HCM and career

[TrappedIllusion]

Hi,

Just wanted to get a perspective on how ppl with HCM juggle their job and how they do or do not manage...

I've been working full-time for about 6 months now. Prior to that I was in University. Although University was definately stressful with the late nights studying and walking around campus, I still felt I could manage because I sat while studying and during lectures and because my days were not always 8 hour days.

Now I'm working full-time and well, It's weairng on me. I'm exhausted, I have to walk around quite a bit at work (even from the parking lot is quite a long walk), and I just feel completely exhauted by the time I get home. I dunno if working four days a week will help because I think it's the length of the day that wears me down (I think a 6 hour day would be better for me but is not possible). I wish I could take a nap midday.

And of course, as with most jobs, there's quite a bit of pressure at work. I feel so stressed out (which wears me down even more). I think I need to relax but it's hard with all the pressure.

Anyone else having similar issues...any good ideas on coping with stress...do most ppl end up napping right after work? What happens to me is I come home from work and I'm so hungry that I eat, and of course that ruins my whole evening (with all the post-meal symptoms I get) and I'm exhausted to begin with the next day.

I do manage to rest on the weekends though...

I guess this has turned into more of a rant...hehehe...

[Pam Alexson]

Re: HCM and career

Dear Trapped illusion,

Your post had me flashing back so much it was down right scarey..Like real post traumatic stress disorder. The course of your symptoms seem to echo mine and I am sure you will hear from many others who relate well to what you are saying.

When we were at the conference last June , Lisa had a nutritionist;( I think or a physical therapist.... someone help me out here please; I've had a lot of anesthesia since then,LOL), speak to us. A good call to start would be to get that info from her or call the HCMA office.

The carbs really do wipe one out and as Jim clarified in another post if one has fluid issues well that compounds the issue and you need to work with your doc to get that under control.

I cannot recall but I am guessing you are young? With many years ahead of most of us , we need to really get the diet in sync that will allow us to do what we must do and live as well as expected with HCM.

I remember that I would literally want and need to want to crawl under my desk at work after lunch. I was so bad by mid afternoon that I had to stay til 7 or 8pm to finish my basic work. I felt like I was literally dying at work and did not even have the energy to cry or even process what was happening. Back then I was told there was " NOTHING " wrong with me.

Fortunately, (I sat with myself, answered some questions honestly that I would ask myself, I searched within, something , someone, a voice inside me) told me to follow the course I had begun to plot. I then searched outwardly, I became an EXTREME activist in my own care and management , found out with research, support and pushing forward that this had a name and it was HCM.( and i got that confirmed)

I was not able to work in the relative months that this all took place, I was 47 and at the beginning of my career peak . A shortened day would not have worked for me or a shortened week either. It ended abruptly for me. When I had to stay home and learn to be my own nurse I learned that there were things that better managed my symptoms so I could at least get through the days.

You will find if you speak to knowledgeable HCM / doctors / nutritionists and just people who have been there, that life can be a little better when the disease is managed better. We need to help get you on tract with what may work best for your disease process. I encourage all here to help you with what worked for them and for you to seek out the experts ( Lisa will help) to creat a care path best for you.

I am still at home and even though some things are improved vs before myectomy.. HCM is what it is for me and I could not possibly ( and my doctors agree) face the gruelling pressures; physically or mentally of a job in the outside day to day world.

I hope that this part of my story can inspire you to become an EXTREME activist in finding what best works for you and your HCM.

Pam

[mtlieb]

Re: HCM and career

TrappedIllusion,

Pam wrote an excellent post but I'll throw my own two cents in here anyway.

First of all you should pat yourself on the back for doing as well as you are. You really should. Living with HCM is tough. We get up every morning, get dressed, and go about our daily lives with symptoms that would send any normal person back under the covers or to the nearest hospital. Chest pain that would frighten the pants off of anyone else is just business as usual for us HCM'ers. Pride yourself on hanging in there regardless of your symptoms and getting the job done. You're doing great.

Concerning diet, I will say that some recent changes I've made to my own diet have really helped me a lot. Specifically, I've lowered my processed-carb intake substantially, gotten rid of caffeine altogether, ditched the nutra-sweet, and am eating a lot more 'whole' foods with complex carbohydrates that don't feed the sugar-insulin cycle quite so much. I've also found that without those things I can take lower doses of meds and achieve the same effect because the sugar and caffeine aren't working against me anymore. Lower doses of meds = more energy, less depression, etc.

