feeling overwhelmed!!

[denabob]

I feel like a fool for what I'm about to say but as I read "bad day" I realize that this is the place for it! I'm crashing off my med early this month and I know what's coming. So do my children and my four year old looked at me tonight before she went to bed and said " I dont want you to be sick mommy because then I'll have to go to mamaw's and I miss you " She sometimes has to go for about a week until I can get my shot and get strong again. I finally can accept how my body betrays me but I am NOT doing a good job accepting how it betrays my girls!!!! I'm a single mom and I thank God for my parents but I feel like a failure when I cant care for my daughter alone. When my oldest is in school I'm afraid to be alone with my youngest. She saw me pass out once and thought I died ( just imagine how that was!)

I'm getting ready to move in with my boyfriend in June and he's great , he's been to most of my appointments and seen most of my tests so he understands ( as much as possible) just how bad it can be. I worry that I'll be adding alot to him he's 13 years older than me so his kids are pretty much grown. Of course he wont be able to help much when I'm down because he has to work but I have a hard time recieving ANY help.

How do we get past feeling like an inconvienience to everyone around us? Or is it just me who feels this way? I'm so afraid of being a burden for the rest of my life.

I guess this is me feeling sorry for myself but thanks for letting me!

[Ling]

Fight it with all you have. Make dam sure you are eating right and try to exercise. Even if it is a walk in the garden. Try not to over stress yourself and don’t over do it at home or work. With regards to all our symptoms, fight it! I am on my 5 Th disease at the moment and have a hard time 99 % of the time. My saving grace is my faith and my attitude. An example would be when I have so much pain I just carry on. If my legs are too sore to walk, I take a painkiller and continue. You can’t do anything about what your body wants to do. Don’t lay down and give up, that is the worst thing you can do. Mornings are the worst for me and I have a beautiful dog that gets me out of bed every morning. I have mentioned before that she does not understand when I tell her Mommy is sick. Accept what you can’t do and ask for help or get help. I cant clean my house anymore and when I do I limit the amount of time I spend. If I fight the symptoms too much I become very sick afterwards. Find the balance that is best for you. I must say you are living my fear with regards to children. But keep your eyes focus on the Lord and live day for day.

Thinking of you! DONT GIVE UP!

[pamyla]

You are definitely not alone in having days where you feel overwhelmed. I think we all have our good and bad days, yet when the bad days hit it's sometimes hard to imagine feeling "good" again. When I start feeling overwhelmed I try keep in mind that this too will pass and hang on til the good days return

But I also relate to feeling like a burden on people. I used to be one to never want to ask for help. I liked to do everything myself. That has definitely changed with pots! What has helped me with asking for help is to feel like I can give something back in return. For example, my husband carries my laundry up the stairs for me, so maybe when I feel up to it I'll give him a back rub. There are always small little things you can do for people to brighten their day and say thanks for helping Anyways, that makes me feel more empowered.

Here's hoping you get to feeling better soon. Hang in there.

Pam

[Louby]

Hi Denabob,

being a single mummy is a tough job, being a single mummy with POTS must be even tougher, and at times heartbreaking. I can't possible understand what you are going through, but my thoughts are with you.

From the burden perspective I can help (I hope) I have spent two years trying to convince myself that I'm normal, feeling like I am a terrible burden on my boyfriend, I never used to tell my family as they live so far away from me, and they would feel helpless.

I never used to tell my boyfriend (of seven years now) when I was sick, or felt like I was in a pots hole, he could never work out was wrong, when I finally faced up to things and asked for his help, he was cross that I had kept it from him - he wanted to help me, because he loved me. Sounds like you have a similar man in your life. My boyfriend doesn't completely understand, he never will - but he tries. (he is also getting better at it, and also comes to all my appointments etc)

The NDRF handbook may help, it has a section on care giving, I haven't read the section on children as care givers, but it does have a section on this. As well as one on partners as care givers - this may give you some advise.

http://www.ndrf.org/NDRFHandbook.htm

I hope things work out well for you, and I hope you find some peace of mind.

[Guest tearose]

You are not a fool! It is natural to have these concerns when you try to live with a health challenge and still live life! Like you, I worried how my sons would turn out after having a mom who was ill for most of their lives. They saw me when I was unable to move and yet made sure to ask them about their day at school and managed to provide something for dinner. Then in days or weeks later they would see improvement in my physical strength but the mom they knew and loved was the same. I would still talk to them and be part of their life. I think they learned a valuable lesson from having a physically challenged mom. They learned how to overcome hard times, and move on at a reasonable pace in times of hardship and joy. They are both teens now,and (with a humble heart ) they are fine, well adjusted, kind and compassionate young men. I think I was a role model of a saying I used..."You can't control what happens to you, you can only control how you respond". So, your family will also continue to love you for the person you are, not for the vessel you dwell in.

As for the struggle with feeling like we are a burden, yes, I sometimes have those thoughts and then...I think it is a healthy struggle because somewhere deep inside our fragile bodies our spirit yells out that on some level you are "whole and beautiful". So dear denabob, have the strength to ask for help or rest if you need to and just be sure to say "thank you" and "I love you"and talk to those who support and love you! Hugs, tearose

[denabob]

Thank you so much for all the kind words. I have friends who encourage and support me but there is something special about hearing it from people who suffer the same challenges as me! I'm hangin on as long as possible and when I do need extra help at least I know I have it! I'm trying to focus on positives I guess it just hits hard when it comes from a 4 year old with eyes full of tears. I try to not feel guilty over something that I cant change! My heart just broke with hers and I appreciate your support and will try to adjust as best I can.

Thanks for reaching out to me when I know I was being over-sensitive. I guess we have as much of a struggle with emotional as physical ( for me more emotional) and it helps to know that I can reach out and have you guys there to lift me back up!!!!!!!!!!!!!!!!

