On Deaf Ears and People Who Are Helpless
Here is the thing.
I tell my loved ones the total truth about how I am feeling about my physical and or mental state when it comes to myself and my MS or any other conditions I have.
No, I do not feel good I do not feel great despite the fact I am a mum a wife a friend, yet I still get the same reaction as all the people who I am writing this comment on my MS support group community that I have joined to gain support and knowledge regarding MS!
Who says to their loved ones oh I am fine. Yes, I am great and do not worry so much about me!
What the actual hell?
What am I missing here
Is it cog fog that I have... am I missing something somewhere here??
I am not explaining correctly that I feel like shit! No, I don’t feel ok today when they ask how do you feel today? Or how is it going? No things suck at the moment!
No things are not going well.
I need help doing these things
I could use some help with the washing, or I can't do the washing full stop when the family is looking for clean cloths in a pile of clean but unfolded washing piled up in the middle of the dining room table, as they pick through for school uniforms and undies. I just can't fold it and sort it. I don’t have the strength anymore to do that.
What the hell has happened to me? It's not only frustrating, it's damn well terrifying.
My mood swings come out
So like a cat that is trapped and scared, out come the claws and the hissing. And out comes the nasty. Mood swings start and here comes this person I am not familiar with, but she's there, and she's venomous. Nasty to people she loves the most and I push them away so extremely hard. Left wondering to myself why I am laying in my bed feeling lonely, cold, and cranky! Deep down I know why! And I know who did it.
Pins and needles, lost mojo, debilitating fatigue, and numbness in places I had no idea could go numb. Not to mention free falling randomly with no reflex to stop it from happening often with no warning and dropping or randomly throwing objects out of my hand, is bullshit, but reality! I thought I was straight to the point with those who know me the best. How much clearer can an answer be when you are asked how you feel today, and you reply I want to die! I feel like shit, I am so tired, omg I am so sick of feeling like I am going to throw up, or when your children are asking if you are going to be awake today. It is the normal that you're nested in the recliner in the lounge room in front of the tv because your muscles are that cramped up that you cannot walk 3 out of 7 days are spent like this a week 3 out of 7!!
I feel guilty and like I have no control
Guilty because you feel this thing taking over and you really are powerless to take control back like you have so many times before in your life, but never have you ever had anything like this disease, your body fighting itself thinking it is a virus and killing itself! This is one of those things that happens to other people!
Mood swings, these are pure evil, mood swings are not the right word for the pure head mess I have entered, when I say that this emotion filled volcanoes are the highest of highs and the deepest of lows with no in-betweens and no warnings and anything any little thing will trigger a change of mood instantly without warning!
You have no control! No control!
It all makes me feel so lonely
This twisted range of emotions has left me totally debilitated, it has left me filled with guilt self-doubt and true loneliness. Leaving what was left of me isolated and so lonely even I do not want to be with me! Thank you, MS you son, of a B! Self-doubt and self-hate and now depression times infinity is the icing on the cake! No, it is not the pins and needles topped off with a healthy round of electric shocks down the back of what is left of your neck!
Or the pain in my wrists! I get shocks in them now too! Electric shocks!
This is where I'm at. This is how MS makes me feel
Lost most of my left side, balance is shot, do not drive anymore, muscles go into concrete statue mode for no reason it takes 3 to 4 days to release back to normality again. food makes me gag and want to vomit. I shit out what I eat straight away, and it comes out in liquid form, pure acid, I am not joking, this is painful, and it is certainly not helping me maintain any nutrients or vitamins whatsoever from any food that I try to hold down or in. My mojo has mojoed and I am miserable! I am so very lonely alone and isolated! And I tell everyone around me exactly what I am feeling! But nobody not even doctors have the answers to make things better, nobody can put things back to the way they were, nor can they tell me how to make thing normal again, it is a matter of live with it and figure out how to live alongside it or curl up in a ball and wait to die, well I am not about to do the later, so f*ck you MS!!
Simple! So, for now this is where I am at, an angry frustrated pissed off woman 46 years old mother wife, daughter, and friend.
Were you misdiagnosed with something else before receiving a MS diagnosis?