I am here and feel so alone

Michele, Oh Michele, I wish I had the right healing words for you and your husband. This must feel so depressing, alienating from others, and just emotionally tormenting. Everything must feel like it is dying with no ray of hope. Oh how painful it must feel. I am so sorry. I have this disease and is moving into my heart. I getting things set up to die and people are never helpful with there statements, such as: "Everyone is dieing", "You don't look sick", "Does it really matter" etc. So a suggestion is to listen to your breath. Maybe slow your breathing down to gentle breaths and try to let go. Letting go will help your husband tremendously. I say this because I have died physically before and now I have a new death. And I need to work on letting go again, and letting go is the complete opposite of human nature. So maybe let go just in small amounts in your breath as you can. Michele your presence is significant. Breath, spirit, precious are all YOU! Syd

Thank you for your kind words. Yes that is so true. No one knows what to say, so they say nothing, or the wrong things. I feel in a way the need to pull away emotionally a little, as a way to protect myself from the hurt I know is coming, yet the more I pull away, the more he clings closer, and it is a struggle. I feel guilty for pulling away..... Yes, it is so difficult when he has good days and doesn't "look sick" I feel concerned people will see me as a liar who just wants to gain sympathy in the community and stay home and get assistance. However lately those times have been less and less and I don't think that is a concern anymore. I have been trying to find ways to relieve stress and have things for myself to sort of have my own time outside of constant caregiving. It is so difficult because I know if I was ever gone and he had a seizure and it was the "one" I would never ever forgive myself. I know there are no answers, at least not easy ones, for any of us.

Oh I feel for you so much. We have been down the route of being accuesed of Munchausen by Proxy, we have also been at the situation where we felt death was iminent and then it wasnt...wonderung what people think of our claims. Now Eve's problems have us on a see saw, one minute she seems to be dereriorating before our eyes and then she has a few good days and we wonder if maybe they have it wrong. having gone from wondering if people believe what we are saying we see to being devesatated because they say they can see what we see. there is no answer, nothing is right or wrong. I would say though that we learnt at the death of our first son that today counts. Make the most of today of this moment,try to build memories, keep photographs, write a diary, remembr the good times even if it is just being able to enjoy a special moment together rather than a whole day. Try so hard not to grieve whilst you still have living to do. It is so easy to lose the precious moments of today worrying about what may come tomorrow. Sending you love and hugs

It is good to know that I am Not alone. I remember when I worked. My co workers would pretty much look down on me and "accuse" my husband of being a deadbeat and making me work so hard to support our family, because he could not work and I did to support all of us. This of course was before it got so bad I had to come home. They would make comments like "well, what is wrong with him anyway?" "Why can't he work?" "When is the last time he even Tried?" Of course the answer was "We don't know." because we did not have a diagnosis. All we knew was every time he did try he would run fevers and get whatever infections where out there, and the fatigue was just so bad he could not make it. Then of course there was the "well, he looks good" with the implication "He is fine, he is just playing you to sit home while you bust your butt." I admit to tons of guilt Now, but I admit in the beginning, even I started to have my doubts at times!! Feelings I feel aweful for now that I had when I had our first child and he got to stay home with him and I had to go back to work full time. Feelings of doubt, feelings of jealosy that I wanted to be the one home full time mothering while he went to work. Now that I know what was going on in his body I feel such anger toward all those who doubted him. The doctors, my co workers (which by the way were RN's) and most of all myself who saw the bad days but then as you said the very next days there could be months where he was just fine. He went to the genetics clinic today. It is so nice to finally be here. With people that believe him, understand his illness, and know what they are dealing with, and can help us understand. They were shocked at the rate of his decline just in the past 6 months since his last visit. He is depressed now because I think he still had some hope, some small glimmer as they are ruling anything else out possible, even though we, and they knew. We as a family are all grieving, but it is very hard to know how. Thank you for listening and all your suggestions. I go to a counselor once a week to vent and talk and this forum to talk to others going through these struggles is just what she recommended.

I think all the things you and your husband are feeling are very common. When one person in a family has mito it is like the whole family has it because it changes everyone's lives. I'm sure you do this, but I think it's really important to acknowledge that a person has mito but they are not mito. I don't know if that makes any sense. So, both of you are allowed to have times of being frustrated with mito without being mad at the person. For me once the dust settled after getting a diagnosis I found a lot of encouragement in realizing that I am not alone. Other people feel just like me. It helped me a lot just to realize that the things I feel emotionally and physically are being felt by others all around the world. As far as the fast decline I have to say that sometimes I go through months of declining really quickly, and then maybe I'll start eating differently, or find a new medication and all of a sudden I get back a big chunk of what I lost. That being said, I totally freak out every time I am on a rapid downward spiral! Hang in there!

Michele, It is good to hear it from your point of view, as the spouse of the person with mito. I am the one with mito, as well as my son, and are deceased daughter, so our family basically revolves around this disease. I too was an RN, and stayed home to be with the kids, but since symptoms got worse, I cannot work. I would never be able to make it more than an hour or two. I would be fired before I was hired. The fatigue is too unpredictable. I know many people look at me not understanding this and can't comprehend why I shouldn't be able to work since I look normal. Some days are good for me and I function as close to a normal person as possible, but other days, no way. I myself feel guilty for not being able to go back to work, especially since our daughter has died so her care is gone and our son is in elementary school, so that leaves me at home with not much of anything. Thanks for sharing your story. Now I see it from the other point of view, although it really doesn't change what is happening. I just understand a little better. Beth

Beth, thank YOU for helping me to feel in some way like I am helping others too. I really am shocked by how many lives are affected by this disease, or diseases I should say because there are so many different forms. It is amazing that doctors do not know/understand more about it, as it is turning out to be not quite as rare as I had first thought as I reach out and hear other stories. My husbands PCP admitted he "heard about it once in med school, he thinks". Luckily he is one who is willing to research, listen to the specialists and learn. So many out there do not want to be bothered, and believe me, we have been to them! If it does not fit into their little HMO/DRG "playbook" they don't want to even hear it or think about it!