It seems like tough and lonely work!

Hi everyone, I'm a 45 year old single Dad and I get very little help with bringing up my two sons aged 16 and 13. The boys themselves know that Dad is unwell and they also know that stress makes me sicker and so on the whole they help me more than they hinder. I have three jobs that I work at mostly from home but without these three jobs I can't make ends meet. I was diagnosed with Dilated Cardiomyopathy with the additional complication of permanent left bundle branch block about six years ago - almost two years ago I was fitted with a Medtronic Bi-ventricular pacer and I'm also prescribed the usual Ramipril, Bisoprolol etc. However, during the last two years I've put on 40 lbs in weight! I do have a sweet tooth put I am only eating perhaps a third of the sweets and "bad stuff" that I used to, I also eat small portions and avoid fatty foods. Needless to say I don't smoke. The bottom line is that I am finding life really tough, I struggle to sleep, I get breathless so easily and my exercise capability is very low. I am depressed and receive some counselling but this just seems to make me feel worse. I hate the way I look and having always been fit pre-illness I am so frustrated that the pacer hasn't really improved things for me. I can't lose any weight, I'm utterly exhausted all the time and feel like I'm sinking. I feel so lonely a lot of the time and don't have much in the way of family. My implant wound is still sore (although not infected) and I'm scared that things are going badly downhill. Of course I've had a number of adjustments (including the problem where the pacer locks your pulse to 72 beats and won't respond to load), my doctor is rather fatalistic and not much comfort. I feel fat, worn out and finished and every day is the same - I try so hard to be upbeat but with everything being like it is and also being queasy and getting a lot of pain as well I feel really low - anyone got any tips?

8 Comments

Hello Freebird22

by maryanne - 2008-04-26 02:04:31

I loved Pacergirl's response to you ...and I would echo her suggestions. Medications can be a big cause for weight gain especially if you are already finding your are living a seditary life style.

I having raised three children I know what you are experiencing....get them to help....but you need to help yourself as well....if they see you making a conserted effort to make change they might be more eager to help out.....

You have made the right step in reaching out to talk....and I hope you continue to do so.....I gather your jobs at home are all computer based....again if that is the case that doesn't help with improving your activity level.....here's a suggesition....have your ever heard of those excercise balls....replace your computer chair with one of those.....it not only helps correct your posture but works on your core muscles tightening your abdominal muscles....there are many many excercises your can do on that ball that can help get your into shape.....so you can be working out while you are working....sounds pretty good to me....good luck....stay in contact.....and pick up an apple instead of a pastery...cheers!!! :) Mary Anne

keep going

by agneslaney - 2008-04-26 05:04:23

I know that at this moment you are low and depressed which makes you feel absolutely useless and worthless
but stick in there. Two boys at the ages they are are real handfuls (talking from experience) and with your health the way it is you can't really join in with them which makes you feel more depressed. I have a dual pacemaker because of complete heart block after many open heart surgeries, due to a problem with the first one I ending up with 4 within 3 years. I gained weight due to not being able to move around a lot. I went to a group (during the morning ) called Simming World and yes you would be amazed there were a few men there (changing world we're in) they had a fantastic way of losing wait while enjoying lots of food and not rabbit food like lettuce. If you are into computers look them up, I lost 3 stone. Can you see another doctor who can maybe help you more or speak to your pacemaker technician and see if anything can be done to help you. I have had mine adjusted a few times and now it kicks in earlier to help me do more energetic things. DO'NT be a defeatist fight for your life.
Agnes

Getting Ready

by LindaScarberry - 2008-04-26 07:04:47

Hi All, it's Linda again... now that I have found this site I've read many postings about people ICD's shocking them and not feeling well. I'm starting to get really scared to have this done. It doesn't sound like you feel that much better after having the ICD implanted. Plus you run the risk of getting zapped unnecessarily. Is it as bad as it sounds or am I getting cold feet? I have LBBB with an EF of 30; I'm an active 53 year old woman. I so want to have energy again and not have this constant shortness of breath and coughing!

Thanks for your help,
linda

A FEW SUGGESTIONS

by peter - 2008-04-26 07:04:55

You should loose that excess weight as soon as possible. There are no secrets or magic diets. You simply have to eat less untill you loose on average 2 pound a week. The weight loss rate will fall off as your body gets used to a lower calorie food intake. If this happens reduce your food intake until you still loose weight and reach your ideal body mass index. You must then not go back to eating the same quatities of food ever again. Excess weight is a strain on the heart and in your case is life threatening.Keep telling yourself that diets dont work, only a permanent change in the quantity of food you eat does. I would also consider reducing your workload as it is obviously too much of a strain on your body plus having 3 jobs and 2 children to look after on your own. You may be able to get yourself registered as disabled and claim benefits instead, money is not everything.I live in the UK and have the same pacemaker as you with cardiomyopathy My ill health has cost me an absolute fortune but at least I am still alive.Its time for me to go to work at the Hospice so cheerio for now. Remember life is full of surprises

Keep going

by bini - 2008-04-26 07:04:57

I agree with everybody's suggestions. It is good that you found this site, everyone is so helpful!
Anyway, it's hard to cope with things when your health drastically decreases. I used to be very active before, but four years ago I started fainting almost daily. I can't drive and can't work. I have a PM now, but I am still fainting the same ammount. I get depressed at times...but try to live my days as much as I can.
I am so sorry to hear about your situation, but your boys are lucky bc you sound like an AMAZING dad!
If you ever need someone to talk too, please feel free to private message me anytime!

