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A Little Down


sstephan
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Hi

Just felt like writing a short post tonight. I am feeling a little down about this whole illness. What really bugs me is that I don't know what the future will be like for me. What really gets me is that sometimes I feel just fine and forget about dysautonomia and all I have been through. Then like today I took my daughter for a walk around the block. It was very muggy out and wham! felt horrible again. The other day I felt well enough to go the gym. Then I felt really depressed once I got there. At one point in my life, I was a fitness instructor and worked out constantly. It was a way of life for me. Now when I am able to go to the gym I feel very out of shape and have trouble with coordination if I take a class that I once was able to teach! I have trouble following some of the steps not to mention heart rate. My hubbie is a weight lifter and it is a constant reminder of the person I used to be.

I am a teacher and off for the summer now. This sounds stupid but when I am working my daughter is in daycare. I feel like I don't have to worry as much about her because she is in good hands. Summer is the worst for me due to heat. Now that I am home with her by myself all the time, I worry that something will happen to me and I won't be able to take care of her. Then I can put it out of my head and live a normal life again. But once again at a trip to Target yesterday I got very shaky and my blood sugar was low and I am now worrying again about taking care of my daughter on my own.

I have times when I can function very well. Then I have times when I can barely function at all. That is what gets me about this illness. At the same time I am also realizing how much it has taken from me all the same. And I get frustrated that friends and family just don't understand.

Thanks for listening.

It helps just to vent a little.

Susan

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Susan

I am sorry you are so sad with it being just you and your little girl all day. That must be a worry. may I ask how old she is?

I hope you keep bottled water with you at all times or gatorade and snacks in the car or in your purse.

I can't imagine having a little one to take care of...it's all I can do to take care of me.

But its tough on you moms. I know we have many here and I am sure many can relate to your situation.

I only have 'cat kids' but your post touched me and I just wanted to respond and tell you to hang in there and hydrate and stay cool. and if your daughter is old enough, give her simple tips to your situation to keep it from being scarey and how she can help..calling 911 or your husband..

Please let us know how you are doing.

Sophia

Here is some snow to keep us cool!

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Susan-

I am reading your post and feel your frustration regarding the unknown and anxiety regarding your daughter. I don't know what to say as it seems everyone's experience is dift.,but we all seem to have life changes due to illness. I do know how hard it is to raise a child when you are ill and I remember many many times I was terrified, as I didn't know how I would feel or if I would collapse. Somehow I got through it, but with a lot of help from family and friends and actually had to send her to daycare even when I wasn't working for a period of time.

It is good that you have the summer off and can hopefully get stronger, being able to rest when you need to. I can imagine how difficult it must be to no longer be able to tolerate the exercise you used to love. I am not an athletic person and never was, but I can imagine for you that would be a major loss.

Try to remember all the good days you have and that you do have them and hopefully they will increase. If I think too much of what I lost it becomes overwhelming. I find that if I journal everything I do in a day, and I mean everything, it makes me feel more positive. Of course I tend to journal more on the very bad days,

As far as being with your daughter and not feeling well. I always had contact info with me, before the day cell phones were ever so available, should I need to hand quickly to someone for help. Sounds somewhat dramatic, but I felt at least they would know who to call, meds, etc.

Do you take snacks and water when you are out? I do that every time I leave the house, no matter how long I will be-even just stepping out in the yard for a bit.

Take care--

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Sorry to hear you are down. I hope that things get better soon for you. I hope you are able to find things you can enjoy. I know when there are things I can do around the house it makes me feel better. I hope you start feeling better soon.

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Susan,

I totally understand where you're coming from -- I also have a young daughter who relies on me completely, and I am afraid if one day I have tachycardia that causes me to lose consciousness, that she'll be out walking around town by herself! But I try to remember that I have never fainted, and that no one can predict the future -- any mom can faint, and it does no good to sit around worrying about it all day. So I try to be practical and lie down when I don't feel well, so I'm not chancing it. And my daughter is very cooperative and sweet; she even will come over and rub my back, and tell me she loves me (and she's only 2-1/2!). She is very perceptive, and I try to be strong for her because I don't want her to sense that I'm not well and worry about me.

I also have days when I can jog, and ones when I can do nothing but crawl to the couch. It's the nature of this illness, I think. I find that keeping my attitude positive via meditation, journal writing and stress management is the best way to keep myself healthy and functional. Figure out what helps you and do more of it, whether it's eating a good diet, going for walks, de-stressing in whatever way, etc.

Take care,

Amy

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I understandable to feel that way. Nature of the beast. I have 3 kids the youngest is 4. I also work within the school system but only part time and am home also. Now I too worry about what will happen during the day home with the little one. The two older will go to day camp. Especially if you are not feeling well those feelings surface, then when you have a few days of feeling o.k., you start to forget if only for a short time.

I echo what everyone else says, try to keep hydrated, dress cool. You'll do fine. :(

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Guest sonotech

Susan,

I understand what you are feeling. I have 4 children and have been sick for at least 10yrs now. I don't know how old you daughter is, but I have put a list of phone numbers TAPED TO THE WALL by the kitchen phone. It has 911, and every close family members name and number. I have it printed very big and easy for the kids to read.

I have even had them practice calling the numbers, like when I just want to call my mom to ask her something....I use that opportunity to have one of my children look at the list and do the dialing. They can learn at such an EARLY age.

I think (just my opinion) that it is important to keep kids somewhat informed of your illness so that in the event of an emergency, your daughter would be less scared. Let her know that you could "pass out" (or whatever your symptoms are) and that you will be "OK" if this happens, but you would need her help, etc.

