Telling Myself There Is Nothing Wrong With Me

[lieze]

Well I have just had it with being in limbo here and these WEIRD sensations.

Like last night I was trying to do dishes and just standing there I got this weird pressure feeling in the back of my head that turned into the vagal stimulation had to go poop and the burping etc etc oh and a drowsy sensation. Well part of me was just ready to throw in the towel but I didn't. I decided I'm lying down too much once again and it's having a negative effect even though it feels good and soothing at the time and helps calm my body down then I get to that point where I can't be upright without symptoms. Well then the feeling turned into feeling like I was wearing a skull cap and turning into a headache with nausea. I took 1 tylenol and it all went away. Slaps forehead with palm. This is enough to DRIVE a person crazy if I wasn't already.

I noticed I kept almost inadvertently telling myself messages yesterday like I'm okay-I really don't need all these fluids and when I did get a funny feeling saying-this is just anxiety.

I have not driven anywhere for the last several days because it just makes me nervous!

Not sure if it's because we had a storm and it cooled off but today I decided I was heading out.

The summer is beginning and I want it to be a good one for my kids and myself and I was going to tell myself THERE IS NOTHING WRONG WITH YOU! and see how far it gets me. How much I can convince myself and if I can override my thoughts that bring on the anxiety.

So I headed out with several things to do WITH ALL FOUR CHILDREN.

Hit the recyclers -ALWAYS A TRIGGER FOR ME-but let the kids do most of the work.

And the grocery but got two carts and let oldest (11) run for items in different aisles and he did a great job. I told the kids if anyone tries to grab them to scream as loud as they can and not stop even if the person tells them not to.

So we made it I'm home and didn't even have to lay down.

I really don't know what I can do and what I can't do worse case I sit down where I'm at drink water and calm down or let my heart and system reset itself or worse case call 911.

I guess today I'm feeling like I'd rather live a little and take that risk and see just what I can tolerate.

[Notgivinup]

Lieze, I must tell you, I don't know how you survive at all, with 4 kids! I have one 5yr. old. Most days it's too much for me to just get HIM out, let alone 3 others. I'm not kidding, I don't/can't do grocery shopping anymore. I stopped taking him to pre-school. The teacher offered to pick him up, and bring him home. It was beginning to be a huge battle that I was/am too weak to handle.

Today I had to take my mother for cataract surgery. She's all alone, and can't drive. It's been mid 80's all week. I thought I was feeling a bit better, but today proved I STILL HAVE POTS. I got weak, dizzy,ex- irritable & had to lie down at my mom's house after putting her eye drops in! This *****! I'm worse than my mother who's 20 yrs. older than me. But yesterday I cleaned the entire house and did laundry all day and felt fine. Of course I stayed in the air all day, AND didn't have to drag a whiny 5 yr. old to the eye doctor. But like you said you just never know what you can or cannot do. I'm still not recovered, my brain is foggy and I'm a little dizzy. Ugggggg, this *****.

[lieze]

Hang in there notgivinup!

So far I'm doing just fine but I have taken rest periods sitting on the couch.

I just hope I don't crash (I think that should be a dirty word)

But I'm trying to think I CAN!

Good idea to lay down when you felt that way and I hope you recover soon.

[peppermint patty]

I just want to say to say that both of you are amazing. Taking care

of little ones while dealing with this is a feat unto itself.

My children are grown (still living at home), but I find it so very difficult to

do daily activities. If I do the dishes or some wash, I feel like it has

been an accomplishment. I am not able to work or drive at this point in time

and it is extremely frustrating..pulling my hair out.

Please try not to be so hard on yourselves.

I truly think you are extraordinary women.....Pat

[lieze]

The level that you ladies are describing is where I have been at the past couple months. I did drive my daughter back and forth to preschool but it was a huge task and scary sometimes.

I think I let my whole day revolve in worrying about that trip.

I also avoided going to the store and would have bad reactions there all to come home lay down for 20-30 minutes and feel fine again.

I did avoid going anywhere the last three days and my husband came home later and later every night. Finally I just thought this isn't working I have to come up with a different plan.

