Parenting With Pots + No Support?

[srb]

Hi all,

Apologies for posting something that feels negative, especially with all of the trouble and tragedy in the world right now. Just trying to reach out to anyone who might understand or have suggestions.

I am really struggling with the reality of having a chronic, invisible illness while trying to parent 2 young, challenging children and also keep my job. Trying to work through my own feelings and accept the reality of my family's situation is very lonely. My spouse has really come around and is the only person who comes close to understanding. He carries a great burden, too, because he has to pick up my slack sometimes and he 'lost' a very energetic, capable wife with no warning.

We do not have help from either of our families. Both of our sets of parents have made choices that suited what they wanted and have rendered them unavailable to help. It is hard to control the hurt I feel at the lack of support and to fight the trapped feeling, knowing that every day, it's up to me alone to get out of bed and make the day happen no matter how I'm feeling. We attend church also, but so far we've received nothing more than offers to pray and awkward questions like, "aren't you feeling better yet?!", etc. Lately, I've noticed that I am wanting to withdraw from most people because it lessens the hurt. Even though I'm an introvert, that is not normally like me.

Just finished reading and marking up the book, Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness by Donoghue and Siegel. It was helpful, but also challenging. I am trying to learn how to communicate my situation to others accurately without sounding like a constant pity party. I am trying to figure out what it means when my a very close family member texts me saying she knows I'm not doing well, but does not offer any assistance - or even a gesture of caring.

Does anyone have any words of wisdom to help me work through this abandoned feeling? I have experienced several challenging, stressful life experiences in the past 5 years, including the foster parenting & adoption process, and all of them have in common that they are very difficult for others to understand and they made/make me feel isolated. Perhaps I am experiencing some sort of grieving process.

Thanks for listening...

[MomtoGiuliana]

I understand your feelings of isolation. Having this condition (or any chronic disabling condition) can be very isolating as others cannot fully understand and have their own lives and problems, even if seemingly less severe.

For me, this site, honestly, has been an important source for feeling less alone, and meeting others facing similar situations who are understanding.

It is important to acknowledge grief and the process of grief.

Parenting young children is also very challenging--even if you are well!

Perhaps counseling would help? Perhaps you can find someone who is knowledgeable about chronic illness?

[Always hoping]

Hello Srb.

I understand so much of your post. You are not alone!

I had some major stress factors and then became very ill 4 years ago with EBV. A year later, an angel came my way and I adopted my daughter. I spent 5 weeks several hundred miles away from home to be there for her birth. While it was the most amazing thing in my life, it also brought on a significant relapse. I adopted as a single Mom, so since then it has been her and I! I do have the benefit of my mother who watches my daughter while I work, but I have very limited additional resources. I completely understand your feeling of abandonment. There are many others who could be helping, but I don't believe they truly understand what it takes for us to even get out of bed at times. It has been very scary, but as you said - you do what you have to regardless of how you feel.

I have just recently been diagnosed with POTS, so at this point I at least feel as if I have "path" to go on versus the last 4 years of having no idea what was going on. I wish I had some words of wisdom for you, but I don't. I can only tell you that you are not alone and that we will find a way through this!

[Noonoo]

Hi,

As a mum and wife I share your thoughts exactly.I face a similar situation so understand your feelings completely. Pots came on suddenly when my only daughter was 12 weeks old. She's now 19 months and I'm still struggling daily, trying to get back to work for fear of ending up out of a job, and running our lives while my husband is out 14 hours a day. My family all have pots and my in laws were less than supportive, so I felt incredibly alone.

I contacted a parenting charity who gave me a support worker 3 hours a week. She was someone to help, and someone to take to. I think it was taking this step that made everyone realise I was desperate, having gone from being a vibrant woman to a shadow of my former self. I also sought psychotherapy as I felt a sense of blame for the effect my illness was having on our lives. This made me accept that I 'should' be grieving, and that it was completely natural for anyone going through such challenge and loss. I began to grieve for the future I had planned and am now learning to accept the unknown. I'm still on the path of recovery and acceptance but I made a 'bucket list' of things I felt I had just over a year ago during my therapy (holidays abroad, running on the beach with my daughter, nights out dancing....all the things I loved and took for granted) and I'm delighted to say that I'm ticking them off slowly!

