Depending On Others

[carinara]

Hello everybody! i would be very interested to find out to what degree you depend on other people due to POTS.

I used to be a indepented person before i got sick about 10 years ago. Now i wouldnt get far if I didn't have a lot of help of my family! I hold a job as a secretary and i have a 11 year old daughter and if i didnt have all the support around me, like my mother picking me up from work, driving my daughter to her appointments, driving me wherever i have to go) i wouldnt manage!

When i have a real bad POTS episode with all the symptoms you can think of to the point were just getting up to go to the loo is almost impossible, it comforts me a lot if somebody is around! When i get that bad (this happened last summer again) iam totally helpless on my own, and that scares me!

Now, my body got a bit in balance again! I still can't stand without getting symptomatic, but i know much more about all my trickers like food, talking, heat, and so on now. With this knowledge in my head i make sure, that if i go somewhere with my family that i never overdue it in any shape or form.

Like a few weeks ago, we all went to a concert. I got out of the car right in front of the building and sat down waiting for the others finding a parking space. During the concert i sat down all the time and i had my little fan going! After the concert we went straight home. I really enjoyed the night out. But to be honest, i would have NEVER done it on my own. As long as i know that there is somebody with me who can drive me home when i get real bad, i will try to go to most places! (Like iam invited to a wedding tomorrow, hope I manage) Its a great relief for me to know, that i can at any point just lay down and just concentrate on getting better without wondering if i get myself home, walking to the car and driving and so on!

For the first 8 years of POTS i tried my best to stay independend, people kept telling me, that I should try harder to do everything on my own. I tried and i felt so bad with it, i overdid it on a daily bases! I felt symptomatic all the time. Now, since i know more about POTS and found this wonderfull website i know that if healthy people would experience

them sort of symptoms, they would just stay in bed all day long and call in sick.

At the company i work for, iam the person to call whenever somebody is sick and doesnt come into work. These people who have told me before that i should try harder to do things, are exactly the people who stay at home when they have a cold or a muscle ache. Sometimes people stay away for weeks because they twisted their leg.

When they call me they expect me to feel sorry for them and i tell them to look after themselves and get healthy before they come into work again. (whilest i close my eyes talking to them on the phone concentrating because i get very lightheaded at times) .

I try to convince myself that it's ok to depend on other people at times and that in order to keep the symptoms somewhere under control,it's also ok not beeing able to be as independent as i use to be! But at times i feel frustrated and do things to show myseld that i can manage all alone, but most of the time i feel real bad afterwars! How do you feel about that?

Thanks a lot

Carinara

[Rachel]

Hi Carinara,

It sounds like you are being wise. You are cautious with what you do, but not letting dysautonomia get the best of you. It takes time to learn just how far we can/should push our limitations. It is good that you are learning what triggers a flare in your symptoms. It is hard to learn to depend on others, but we sure do need the help of our family and friends!

I've had to depend on others to one degree or another because of dysautonomia for about 14 years now. Sometimes it has just been needing a friend or family member to drive me to the doctor or to the store. Other times I needed help with house cleaning, laundry, and meal preparation on occasion. Now I need a lot of help every day.

It is hard each time my health gets worse and I have to depend on others a little more. It was hard to have to ask friends to drive me to the doctor or to the store. It was hard to let people come into my house and wash my dishes or clean my bathroom. It was hard when I had to learn to let my husband bathe me because I couldn't do it on my own. It was hard to move in with my parents because I need so much daily help. Yet, while it is hard to let people do these things for me, it is such a blessing to have family and friends around who care, who love me, and want to help. Sometimes I'm still stubborn and try to do things I really shouldn't do, and I pay for it later! (But sometimes it is worth it! )

I hope you have fun at the wedding! I was just at a wedding last week. It was exhausting, but so much fun. During the recption I had to lie down because I just couldn't sit up anymore. It was a close family member's wedding, though, so I didn't want to leave. My family was sitting at a large round table with a table cloth that hung to the floor. I just crawled under the table and laid down!!!! The noises were then muffled and it was nice and dark. I'll do whatever it takes to keep from missing out on important events!

That must be so frustrating to be the person who gets called into work when others are sick. They probably have no idea what they are asking of you.

It is okay to depend on others. We need our family and friends. Of course, we also need to work hard and do what we can do, but it takes courage and wisdom to know when we can't/shouldn't continue and need to ask for some help.

Rachel

[Ernie]

Hi,

I hate to depend on others and my ego really hurts when I need help. I had to humble myself to get help. The more my health improve the less I can depend on others and the more I also feel about myself. For the years I really needed tremendous help I was greateful for all the help I got.

[Megan]

I am incredibly stubborn, and, at the age of 20, halfway through college, my peers are starting to make that break from their parents and gain real independence. So it's hard for me, because I really can't do that. Partially because I need to stay on their insurance as long as I can because of meds! Sometimes I feel like I just really need my mommy, and other times I make myself sick from trying to hard to do things on my own. I can get by when I have good days, but it's very difficult for me to feel like I'm mooching off of my parents when I really want to be able to do things on my own. It helps that my best friend and roommate for next year is very helpful...a combination of making me soup when I can't get out of bed to eat and taking away the cord to my computer if I'm procrastinating on homework. My boyfriend is helpful, too, and while we aren't engaged yet, we're planning our future together, and he talks about shifting responsibility to him from my parents. That's difficult for me, too, to think about always needing someone "on call." So, basically, I struggle with it a lot, but I find it helps when people know me well enough to tell (as much as someone who is not me can tell) when I am capable and when I really can't do anything. That way they treat me like a normal person when I don't need to be babied. I try to just think that people love me and that's why they help me, not because they feel obligated to do so. It helps a little bit.

Meg

[Dawg Tired]

I, too am stubborn, but also I try to be realistic. Recently the 19-year-old son of a friend of mine has moved in with Hubby and me. He takes care of everything outside and it has been a tremendous help to us.

He also keeps a close eye on things and makes sure all the "heavy" things inside are done plus if I'm not up to cooking he does that. He has been a real blessing to us!

[momofsara]

I know its so hard to ask for help, I see this so often with my daughter. She has had to learn to swallow her pride and say "Please help me" and she has learned who her real friends are. They are the ones who will do something for her more than once. Some say they will help but end up being too busy to bother. I recently took her to her best friends wedding and she did fairly well for a while but we had to leave right after the reception started. She was upset about not holding out until the very end, but she was happy she even felt like going. Shes missed so many things because she simply wasnt able to get ready to go. Bathing and getting dressed are very fatiguing for her.She always has to have help either from her hubby or from me. We always carry her pillow and a throw to the doc's office in case she feels cold or needs to put her head on my shoulder or in my lap.Also some doc's have no pillow in the exam room and she must have support for her neck as a result of pain from having surgery for chiari malformation. I'm glad to know that so many have a good support system because it is so important. This forum has already been a blessing for me and I feel very lucky to have found it. Susan

[morgan617]

I used to be incredeibly independent and stubborn, but those days are long gone. it's not worth the pain and suffering. I am fortunate to have a supportive family, I have no idea what i would do otherwise. I just let go of most of my pride a long time ago.....morgan