guilty of POTS

[Pistol]

Hi - I am wondering if anyone here is familiar with this situation: I am a Mom and disabled due to POTS. I try to keep up with the housework but do so barely - that makes me feel guilty. When I have a good day I can do stuff in the morning but then am wiped out in the evening or even the next day - that makes me feel guilty. I cannot attend my daughters events ( school. sports or hobbies ), often am not able to join my family in going to church or shopping or eating-out - that makes me feel guilty.  In the winter I can't go out due to the cold and in the summer due to the heat - that makes me feel guilty. My daughter's BFF's mom takes her shopping and to the movies - that makes me feel guilty. And when I decide I am well enough to go somewhere my family sometimes asks me not to because if I give out they have to leave early.  If I rest before an event to be able to go - I feel guilty. And if I last minute get too scared to go because I might pass out - I feel guilty. I know I should not feel this way but I do anyway. How do you all deal with these feelings and what do you tell yourselves to "snap out of it"?

[Always hoping]

That's a tough one and I'm sorry that you have to deal with any of this.  I am a single mom of a 6 year old.  I understand the guilt.   I got sick before she was born, so our life to her is normal.  I'm sure this will get harder as she gets older and I can't keep up with her friends and their families lives.   I have no answer, but can only say to try to focus on the things you can do with your family.  I'm sure they love you and the time they get to spend with you is what is important - not always where they spend it with you.  Maybe start some types of family event that you can always participate in like a weekly game or movie night at home.  Make it something fun with favorite foods or even a game to determine what food/snacks you'll all have that night or crazy desserts.  Try to focus on the things you can do with them and make those times memorable.  I wish that I knew the answer for this, but all we can give them is our love.  Which based on your post, I can see you already do.   Be well.

[MomtoGiuliana]

I understand how you feel.  I had severe POTS during pregnancy through the first 8 months of my child's life.  After that things improved but I was not well for several years.  I really took it personally at times, and felt I had let my child down.  I stopped b/fing at 4 months to take a medication.  We barely left the house for the first 6 months of life other than to go to the dr.

One thing to keep in mind is the oxygen mask on the airplane analogy.  They say affix the mask to yourself first and then assist others.  You cannot possibly be of support to others if you are not first taking care of your basic needs for health and function.

Another thing that helped me was to keep in mind what I was able to do.  I was able to b/f some, and there were benefits.  Bc I was unwell my child and I spent a whole lot of time together quietly in the first year.  I read a lot, talked a lot, interacted a lot--albeit also rested a lot and was lying down a lot of that time.  But these kinds of interaction are crucial for any child's development.  My child started speaking at 12 months and used full sentences at 15 months and I attribute some of that to the intensive time we were one on one together and not distracted by other things I might have been if I were well.

There are so many less than ideal situations parents face.  There is also a lot of pressure on parents in our society to be perfect.  I think there is a lot we can teach our kids about slowing down, listening, being less distracted, not having immediate gratification.  These are valuable experiences in early life.

[Clb75]

I definitely relate to everything you’re saying too. I first got sick with CIDP during my pregnancy, then became sick with pots 2 years later. I’ve been housebound ever since and like always hoping said this is normal to my child. I feel bad about the things I’m missing out on and wish I could do and bad when I’m feeling sick, dizzy, exhausted etc and can’t interact the way I want. I do think it teaches kids more compassion though, my child can tell when I’m not feeling great and will say something nice like I wish you weren’t feeling dizzy. 

I agree focusing on the things you can do and having the same compassion for yourself that you would have for others in a similar situation can help. I can’t do a lot of physical activity but when I’m reclining in the playroom, I can do quiet things like puzzles, coloring, board games etc. so I try to focus on those things.

It’s funny you posted this, I actually just bought a book from amazon called “The sick moms guide to feeling well again”. She talks a lot about guilt, self care, finding balance and how to think outside the box to find solutions to getting things done. I felt better after reading it, and in knowing others can relate to what I’m going through. I know it’s not easy but try to remember you’re not alone and you’re doing the best you can under difficult circumstances. Good luck.

[Pistol]

Thank you all so much for your compassionate and wise advice. It is one thing to share this with "normal moms" and moms like you who share the same situation and handicaps. I appreciate it and take it to heart!

[Hhh16]

Oh boy! I definitely cam relate to your feelings of guilt. It very difficult for me as well. I'm in the "limbo stage" of diagnosis.  Since September I have felt unwell. Dealing with the fatigue, chest pain, heart palpitations,  sob, abdominal pain... all the symptoms. It wasn't until a few weeks ago that I actually started having fainting episodes. I had the tilt table test today and passed out at 29 minutes. So now just waiting to hear from my doctor.  My quality of life has been not so great so dealing with the guilt is my biggest demon. So thank you for the positive outlook of finding thing we can do with our kiddos. Honestly They do just want our attention and love regardless of what it is we're doing.  I'm glad there are websites and support groups out there because for a very long time I felt alone. When you try to talk to healthy friends and family they just act like it's a cold and we'll get over it soon or they think we have anxiety and need to relax.  Lord help us. Any insight to what the future holds? What types of regimens works best for you all? Thank you for any feedback.