It was another mum on a pots site who pointed me in the right direction at my darkest times and she's still here for me today. I'm always around if you need to chat or know that how you are feeling is perfectly normal, even if life seems the furthest from it possible xx

[srb]

MomtoGiuliana - Thank you for your understanding words! I guess I decided to reach out to this group as a first step in seeking help and companionship for the same reason you mentioned. I agree counseling would be helpful at this point because I'm trying to sort through so many things. Wonder how people pay for this though and how I could possibly arrange it without the children...

Always hoping - Wow, we seem to have lots in common! I'm so sorry that you are familiar with the same fears. It is important to be reminded that we are not alone, though we feel alone most of the time. Feel free to message me whenever. I can't believe I've 'found' another adoptive mom with POTS!

Noonoo - Thanks ever so much for sharing your story! I would very much like to connect with other mothers with POTS or chronic illness. I do want to try some therapy or counseling if I can figure out a way to make that happen. That is so interesting that you were able to get a little bit of help from a parenting organization. I've never thought of that. Are you in the UK or US?

[MomtoGiuliana]

Perhaps your insurance would cover some of the cost? Also some family counselling centers offer a sliding scale payment. We have a non-profit one in our community that does that and has wonderful therapists.

[kayjay]

I have to take some time and think before I have a wise response. I just wanted to tell you that I've lived what you wrote. I went 10 years or more without a diagnosis and honestly my husband (met in highschool) didn't even understand.

I just wanted to give you some affirmation- I've been assigned a teaching position in our church... People will not understand. They just can't. It's not meantmeanly most times. They just can't.

So chin up to you- I can tell you that both of my kiddos are now teens. They are thriving and also have a maturity beyond their years. They don't judge a book by it's cover, they have genuine Christ-like compassion, they are not quick to judge. Also they know how to do the dishes etc. It became important that they learn household tasks early.

[srb]

More good suggestions to explore, MomtoGiuliana, thank you for this.

I appreciate the affirmation, kJay. Were you open with your kiddos about your condition? Perhaps your are right that this will in the end help my children be better, kinder people. It is hard not to feel guilty about being a sick mommy...

[kayjay]

Yes- I was essentially home bound and in and out of the hospital for a year or so beginning when they were in 3rd and 4th grade. I was symptomatic prior and extremely sick when they were babies and toddlers but they don't remember that time. I went back to bed as soon as they left for school and essentially didn't get up until they were home from school. I barely remember a few years of our lives.

We relied very much in our Christian faith (still do) and as much as possible tried to view the positives. My children's character and maturity is far beyond thier peer group. We are a family and rely on each other. My biggest struggle was probably my son's worrying that I will die. He obsessively worried for a long time about my death. It has gotten better with time now that I am more stable but it isn't gone entirely. I worry about my parents dying too. Unfortunately dying for all of us is a reality. My illness has been a wonderful platform for us to discuss the most important topics.

I understand "mommy guilt"- I had to get over it. My children have me. They have my attention when they talk. They know they are unconditionally loved. I may not be the "super mom" I wanted to be. God had something else in mind. Being ill streamlined my life in that I'm not as distracted as I once was. They are also wise in that they are not quick to judge or criticize others.

I know how hard this can be on you. One of the worst moments of my life was when I was in my late 20's and my son was just a toddler. I was misdiagnosed at the time and was sent to NIH for a week. I had never left my children before. When I came home he was confused and ran from me crying. He was too little to understand that me leaving him (with my parents) was temporary.

I am telling you this story to help you remember that they are not as damaged by your illness as you are. My son doesn't recall running from me- my daughter was older and was just happy to have a new Barbie .

