Am I Being Too Difficult?

[bellajulz]

What l use to be: Independent mommy of 3 little ones.. Worked full time as a police dispatcher/9-1-1 operator, worked 12 hr. shifts on graveyard.. On my days off I would work on a business of my own (framed poetry) along with everyday day to day life! I lived alone, was dating, my daily workout was kickboxing and playing with my kiddos

One evening (Sept. 2008) out of the blue I fainted without warning, this was the beginning to my now.... My mother became my caretaker very graciously. In December I was dx after numerous hospital stays , my cardio advised me to move immediately out of my home which had mold in the closet, I moved out within a week, by this point I could no longer work, drive , bathe on my own ( too weak) or care for my children without help or even stand without fainting. I became housebound in a new home (no mold). I was never left alone . I fainted many times and was transported by ambulance so many times due to my stop of breathing during the worst fainting bouts.

This leads me to my question... I haven't fainted in a month, I can pretty much tell when I am going to faint though I am limited as to how much I can do since I have fainted standing, sitting and while in bed. My family is very close and over protective (even when I'm healthy) but times this by 100 now... I want to start venturing on my own, I have slowly begun walking to the park around the block or my community pool 2 blks away from my house. This freaks everyone out!!!! I try to explain that if I do something it's because I'm up for it, I wouldn't put myself or my children in danger. Last night I was feeling depressed and frustrated and bored, (kids were gone at their dad's) so I went for a short walk to the pool alone to clear my head... well this enraged my family who said I was immature and trying to get attention by worrying everyone. (I?m 29 by the way not 15). Well this of course was the opposite of what I was trying to do, I want everyone to back off to leave me alone and not have a say in everything I do. Though which by the way is impossible since I am pretty much home bound aside from my short walks to the park down the street. My mom still lives with me and has continued to be my full time caretaker, (which I feel I no longer need). Please help me and tell me if you feel I am being unreasonable? I just feel that my entire life has been stripped away, and it?s so heartbreaking for me. I feel so smothered, as I have a constant babysitter, (though for my own good they do this, I know) I try telling my mom she can move out and that I can call her when I need her help, but she refuses stating that I'm not well enough. The horrible part that she's half right... My siblings have also all pitched in to help me, but I don't have anyone that understands. They believe it's unsafe for me to drive or to be alone. Which is sadly partly true still.. I was looking into a service dog as I think this would help, though most of the wait lists are at least 2 years... Any ideas would be so helpful...

[futurehope]

"What's the best way to regain my independence back?"

At this point, an important question to answer is "how do I regain my health?" You can be more independent when it becomes obvious that you are well enough to handle it.

By reading your post, I do not know enough about your day to day activities and what you need help with. But I have to admit that if my daughter were a fainter and she took a walk towards a pool by herself, I would have been upset. Do you think it was wise of you to do that, being that you admitted your walk was towards a pool?

I suggest that you have a talk with your family and discuss options so that they will feel more comfortable with you doing anything by yourself. I do not know your health situation and maybe, at this point, it is better if someone else were around.

Maybe your objection is that you are feeling like they are treating you as they would a child with no ability to do anything? Is it their attitude towards you that you are objecting to? Or, are you having difficulty realizing how needy you've become in a short amount of time?

I hope you find ways to improve your health. You are very blessed to have such a caring family. Some people wish they had that. They have to learn to adjust to your changed health as much as you do. When they see what you are capable of, they may feel more secure letting you do things on your own without assistance.

[all4family]

I understand how you are feeling. It is like you need the help, and even want the help sometimes, but you want your independance too. Your well meaning family is wanting to help you, and keep you safe, but you need that indepenance to help you feel like a person. Do you have a cell phone you could take with you when you go places, so they could call and check on you, or they could be reassured that if you need help you would be able to call? If not maybe if you could leave them a note letting them know you are ok, and have just gone for a walk, and give an approximate time you will be back. I found when I relied on myself more I managed my symptoms more. I think because I felt in control. It is a very hard thing to lose control. Especially for a young active mother. And sometimes that smothered feeling you are getting makes you forget who you are. I don't have any really great advice, but I do hope you can work this out in a way that is safe for you, and gives you the control, and life you are wanting. I hope things get better real soon. Oh and just an afterthought. Maybe you could get a doctor to explain to your family that it is ok for you to take these walks on your own. Maybe that would ease there fears. Good luck.

Suzy

[maggie]

My onset of pots came one very quickly just as yours. I was bedridden for six months and needed full time help. My one daughter came back home and she helped during the day and my husband helped at night. Slowly I regained my strength and began to be able to take care of myself. I let my daughter and husband watched on the sidelines while I exactly did what needed to be done so that they could see for themselves I could manage. I finally told my daughter I was forever grateful for her help, but it was time for her to have her life back. She found a job and moved back to her house three months later and now I have my independence back. Even though I have my own pool to this day by doctors orders I'm not allowed in it unless there is someone there to monitor. I can understand how that could upset your family. Show them your independence and then thank them. Don't look at this issue in only you insight but also from your family's perspective. I know my daughter and husband had a very difficult time leaving go, but in the end theydid. Hope you can work something out that works for all.

