My Illness Started Last Summer June 28th To Be Exact

[mae]

Hi,

I live in Northwest Indiana and the temp today is 82, I feel the best on a cloudy 65 day. I have 2 small girls and I feel bad that they are not out in this warm weather playing and just being a kid like I was able to do. You know daily function is even hard in the house let alone outside in the sun and heat and STIMULATION. How do you all continue having a life , I've had the POTS symptoms for many years but it never prevented me from living until last year. I had a baby in March thinking I was anemic or some sort of hormonal problem and became more and more fatigue, and decided to have a yard-sale after being in the sun and heat I went in the house started having heart palps shortness of breath, felt like my body was to heavy to move and was very very pale. I had my husband call 911 and I went and layed in the ER for 9 hours they had no idea what was wrong I could barely talk I was so weak they ran test after test and I kept telling them I'm so thirsty they wouldn't give me anything to drink and finally released me. I went from doctor to doctor since that day almost weekly and finally the endocrine doctor said all my tests that he looked over are normal and this sounds like dysautonomia hes the one that checked my heart rate and B/P while standing and now I finally go to a ET cardio next Friday. Sorry I got off topic alittle this is all just unbelievable to me. What are my options really am I trapped in the house all summer??? do I have to watch out the window while my family does activities outside??? should I move to a cooler cloudy climate???? is this ever gonna get better or worse???? I choose to go more during the evening but that is when my kids go to bed ....its a struggle a big struggle. My husband just asked a few days ago would I go to a food show indoors with lots of vendors I said well how long will we have to walk, he said it would be a few hours to get to all the booths I said is there scooters ? He just looked at me and said no I said well you know by time I get the kids ready take them an hour away to the sitters then come back and walk just to get to the building I will be totally exhausted and after all that I have to drive an hour to get the kids and an hour back again (4hours of in the car) in the sun Tears filled my eyes I said I'm sorry I can't do it. I wanted to so bad I just wanted to force my body to do what I wanted it to do and feel like a normal person again and for a few minutes I tried to strategize and reality kicked in as soon as I stood up and felt all the symptoms as a whole, it depresses me at least once a day to know I have no choice no rights to this condition. I feel the effects on my whole family and it is really hard. I wonder if I'll ever be one of those people I see living a normal life I know if theres a possibility of me ever getting better I'll always be a changed woman it will never be the same, but will I be rid of this physical disability I pray everyday to have a chance to enjoy limitless days restriction free life as I pray for all of you also.

Mae

[runningshoe]

I know you are really scared right now but try to slow down and not jump too far ahead. You still have a lot to learn about your body - it takes time to figure out what makes us better and what makes us worse (we are all so unique). The most important thing for me is to listen to my body and go at my own pace. Maybe you won't be able to spend all day at the park with your kids but maybe a certain part of the day will be your high point and you can schedule outings around that. That is just one example. Two and a half years ago I was hit by pots and sort of fell of the earth for a while. It takes time to get the meds right and get your lifestyle readjusted. I have 3 kids, work part time and lead a pretty active life. I have yet to return to my previous level of activity but I get to what is important. Breathe, don't panic, get good drs, read up in the illness, write on this forum, give yourself some time....

lina

[mae]

Thanks Lina, do you see a difference in yourself from then and now if you don't mind me asking how sick were you and how did you cope? I'm interested in peoples journey dealing with this and maybe it will help in some sort of way and also being a mother how did you do it?

Thanks again Mae

[runningshoe]

I was definately sicker then because my dr had me stop exercising until we knew what was wrong with me and I got deconditioned. There was also the added element of worry and anxiety because I didn't understand my body and what was happening. I had to learn to rethink everything I did. That added stress. With pots everything is just more extreme because your body is under stress. I can work a 6 hour day now but then not do much more later. Not much more still includes making dinner, helping with homework and maybe some light chores. Not too shabby you might say! I can only exercise for about 30-45 mintues now. More than that and I don't bounce back. If I do too much one day I will be tired the next day. I do not work everyday. Use the spoon theory (google it) or a points theory to help explain to others how you have to plan your activity based on your energy level. Are you on meds? Are you salt loading? The best investment I have made is seeing a therapist to help me learn to live with Pots (I also have intersitial cystitis which really *****). Pots can make you feel sort of nuts because your body does all kinds of wierd things and you spend a lot of time analyzing everything. Slow down, drink lots of water, rest, play with your kids, eat healthy, get good medical advice, cry when you need to...things will get better.

lina

[mae]

Hi again,

I am not on any meds yet , but that does kinda worry me because I'm super sensitive to all meds and I have tried to avoid them most of my life I guess I get tremors soon after I take meds and another concern is I have the high heart rate along with the low B/P when standing so I imagine treatment will be kinda tricky...I have been drinking lots of fluid and I already love salty foods. I have major pooling all over my body, have you used the compression hoses and how have they worked? I was just waiting till I see this specialist before I ran out to get them cause insurance will cover it with prescription. Its good to hear you doing pretty well, looking forward to getting to that recovery point. I sit to do household things (dishes,cooking) it seems to help conserve energy my children are 2 and 1 so I need plenty of energy. I think I'm dealing with CFS and fibromyagia on top of POTS who knows , hopefully me soon LOL

Mae

[ramakentesh]

when it comes on like that its very scary because when youve never been through it before you think it will never end. For me i crash on occasion but then usually go back to a place where symptoms are maybe 20-40% or so - and its quite managable at that level. trust me, if your POTS is anything like mine then chances are it will improve - and Ive never found a successful med due to sensativities, but it still improves - baby steps to start with.