I felt very motivated because this was the start of summer vacation and I just took off and did okay. I hope I can continue to build on that and have more good days.

Sometimes I think it is a nightmare to have such young kids and be dealing with this.

Other times they are my motivation to get up and move my body and not give in to the crippling feelings.

[blueskies]

I truly get this 'want to be in denial' thing. I'm going through a more symptomatic period at the moment. Last night my hubby came into our room to tell me that my son had rung to ask us to visit him and his wife and our grandkids on the central coast for the weekend. (Last night was Friday night in Australia). It's about a two hour drive to their place and I'm lying in bed and I said 'sounds great.' And I was sort of convinced I could go. I woke up this morning to the reality that there was no way I could go and stay overnight. I need to be at home today dealing with how I feel. So I sent hubby off for the weekend to visit them and I get a break from having to do anything for anyone other than myself until tomorrow afternoon. At the same time I would have loved to see my son and grandsons.

Sometimes I do feel if I just ignored the whole bloody thing it would be better and I've tried. Like a

'theory' I'll try out. But I've felt sort of ridiculous when I've tried to. I can't usually walk more than a couple of blocks for heaven's sake. And I'm sharply reminded of my present limitations.

I did it yesterday. I went to the city with my mother and we did some shopping. I stayed on my feet longer than I have for ages. (Which isn't very long for the 'average' person). But today I feel like **** so reality does bite.

blue

[Notgivinup]

I just want to say to say that both of you are amazing. Taking care

of little ones while dealing with this is a feat unto itself.

My children are grown (still living at home), but I find it so very difficult to

do daily activities. If I do the dishes or some wash, I feel like it has

been an accomplishment. I am not able to work or drive at this point in time

and it is extremely frustrating..pulling my hair out.

Please try not to be so hard on yourselves.

I truly think you are extraordinary women.....Pat

Awww, thanks Pat. It IS extremely frustrating....pulling my hair out too!

[iheartcats]

Lieze,

I've done this for the last year. It is helping mentally for me. I still have my symptoms, I still have POTS, I still have good days, bad days, and OK days. But I know what I have now...and that I'll make it through.

It's so daunting at first. I had to remind myself POTS wouldn't make me drop over dead. I still get anxious about doing things (like overdoing it on an outing, going away on a mini-break now and then, taking on too much, etc.) but I try to push on as best I can and keep the negative thoughts at bay.

It is not easy. The anxiety and stress of the illness is something that lurks at the back of my mind. But I figure I do myself or my family no good if I don't try to fight it.

I hope this makes sense. I know you can't 'cure' yourself with thoughts. But it's more control over how the illness is going to make you treat life and not letting it completely limit you.

I do hope this works for you this summer - I'm glad you are thinking positive. We have control of that at least, right?

[Notgivinup]

The level that you ladies are describing is where I have been at the past couple months. I did drive my daughter back and forth to preschool but it was a huge task and scary sometimes.

I think I let my whole day revolve in worrying about that trip.

I also avoided going to the store and would have bad reactions there all to come home lay down for 20-30 minutes and feel fine again.

I did avoid going anywhere the last three days and my husband came home later and later every night. Finally I just thought this isn't working I have to come up with a different plan.

I felt very motivated because this was the start of summer vacation and I just took off and did okay. I hope I can continue to build on that and have more good days.

Sometimes I think it is a nightmare to have such young kids and be dealing with this.

Other times they are my motivation to get up and move my body and not give in to the crippling feelings.

Yes, I agree the kids can be a motivation. You have to do things even when your body is saying no way. I've done that too. I would of loved to have more kids, but the thought of doing what you're doing gives me a panic attack just thinking about it. Strapping all of them in the car, just getting them dressed and out the door, shoes, etc., fighting. Do they fight? How do you deal with it all? When I'm very POTSY I can't even stand up straight. My 5 yr.old can talk me in circles until I agree to whatever he wants because I'm too weak to fight. Do you have any secrets to share?

[ramakentesh]

I think with POTS you have to ignore it sometimes - some of the weird things that happen some days you just know your doctor would think were all in your head anyway... Sadly being as disabling as it can be there are times when you wish you could but cant.

