making life changes due to POTS

[Guest tearose]

I have been trying to hold on to some level of a quality life and two years ago I began to think of what I could do to help reserve my energy for the "important" things. I try to figure how much energy I have on a daily basis by assigning "energy points" after getting up in the morning. I actually think of all that I'd like to do that day, and then figure out what is realistic based on how I feel physically. It has helped me cope with the ever fluctuating level of energy and mental clarity dysautonomia has given me. It also helped me salvage my self esteem because I felt I was unreliable, unable to make a promise and keep it. Social plans wait till last minute and naturally I can't hold a job. At least having a sense of how many energy points I have on any given day I can choose how to "spend" them. Well, since my symptoms are so much worse when cimbing stairs and we llive in a home with three staircases(up stairs to bedrooms, two sets down to do laundry)...we decided to look for a home without stairs. We finally found one! I just thought I should share that sometimes we make major changes in our lives because of dysautonomia...even moving to a different space.

Did you ever think about the accommodations you have made? What are they?

Best regards, tearose

[purplefocus]

Tearose,

I understand about the "energy points". Moving was a wonderful idea. I know I can't go up any stairs, I couldn't imagine living with them in my house. We all have to make changes in our life and for us the dysautonomia presses the issue for us. Let me tell you something my sister told me a few days ago. She told me to think of this as away to slow you down, she told me that I never would have done so on my own and by getting this I have had the chance to stay home with my 2 year old where otherwise he would be in daycare and I would have been missing out on all the little things he does. She has a point, I guess if we can see the good in all the bad it will help. Still though, hmmmp, I want to be normal. Oh and Tearose, how did you find the energy to move or did you just supervise?

[Sue]

Wow our families must all be from the same planet!! Too bad that don't realize I don't want to slow down, I happened to have enjoyed my life the way it was...

Moving into a new home is a wonderful idea, please don't overwhelm yourself in the move though.

[Guest tearose]

I'm packing now for a July move. I do only what I can of the non-fragile stuff. I will have the movers pack the dishes and glass...it is more than I want to spend of money but at least I will save my energy! Purple, I believe that your sister is right! The quality of life with your 2 year old is more important than an "outside job" as long as you can manage. Some people are not able to downsize and simplify and afford it. I made the same choice you did and my two sons are better for having more of me in their life. Sue, I do have to be careful not to overdo the packing so I'm only spending my energy points on packing. The laundry is piling up for the weekend and we are eating less home cooked food. I won't be doing any gardening this summer either. (I'll have to watch the mightymouse garden grow!) Thanks for the encouragement Sue and Purple. I'll be careful. tearose

[goldicedance]

Tearose,

I am so glad that you can move to a 1-story home. Fortunately, laundry is on the first floor. I only go to the second floor for beddy bye time. I very rarely go downstairs. I think you made a wonderful decision as the change should certainly be beneficial.

Don't overdue the packing and unpacking.

Goldicedance

[geneva]

Tearose, I have been wondering how you have been doing since I hadn't seen too much from you lately. I am so glad that you and your family are making this move! We live in a house that has a converted attic that I set up as a playroom for my step-daughter when she comes in the summer or holidays. That is the only time I venture upstairs and she knows that I can only do it once so if we forget things she has to do the running back and forth!! My point being, I don't know how you have managed needing to go up the stairs every day. After you recover the move, I think you may notice a big improvement from that alone...hope so.

Your idea of energy points is the same I use except that I have always thought of them as activity points since a home care nurse explained that to me at onset. My family and close friends understand the concept and it allows for a short-cut way to explain how I feel when I say "out of activity points"! I find that I assign points to conversations also. Some friends/family take up 50 and some use up 500 points....I try to avoid the latter as much as possible! With activity or energy points planned for the day I find some sense of accomplishment that is really important to me. This past weekend when I was really in the negative points category, I told my husband he was in charge of his laundry and meals. It helps to communicate without having to bore anyone with the details of what is wrong TODAY (since it is always something)

And as for social plans, what are THOSE!!! Like you, I don't/won't commit to advance planning because if I am the reason we have to cancel at the last minute I feel terrible. I have been amazed at how well my husband in particular accepts this. We will say, let's think about doing "whatever" this weekend but we'll see how you will feel that morning. I feel better this way. I am sure he is disappointed sometimes but if so he is kind and never lets me see it. I have always been such a control freak and planned everything but post-POTS, the spontaneous approach is all that works. I have learned to enjoy it and if I wake up one Saturday morning and say, hey, let's go take that day trip you have been wanting to do, it is like giving a gift...ME, feeling good for a day!! Once he gets over the surprise, he is thrilled.

We are having friends come Sunday and Monday so I'm trying to store up energy points. Thats the other thing I do. I try to rest several days in advance of things I can't cancel (weddings, holidays etc). I have read that this is not always the best approach but for me it is the only one that works as well as sticking to my rest schedule in the afternoon even when others are here.

Tearose, keep to your plan and don't overdo your move! And remember to call in all available resources to help...this is not the time to want to do it all yourself.