You love your children or you wouldn't have this concern. Trust me- love goes a long way. My children thrive on my love- even if I miss ball games, concerts, and can't play in the yard like I'd want to. Your kids can survive and thrive. Independence is a great gift for them also. The best thing I've done for my children is to really listen to them. Pots hasn't interfered with that.

[kayjay]

Also- now I've had time to think. I can't say I've come up with any pearls of wisdom- but I did think about it

I was able to work part time when my kids were small. That was huge. If you can't cut back on hours, I highly suggest trimming your budget if you are able to- for cleaning help. It's so hard to do household chores with POTS and you can save your energy for the little ones. I was too type "a" to let things go but really a messy house isn't a big deal long term. I spent too much time cleaning. When all else fails- ignore the mess. I made chores a game when I could to get my guys helping when they were little.

If you have a teen or pre- teen nearby consider having a "helper". Usually kids are pretty excited to have a job and make even a little money. I should have done this- it never occurred to me to hire help.

Absolutely allow yourself the right to grieve over your loss of "normal" health. Just believe me when I say a lot of healthy moms raise spoiled brats. It can happen quite by accident.

Learn to say "no" (unless you already can) to outside requests. I look so healthy I wasted a lot of time and energy explaining why I couldn't volunteer for this or that. When I turned 40 something snapped and now I can say "no" and really not care if people think I'm selfish or lazy. I don't even explain any longer. People are judging me any way. They can do it without me wasting my energy.

I don't know if I've helped you in any way. I just know how tough it is. It does get easier with time. Really it does. For years my homelife was essentially surviving. It was like living in a garden of weeds. Most days now I see blooms.

Also my most important advice- you can't do better than your best. It's ok to be sick and not be perfect. You can't do it all. When your kids get older they are going to be so very proud of every little effort you've made. Mostly they are going to remember that you love them.

[Always hoping]

Loved your post Kay! Thank you for those words of wisdom!

[MomtoGiuliana]

Great wisdom kJay. The early years of parenting are quite hard and much harder if you are not well. There is guilt no matter what, IMO. And I agree that raising children who are capable of doing much for themselves will serve them well as long as they are also loved and heard.

[Courtney812]

I dont have much wisdom for you OP because I am also a worried mom with little ones (2 and 4)

And I just got pots two days after the birth of my second daughter.

I just want to say everyone's words of wisdom was comforting.

[Noonoo]

Srb- I'm in the UK but I'm sure there would be an equivalent for you. I voiced overwhelming concerns to my health visitor about the impact of my health on my daughter's development...I was riddled with guilt. She put a new spin on things- she said that lots of mums are flitting from going shopping to coffee with friends, to chores etc while was at home playing on the floor and reading stories all day or having friends over to play as I couldn't physically manage much more. She felt this had contributed to my daughter being ahead of her milestones as she had experienced so much 1:1 input. Her perspective helped me to see that she was loved and cherished, which is all I want for her. I pray the rest will come with time and a gritty determination to overcome challenge.

[MomtoGiuliana]

Noonoo that is an excellent point! I was so inactive when my child was an infant. Which meant we spent a lot of time face to face, talking, playing, (resting!). She started using sentences at 15 months and her pediatrician said he had rarely seen that before. I do wonder if I had been a normal, active mother if we would have had all of that very focused one on one time together, and if her verbal development might not have been as advanced. Anyway, there are always things that mothers feel guilt over--no matter what the circumstances are--as I said before too.

[srb]

A great, big thank you again to all of you who have given me your kind words, empathy and virtual companionship. This is, at times, the loneliest road I've ever walked, despite lots of other life challenges, but I can't give up and this forum has been crucial in keeping me going... one day at a time.

kJay, your posts brought tears to my eyes and I will re-read them over and over, I am sure! Sending a very sincere, thankful ((virtual hug)).

I found out I may have access to a limited amount of sessions with a therapist via my job, so I am hoping to explore that option. And we are going to have our little ones start at a preschool, which will give me a desperately needed break two mornings a week.