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Old 07-12-2011, 02:42 AM   #1
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Venting

Hi

Last night was basically the first time I had a breakdown in front of family.

My boys go to their dad every now and then and Iím left alone at home.

This has never been a problem because Iíve taught myself how to get up unassisted by pulling on furniture etc.

Yesterday was the first time I struggled to get up this way. I tried about 30 times to get up my way and after 2 hours I decided to phone my dad to come and help me.

I hate asking for family to come out to help as Iím to stubborn to except help or acknowledge that I need help

My dad arrived and I thought that maybe I can help myself if I get my manual wheelchair and help myself from the couch to the bathroom where there is other railings to get up from.

I asked my dad just to stand by in case I donít manage and after about 10 min I could manage by myself.

I told my dad that he can leave and that I will be ok. My parents never talk about their feelings about the fact that I have MD neither to I share my thoughts about having this.

All of a sudden my dad said that itís his fault for me being like this and that he gave it to me. I immediately changed the subject as I was not prepared to get into this discussion at that moment. He left

I went back to the lounge with the confidence that I can get up and no problem to take care of myself.

After about an hour I decided to go and make food and pulled the wheelchair towards me. I used exactly the same technique when my dad was here. I couldnít get up!! I tried a few times and every time the chair just moved away from me.

I just broke down. I cursed and blamed God for not helping me to get into the chair! I just cried and cried and cried. I didnít want to phone my family to come and help yet again.

An hour later I had no choice but to phone again. I hated the fact that I need help with something Iíve done 100 x over to get up.

My sister and brother in law came over to help me. Now in the past there is always laughing as this is my way of coping with the MD. As soon as they walked in the smiles and humour immediately started but this time I just couldnít to this

I cried so much that I couldnít talk. This is not me. I donít show my vulnerability to anyone. Not my family, not my friends, not my kidís no-one. I just couldnít stop crying.

My brother-in-law said the words I didnít want to hear. He said that I knew the time would come that I will need help and this damn wheelchair. How can my situation change in a day?? Itís not fair!

I just asked them to be silent and I donít want to talk about anything. Just sit there and be quiet and when Iím ok help me up that I can go to bed.

This was the first time my sister and her husband saw me in this state. All they wanted to do is make me smile. I didnít want to.

I cannot talk to them about this. Comfort words do not help. I will get over this in an hour or so and Iíll be fine and that is exactly what happened.

They left and I went to bed without supper. I couldnít sleep. 2 Oíclock this morning I just gave up and watched TV. I think I fell asleep at 4:30. All I could think about was the next step Iím going to have to take. I donít want to go there. Iím not ready!

I can write a book about last night. I donít want sympathy. I donít want comfort words. I just need an outlet and this site is where I can do this.

You know what Iím talking about. You know what Iím going through. I donít want anyone to feel sorry for me. I just need to vent.

Tomorrow I will be fine again and life goes onÖÖ

 
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Old 07-12-2011, 09:04 AM   #2
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Re: Venting

Mandy,

I have a "Breakdown day" 2 or 3 times a year. I know EXACTLY what you felt like and what you experienced. These emotional breakdowns always follow an episode of "not being able to do something anymore", just like you described. It is followed by hours or even days of deep depression, frustration, hopelessness and anger.

Somehow, thankfully it always passes. I usually figure out a compensation or a new technique. And then I feel pretty good for a while. Then down the road the compensation no longer works and I have another bad emotional episode.

Do you have a lift recliner? They are worth every penny. Hopefully they are available in South Africa. I purchased one when I could no longer get up from our sofa about 3 years ago. I also have an UpEasy portable seat cushion to take places with me. You should take a look at both of these items.

Lately however I've been struggling a bit to get up even from my lift recliner and my toilet riser. This has me worried but I'm trying to think ahead for a solution before that awful day comes when I can't.

Sorry I can't offer more to solve your problem. All I can offer is a little advice and an empathetic ear to vent to. Hang in there!

Mark

 
Old 07-12-2011, 04:00 PM   #3
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Re: Venting

this message board I am SO glad to have found it.
To be able to write to people who actually know exactly how you feel......its a relief.
Thank you
Hxx

 
Old 07-13-2011, 01:05 AM   #4
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Re: Venting

Thanx guys

I feel so much better this morning - I had a whole day of venting to myself and questioning things over and over and over again

Yesterday was another day that my mom opened up a bit to me. She doesn’t tell me how she feels. She mentioned that she couldn't sleep checking her cell to see if a called to be helped

I don't want her to feel that I'm helpless and I need to think of a way to make her feel at ease.

In the past when I was first diagnosed I cut of my family completely and this way them not knowing what I’m going through made them not worry

Only when I got divorced did I let them in slowly as I moved into the same suburb as them. Now guild is starting to creep in and I’m scared that I’m going to cut them off yet again.

This is my way of coping with MD not let other know how I feel.

Am I being selfish?

 
Old 07-13-2011, 01:16 AM   #5
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Re: Venting

Hi Mark

I goggled a lift recliner and maybe I'm looking at the wrong thing. It is a normal recliner that lifts forward - its shows on the site being called a lift chair?

My hips and arms are too weak to lift myself so this kind of chair would not be any use to me

The same goes for the UpEasy portable seat cushion - it is similar to the chair

Am I looking at the right thing?

 
Old 07-13-2011, 12:01 PM   #6
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Re: Venting

Mandy,

Mark is right on as usual I also have a lift chair. It does look just like a recliner and does lift forward. But just to let you know mine almost stands me up straight. I don't have to use my arms. We bought it at a store in town that specializes in disability equip so I got to try it out before we bought it. However I did get stuck in it one night when the electricity went out. Even with the battery back up it didn't lift it as far as I needed. But all was good in the end.

I also tried the easyup seat and it doesn't work for me but it was worth a try.

Keep shopping I'm sure there's a chair out there that will fit your needs.

Later Dreaman

 
Old 07-13-2011, 02:10 PM   #7
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Re: Venting

Hi Mandy,

I believe you have looked at the items I described. If you can find a store or dealer in S.A. that sells home living aids they are usually VERY helpful to allow you to try these things out, just like Dreaman did. I truly hope you can find a solution that will allow you to sit comfortable yet get up on your own.

My lift recliner lifts me about 75-80% of the way up. I have absolutely NO quadriceps to get me up further so I do have to use my arms to push the rest of the way. This is getting harder because my arms are going and the back muscles that straighten me up as well. So I developed a new technique that probably looks ridiculous! I must lock my knees, lean forward and put my palms on the coffee table in front of me. Then I carefully rotate 180 degrees and use the lift chair to stand the rest of the way up by "crawling" up it with my arms. But at least it works. I couldn't possibly get out of my lift chair without the table in front of me.

Something will work for you, I know it will. You have a great attitude which is the most important thing.

 
Old 07-13-2011, 03:56 PM   #8
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Re: Venting

Mandy37,

I know that I often feel better when I vent, just writing things down often gives one a sense of relief.

Perhaps now that your father has opened a little about your having MD you two might be able to talk about both of your concerns and help each-other out with how you feel about this.

Hopefully you are having a better day and you are able to get up with not so much of a struggle.

Terry

 
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