On and Off

[ThomasB]

Hi, this is Thomas. I'm nineteen years old and though I've been to this site for about a year now, I've never posted in this young people section.

I was just wondering if anyone else has had similar difficulties to the ones I've been having for the past two years or so. I read the posts in the Ask HCMA section to see if anyone brings up similar concerns but as most of the people posting there are thirty to forty years older than me I'm not sure how valuable reading about their situations is to me. Anyway...

I've got this real problem with on/off days. Thing is I don't know if it's just an emotional/psychological thing (I'm a chronic worrier and more than a little paranoid) or if it's an HCM thing. One day I'll be full of energy, optimistic, and pretty much the life of the party. The next day I'll be the opposite: I feel down, my thoughts seem slower, I want to avoid other people. It's quite miserable since there don't seem to be any definable factors affecting the way I feel on a given day. So let's say I'm ina great mood so I tell friends that I want to hang out sometime in the future. Then when we actually get together I feel terrible:withdrawn, sleepy, mind cloudy. I never really did much with people before this started happening- I do even less now. I don't always feel bad but I never know whether I will or not.

The main problem is, however, that I really enjoy doing theatre and I've been considering it as a career. I don't really have any other options that jump out at me and I have to figure out my major at college very soon. Unfortuanetly this bipolar on/off thing dramatically affects my performances. One day I'll be rehearsing and it will be spot on the next it will be sloppy and awful, my timing is off, etc. I'll start to wonder if I can actually pursue theatre as a career if I'm so inconsistent. Then I'll have a really good rehearsal. The highs or so high and the lows so low I don't know what to do. People have told me that I'm very good and I'll admit that I agree with them. But just recently my director commented on how I seem different from one rehearsal to another. He basically said "whatever you were doing last rehearsal- that was good, keep doing that". Well, that's much, much easier said than done.

So I'm going crazy right now. Do I follow my dreams and all that malarkey or do I go with a career that's more conservative where it doesn't depend so much on how I feel from day to day. My mom says I should do the theatre because I'll regret it later, but I'm so hard on myself when it doesn't go well I don't know if I'll enjoy myself. But I agree that thirty years from now if I don't do it I'll wonder what would have happened if I did go into drama.

Anyway, that's my dilemma. Just wondering if anyone can relate. Maybe not specifically with the theatre aspect but the drastic shifts in mood and competency.

Thanks for your time.

[Cynaburst]

Thomas - Have you talked to a doctor about how you feel? There are several medications that might help even you out, so that you are functioning at an even keel every day. I would suggest talking to your GP, or going to your university health center, and asking them about taking something to help your mood. Make sure to tell them that you are also a heart patient with HCM, so you want to avoid any stimulants, and they should be sure to make sure that whatever they prescribe for you is safe.

It seems to me that what is going on with you is rooted in your brain chemistry....I don't think that it is triggered by your HCM. I have been really helped by some of these meds in the past. It can make a huge difference in your life. Don't be afraid to ask for help. You don't want to make a huge decision that will impact the rest of your life basing it on something that might not be an issue for you at all once you get on the right medications.

Good luck.

Cynthia


(I know that I am twice your age, but I still feel like I am 20 and I remember how it feels!)

[tommysgirl]

I'm not a doctor, but I do work side by side them daily with pt's. We see many people with the same type of symptoms. First off you have HCM, this a chronic disease that there is no cure for. That is pretty "heavy" for anyone to deal with, no matter the age. The HCM can make you have good and bad days depending on the daily symptoms.

It is also very common for people with chronic disease to get depressed or anxious. You mentioned bipolar, have you been diagnosed with this? You really should see a family doctor and discuss these mood swings. There are medications out there to help level the brain chemical imbalance that are safe for HCM pt's, that will allow you to persue your dream and "Be good at it" Much luck to you!

God Bless!
Sherry

[ThomasB]

Thanks for responding.

I'm sure I'm not bipolar- it's not that bad. But there is a noticeable difference from one day to the next in how I feel and it does affect my interactions with others as well as (and the director seemed to confirm it) my work in shows.

So has anyone else noticed an inconsistency in their work? I guess theatre is a little different than other jobs, but maybe not something like teaching. It really destroys your confidence if you never know whether you will be able to maintain a certain level of quality in what you love to do.

Maybe I suffer from depression or something similar but I have to admit that I'm absolutely terrified of anti-depressants and other drugs like them.