I cant THANK YOU enough.

I'm alright I just needed a shoulder to whine on.

I'll be sure to return the favor someday!

[Jackie]

Boy is "overwhelmed" the word of the week? I have been trying slowly to build myself up in activity to somewhere close to where I used to be last year...it started with cleaning the house...then it started with cleaning the house and running some errands, etc. Then it came to cleaning the house, running errands, and trying again to work a little from home (I have a home-based job). Now with all that I'm worn out and only working a couple hours a day and have endeavored to make time each day to do some Bible study, etc. and this past week I've spent everyday tied up on the phone finally making arrangements with all of our creditors for our accounts that have gotten so far behind and out of control from my illness. I am self-employed so when I was sick there was nothing coming in and my husband works full-time, goes to school full-time, and is in the national guard so he is gone a lot and I have always handled the finances so when I fell apart, there was not only much less coming in but he had no idea what to do with it, who to pay when, etc. A huge mess I've been trying to avoid I guess fearing pushing myself to work more and more and handle all those arrangements would push me back over the edge. Well, I have to say it has been difficult but I did it and every day this week has been a long one and so very stressful to the point I feared I would lose it and go lay back on the couch and not want to get up....but I refuse to let that happen so I pop the ibuprofen and take the Xanax, try to remember by B vitamins, eat salty things, drink, and just prop myself up at my desk with a pillow in my chair and try to do the best I can and press on until I have my appointments in April to see if there is an alternative medicine/treatment plan that could do anything more for me. But I'm rambling I'm sorry...just relating to my own overwhelming feelings this week. I think we all strive to be all and do all that we could do before but that isn't always possible. It is so very hard to accept. I know how you feel. Don't give up, hang in there. My thoughts are with you. I am so grateful we have this board.

Your POTS sister, Jackie.

[Marg]

denabob

I will pray for you tonight!

As for feeling like a failure, please don't. You must be a VERY good Mom to care what your children feel when they are with you and when they can't be with you. There are healthy parents in the world who don't care about their children and here you are not feeling well but worried about them. You obviously love them and they you. I'm sure if they had a choice of not having you at all or having you ill, they would take you just the way you are! You will never be a burden to them because they love you much too much to give up on you even when you get the blues.

Margaret

[EarthMother]

Dear Debabob,

As a mother of three I know the guilt. My littlest has no memory of "the good old days" nor a sense of who I was when I could walk on water. I see the dissapointment in their eyes often as they ask "Can we go _________?" and I have to answer, "I'd love to do that if I were able to, but instead why don't we ______." It's easy to feel inadequate when we have limitations.

Here's the good news ... everyone else has limitations too. Like the parents who are trying to scrape together loose change to buy bread for sandwiches and the little ones ask why can't we go buy "happy meals." Or the emotionally distant parent who can't open themselves up enough to get down on their hands and knees and embrace their child. Or the corporate mom who gives all she has with long hours at the office to make a better life for her children, and then they look up to her with tear filled eyes and say they just want more time with HER.

Children have our heart strings and I am fairly certain science will discover that GUILT is programmed into our DNA! Our children have "different" lives because of our circumstances. I'd like to look at it as fuller, richer lives that will provide them with a broad spectrum of experiences to draw upon later in life as they build their own futures.

The other good news is that they do get older and sometimes even have moments of deep empathy and gratitute. My teenager this past summer sent in a long letter to a local radio station and asked for a dedication song to be played on their "love songs" program. When the DJ read the letter on the air and I heard the sweet words of my daughter expressing how lucky she was to have me as her mother ... I broke down and cried, laughed and cried again.

We are amazing! and that will not get lost in translation as we raise our children.

Good thoughts your way, I am so glad you shared your story with us.

EM

[denabob]

I really appreciate your kind and very insightful words and I value this site very much. It puts a new spin on things.

[ethansmom]

I haven't posted in a few days (busy week) but I had to take a minute to comment on your post. I hope you're feeling better by now

Being a mother with a chronic illness and having feelings of inadequacy is something that I struggle with every single day. But so many wonderful mothers on this board have given me so much wonderful advice, and I'm actually starting to realize that it's not so bad. Ethan is still to little to understand, but I am hoping, like tearose always says, that it will help him to be stronger, more compassionate, and humble as he grows. I plan to teach him to appreciate the little things, and not to take advantage of this precious life we live.

At the end of the day, your kids are going to love you for who you are, and they are going tobe there for you, just as you've done for them. When I am really sick, and my family is essenitally taking care of themselves for a while, I feel guilty, sad, inadequate, etc...but it never lasts long once I realize that's what they are there for. Family is the tie that binds, and I have to commend you for being a single mom with a chronic illness. You are a strong lady!!

My favorite thing is when I wake up in the morning and Ethan puts his little arms around me and his head on my shoulder, and he plays with my hair. I talk softly to him so that he knows, without a doubt- that he is loved unconditionally- and if I can give him that, then everything is going to be alright. Never doubt yourself and you will not fail your children.

Let us know how you are feeling and take care of yourself

[denabob]

you're a kind person so I have no doubt that your son will grow up to love life! I'm ok ...still unmedicated until next monday (just insurance red tape-I can only get my shot in 4 weeks not three-when I need it) and I passed out landed on my hand and broke my finger next to the knuckle (on my right hand -the one I need the most ) but hey..it could be worse! Now I just have another specialist to add to my list ,an orthopedic I'm trying to not let the depression suck me in and keep my mind on other things. Just doing simple things like brushing my teeth has turned into a comedy show... I'm really worthless with my left hand so you can imagine!This morning I realized how valuable opening a jam jar can be because I couldn't Talk about a new appreciation for the "simple things"