Do you have any neighbors that you are friends with?? You could have one of them check on you occasionally, or tell your daughter if she needs to get help which houses to go to.

I also know how hard it is just trying to take care of her ALL DAY now that it is summer. Of course I feel some guilt when I have to lay in bed all day and my kids must entertain themselves, but I always remind them that when I feel better (hopefully in a few days) that we will get out and do something.

I have them lay in bed with me sometimes to watch movies, tickle them, or even play cards. Just remember they love you "no matter what" and it always SEEMS worse (to the mom's) than it REALLY IS to the kids.

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Guest sonotech

Hi Susan,

Just wanted to check on you. Are you feeling a little better yet?? Let us know how you are doing because I know that when you are "down" it can feel like a very lonely place and I certainly don't want you to FEEL like you are alone!

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Thank you all so much for your posts. It was so nice to hear from all of you and thank you for sharing your experiences. My mom and I were talking today and she told me that any mom always worries about what if something should happen to you and your child would be all alone- regardless of having an illness or not. So I began to feel a little better. My daughter is 18 mos old which is why I worry so much about it. She is too little to do anything or understand why mommy is isn't feeling well. It helps to know that you all go through the same thing too! And that you have days when you feel great and days when you are a totally different person health wise. I guess it's the mystery of this illness. I had a student pass away about two years ago from a very rare horrible genetic disease called ALD. When I am feeling down, I often think about his family and count my blessings.

Thank you again,

Susan

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Susan,

Just want to echo what the others have said and tell you that I understand what you are going thru mentally with having to accept that you can't always do everything you did before. It is so hard for those of us who were active and enjoyed what they did to have to admit our limitations. 2 years ago I denied that the doctors were finally right about what was wrong with me and was sure I could prove them wrong. There is a kind of peace to the acceptance and it actually has improved my days that I feel good. But, it takes time to get there. We have a right to grieve the losses and worry about the future. And then there is time to hand that worry over to a higher power and live for today. Seems for most of us, these severe symptoms wax and wane and sometimes the good spells go on for a long time. Hopefully, that will be the case for you.

Ditto what everyone said about food and snacks at all times. I keep saltine packages in the car because when I get hungry, I get very symptomatic. Also, my own opinion, people who can "listen" to their bodies and respond early to symptoms seem to be more in control. I spent years denying pain, fatigue, pounding heart etc. because I wanted to be strong and not a problem to anyone. It was not a good thing and now I need to backtrack and learn what my body is saying. Be nice to yourself and try to remember also, that there are researchers that are very interested in these dysautonomias and every new day brings new hope.

More people are being taken seriously and being appropriately diagnosed. We used to be written off as "hysterics" : )

Lori

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Books, crayons, and movies are a sick mom's best friends during the summer heat. As you may know, I have two kids now 7 and 5 but at my sickest-symptom wise (Before pacemaker and daily ivs) they were both under 5. So.... afternoons are a great time to cuddle up (even when you feel okay) and take it easy in bed together if possible. That quick walk you referred to is quite a feat when it is so stinking hot- so be careful. Just getting out to go to the store can take a lot of out of you when it is so hot. Going to the store can be a problem even on our best days so when you figure in the heat it's no wonder a store trip can wipe us out. Everyone else gave some excellent advice- being prepared helps trememndously!

Carmen

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MoM2Abby,

I am so sorry that you are going through that!

I can relate to the exercise thing because I used to exercise in the Army and was 5'6" and 120 pounds!! I was in shape and bikini body! And then my beautiful son came along and I havent lost the pregnant weight (11 months now) and im 160 pounds. So I feel your pain there!

I dont have great words of wisdom, but I do care and I just want you to know that your not alone!

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Susan,

I completely understand! I feel/think about the exact same thing. I have a 16 month old daughter and during the worst moments of each day, when my symptoms are the worst and I feel like I'm dying, I pray that God will take care of her until I'm feeling a little better again. I do worry about how I'm going to do this, as right now she's still in her crib, so until I'm able to get up in the moring, she's pretty contained in there, even though not always happily, it prevents her from getting into something she shouldn't, but in a short time, she'll be getting around the house to quickly. We haven't come up with any ideas as to how to deal with it. I've mentioned to my husband, that we might have to have him drop her off at a daycare until I'm up and functioning, but most days I'm not well enough to even leave the house if I'd have to go pick her up from a daycare, so I just pray he'll figure out a way to work mornings from home once that time comes. It just is so scray and frustrating as everyone I know doesn't understand this and would probably be irritated if we'd need to do daycare even though I'm an at home mom, but I don't know what else to do????

Lots of hugs,

Tammy

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Tammy-

Please don't ever feel guilty for sending your daughter to daycare, if necessary. I can tell you, as stated in my previous post, that I had no choice at one point in my life and emotionally it hurt me, more than her. I was completely unable to care for her and my family did as much as they could before and after their work and weekends, but they had lives to. It was just something I had to do at the time and she was just fine and I was getting the rest I needed, minus the anxiety and added stress of caring for her at the time.

I realize this is not an option for many who can't afford it. It was a serious financial burden on us as well, but I was receiving partial pay with disability payments. There are sometimes many loving individuals who are often looking to volunteer etc. through Senior programs, churches or friends, students who look to do community service,mother's helper or some willing to do care for less than actual day care center or provider, depends where you live I realize for availability-but some thoughts.

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