Hopefully the bad days wont be all the days soon!

[janiedelite]

Hi Mae, I'm sorry you're having to go through this. I also seem to get sick whenever I'm in the sun. My favorite time of day is dusk, and that's when my hubby and I take walks and do things outside. As you acclimate to your symptoms, you will figure out what your limits are. I wear very dark sunglasses outside as any glare makes me dizzy and ill. I've heard other talk about cooling vests and I think I'll invest in one in a month or so; I've heard it helps others be outside on warm days for a couple hours even! Also, compression hose (at least thigh high) are a must. When I got back from Mayo and started implementing the 3+liters a day, 4+grams sodium, and compression, I didn't feel better overnight but I kept at it. Now I don't have to spend most of my days in bed like I did all of last year. I still have bad days if I'm stressed or worn out, but I can do housework, run short errands alone, and I just have to plan for a few rest periods throughout the day.

Don't underestimate how much your family loves you and will gladly make accomodations for you in order for them to be able to be with you! My first tachy episode was 10/06, but like you my neuropathy pain and POTS symptoms hit full-force during the last weekend in June, 2008 (wierd, huh?). My hubby and I have put off having kids for the last couple of years because of my bizarre health issues, but when we went to Mayo 3 months ago the neuro said I will have more struggles than normal moms but otherwise to go ahead!

I live in Portland, Oregon, where spring, fall and winter are mostly cloudy and cool. It is quite humid here, sometimes, though. I hope you can get some encouragement from other moms with POTS on this forum. Take care, Janie

[Nauthiz]

mine started around the exact same time last year early June or July interestingly enough

[Rachel]

Hi Mae,

I'm also a mother, and I have a three year old boy. I understand the difficulties of having dysautonomia and wanting/trying to take care of your child, but not being able to do all that you want to do. Summer is the hardest time. My little boy sees other children playing outside in front of our apartments, but I just physically can't take him out there to join them. It breaks my heart. When my husband is able, he takes our son outside on warm days.

I have found some things that have helped me to be outside more often with my son. These are:

- An outdoor lounge chair in the shade. This has been a huge help. I can recline while my son plays, which is so much easier than sitting, and it allows me to stay outside twice as long as I would be able to otherwise.

- Compression hose and compression shorts

- A walker or a wheelchair (depending on my physical ability each day)

- A cooling vest when the temperature starts to get warm. The cool packs last for two hours and are a huge help for me.

- Keeping two water bottles. One I drink from, and the other one get squirted on my arms and legs. If there is a nice breeze, this cools me off very well.

- Eating popsicles. Just as drinking hot chocolate in the winter can warm you up, eating a frozen treat while outside helps to keep my core temperature cooler.

- Staying in the shade. I cannot be in the sun if the temperature is above 70 degrees. I wilt.

I hope you can find some things that help you to be outside on the warmer days. Maybe not on the hottest days, but on some of the warm days. Perhaps you could sit in the backyard in a sprinkler with your girls! Being wet in the heat is so much easier than being dry in the heat, and I'm sure your girls would love being in a sprinkler with you! If you don't have much shade in your yard, getting a large umbrella for the backyard could help you to stay outside longer.

On the days that are just too warm, maybe you could try to find some special things to do inside with your girls. You could paint with water colors, do small crafts, build a fort out of blankets and sofa cushions, play board games, paint fingernails and toenails, or watch a movie together.

Dysautonomia changes life a lot, but your family will still love you. Your girls will still want to be with you and do things with you. Life and activities just have to change a bit. In time you'll learn what your body can and cannot do, and ways to work around what you cannot do. Life can still be fun and meaningful.

Rachel

[mae]

Thanks everyone. And thank you alot Rachel those we all great ideas and it makes me think of it in a more positive way.

I never heard of compression shorts....I'll have to look them up I love being trendy still at the age of 30 and I really didn't wanna wear compression stockings all summer long , I never even wore hoses besides to church and things like that so thats good to know.

well thanks again

mae

[Rachel]

Mae,

The compression shorts I wear are "slimming attire" for those who want to look skinnier, so you don't even have to go to a pharmacy or get a prescription for them. I have a pair of Spanx, and those are great. They are very comfortable, but also very expensive. I recently found some at Wal-Mart for about $10. They aren't quite as comfortable, but they do work. Sometimes in the summer it gets to hot for full compression hose. I wear the compression "shorts" under shorts or capris, and you can't even tell I have compression on. It definitely does help me. I just have to make sure that my legs are elevated when I don't have compression on my calves and feet.

Speaking of outside, I'm going outside right now. William sees children outside and it is still early enough in the day that it is only 75. With compression, cooling vest, water bottle, and a recliner this will be possible today, so I've go to seize the opportunity!

Rachel