[futurehope]

I always have POTS, and I always push myself. In my experience, I do better if I push myself, but there is one caveat.....by pushing myself, I may be symptomatic for a few hours to a few weeks to a few months, but....eventually, my body adjusts. I just have to live through feeling lousy.

I feel worse if I don't push myself. I want to sit/lay around and do nothing, because that "feels" better, but I actually do better in the longrun if I push myself. The effect is not immediate, but the improvement eventually comes.

If I get sick, I lose the improvements I've gained and it will take months to get them back, so I try to avoid illness (if possible):I'm a bit of a fanatic about avoiding germs because of the negative effect of illness and medications.

PUSH is my middle name. I feel lousy for it, but I eventually am able to tolerate more. The less I do (the less I push through the bad feelings), the less I can do. It is a necessity that I push, because that is the only way for me. I must do the best I can with what I have been given, and if that means using every available means to help myself, I will use those means and push. I'm talking about different situations like heat, prolonged need to stand, whatever normal people do without preplanning. I preplan, then I push. Not easy, but necessary for me in order to live my life.

PRAY PREPARE PUSH

[lieze]

Well I'm doing it.

I worked 2 hours Friday night besides being very active at home all day and felt great.

Worked an 8 hour shift last night and had to fight the feelings.

Oh I tell you that anxiety and the negative thought patterns that come with it. I honestly thought is this what it feels like to be psychotic? I mean I just had a running dialogue of negative and it was all I could do to fight it.

Worked another 8 hour shift tonight and I had to cave and take a sliver of Xanax. It got too intense I couldn't control it any longer. My pulse was fine and heart kept up through all of this but tonight I got dizzy, lungs tightened up, it was hard to breathe, and I was very flighty, wanted to run from the situation. A sliver of Xanax took that all away for the rest of the night.

And cleared my head. I notice brain fog Saturday night. I never realized that was what I was feeling and had an ah ha moment. I would get brain fog just didn't know what it was.

So it's working. I may need help with the anxiety I realize that.

I do have a therapist I can go to who is very willing to try different meds.

I already tried Buspar and had a very bad reaction and went to ER.

So I'm going to try to continue the activity.

Thanks for all of your stories and encouragement.

[Dizzysillyak]

I was in denial the first 8 years of my illness so I can totally relate ... After that I just decided to plaster a smile on my face and pretend I was "FINE" all the time. I've been disabled with CFS/ME with OI for 20 years now but things got better for me after 15 1/2 years when I discovered the holistic approach.

I'm not sure if you're up on holistic / dietary interventions or not so I wanted to mention how getting the crap out of my diet and taking a few supplements has helped me. I actually feel in charge of my health now ... Not that I have it licked but I can manage most of my symptoms now.

I'm on a Paleo / low carb / low oxalate diet. The Paleo diet is known to help regulate blood glucose levels and it gets the crap our of our diets. Low carb because I'm super sensitive to carbs. And the Low oxalate part came about after I had 3 kidney stones. FWIW .. the low oxalate diet also keeps my vulvodynia and most of my UTI symtpoms under control.

Supplements should be based on what your body needs. Testing for nutritional deficiencies is a good place to start ... however, I've found that Theanine and 5HTP have helped me sleep more than anything I've ever taken before. Probiotics are a given ... Unfortunately, taking supplements is such an individual process that you'll need to look at what your body needs.

HTH ... marcia

[Guest humanb4monitor]

Leize--what kind of day had you had before you did dishes and all that weirdness began? If I may inquire?

[lieze]

This day I had been sedentary most of the day.

Reclining in bed and only up for food and drinks for myself and the kids.

I got up to do some dishes and laundry and typed this after.

[potsgirl]

I do this all the time. I keep thinking I can plan things, but then the day arrives and I end up not being able to go to...the movie, the gym, errands, church, doctor and hair appointments, trips...the list goes on. But I agree that at least it's keeping our thoughts more positive than negative. I would rather think I'll make it then be a defeatist and never even try. Talk about zapping your energy!

So yes, I too push. And sometimes, I even get to where I'm going.