another sibling with an unspecified neurological disorder. i haven't been diagnosed. in fact i've been in limboland for years and years. i had one neuro who suggested i'd developed something like ms. the other neuros have agreed, but back to that one. when i told him about my dad's exposure, he shook his head and said it might be why 1) i have odd progression and 2) i'm so hard to diagnose.
that stinks. Sounds like they just don’t understand at all. I would have to remove myself from the situation. And then pray for them. I guess that would be an example of trials and tribulations (MS) making you stronger
BlanketTime1 I feel your pain. My daughter is always hot and I have cold intolerance, my spasticity gets so bad when I'm cold. She always say, it's not cold and I have to remind her that she's not cold but I am. They just don't get it.
i try to remember that b/c my mum is older. it's why we live on separate floors. i hated her getting so cold she couldn't warm herself, but she doesn't reciprocate.
I can understand, my physical therapist's room is warm to me and when I say something about the heat affecting me he says he's cold and doesn't adjust the temperature
Family members can say and do stuff that can hurt. I know. My cousin put out a lie to make himself look good to my brothers, sister and mother n law. For over 10 years they were against me all the time. And after they found out the lie wasn't true; they started talking to me. My mother law is just old and crazy. I look past her and keep moving. My suggestion is pray about it and leave it in God's hands, he will work it out. 🙏🏾👍
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