Christine

Hang in there!!

by shawna123 - 2008-04-26 09:04:01

Hello! It's easy to feel down. I've had 2 heart attacks and am only 37 years old. I helped to raise my 2 teenage stepsons (they are both in the Navy with one serving in Iraq with the Army another issue in itself) and have my own 4 year old counting on me, now. My best advice is for you to get out of the house and work in the workplace. I was at home feeling sorry for myself, too. Two heart attacks by age 36 with a ICD implanted and dizzy spells happening all the time, I was a mess. But, when I got out into public, I don't have time to feel sorry for myself. Oh, don't get me wrong, there are moments when I still fall back into it, but I'm really trying to be thankful for every day I have. I gained a lot of weight when I was at home, too. It's easy to run to the fridge when you are sitting at your computer.

Another thing that really helped me was cardiac rehabilitation. Most insurance company's cover rehab. If not, perhaps you can work something out with the rehab facility at your local hospital. It really helped give me my confidence back not to mention a little bit of my waistline.

Hope you are feeling better, soon. Teenagers are soooooo challenging. Believe me, they come around after they get out on their own. :)

Hello Freebird22

by pacergirl - 2008-04-26 10:04:39

I love your name... how very cool. :-)
Hi, I am Pacergirl and I am glad to know you. Welcome.

Now any parent with 2 teens is already under some strain. When you add 3 jobs, even if they are at home... it adds to the stress. Stress can do many things to our health. It can cause weight gain as well as a host of other things. One of your concerns seems to be the weight gain and it should be.

There are some other things other than eating that possibly has caused you to gain. The stress, the snacks and inactivity. I think you may have overlooked the most important thing of all that could cause the weight gain.... THE MEDICATIONS! I am a firm believer that medications can cause us to retain fluids and cause the weight to go up. Puts a strain on our entire bodies.

Research the meds, have some salad and stop the junk/sweet stuff. It is not a comfort to you if it makes your heart work harder. Now.... If you don't buy it (sweets) you can not eat it! Shop better, ask your Dr. for a nutritionist, they love to help with food choices. One visit should do it.

Now most important thing to do is... What you have already done.... you have reached out to others in the same boat that have the same problems. Draw from our strength as long as needed.... before you know it you will be advising us!
Blessing,
Pacergirl

You can do it!

by Swedeheart - 2008-04-27 02:04:08

Hello,

I am relatively new to the pacemaker world, I am on day 62 since implant. I have had my own little trials to bear, but I know I will eventually get through it.

Lots of good information here. It is difficult at the best of times to be a single parent ~ you have found this site and you will find support and friendship. The chat room can be a big help sometimes. I know when I first got my PM I couldn't sleep and would often pass the time in the chat room. It helped. You might also see if you can find a local support group so you can actually see folks face to face if you have the time and can leave your kids to attend.

I know since I have been on the toprol for the last 3 years I have gained weight! When we feel poorly we don't move as much or get the exercise we need. It isn't your fault and don't let anyone make you feel it is. We all face wanting to eat "goodies" Geez, just watch TV and the commercials about the junk food makes us all salivate! Try breaking off with something that might work inbetween. When I crave something sweet, I may still get the calories, but I try to choose a sweet fruit I really like so I at least get some nutrition out of the deal!

You need to be strong for your boys. You are their role model and you want to set a good example to them about what to eat and how you face your trials in life. We are not perfect and we all make mistakes, but we love our children and usually will make huge sacrifices for them (as you clearly are holding down so many jobs!). So, next time you are feeling gloomy think about your wonderful boys and how you want to be there with them to see them grow into successful adults.

You have made the first big step. You are recognizing things you want to do and need to do in order to improve your life and health. Then, press the doctors to help you achieve this! If your doctor doesn't give you a good prognosis look for another who can be more positive. I say this because my step-sister has battled lymphoma for 25 years. She knew something was seriously wrong when she first came down with it, and it took her 9 doctors before they figured out the problem! Then she had to battle her cancer. She has lost her hair several times due to chemotherapy and such, but has gone back into remission 3 times. She stuck it out and raised her children. She now has grandkids. :)

Good luck. You are not alone. We all have our down days, it is normal to feel this way when our health is at risk. But there are folks who care and will help.

Keep us all posted. We want to know how you are doing!

Swedeheart

You know you're wired when...

Intel inside is your motto.

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I'm 44, active and have had my device for two years. I love it as I can run again and enjoy working out without feeling like I'm an old man.