Geneva

[Roy]

I had to move not too long ago. I had an apt. on the second floor and loved the views, but living on the second floor was getting be too much. All those trips up and down with arms full of groceries or laundry just got to be too much for me. I am now in a one story house with the laundry room straight across from my room.

If you have to move just remember to pack those boxes lightly. Mine where so heavy it took me 3 hours to move 7 boxes and some electronics. I had to take several breaks inbetween loads to catch my breath and let my heart drop back down from mid 180's.

[lalalisa]

Tearose,

I am glad you are getting ready to move, I also just moved! I was on the third story of an apartment and my husband and I just bought our first home - and guess what? It has no stairs!!

We had lots of help from our family and now I'm slowly unpacking a little each day. It's kinda discouraging some days because I feel like I'm extremely slow!! It is so great to have everything on one floor now.

Also, I also have an energy points system. The system has really helped me and my husband (I call them Nitro's - not sure why). It's beneficial to gauge where I'm at during the day so that I don't overdo it.

Interesting how much we all have in common as we re-adjust our lives.

Hang in there as you pack!

Lisa

[Aprilmarie52]

I have a 2 story house and it is difficult to walk up and down the stairs sometimes, but my dr told me that walking up and down stairs is a good way to force the blood from your legs. I hope that not having stairs helps to make your life easier.

[Merrill]

Tearose, I think moving to a one-story home is a great idea! (I think about it myself every now and then...) Any help you get from the movers will be well worth the cost...I've done "full-pack" moves the last couple times I've moved, and while it saves me from going through my stuff and throwing things out (both a good thing and a bad thing), it allows me to stay calm through the process and save my energy for putting things away where I want them in a new place. I hope you'll find other advantages to your new home as well... maybe there's a pretty little tree out one window, or space for a bookshelf you didn't have before, or an extra drawer in the kitchen. It's the little things, you know? Good luck!

Merrill

[calypso]

Glad you found a home that better suits your needs, BUT doesn't it frustrate the heck out of you to have to be thinking of living in a one-story home when you're young, and these are supposed to be the best times of our life? AAAAHH! I know, wasting energy on getting mad isn't going to help you ... but it sure makes me want to smack people who complain about how their grass grows too fast, or their kid got a B instead of an A, etc., etc.

Anyway, enough rambling ... it's good that you'll be living how you want to live! Hopefully the POTS will go away for you and you can go back to not having to adapt your life so much.

Amy

[Michelle Sawicki]

Hi Tearose!

I'm glad you found a house that works better for you. I have made a few accomodations that helped me throughout the years. Having my son vaccum really helps, because vacuuming really makes the back of my head ache right above the neck (I never had that before POTS). Having my son or husband take the groceries out of the cart to put them on the conveyor belt helps as well, as this too makes the back of my head ache and also aggravates my POTS symptoms. I think the thing that would help the most would be to have someone else do the cleaning, as all that bending up and down can really make me dizzy and make my heart go crazy. I can't afford to have someone else clean right now, but if I ever hit the lottery...

Years ago, when I was sicker, I found setting specific times to things really helped. Having company come over from say 4-6pm, instead of just coming over and staying late into the evening, really helped. Calling people a few minutes before you have to do something else can be a great way to limit the time you are kept on the phone. That way you can inform them that you have to ____ in a few minutes and can't talk long. A lot of the things mentioned on the "what helps" page of the DINET site really helped too, such as scheduling activities in the afternoon/evening instead of the morning.

I hope your new adjustments will help you feel better!

Michelle

[Dawg Tired]

We moved from Montana back to Missouri so we would be closer to family and our church family. We both loved it in Montana but when I got sick it bacame obvious we needed to be closer to people who could help us more. Hubby went back to preaching at a church where he had preached when we had lived here before.

I certainly had a lot of days when all I could do was lie in bed, not even being able to see the ceiling and praying, "Lord, if I have enough energy to make this move I will devote whatever energy I have to helping others." So far, we have been needed here and people are very understanding of my limitations.

[ethansmom]

Wow- I think I've made every accomodation you can imagine since I got sick The most productive thing I've been able to do (as mentioned in previous posts) is to stay at home with my 17 month old. Not being able to work full time has been financially difficult, perplexing for David to understand, aggravating for me to come to terms with, but worth EVERY DAY that I get to spend with Ethan. I feel that he has gotten full benefit of being raised at home and he is such a great little guy.

Some other smaller accomodations I've made are assigning taks that are too hard to David- such as grocery shopping. I "trade" him for tasks that are easier for me, like taking out the trash or picking up the dry cleaning, which doesn't require standing for a prolonged time period but gets me out of the house. It helps him feel better about my illness, and makes both of us feel like we contribute to the household.

We are thinking about moving too! In fact we are discussing putting our house up for sale in mid-June and leaving WV by August to move closer to my parents in Florida. I am nervous about going down to FL (finding a doctor is the biggest concern, and I havent' been able to track down any POTS buddies down there!) but I will be excited to be near my mom and dad. And the added bonus: one story houses!! The plans are not final, but we are about 75% sure that we want to go.

Tearose- good luck with your move, and don't overdo- especially in that July heat!!