Last reply 1 day ago
People think I\'m faking

It’s very hard when people you are closest to you think it’s not real even though they know you have seen all the docs . I’m ok do we awhile then all of a sudden it all comes out I shake I can’t think caint find my words.when I try to explaiin things it comes out completely wrong. Loosing my eyesight. Short term memory is going fast. I hurt all the time in winter months I bounce and shake so bad I need a cane or walker. In summer I feel like my insides are a raging inferno and I have to be iced down. And they get mad and frustrated cuz I caint remember what I did or said five min before. my doc said I can not work . I also server epilepsy. Raynaud’s desiese. Sever high blood pressure brain shocks. And I already have had strokes I feel so guilty ashamed and I’ll don’t know how to make them understand I’m not faking. Help

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itsmewithms
6 days ago

Hi – you don’t have much in your details to know your history but it is important to have a network of professionals and friends for support. This disease, and it sounds like other challenges you have, are hard for others to understand.

My husband tends to think that I should be able to “eat my way” through my disease. After all Terry Wahl did it…ok that was after receiving chemo (Novantrone) and electrical stimulation but that isn’t focused on so much. He thinks that maybe by just eating kale and liver I can beat this. This isn’t supported by any studies but she is working on it 😉

It seems that Drs pretty much repeat what the Pharma reps have convinced them of.

Not sure if there are any studies, books or material that you can present them with. If they are truly interest and will invest the time have them check out this site and it’s posts, have them visit the MS Society pages, etc. The material is out there if they will invest the time into reading, accepting and digesting it.

I’ve used this analogy/.short story for MS:
“I think of it as someone out there has a shotgun filled with myelin buckshot and shoots our brains. Sometimes they hit our spines. Everyone else either is immune or has a protective jacket so they don’t get hit. Maybe I did something in the past that makes me susceptible. I don’t know. I didn’t mean to do it! They can’t tell me what it might have been so I don’t do it again and can’t tell others to avoid it. This buckshot destroys what it hits. Our body hurries to the rescue and tries to do what it can. It thoughtlessly lost the user manual and either does not have the materials needed or the training to fix the myelin. To make it worse everyone gets shot in a different place, and they may just take one shot a year or randomly, our body only repairs some of the hits, everyone is a special unique unicorn for our Dr to try to figure out…if they have the energy, the training and if they care. We are left with a body and symptoms to try to manage, explain and improve. We know we are all different from each other and yet somehow all the same.”

Thank you for your input and reply


steph_burnage
2 days ago

When I am suffering from fatigue or muscle spasms and can’t do stuff around the house I feel like my family think that I am just making an excuse or being lazy. They know I have MS but I don’t think they really “get it”. I’m working really hard to explain that isn’t the case and I often find myself overcompensating when I do feel ok to prove that I’m not lazy. And then I find that I’ve completely overdone it. The re-education of people around you is really hard.
Other than that I don’t have much to add just to let you know that you aren’t alone in feeling this way.


itsmewithms
1 day ago

I wish there was a shot someone could take or a suit they could put on for an hour that would mimic MS…but what symptom of MS? that would become the issue because every day it can be something different. Most days I feel like I have a 10lb bag of sand tied to my right ankle…ughhh and my husband says to just focus and lift it harder…ughhh

How can we buy those kits that simulate MS so our family can gain empathy for our struggles?


highlander
1 day ago

@karin_elizabeth_noel-magnuson
Copious amounts of alcohol followed by a marathon every day for a week.. that might give a small hint of how it works.

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