Do people make light of your disability?

Shannintipton - posted on 06/21/2011 ( 16 moms have responded )

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Do people say "Oh it can't be that bad." For example people who suffer from migraines or fibro. Do people just don't understand how bad you feel.

My hubby use to push me to go places or do things that I just wasn't up for. Then he was shocked when I was a total bitch or would be rude to people.

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Jane - posted on 06/21/2011

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I was lucky. When I had a migraine my husband took on the kids, fed them, kept them quiet, and entertained them so I could lie in the dark with a bag of frozen peas on my head.

However, my son does not "get it" at all. He gave my poor husband hell for not doing more guy stuff, but my husband was generally in so much pain he simply could not do very much at all. Now my son refuses to believe that my back hurts. Fortunately, I am too big for him to try to make me do stuff, so he just has to go off to his room and sulk.

I do know that if you have a handicap placard, folks glare at you unless you very obviously have a walker or a wheel chair.

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Shannintipton - posted on 06/23/2011

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I am sorry Gemma You NEED another doctor. He does not listen to you or seem to be helping you at all. Can you find one or is he the only one you are authorize to see?

Gemma - posted on 06/23/2011

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nice to have the extra help. tobi will be waking soon. familzy enjoying teh daylights out of the monkey and i can get some afternoon naps. still getting some nasty spasms though. and i can feel them coming gradually. getting time for an ice pack soon.
oh had bought me a batcth of clothes 150 cdn goes so much further here. for buying clothes my gosh.

Gemma - posted on 06/23/2011

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or when the MRI shows nothing adn all teh dr says is itis burnout- all in your head. burnout is just making me moesusceptible to more pain.

Gemma - posted on 06/23/2011

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hi tracy i hate these good days and bad days- one day you are struggling to breathe cause the muscles around teh heart and lungs are so spazzed up you feel like you are having a heart attack or stroke then you get meds teh next day you are better and want to function as normal as possible.

Gemma - posted on 06/23/2011

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how about mom saying teh cp doesn't change- obviously it has since I have had tobias or I wouldn't be in the state I am in. the wear and tear on my muscles is so different now. ( sorry trying to trainmy brain on a different machine.)

Shannintipton - posted on 06/23/2011

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You have done nothing to deserve this. I don't know why you were singled out for this. But it has nothing to do with you or your beliefs or anything that you have done. Please don't feel that way. It does sound like you have a good support system. Be thankful for that, but your doctors on the other hand are morons. Sorry for saying that. I have a question. You were doing fine until they took you off some medication? Then you started having seizures again? Did they find something new in your brain after the seizures? Because if that is the case maybe it was better that this happened. I don't know. I can't remember if they found another tumor. I will try and go back and look at your post to see what happen exactly. I can't remember shit. I can't stress enough how sorry I am that this is happening to you. You are a good person and don't deserve this at all. Take care and talk to you when you can. Sorry I didn't get to this until now. It is summer and the kids are letting me sleep in. awwwwwwwwww sleep. bye for now. :)

Tracey - posted on 06/23/2011

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Thank you so much every one for your support and your prayers, I value them all. Some days I might only have one or two seizures other days I can be in and out all day long. My other half actually can see them coming way in advance of me. I keep saying i'm fine but told "not for long love, lay down on your side, there is another one coming", and since we never really can tell what kind it is going to be or how severe it is going to be, it is always safer to lay down.

I keep telling myself that there are those worse off than me, but there are days when I can not help feeling... what the hell have I done that was so bad for me to deserve this.?!?!?!? Anyone else feel this way some days? ;-/

Constance - posted on 06/22/2011

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Tracey I am so sorry that you are still having so many problems with your seizures. I haven't been having seisuzes myself recently but my youngest is having them 3 times a day right now. Her headaches are getting werse and asthma attacks. I am just trying to go day by day with her and my back. I hope something gets figured out soon.

Shannintipton - posted on 06/22/2011

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Good God Tracey, no wonder we haven't seen you for a little while. You must be exhausted. Are you nervous not that you should be. Have the seizures gotten ANY better. You know we are here any time you need to vent or rant or rave. Just let 'er rip. I found with my brain injury, I didn't realize how bad I felt. My brain wasn't working right so it was like I was the last one to know. Does that make any sense? I hate the physical pain. The seizures I didn't remember anything about but sure scared the crap out of my husband. I feel for you and wish there was something I could say or do to take this away for you. You will be in my prayers for sure. Please keep us informed whenever you can. I try to check this site first thing and throughout the day as well. Good luck and can't wait to chat with you. Take Care.

Tracey - posted on 06/22/2011

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I get looked at in a judgemental way when out in my electric wheelchair because I look 'normal'. All of my problems are internal. My spine is wearing away and is crushing nerves in the prosses, causing major pain in my back and down my legs, I have right side sciatica, right side hip displasia, seizures that started in 2006/2007, large brain tumor found (by accident) while investigaging epilepsy. Tumor removed 2008 August, a lot of my memories went with it and a some of my personality and organizational skills. The tumor was thankfully binigne, was in the right frontal lobe and was the size a little larger than a golf ball. For two years after that there were not seizures until one stupid doctor wanted to take me off of my anti seizure meds... 3 months later... seizures were back... with avengence!!! So as you can see. All of my probs are insde, but i look like there is absolutely nothing wrong with me, so the pain I am constantly in and the migraines i get are not taken seriously, not even by the doctors sometimes... it makes me upset and angery sometimes. Oh and I also have bursitis and capsulitis of the left shoulder that i am waiting for surgery on, but the are now telling me that my blood pressure is in the dangerously high zone, but other than all my usual pains i do not feel any different...work that one out. lol
Sorry about the rant.My famil treat me really well. If i need to lay down then they get my pillows and a blanket for the sofa. Because of the seizures, i cannot be left alone, since they are not just purely epileptic, they other kinds of seizures in the mixing pot of my brain...;@)

T..C xx

Shannintipton - posted on 06/21/2011

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Could you imagine if they were NOT trying to be helpful how scary that would be. lol

Constance - posted on 06/21/2011

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My husband is helpful when he is here and I throw out my back or have a migraine. But normally he ends up being louder than the kids because he keeps telling them to be quiet because I have a migraine. He is an idiot.
It is easier with him not here the kids know to stay quiet and let me rest. When their friends come over they tell them my mom has a headache so shut up.
My kids were great this weekend I threw out my back on Friday and they helped me climb the steps into the house and help me get in bed and put my block under my legs. I got all my food brought to me for three days and they kept the house clean. That was awesome.

Shannintipton - posted on 06/21/2011

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See I am lucky. I have physical and mental issues. My lucky lucky husband. I do have my good days. But I also have days I can't get out of bed. But I am really one of the lucky ones. I have a little bit of both and I prefer the mental over the physical. Physical is too painful. IMO

Shannintipton - posted on 06/21/2011

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Yep, I don't use unless I am walking crocked that day. But it is nice to have for those occasions.

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