I thought I could live like a normal person!

Pheonix

New member
Hi,

It looks like I thought wrong!

(I'm french, forgive my spelling)

I have been an HHr since age 4. Palmar, plantar and axilary. At age 26, it was «suicide or surgery» for me. At that point, I hadn't lived at all. No childhood, no teenage years filled with all the normal things teens do. I was a prisoner of my own body. Until ETS.

My body took a while to react to the surgery, so I felt «normal» for a few weeks. But I didn't know how to do things! It was like getting out of jail after 20 years inside. I didn't even make the most of it, because I had no idea what to do, how to act like normal people. I was used to ALWAYS hide, be invisible, and avoid touching and being touched. And that's what I did...with a dry body:eek:

After a while, I started getting CS and GS. So I had to adapt to the new embarasing situations. But I had the use of my hands, and that alone was worth a lot. It meant living. That is also when I have met a guy who became my boyfriend. And that's when I thought wrong!!

I was happy to get this new start and I was in a rush to catch up with others from my age group. They had a spouse, children, a decent job and a house. I wanted it all! So, yes, I got the job (Nowhere near «decent», but I was able to work!), then I got the guy, and the child and soon after, the house.

I still had to deal with HH/side effects, while trying to catch up with life. It was a lot to deal with. I had no clue how to act socially, at work and with my guy's family. I wasn't so sure how to handle a relationship with a man actually. Every little thing was new to me and I needed time to adjust. It was overwhelming at times. He didn't get that, and I didn't get that he wasn't getting it! I didn't know my own self and I had nearly no life experience to rely on to fix things.

So, we were having some problems. Then he left me during the last month of pregnancy. Long story short, after 10 years, he suggested we gave it another try. Our child wasn't aware of it, just in case it didn't work out. I had been single all this time, and I would have done anything for my child. So I agreed. We started trying to patch things up.

But I was still figuring out who I was, what I wanted for my life. I had rushed into motherhood and into getting a «decent job» and all. I also worked at getting to the point where I was financially secure (just enough) and could provide for my child. That alone took long enough. I couldn't focus 100% on getting «normal» and needed some time to get back into the relationship and its requirements. But...

He still didn't get it, and I still didn't get that he wasn't getting it! And I am not dumb, I am fairly intelligent:bigsmile: Anyway, like I said...being in prison for over 20 years has its conséquences!

So, I naively thought we had a fair chance, because I am patient with others and I thought it was only a matter of time until we got used to each other again. I invested a lot of time making a genuine effort to improve and act normally. I was getting mentally ready for the summer vacation, all three of us, and maybe have a talk with our child and take the relationship a step further. But he had lost all interest due to his impatience. He wanted me to get better «now». So...

As all this was going on in my head, he had his eye on a younger, non-HHr . He didn't end it with me while he was taking her out and trying to figure out if things would work with her! Gees! So...

He left me again, after I confronted him. I had my doubts, signs were there. See? I'm not THAT dumb:giggle:

So, NOW I know what went wrong. I had HH, and it had shapped me into a person I didn't want to be, and with whom he didn't want to live. A person he would never have the ability to understand and respect. He wanted to instantly be with the person he thought I could become without having to wait for her to show up. A non-HHr cannot understand what it's like to fight with your own mind in order to become another person, somebody you really want to be. It takes a LOT of patience.

I have forgiven myself for my strange behavior from the past. I am now a lot more patient with myself. It will probably take me the rest of my days to figure things out. But that's ok. I know I will sometimes lose my temper and I know I will probably cry at times, from frustration. But, I only have one life. I won't spend it feeling guilty about not being able to make it work with somebody like him. I deserve a lot more respect and understanding. I have finally understood that I never needed him in my life. He was always a source of anxiety and he was destructive, instead of lifting me up and supporting me.

I am thankful for my child though. An angel! So that's what I chose to salvage from that wreck my «normal» life has been after ETS. I will focus on both of us. I will never be able to experience life as most people do. But then, others also have différences that prevent them from being «normal». What is «normal», anyway? Normal is what is the norm for ME. Sweating is normal for me, and although I hate it more than anything else, that's MY life, MY time on earth. I will try to make the most of it, the best I know how, with my child.