I mean, just type in the name of any of the big brands and there'll be a ton of sites about lawsuits, etc.

I do, of course, feel the typical symptoms of HCM and I thought maybe just the fact that I was tired was affecting my performances but I don't feel like that is a good enough answer. Besides even if I haven't done anything active for a week or so I still can come in after a break and have an off rehearsal (with bad timing, sluggish responses, etc.) and then the next day have the opposite.

I realize that not everyone feels good every day (even people without HCM) but there's still something different about me as compared to my healthier friends.

[purple_ness1]

Heya

im round your age im 18 maybe you suffering from depression if you dont like anti-depressants try going to a counselor, that might make you feel better.
I know what u mean i use to feel the same way ,one day i was happy as happy can be and the next i couldent be bothed with any think,i use to suffer from depression.

im not in to drama but i walk in retail and i might as well work in drama how happy i have to act to everyone even the rude as people but stick with ur drama. if you like drama and thats what you wont to do ,do it! you sound like your good at it and at least you can say i tryed it if you dont like it.if thats what your made to do then your find a-way around your bad days. things always work out. its fate

take care
*margi

PM if u like

[Pam Alexson]

Thomas you have already gotten some great comments and I too will chime in....

I am not 19 but my youngest child just left 19 and turned 20. He does not have HCM but his mother ; me does. This effects his moods tremendously. Even though he is a separate individual , it is tough on him because he sees me daily and the private fluctuation of how HCM effects me . I hide a lot because he is so effected emotionally.

Because you are the one with Hcm, you are directly effected by the fluctuations of how you feel on a daily basis. A chonic illness very much effects mood and emotional stability. Medication is always an option but counseling is an excellent spring board to get the talk therapy going in the right direction.. sometimes we just need to hear our stories as we relay them to someone objective and someone who can give us good honest feedback.. Through counseling we often arrive at most positive outcomes, mostly on our own as we talk through it and are guided by an excellent counselor. A good counselor lets us do most of the work and find our own answers that are reality based and appropriate for us.

You have a passion and I am all for following ones passion. I worked as a nurse and it has always been rewarding and put the bread on the table very adequately. After getting very sick I was left to follow my passion.... painting. This has allowed me to pick and choose my stress from here on out , now painting is not stressful for me , it allows me to escape.

You have many decisions to make in life as you are young and you need to support yourself and also follow your dreams. You also have to factor in the HCM. NOT LET IT overide or control you. I think a counselor could help you very nicely get on the path that will strike a balance, let you follow your dreams and lead to the best choice for Thomas.

It is toughest being 19 and not having a glimpse into ones tangible future. You do however have a hand in that not too distant future. What's different between you and us older individuals is time and experience trial and error. We have had the time to do a lot; some trial and error and corrections needed, and to see that much of our dreams can come true and we can put the bread on the table as well.

From your post I can tell that you have a solid base, you are very articulate and are in touch with how YOU feel. This tells me that you are part way there. Keep talking and sharing and working through these issues and you WILL arrive.

FYI: Did you know that some of the most talented people in life have suffered from diagnosed bi-polar disorder? Yes indeed, actors musicians , artists etc. etc.


I have some real positive feelings that you will have a very fine future no matter what YOU decide.

Pam

[marlenefincherRN]

Well...hmmm
I would like to answer this the best I know how......Somtimes the most talented people are very very in tune with their bodies...we know ourselves well and when we fell right in our bodies..ie heart feels ok electrolytes are in check ...then we are great...we have had enough rest and are bodies are ok then look out world...We wake up feeling like life is wonderful..and you could not wipe the smile off our face...our outlook is great and we give everything our all.......on the other hand if we do this for a few days and then we wake up and our electrolytes are not in sync and maybe we have not had the best sleep and we are tired and our hearts are kinda having to work harder to get us where we are going...then it effects our emotions because even if we dont realize it deep in our mind we are aware that today is different ..that we are more tired and we dont really want to fool with people and we just need rest.....I have found that the most important thing to do is get enough rest...eat at least 3 times a day ..avoid carbohydrates as they give us the sugar rushes then the sugars pit falls....you know what I mean like you go to breakfast and eat a huge bowl of grits and your carbs turn to sugars and shoot your sugar level up so you dart around then in 2 hours the sugars wear off and your energy level plumits..so I try to avoid most simple carbs...complex carbs stay with you longer....any way....get sleep avoid carbs..and remember hydration for us is a must...if you stay very active one day and it is 98 out side and you get just a bit dehydrated you will feel like crap the next day ..so drink fluids and eat a bannana for the potassium...my EP doctor said he see's more people who feel like crap when there potassium drops a little ..I feel like crap if mine drops down just a little bit...so remember to keep the potassium in your diet...drink fluids and see if that helps shockingly I think it will....and if it does not then think about drugs and docs...not that there is anything wrong with either..I was only trying to pass on what I have learned ......hope all goes well....great luck to you....and follow your dream ..........Marlene:D

