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Frustrated


Ernie
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I usually don't talk about my family issues but this time I will make an exception. I invited my sister and her 2 grandsons for a week at my place. I went to pick them up at their home wich is 5 hours round trip from my house. The arrangement was that my sister would help me prepare meals because I can't even prepare it for my husband and I. She had agreed.

She never helped me throughout the week. It took me 3 hours to prepare meals and we ate at about 7:00 p.m. every night. I have a walker to sit down when I wash the dishes and she was sitting on it playing with the puzzle while I was standing in the kitchen. At one point I asked her if I could get my walker and she gave it to me.

But what really did it is when the kids asked to go to the park (they are both 11 years old). I played with them a bit but I was very careful not to trigger anything. The temperature was about 70F and I had eaten properly and had taken all my meds. So, after about 90 minutes of being in the playing ground a got up to get back to the car and fainted right there. My nephews thought I was joking. My sister was there but she did not help since the kids were saying that I was joking. So one of my nephew was trying to lift me up while I was barely conscious. After about 5 minutes I was able to talk and I told my nephew to go to my car and get the wheelchair. Then my sister realised that I was not joking. The only person who helped me was my 11 years old nephew. My sister did not even take charge of the situation. I felt stuck with 3 kids. Luckily I was only 4 blocks away from home.

I would be less disappointed with my sister if she was a "normal" person but she has NCS and POTS also and she is a fainter. I don't understand how an adult can see her own sister whom she knows faints all the time and believe that I am joking. I had sand everywhere, in my clothes, hair and ears. I told my nephew later on that night that it is rare that adults pretend to faint. But my own sister - is she stupid or what! She could have least come and asked me if I was fealing OK.

Otherwise I am happy of my week. The kids reminded me of when I was 10 years old. I will invite them again next year but I will not invite my sister. I need an adult who will be able to take charge of the situation when a crisis happens.

Ernie

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Ernie,

I'm very sorry for you these things happened. It must be very difficult for you when your own sister behaves like this. I have a sister myself and I'm very lucky cause she's always very sweet to me. But spending your time with the kids is great. I have a 13 and a almost 10 years old and I love seeing them play football or play tennis. Right now I'm learning them to cook and they even like it :angry: .

It's great you can drive your car and maybe when you invite the kids again you can use a mobile phone so you could warn someone in case of emergency.

Good luck and don't be to angry with your sister, it's a waste of energy. Talk to her about this or just don't invite her anymore.

Best wishes, Corina

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Ernie, I feel your frustration. I know exactly what you are going through. The other night some people decided to "drop by". I told them I was too tired to visit but they decided to stay anyway. I fell asleep while sitting on the couch. My husband told them they should LISTEN when I say I'm tired.

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It always amazes me how little people try to understand our conditions...but I was surprised when you said your sister has NCS/POTS too! You would think she'd be more understanding...but you have the right to speak up so you don't have to suffer, especially when other people are visiting you...you could just tell her how it made you feel that she was so insensitive, and hope that next time she will be more compassionate.

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Gayla, People do not understand what we mean when we say we are tired. We do not have another word in this language to describe what we mean when we say we're tired. Basically, we mean "we are unable to function". It happened to me when I had company. I had to lay down right there in front of them because my husband refused to allow me to go upstairs since it was the beginning of the visit. Luckily, I recovered enough to make it through the rest of the evening, but the episode doesn't exactly make me excited about wanting to entertain. :)

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It sounds like your sister may be in denial about your condition as well as her own. It isn't really a normal response that she had to your fainting episode--who except a child might first assume someone is joking when they keel over? I'm sorry for your very difficult week, but it sounds like perhaps it has shed new light for you on the state your sister is in?!

I think the state of denial of the seriousness of our conditions is common among our family members in general. It is so easy too when we look so normal,and have good days. And I agree with futurehope--being tired is different from being unable to function. Most people have never experienced the latter, so truly cannot understand.

Anyway, I hope you feel like talking to your sister and letting her know how you felt in as gentle a way as you are able.

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Thank you everyone for your support. It means so much to me.

I called my niece, my sister's daughter. My niece is a nurse. She was not surprised at all that her mother did nothing because never help others.

So I have decided not to invite her again because she is a burden. I learned a lot from myself last week.

Futurehope: Your right, it is not just that we are tired but that our body cannot function. I think that this is what I will say from now on.

I talked with my nieces and they agree to send the kids alone next year. So the kids will come when my husband is on vacation and this way we will be able to visit around the city.

Ernie

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