Having a really bad day!

[shayden]

Hi All,

God I am so glad that you all are here to help me out when needed. It just seems as if no one else understands and a few don't even want to.

I have been partially bedridden with POTS now for almost 5 months. I pass out more then I let others know. I sleep constantly. I am in pain almost all the time with migraines, body aches, chest pain, or just any other pain that wants to happen that day. When I say partially bedridden, what I mean is: I can use the restroom on my own, shower, I can maybe wash the dishes and straighten the living room. Other then that...count me out!

I have been a personal guinea pig for all the best POTS Doctors in the US and let's not forget my GP. I have tried medications never used in the POTS field and have tried 2 times the maximum dosage for medications that are used. I have had so many test done over the past years and I guarante that I have since repeated them all a minimum of 5 times and they are revving up to do them again. If the outcome didn't change the first 5 times...what makes them think it is going to change now?

Now we are discussing implanting a device into my chest so that it can read everything it is doing around the clock. Why can't they just admit me into the hospital, hook me up to the heart monitors and do it that way? I mean for heaven's sakes....I don't get out of bed anyway so the reading wouldn't be affected by this. I don't have normal daily activities.

Now on to my biggest concern and I didn't mean to put this last but I thought you all needed to know the situation first. I have a 15 month old son! He is my life, my love, my strength, and everything else he could possibly be. I can't raise him like this. I want to be able to take him anywhere at anytime. How am I suppose to do this? All he knows right now is that Daddy is the one to go too to play and Mommy is the one to go too to cuddle. This is going to get old to him fast.

I guess my point is...I know I will never get 100% better...but will I ever get to the point where I can have fun with my child and husband? Where I will be able to go on vacations? Or simply enough...leave the house rather then for another Doctor's appointment?

My best to all!

Susan

[ethansmom]

Hi Susan! I am really sorry you are having such a bad time. I know you had mentioned before that you have had POTS for several years. Is this the first time that you have been feeling this bad? I know it's not fun at all, but it may just be a down time for you, and you may come out of it in due time...on the other hand, I'm sure you've been searching for answers and exploring all the possibilities to try and figure out why it's this way. I wish I had more to offer...are you making sure that you are getting tons of fluids and keeping your electrolytes up? Are you doing any type of exercise, even lying down or mild yoga, to help keep things flowing? Getting plenty of rest, without resting or lying down too much (a catch 22, I know!)? I know it can be a struggle trying to keep up with a toddler when you aren't feeling well. I have a 19 month old, and sometimes it's tough to get through the days. I feel blessed that I have been stable enough to do things with my family sometimes, but I've come to terms with the fact that it will never be "normal" vacations, amusement parks, zoo trips, days at the beach...so we try to make the most of it. Your son is still very small, and very "moldable"- I've had many wise and seasoned moms on this board give me some great advice on the compassion, caring, and understanding that theur children grew to have for them and their illness. I feel fortunate, in a twisted way, that Ethan was born after I got sick, because he will grow up this way, and will not have to adjust to it the way we have.

If you are having any good days, then spend them with your family and don't dwell on the housework, or errands- because your memories are more precious. When I am feeling really awful, Ethan and I watch cartoons together, we read books, we color, work puzzles, things like that. He is just getting to the age where he can play by himself for a short while if I need to lay down on the couch next to his play area. My parents live nearby and they've been taking him outrside to play, going swimming, and even went to the zoo...so I at least feel like he's getting some "active" fun time too. I do get bummed that I have to miss out on everything, but I am giving him all I can, and for that I don't think he has suffered

I hope that you can begin to feel better soon...there are a few of us on this baord that have little ones and we are sympathizing for sure. Take care

[Ernie]

Hi Susan,

I have about the same limitations as you. I have 2 strategies.

a) I live on a day to day basis with the limits I have and;

I hope deep inside that one day researchers will find a "cure" for us.

I am still in the "shopping" stage of finding a Canadian specialist. I try to accept the little I can do and I am slowly reorganising my life to find pleasure in the little things. It is sometime difficult because I was superactive all my life before the turnaround.