Maggie

[bjt22]

Can I just say how lucky you've been to have people helping you? I don't mean to guilt you...but I went through a period of time like you went through, and my husband and I had NO help. None. I was in bed for several months without so much as a visit from my own parents or inlaws. In fact, my mother would call and moan about my not being able to visit her! I had a houseful of little kids, including a newborn, so my oldest, then 11 years old, had to fill in while my husband worked. I cared for my newborn in my bed for several months. Ofcourse, I must also state that I would have never, ever have been able to have dealt with all of my extended family in my house with me for long period of time. I love them all, but it would have driven me even crazier.

All that said, I have dealt with a husband who can be "hovering". This has been going on for 14 years now, so he's much better about it...but there were a lot of times when he thought he should tell me when I should or shouldn't do something. In fact, there were instances in which he would go behind my back in this way. He meant well. He just didn't want to see me get hurt or get sicker again. We finally had a blowout over this....I tried to explain that while he meant to help, it really wasn't helping me. I was an adult and I intended to make my own decisions. Ofcourse, his feelings were hurt, and I honestly don't know if he ever totally understood where I was coming from, but he did quit doing a lot of the things that were very annoying to me.

[morgan617]

To me this sounds a bit like a control issue. Your life has spun out of control through no fault of yours, and you want to regain some of that back. The problem is, you are still having significant enough problems to require rather signifificant help.

This illness is very frustrating and we all want our old lives back, or at least when we were at our best, for those of us who've been sick forever. But this has to be a bit of a give and take. There are many on this forum who would give anything to have overprotective family members as opposed to the complete lack of support they are getting.

It sounds as though everything has to be on your terms, with no one who is caring for you having the right to have any input except yours. You even admit you want to do this or that, but you need help with it. Sorry to be so blunt, but this is not just affecting you, you have people sacrificing for you and you are taking out your anger and frustations on them, not the illness that got you here. It is not their fault you are sick either. When they show their concern, you get angry at them? After awhile that desire to help you will wan, I can assure you, if you choose to continue to get angry because they care about your safety. I have broken bones and gotten concussions from my thinking I was just fine when actually my perceptions were way off because I wasn't fine. I then have a very guilt ridden and frustrated husband and son because they feel they allowed it to happen. When I was just wanting to control things.

I know this sounds harsh, but you asked and that's my opinion. I very much understand the desire to have a little control over our lives, I have been sick a very long time now, but I also know, when you have people that are willing to do anything to help you, you shouldn't be kicking that gift horse. With all the involvement your family has agreed to, you are hopefully also letting them know how much you appreciate all they do, as opposed to just the resentment I hear in your post about all that they do.

I would recommend you sit down with all involved in your care and have a talk and set up a plan of action, for how you can regain some independence without scaring the bejeebers out of them and getting frustrated and angry with them or they with you. Maybe they aren't feeling appreciated for what they are doing to help you. This illness affects everyone involved, not just you. Your mom loves you and wants to protect you, that's how moms are, as you know.

You can set up a means of walking, or being more independent, but with a way of contacting them if you need them. Right now it seems to be, I will do what I want, when I want, and you guys will just jump when I say jump. maybe when you are feeling up to a walk, someone can go with you, at least for the walking part, then leave you with a cell phone and come get you when you are ready to go home. Then you can start taking short walks on your own and work up to more stuff. There has to be some sort of compromise that will be acceptable to everyone.

Rather than getting upset with them for being worried or them getting impatient at what they perceive as your lack of consideration, by taking off on your own, you can work out a non confrontational way of becoming better and them seeing you are improving. It sounds as though a family counselor might be in order, someone who is objective and can help all of you come up with a workable plan, where no feels quite so frustrated or angry. Family can just be too close to communicate and an outside source can help everyone put things in perspective.

This is not meant to be hurtful to you, but as a person who lost all her control quite awhile ago and has had occasion to see that how lucky she has been compared to many others, it is said with the knowledge of "having been there" and reaching a point of realization that I was actually driving the people who really cared away with my anger and frustrations, not realizing they had their own set of frustrations. They have lost many things too in this. This has to be a give and take and shared control of things and if that requires outside help, then so be it. Good luck with this, it just gets very complex and and can become very difficult if they give up and then you need them. it has to be on terms that work for everyone, not just you.

I wish you luck with this and hope that you can work this out with your family in a way that is good for all. morgan

[bellajulz]

Thank you for all your replies as I do agree and with most of the advice given. I will try to be more patient and would like to add that I have been very appreciative with my family including giving monetary repayment in return for the help since I haven't been able to do more. I never ever leave my home w/o a cell and always tell someone where I am and give updates as to how I am doing every 10 to 15mins by text msg. I have never gone swimming alone, was just hanging out at the resort style pool that I live by. I never leave the home when I have the slightest of symptoms and have come to learn and understand my body. I share this so that it can be seen that I am not just throwing a fit, but am truly having some difficult issues that I am struggling with. Though your opinions are very helpful and I will continue to try to be more patient and understanding.

[ramakentesh]

My onset was fairly similar to yours although I had some very sublte symptoms before hand that were a little 'odd'.

its frustrating but if my own experience is anything to go by hopefully your sudden onset might suggest a significant recovery in the not to distance future.

I tend to wax and wane - long periods of 10-20% symptoms, some days hardly any, then maybe once every three to four years i get a bad period (always after flying coincidentally).