I also totally understand the school/work thing. I'm finishing up my degree right now in what has become a four-year program that should have been a two-year program initially. It scares the crap out of me that I'll soon be back on a full-time job when I couldn't even finish my schoolwork without a lot of difficulty. And there's a lot more flexibility in school than there is on the job. But nonetheless I do try to stay focused on my goal and get it done. Anything that gives you a reason to get up and out of bed in the morning can only be good for you.

Be good to yourself and take those naps when your body tells you it needs them.

Jim

[pblead]

Re: HCM and career

I read back through your earlier posts and most of your symptoms mirrorred mine. I am much older than you and had worked at the same, mostly sedentary job for 30 years. If I ate lunch out, walking back to the office made me so SOB that my face would turn gray. The left arm would ache and I'd be wiped out the rest of the afternoon. Unfortunately, I was not diagnosed until after I retired, but I believe that my heart could not handle both the meal and the little bit of exercise. I don't know if you have had a myectomy or septal ablation, but my ablation has greatly relieved my SOB even after meals.

[Toogoofy317]

Re: HCM and career

Over the past few years I have been battling the school and work thing and well at this point I've realized I cannot do both! I'm 26 and get so fatigued and unbearable chest pain that I was just approved for social security disability. I am hoping that it is not a long term solution just a short term one so I can get back to school and get a job that uses my mind and not my body!

I know it is probably not what you wanted to hear but sometime our bodies cannot keep up with what our mind thinks we should be doing. As all on this board knows I put up a valiant fight to keep up my demanding schedule but looking back I think it hurt me more than helped me. The only choice I really have left will be a heart transplant but with my EF being what it is I'm sure there will be a blizzard here in Orlando before I get put on the list.

Mary S.

[babygeorgie]

Re: HCM and career

well sometimes u need to sit back and look at ur sitiuation and see what the best ting would be to do i agree withn u as to go to school and do that everyone needs alitle help sometimes god bless

[delfam]

Re: HCM and career

You start your career after college is over, in your field of study at 21. You work 25 years, not knowing that a time bomb is ticking away and you find out you have HCM. This effects you way of you and changes the job you have been doing. As it did for me, I was in the accounting field and always busy this time of the year. My job was stressful for the 3 months of the year. A year ago, if was too much to deal with. After June of 2004, finding out I had HCM and having an ICD on 9/29/04, my life and career changed. Each day walking up and down the stairs at work and the stress level was too much. I needed to do something else. I have good friends to help me and changed my profession from an accountant to a real estate appraiser. This has taken away the stress and every doctor's visit, it is nice to know the see a change in me. I am thankful for being able of this happening to me. I can spend more time with my family and not worry that it will be my last. I thank my doctor's, my friends, and my family.

[Kasey]

Re: HCM and career

Im 21 and im a chef by trade, i used to do 60 to 70 hours a week. but with my hcm getting worse i am lucky to work mayby 25 a week now. and some weeks even that is to much, in the past few weeks i have worked maybe 6 hours. i cant do it, i get so exhausted, chest pains, light headed. i had to cut my hours down to try and help with this, im hoping that its only temporay untill i have my myectomy next month, but who knows. each person is different and can do more or less then the next person. do what you feel you can. if its to much your body will let you know. but dont push it.

take care of yourself.

[TrappedIllusion]

Re: HCM and career

Thanks everyone for sharing their experiences...

I'm hanging on to my job right now but I've decided I need to look for something that will work with my HCM. I pushed myself through school, but now, I'm really focussed on my HCM and feeling better, and I know a bit part of this, along with diet, is decreasing my work stress.

I've altered my diet (higher fibre foods, less sugar and less chips, more water). I've cut down to a cup of tea in the morning and no more pizza at all - pizza and fish and chips are the worst.

I'm going to see an HCM specialist for the first time in May, Dr. Wigle, so I'm getting my list of questions ready for him.

Thanks again for all the advice and help.

[Pam Alexson]

Re: HCM and career

So glad to hear some things are working and you have a plan for you and your HCM. Please keep us informed and we are here for you.

Pam