Hope this encourages you.

Ernie

[purplefocus]

Susan,

I am so sorry you are having to go thru this. I was where you are about a month ago and for me, the severe stuff passes after awhile then I deal with the less debalititating symptoms. My symptoms prevent me from working but I can usually manage to clean and cook in the house. I have a son that is 3 and I understand about not being able to do what I want with him. I do like Ethansmom said. On bad days we watch cartoon and I am able to just lay on the couch most of the time. One thing we found out he loves is play dough, so I got him one of the little sets that makes things, I put a table clothe on the floor in front of the couch and he will play with that for along time and as long as I can see his creation he is content. You will figure something out. What I really want to say is that I think you will get more mobile. You may not be able to do like all the normal stuff like all day amusement parks but maybe a short trip to a local park in the evening when it isn't so hot ( I assume the heat bothers you.) Your son will adjust and it's good that he has a dad that will pay attention to him. My husband is great with the kids, I also have a 13 year old. Best wishes.

Paige

[blackwolf]

Dear Susan, Hi! I am just starting a "down cycle" as I call it, all of my symptoms are just about out of control. I reciently started a new drug(theophylline) and I know I should be worse off by now, so I hope the new drug is helping. the new drug is for asmtha, but my Cardio said it was a better drug than the Norpace(made my feel yucky). I'm still on 150mgs but I feel a lot better than normal for "dowm time". Mostly just dizzy and painful( I also have Fibromyalgia/Chronic fatigue). Sometimes my heart beat bounces form slow to fast(35-140) but it doesn't pound thru my skull.

I hope you can find the help you need, remember we are here to talk to.

Blackwolf

[Sue]

Dear Susan,

Along with the rest of your new buddies I can totally sympathize with you. Since January of this year I have been pretty much housebound myself except for doctor visits and tests at the hospital. The last couple of weeks have been much better. You'll notice everyone seems to have "cycles" Mine are long and dragged out, one bad episode can damage my whole system for months. Be patient with yourself, be willing to try anything new. I am now on a triple dosage of what I was taking and think it may finally be kicking in. I really struggled with the idea of taking such a high dosage but its obviously something I need.

As far as your family and little one. When the good days come take advantage!! My kids are teenagers now but we still put a blanket on the frontroom floor order pizza and put in a movie. This started when they were toddlers because of the situation and is now a wonderful family tradition. Can't imagine too many teenagers who would still want to have a family picnic in the frontroom!!!

Take care of yourself and know were all here when you need us

Sue

[MightyMouse]

Susan, I sure feel for you! I can be really hard riding out the ups and downs of this illness, and even harder when the downs last a long time... or go lower than you thought you could handle.

All I can say is try to ride it out and realize it will usually get better than this moment.

Nina

[Michelle Sawicki]

Hi Susan,

I feel for you. Many of us here have been where you are at now. I know it is possible to get to a more functional state because I, and others here, have done it.

I hope this doesn't sound too depressing, but have you considered a wheelchair for the time being? I know a few bedridden people with POTS who have been able to go out again with the use of a wheelchair. We ran a story about one of these people in our last newsletter:

http://www.dinet.org/Summer2004/augnews3.htm Emma inspires me greatly, as she enjoys life to the fullest despite her illness.

I'll keep you in my prayers. Know that we are here for you through the good times and the bad.

Michelle

[shayden]

Thank you all so much for your encouragement. Things have still not improved and now they are speaking of putting a device in or near (I will ask more questions when we cross that bridge) my heart to read what it is doing at all times.

I took the advice regarding the wheelchair and I will be using one soon to take my son to the zoo. We are starting to have 65 degree days which is perfect for me. I am also trying to learn not to be so embarressed every single time I pass out in public. I don't know why I am embarressed anyways....everyone is always just very concerned. My husband has gotten to the point where when everyone in the restaurant wants to call an ambulance...he simply says...."This is just what her body does and she will be off the floor in just a minute."

I have notice thru reading my past posts and others that I need to start taking my own advice with how to handle this.

Thanks for being there for me in my time of need!

Susan