[Sarah]

the drastic swings you describe are more likely to be due to other things and not directly HCM. HCM does cause good days and bad days, but in things like chest pain, tachycardia, palpitations, etc, and not everything else unless the stress of having HCM is affecting your ability to get through a day.

take a look at what you are eating on good days vs. bad days --my sister has struggled with something similar to what you report (she does not have HCM) and she has found that she needs a high protein diet, no caffiene, and lots of exercise to "even" her out. sugar can cause the mood swings you report, too.

if diet and excercise don't help at all, you may want to think about at least trying medication. while there are serious risks to anti-depressants, if you take them under a doctor's care and stop them at the first sign of trouble, they are not the worst things in the world if they did help you after all. sometimes people just need to take them for a short while to "retrain" their brains and other people need them long term. everyone is different.

follow your dreams.

[Toogoofy317]

I guess I tend to differ with most when they are telling you it may be more mental than HCM. I've been on this board since the ripe old age of 21 and just turned 26 last week! Hope that is not too old for you?

But, I've experienced the same exact high's and low's you are experiencing. When I was diagnosed I was a performer at Disney not fur though. My boss's even would comment that they could tell how my heart was acting just by my show. What you are saying describe's me exactly and I have shied away from making future plans with my friends.

Many people told me in the beginning that maybe it was depression or that I had a psychological problem. But, these things really didn't happen until after diagnosis and a few months down the road from that. So, it really wasn't sudden and eventually there were more bad than good. I guess on the positive note people really took a notice and realized it wasn't psychological it was physical but they couldn't explain exactly why. I even tried the anti-depressants and for me (no MD advice here) I had at the least no help from them and at the worst the cause of serious problems (LOOOONG story).

So, I guess what I'm saying is yes I know EXACTLY how you feel! I always tell people that the worst part is the inconsistency on how I feel. One day I can cycle 25 miles the next can't get out of bed!

hope this helps

Mary S.

[Pam Alexson]

The important thing we have to understand here with regards to a chonic illness is that like any traumatic event in life , we are all effected differently by the disease and what it means or changes personnally for each of us. I say trauma because yes when we first heard the news whether or not there were others in our lives before us or not it was traumatic to first hear the words HCM CONFIRMED.

WE all have our own set nervous systems and our neurotransmitters are relavant to ALL the experiences we have each had in our own personal lives. We are all similar yet unique therefore. It is with this that each of us will respond uniqeuly to every situation / exposure/occurrence. It is valid that with each encounter our paths are forever changed and uniqely.

The way I can best describe it is with this parallel: A child is born and growing up as well as any child. This child is traumatized by any one experience say for example physical abuse. The childs neurological system responds to the event , pathways of communication are formed and grooved out so to speak that, had that experience not occurred may have never formed or at least never in that exact pattern. One can safely correlate that this individual is now different from how it would have been had this experience not occurred. Also this childs brain chemistry is different too and geared up to respond to any similar events that may occur in life.

If this makes sence then you can see that the big picture really is very BIG indeed . I have described one raw experience on a new fresh being. WE are eons past that one raw event and have added many many more experiences to our repetoire.

If an event in our lives is effecting how we deal and disturbing how we function, then it needs to be investigated. As adults we learn to unfortunately carry multitudes of junk with us and often it becomes toxic to us and those around us. We need to learn through whatever method works best, be it therapy , medication , meditatation, etc. etc. how to manage and not to carry the BIG bag of stuff with us. After awhile if we do not put it in its proper place and perspective, learn to cope it is compounded with more and more and in time can become too much to sort through.

Each experience in life has to be dealt with and we are cable of recovering from these experiences given the right tools( we are not born with tools included) we need to learn about POSITIVE methods , tried and true. An experience is an experience and an opportunity for positive growth or negative outcomes, OUR CHOICE.

I believe the human race is mostlty survivors though! So go out there and turn those lemons into leomonade.

OK I am done and I am going to get out of the hang out.

Pam