Some Days I Just Want To Cry!

[boymommy3]

Whew!

Today has been one of those days that I just think I am going crawl in my dark place and hide!

Do any of you ever feel that way?

I have been so frustrated with feeling so tired today. I mean I feel tired most every day, but today it really got to me. Sometimes I wake up feeling yucky but sometimes I will wake up feeling pretty well...until about mid morning and then the whole rest of the day I can barely put one foot in front of the other( there are a lot of POTS symptoms I can deal with but this fatigue is the worst for me). That's not real conducive to homeschooling 3 boys and having a 2 1/2 year old and a 9 month old every day. Since my last flare up some symptoms have let up but the fatigue is not getting better and it's making me crazy! I am getting through my days but barely and not REALLY getting through. I am making it most days without staying in bed but I feel like crud otherwise. I feel like my kids are living on frozen pizza right now and I hate that!!!! Then that gives me mommy guilt. It's a vicious cycle and I hate when I get like this.

I have literally been in the bed since about 5:30 this evening. My oldest son and hubby made supper and I got up to eat and then came straight back to the bed. Then during supper one of my sons prayed for me to, "feel better from whatever is making mom feel sick." And while I am so thankful that I have kids who pray for me, that made me sad, too. It was beautiful here today, about 65, which is unheard-of where we live, and so we went outside. I was only out there for a few minutes and my legs were shaky and I was short of breath and just had to come in and sit down. I did finally force myself to sit outside with kids for a while but it's just so frustrating! Hubby has asked me 50 times what's wrong and I just kept telling him I didn't want to talk about it. He does the best he can to understand but still I found myself wanting to be alone tonight. But...then....I feel bad about that, too! UGH!

Thanks for allowing people to vent on here. It's helpful.

Hoping for a better day tomorrow (even though are suppose to have severe weather) .

[cupcakemomma5]

Boy do I hear You!

When you get into that spot...as moms we feel like we should be invincible, and then this! Something that is so difficult to explain to adults, but to your own kids.

Sorry I had the same kind of day (trust me, mine would have preferred frozen pizza, they ended up with Kraft Diner...lol)

All the respect for homeschooling the older 3.

{{{Sending warm hugs your way }}}

[abbyw]

I am with you 100%. My kids say to me very evening now - "You're not feeling well again?"

I try so hard to push through each day. I seem to wake up OK in the morning, and get worse as the day goes on. By around 5pm, I am freezing and jittery and just counting the minutes till I can go to sleep so I won't be feeling yucky anymore.

My hubby has been doing meals. I don't think my kids even remember that I used to cook every day.

I keep begging G-d to just make this whole nightmare go away.

You are a hero for home schooling. You are a hero for going outside with the kids. The fact that we keep trying to be good wives and mommies and do not turn into selfish people, makes us heros. Remember that!

[corina]

I think we all very much understand what you're going through. What I learned over the years is that my hubby needs to know what's going on. I tell him when i feel bad/sad and need some time alone so that he knows that it's got nothing to do with him. Not knowing made him feel very insecure. Now he's very okay when I need some time "off" and manages our household (which is much easier now that are boys are grown up).

Hope you'll feel better soon!

[k&ajsmom]

Im so sorry and I completely understand this. I feel so guilty for leaving my kids hanging most days. I havent gotten out of bed other than to move to the couch in a while lately and certainly have been housebound since october. I said to my 13 yr old daughter this morning from bed of course, that when Im better they get to play hooky from school and we will go anywhere they want, and she said "well, thats cool mom but that probaly wont be this year" uhh, that broke my heart. and when they say things to eachother like " i miss the way mommy used to cook" it really makes u appreciate the things we have taken for granted previously, atleast for me it does. I hope this gives are children strength in their lives oneday and character to empathize with others if nothing else.

This really is an emotional illness as well as physical. If we had two broken legs, well we know there is a light at the end of the tunnel. Pots is so elusive and just am hanging by a thread to the reassurance that sooo many of us get better. I hope u find some comfort in that too. I know I cryed my eyes out on a few occassions and I know Ive developed some pretty noticable depression from all this but I still tell myslef its temporary and it gives me just enough hope to not totally give up.

Hang in there hun, I find a good day of grieving smetimes helps me pick myself up the next day. Take care-sarah

[Altruism]

I'm getting desperate reading all this. Having a newborn is hard, but thinking about the future is breaking my heart... Is it gonna get worse? Am I gonna end up doing sofa-parenting? Won't we get better at some point? (((((

Maybe I'm in denial, but I keep believing that as soon as I find the right meds, I should be able to get my life back. How long have you had POTS? Aren't you taking meds, aren't they helping? If not, I won't even bother try and experiment.... Am I being unrealistic by thinking that SSRIs might control my anxiety and surges, BB can control my HR and then I can return gradually to normal life? It does not work like this it looks like. Why?!?! Is it the fatigue that comes back? And if you are on meds that control your BP and HR what keep bringing you back to the sofa/bed? Fatigue?