So I guess my question would be: Has anybody else tried to have a normal life being an HHr? Did it work?
 

CharlesN

Well-known member
I think your issues go beyond HH. Perhaps HH was a contributor or even the root cause of the other mental/psychological issues, but I think that it has become more and maybe you should seek some professional help? These forums are great for support and anecdotal advice on treatment options - but a professional might be able to do more. Or maybe not - honestly I don't know as I've never seen one even though at times I felt I could have and in retrospect should have.

I probably have a milder case of HH than many on here. Mostly hands and feet. Dripping wet only on occasion - like at the doctors as a 14 year old where my hands and feet were literally dripping and the doctor said, "I have never seen that before". That was the sum of his input. lol I tried botox in my early 30s but it was largely ineffective. But in spite of that and not discovering ionto until I was 42. I have lived about as normal and mundane and average a life as most. 44, 2 kids, wife, married 16 years, own a house, worked in a some form of a regular IT job since co-op in University in 1989 at IBM. Play sports, go to the gym, read, eat out, go to clubs (when I was younger). Tried soft drugs socially, drank to excess at times as a coping mechanism for HH. Drank to excess at times just because. Gave up alcohol eventually completely because I can't justify the calories. Simple as that - have never once looked back and thought - man I wish I could drink. And when I reach my fitness goals if I feel I can spare the calories I will have a drink with my friends if I want one. Smoked a very little as a dumb kid - got lucky and the habit never stuck. Did things I regret, did things I fondly remember. Never really let HH hold me back from doing what I wanted. My confidence was a lot less than it could've been, as I've discovered a lot more self-esteem and confidence in myself since I got in to shape and got ionto working. But on average, every single person on this planet has issues. Some seem far less significant than HH (to us) some seem far worse. So normal is actually not having a perfect life with no HH or other issues. I'd take HH over a lot of other ailments I have seen people afflicted with.

Since starting Ionto about 17 months ago my hands have been worry free. I do have some compensatory sweating now on occasion (head, face, lower back and sometimes full body), but I live with it and perhaps due to my advanced age and increased confidence simply don't give a sheet about it as much. I do have it in the back of my mind as I have to plan and set aside the time to do the ionto treatments each week, but I just turn on a movie and relax and it's over before I know it.

Biggest thing I've noticed since Ionto is how many people have at least mild clammy to wet hands. In that past I was too consumed with my own state to notice others. Now I see it is super common and I also notice that as the person with the dry hand - I could not for a million dollars go back and tell you which person had sweaty hands and which did not. Literally makes not a bit of difference. How is this important - it is important in the sense that we HH sufferers with awareness of HH are far more likely to notice this about ourselves and think it matters than it actually does. We have anxiety which of course exacerbates the sweatiness so it is a cycle and self-fulfilling prophecy. Truth is, we should be more concerned about the important things about ourselves. The stuff people will take notice of - our fitness, our intellect, our sense of humour, our personality. I meet hundreds of people each year at various gatherings and social events. I can't remember one single person that had sweaty hands or bad breath or even which ones were the amputees that needed a fist bump instead of a shake. But I do recall some damn funny and nice people as well as some douchebag losers and some really smart people that made me think.

I'm sorry you feel you can't live a normal life due to HH. That really sucks and I feel for you. I hope you do seek some help and maybe find a way to enjoy life and the blessing of a child and recognize that the happier you are, the better a parent you can be. And don't give up on finding someone that gets you. We are all flawed and imperfect. You just need to find someone who fits and loves you for you exactly the way you are just like your son or daughter does... and I hope you do.

Good luck,
 

tiago1995

Active member
Wow, CharlesN, that's some of the best advice I've read on here so far. Thanks!

