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Coming To Terms With My Life

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Hi All,

I dont know you all well, yet. I havent posted much. But everyone here is a great insipration to me. Im sorry you all have this*^%$&* condition. Its really hard to live with this. No one understands, I am sooooooooooo sick of doctors and tests. I just gave up my job on March 14th and that was really hard.

I want a glass of wine, I want to get on my horse and ride really fast up the mountain, I want to be able to carry my grandson (chubby little dude). I want to be able to have sex without having my heart wack out on me!!! Will I ever be able to?

I have a cabinet full of drugs, Toprol XL, Procardia, Nitro, Labetelol, Valium, Klonopin, Marinol, Reglan, Phenergan, Synthroid, Nexium, Vitamins, Minerals, and lets not forget the colace. (Im sure I forgot some).

How do you give up the simplest things? Im starting to get really depressed and I actually feel good symptom wise today.

So I ask you all, as I choke down my handful of evening meds, How do I come to terms with my life?

Sorry to whine, guess its my turn.

Janine :D

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Janine, so very sorry, wish I could give you stupeneous words of wisdom, but I guess I look at this like alcoholism or something. One day at a time. I was so very depressed when my life came crashing down and no one "Got" it or believed it. Every appt was agonizing because I knew something was wrong and all I got was crazy, or don't know, or here have some drugs. I wanted answers and cures! But slowly over time, I've realized some things just don't have answers or cures. The best thing that happened to me was finding this site, because at least I realized I wasn't crazy or alone. You can't get a group of people from all over the world, who've never met, that all have so many problems in common and not have it validated. It makes it real and somehow that makes it more bearable to me.

Trust me, I have serious bouts of depression and just want it all to end and I yell and scream at God and people too. But it doesn't change anything. It just is, and it uses too much of my precious energy to get upset over the problems others have dealing with my very real and complex problems. Unless my care is as subpar as it was last week end. She has not called back, so she will be getting a call on Monday, as this is not going to go away.

It is so very difficult to give up one thing after another. Losing our independence is awful and the guilt unbearable at times. But for anyone to think we CHOOSE to feel this way is insane! I want to stand at the top of the mountain and scream, but here I am in the grand canyon just trying to see daylight.

The thing is, even though you don't believe it, you will become more accustomed to your life changes, and things will get easier, mentally and maybe physically. That's not to say you won't have miserable days, because you will, but remember, we will be here for those days when no one else understands, when you feel like like you're hanging on by one finger, hang on to us. We are all there for each other. When no one else understands, I promise we will. This period will pass and will get better. Just hang in there and know so many people do know and are here for you. sending lots of hugs and support your way! morgan

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Hi Janine;

As I read your post I felt as if you were pulling the words right out of my mouth. I feel the same as you. I have 2 children, a boy age 6 and girl age 12. I can't do the things I want to with them. I feel they deserve so much more from me. But I can't give and that makes me so angry I also want to scream from the roof tops. I find myself out of praying mode and instead into begging mode when it comes to talking to God.

I have been in this dark hole for the past 6 months. It is hard to believe all the things I did one year ago I can't do today. I also had to quit my job. It was the best job I ever had working in a greenhouse surounded by plants and flowers. I picked my own hours and loved being there. But I couldn't do it this year. I also want to know WHY? WHY am I unable to leave the house with confidence? WHY can't I do fun things and go fun places with my kids anymore? WHY can't I be spontaneously intimate with my husband anymore? WHY can't I even go to church? WHY can't I enjoy life like I used to? WHY do I know all of the people at the pharmacy on a first name basis? WHY do I, lately, see and talk to my doctor more than his own wife does?

It isn't that I don't want to be healthy. My friends and family look at me like I am either crazy or just looking for attention because just a short time ago I was not like this. Every time I feel the least twitch or pang I get panicy. I don't want to be this way anymore. I envy every person that doesn't have this debilitating syndrome. Yes, I know that it can be worse and I thank God that it isn't a syndrome that is terminal. Yes, I know that there are people out there that are worse off than I am. I pray for them.

Coming to grips with this is the hardest thing we will ever have to do. There is a reason for this. I don't know why and I may never know. But I do know that I have to keep pushing forward for my family and most of all for myself. I am 39 years old. I don't care about getting older. I understand and accept that fact. But, what I don't understand and find it hard to accept is dealing and finding normalcy with this physical aspect to the second half of my life.

Finding this site has helped me so much. We are not alone. We are only misfortunate with the fact that this syndrome is not well known yet and doctors only try to make us think they know what to do for us. It gets so depressing not being able to do the things we used to do. Some way, some how we need to find something normal in this pitch black hole we fell into. The one thing I have found is the people who truly love me are there. Along the way I am hoping to find more things to make normal so I can come to grips with what I have now become or even who I still am after all is said and done.

Take care! Know that you and the rest here are always in my prayers!! GOD BLESS YOU!!!

KathyP B)

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I have not come to term yet but I am slowly getting there.

When I crashed 4 years ago doctors told me that it was all in my mind so for 2 years I kept pushing myself (and fainted x10 per day).

2 years ago I went to NIH and they diagnosed me. It took me many months to realise that I had to "re-build" my life.

I have just recently decided that I am not waiting for the miracle pill anymore and applied to have a wheelchair. This will give me part of my life again. I have always been a people person and I have been homebound for 4 years. I have decided that I will live to the max of my capacity without pushing myself beyond my limits.

I am not waiting for doctors anymore. I don't expect much from them. I don't want to live the next half of my life as a couch potato so I am organising my life to be able to go out and see people.

It takes time to come to term with loosing our health and everything that comes with it.

You will make it.



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:) Hi Janine - I was diagnosed 3 years ago and have come to terms with this illness and the changes that is has brought to my life - It didn't happen overnight - the first year when I was sick and spent 5 months of it in the hospital I wondered Why me? Will I ever get better? When will I be able to go back to work? and spent alot of time laying around and feeling sorry for myself. After awhile, I came to the realization that I had to make some major adjustments to my attitude and be more positive and take one day at a time because all the worrying and thinking I was doing wasn't helping me. Once I started to truly believe that God works in mysterious ways and this has happened for a reason, I have done alot better. I focus on what I can do, not on all the things that I can't do anymore. Maybe one day I will be able to do some of the more active things that I used to enjoy, but for now, I am just enjoying life and the time I am able to spend at home with my 2 cats and my husband when he is not working. This happened in the prime of my life, when I was getting ready to start a family, had a great f/t job with the govt. and wham. life changed in an instant - sometimes you have to just have faith that everything will work out in the end and this will make us stronger people. Sure, some days I don't feel well, but I don't dwell on those days, if I have to lay around and not do much I take it easy and don't beat myself up over it - I know its not laziness, sometimes medications and a chronic illness just gives you bad days and you go with it. Look, I am our fellow insomniac who is up each night till all hours, pumped with adrenaline, yet I have a hard time all day staying awake, even after 10 hours of sleep and usually a nap of an hour or more - My meds have been lowered, changed,etc and yet I still have this problem. I just go with the flow. Anyway, sorry for the long winded reply. Have a good night. Hope you are sound asleep right now! B) Beth
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