In other words, does it all mean that taking meds controls some symptoms, but we're still symptomatic enough to feel like crap most of the time? I can't do this. I just can't..

[k&ajsmom]

Alt,

I havent been sick that long, atleast not sick as I am now. I got sick last June and really ill in october. BUT I have done everything wrong, Ive stayed in bed, Ive been inconsistant with meds and fussy about trying new ones. I cant do a bblocker because of other issues and again I have been passive because of fear. Ive had autonaumic dysfunction since I was a toddler and I have lived a great life. I think a combo of things just finnally did me in.( I was a smoker, I worked with chemicals, I ate horrifically, I was an insomniac and I moved right before getting sick) And ssri was wonderful when I was on it!! It really really helped me!!! It took about two months to really see results. I just had a wierd reaction to it that is totally unrelated to Pots I think. So dont give up. Im sorry these posts made u sad, they are more of an outlet for me. Get the negative out so I have nothing but positive left in me. Hang in there, Ive found your posts to be inspiring and very helpful and am glad ur here with us but will be even happier when u dont need us anymore..take care =))

[MomtoGiuliana]

Altruism--everyone is different and this condition is hard to predict but most people DO get better. I was much like you--as we have talked about--first 10 months of my daughter's life was extremely hard for me and I needed a lot of help. After that things slowly did get better. My specialist told me that the average time to recovery is 4 years -- per his experience w POTS patients. Very few are forever severely disabled.

That's not to say you sit around and wait to get better. You may have to try a variety of meds to find the right treatment for you. I am not med-free but I am 90-95% most days.

[MomtoGiuliana]

boymommy--so sorry you had a bad day. I understand those feelings too. I agree w Corina that letting your husband know your feelings may be helpful.

[bebe127]

boymommy3,

So sorry you are feeling this way! I too, am having one of those days/weeks/months...Can I hide with you? I homeschool too, although I only have two and they are teens and fairly self sufficient. I still work with them, though from my bed these days.

I'm not sure if we can post book recommendations, but here goes:

One of my "go-to" books for inspiration, encouragement and a boost in faith is, "Jesus Today" by Sarah Young. She lives in Australia and has/had Lyme with related chronic illness, so she knows where we are coming from. So many times I open her book and it's like I was lead to that particular reading. Does it cure my POTS, no, but it does put me in a better, more positive state of mind and I can feel the peace as it comes.

Another book I've been reading is, "Coping With Chronic Illness" by H. Norman Wright & Lynn Ellis. It is written from a Christian perspective and has been a tremendous help to me.

After all, we may feel helpless at times, but we shall never be hopeless

I hope that you get to feeling better soon. Remember, you are not alone; that's what is so great about these sites. We can vent, commiserate, share victories, and encourage others while getting encouraged ourselves.

Blessings to you and yours

[Rachel Cox]

Boy, just homeschooling and two toddlers would have me fatigued! Is there anyone that can give you one full day of respite? Sometimes the only thing standing between us and some respite is our reluctance to ask for help. Sometimes people offer to help and we don't believe they really mean it. Why not call them on it? A rested Mommy might be worth the cringe-factor in asking.
I'm just saying that it's okay to ask for the help you need and give yourself a whole day of rest. I hope that there is someone you can ask, or a number of people. I hope you will find the courage, to ask for the help you need. Asking for help is providing as valid and important role-model for your little ones as being stoic. big hugs... from another Mummy.

[boymommy3]

Thank you guys so much! Your kind words are so helpful. After feeling so tired yesterday and laying in bed all evening I couldn't go to sleep. Don't you just hate when that happens! Soooo tired yet can't sleep. It was about 2 am before I went to sleep. Normally that would mean a bad day to come, but strangely, I had a good day today. Very thankful for that.

I need to clarify....The 2 year old and 9 month old aren't mine. I keep them 4 days/week, so it's like they are mine. We have them 40 hours in 4 days. I have had them since the 2 year old was 3 months old and even earlier with her brother. My husband and I have the discussion daily about weather or not I can continue to keep them. I hardly had them at all from Thanksgiving to Christmas, some because they were out of town but then partly because I became so sick. We are very good friends with their parents and they are so accommodating when I am sick. Our big issue about that is the fact that they pay me pretty and we need the money so I just keep hanging on, hoping my POTS disappears like it did last time.

I guess one thing I have had a hard time dealing with now is that I THOUGHT POTS was gone. I got it 2 years ago (although we now believe I had some form of it for a lot longer than that) and was sick for a long time, but it did go away and I was great! I had some issue last winter as well but they were nothing compared to a couple years ago. Then BAM....all the sudden here it has taken over my life again. It makes me think there is someone always waiting around the corner to jump out and grab me and I will just never know when, figuratively speaking.

Bebe127, I will certainly be checking out those book suggestions, thank you! Glad to see another homeschooler on here.

Alt, I am sending you a PM

Thanks so much everyone!