And to add onto the topic: I'm only 20 years old but I think I've lived a normal life this far, with HH of the palms mainly, which are pretty much always humid. Even though I've been offered to have the surgery more than once, I always refused thinking I could end up with a bigger problem than I had before/still have. However I still somewhat consider it to this day, although I don't want to risk it as of now. Reading testimonials like this one help me believe I am ''normal'' again and don't need surgery as in reality there's no such thing as normality in this world.
 
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hyp-hi

Well-known member
Great post! Thank you for sharing all of that. By the way, I love that term "non-HHr". You are right, it is hard to live a normal life with this condition. At this point in my life, early 30s, I have kind of accepted the lifestyle that comes with having HH. It is hard to push yourself to be in situations where you know it will be an issue or could lead to lot of discomfort or embarrassment. Sure things could be better, but as you mentioned, everyone has their own issues to deal with and we all just have to make the best of it.
 

Pheonix

New member
Thanks for the replies! It helps to know some of us are not sweaty enough to be deprived of a normal life. I'm truly happy for you :)

My sister seems to have a similar case of HH as yours, CharlesN. She always had a better chance at normality, and she experienced life a lot differently than I did. She wasn't dripping, or rarely. I was so happy for her, growing up. My baby sister!

It looks like I forgot to mention that my hands/feet and pits were dripping about 80% of the time and wet the rest of time, before ETS. In gradeschool, kids didn't want to touch me because of my hands. I could not study without damaging school books. In highschool, my teachers warned me to stop «ruining» school proprety or else I would have to pay for the books! When I was riding the subway as an adult, water was driping down the poles and people were staring at me.

Post ETS, my hands and feet still get wet sometimes, and drip on occasion. I still can't drive because I lose control of the stearing wheel. I can't wear sandals in the summer because my feet still sweat to the point of driping and slip out of the shoes. It takes me three times the normal time to build something using power tools because I have to stop and wait whenever my hands get too wet, not to mention the danger. That type of things. A LOT of frustrations! So it's not like I feel I can't have a normal life...I literaly can't. It is physically impossible!

That's not easy to bare for a non-HHr. People don't get how it feels inside and most don't have the patience, because yes, it's «only a little sweat». So that's why I was saying my troubles were caused by HH. No HH, no problems for me!

You are absolutely right. Despite all the sh*** things HH has brought into my life, I wouldn't trade it for something else. It's a matter of doing the best I can with the cards life has given me. I'm a positive person. So I see all the pain around me and I feel for those who (I assume) are in worse situations than I am. Only ONE life to live, make the best of it!

So thanks for the kind words and the replies people. I feel less alone going through this rough time. I do hope to find a nice guy ;) I'll be looking for an HHr this time!
 

Hfive

New member
Hi all,

I was really sorry for you on the lecture of your post. Guess CharlesN said it all ;)

I live in France as well and grew up with mainly hand / underarm problems and strangely, It has evolved into a generalized HH now which is kind of problematic when you get these rushes of sweat rollin' down your forehead in social situations and you can' t hide that.

As a general rule, I try to keep forcing myself to socialize and even put myself in these 'phobic' situations from time to time to try and get used to them, fighting to not find myself stuck in some big phobia because of course, we all know the downward spiral caused by our anxiety and sweating. When I do have a big sweating problem in social situations, I feel a bit mad, and down for a couple of days. Then I say to myself 'get back on track'. I live it as a kind of challenge, trying to make the best of it (and better) because as CharlesN said, everyone has their own problems that we are not always aware of.

I sweat a lot as soon as the temperature gets over 23/24° and this kind of thing we can adapt to. But the anxiety sweating is a real problem and working on self-confidence is the most important thing. People will see that you're not feeling good about yourself before even noticing that you sweat and we focus too much on the later part.

Of course, I come and have a look from time to time just to see if i'm not missing anything new (treatment wise) and generally it's not a very positive sign when I'm hanging around these forums so I guess I won't stay too long :)

To answer your question directly, yes I've tried to live a 'normal' life, and I'm still trying and determined as hell! I'm actually trying to make the life much better than normal... :bigsmile:
 
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