How Do You Not Freak Out At Every Little Thing

[lieze]

So I slept way in today---11am felt weak and headachey when I got up could feel my heart beating like a rabbit.

I look as white as a sheet!

I'm having pangs of nausea, weakness, general pain all over.

I feel like I'm starving but have no appetite-so depleted.

I got a sharp pain near my right kidney but then it let up and moved, I'm figuring it was just gas.

So automatically I'm thinking this is it.

I'm thinking I have starved myself.

But yesterday I had several big glasses of milk a boost dietary supplement some yogurt, part of a boiled egg, and some cookies I made.

A Gatorade and at least one can of pop and a glass of apple juice---I know that's not enough but I really don't think that puts , me into starvation mode either.

I'm imagining I'm in some kind of electrolyte imbalance----but I just checked and milk has potassium and I drink so much milk everyday like 3-4 16 oz glasses so I highly doubt that would leave me vulnerable for an electrolyte imbalance.

How do you not totally freak out if you get up feeling bad.

I think distraction is about the only thing that works for me at this point.

I think I've become a huge hypochondriac and neurotic with all of these horrible feelings.

[autumn]

For me, I know that freaking out is just going to make things worse (drive my heart rate up more) and that a bad day is just another part of the cycle, so I try to just roll with it. If I'm having a particularly bad day, I use it as an excuse to hang out on the couch all day and sleep or watch movies. I also try to remember that it could always be worse, and I try to be thankful that my condition isn't something more serious.

It's not exactly easy living with all this, and I feel sometimes like my body is just completely out of my control, but I won't let it take my sanity, too. I have limitations, some days are rougher than others, but POTS doesn't define me or own me any more than I let it. So a bad day is just a bad day, and I hope for a better one tomorrow.

[flower]

Hello Lieze :-)

I'm sorry you're going through such a scary time. I too was terrified for a while before (and even after) diagnosis. My body just seemed to be completely out of control and I worried it was going to kill me, basically.

After a while I realised I had no choice but to 'accept' what was happening. That was scary in itself! But, in the long run I think you have no choice. The symptoms will still happen, whether you're living in abject fear or not. I chose to try really hard and let go of the fear, because if anything it would probably help matters.

I reminded myself a lot during those times that this stuff had happened before, and I still lived. So, if it's something familiar to me, I just ride it out as best I can - call a family member for help if I really need it. If something new happens and I'm stuck with no help, I would still call an ambulance though. I had to do that maybe a couple of months ago when nobody could come to help me and I had this new kind of nerve pain. Turned out I had a raging fever by the time the ambulance got here and I was in a pretty abysmal state.

Wishing you all the best Lieze :-) I think it might just take time for you to come to terms with the illness. It is unpredicatable and sometimes truly awful. It is possible to not be so scared of it though.

p.s. distraction is a great tool, I agree!

[Guest tearose]

After some years of learning how to manage all sorts of unusual, painful, scary or weird symptoms I realized that I needed to save as much energy as possible. Getting myself actively worried would only tire me. So, even now, if I have some new symptoms pop up, I try to work them out. If I have a new and severe pain, I will immediately respond differently and call the doctor.

I also realized that the ER doesn't understand what we struggle with and going there will only get you a diagnosis that is not correct!

[futurehope]

How do I not totally freak out if I'm feeling badly?

Well, it's so common for me to feel badly, sometimes worst in the AM or after sleeping, that I'm used to it. It's been many years since I've felt normal like I used to feel, so unless something is seriously out of the ordinary for me, I tend to "go with the flow". It is not uncommon for me to look and feel terrible in the AM. In my case, it does not necessarily mean I'm going to have a bad rest of the day. I've had some days where I looked and felt terrible in the AM, and then went on to have a good day later.

So, I guess what I'm saying is, I've learned to live with the unpredictability. I do not have overly high expectations because I'm aware that the "present feelings" are not necessarily reflective of the rest of the day or the rest of my life.

[hilbiligrl]

How do I not totally freak out if I'm feeling badly?

Well, it's so common for me to feel badly, sometimes worst in the AM or after sleeping, that I'm used to it. It's been many years since I've felt normal like I used to feel, so unless something is seriously out of the ordinary for me, I tend to "go with the flow". It is not uncommon for me to look and feel terrible in the AM. In my case, it does not necessarily mean I'm going to have a bad rest of the day. I've had some days where I looked and felt terrible in the AM, and then went on to have a good day later.

So, I guess what I'm saying is, I've learned to live with the unpredictability. I do not have overly high expectations because I'm aware that the "present feelings" are not necessarily reflective of the rest of the day or the rest of my life.

lieze ~ i sent you pm, and hope you are having a better evening.

futurehope ~

I was so glad (but not glad for you) to see someone else with this symptom i seem to have had forever. Like you, my morning times are aweful, and most often it is the worse part of the day and lasts sometimes till 2 or 3 pm. I also feel so aweful upon waking; its is if I were fighting this battle in my sleep and i wake up terribly exhausted, drained and the feeling of 'being stomped on all over all night long" (kinda weird, but that's what popped in my mind). Sometimes i have to nap on and off through it and sometimes i have to lay for an hour or two. Glad you shared that.

hilbiligrl

[samannran]

Education about your illness is key, in my opinion. Spend time researching your illness during times when your body will let you. With PAF, I don't have many good days & completely understand worrying about all the symptoms. Worry is normal, but make sure it doesn't consume your life. Hope you feel better soon.

[Lovebug]

Hi Lieze!

I hope to give you some help with this response. The way you describe waking up is exactly how I feel when I'm having my "dot" (see my response to your other thread about PMS). But dealing with these symptoms is hard even when knowing what they are. This is what I do to deal: if they are severe and I've felt them before, I'm more at ease and just tell myself that I will get through it just like before. I also use a heating pad and sometimes sleep on it (lowest setting). If it is a "new" symptom or chest pain (I can't get over that one) then I just rationalize that it is my Dys making me feel that way. I also pray and if I'm too anxious to do that, I just repeat "Jesus" over and over and think about Him...all the he suffered through just for little ole me (He really does know how we feel)...and my symptoms gradually subside. I suppose it's a form of meditation. However, never ignore chest pain & go to the ER if it isn't typical to what you may normally feel.

If I'm just feeling bad during the day, I try to rest and do something I'm absolutely passionate about. For example, my husband & I built a house 3 years ago and I can't wait to build my next one. I look through houseplans trying to find my dream home. This is not only time consuming, but very distracting. Also, don't forget your meds (if you have them). My wonderful doctor & NP gave me an emergency plan for when I have these type of episodes.

Don't worry, I think everyone with this disease started out as a hypochondriac, LOL! Please keep the faith and I so hope you start feeling better!