Monday, December 1, 2008

you know, sometimes I just don't have nice things to say.

Okay, so I have not posted in a while because frankly, I just have not had very nice thoughts or words to put out into the world. Having a chronic illness does that to a person-heck, living a life, does that to a person- but that is part of the healing or dealing process. It is roller coaster. An uphill climb and a downward spiral of emotions regarding acceptance vs. denial and love vs. hate and just the general feeling of, "I can do this, no matter, what." Because frankly, some days, I don't want to do this. I want to go to bed, pull the covers over my head and tell God that He made a huge mistake. And further more, ask God what mistake did I make, for this horrid condition to be hurled upon me?

These last few weeks have been slowly but ever so painfully, a slip; slip and slide into a world of this disease, this disorder Dysuatonomia, that I forget exists sometimes. I forget it exists because I am fortunate enough now, that these hard days are few and far between. Unfortunately, the hard days have arrived with guns loaded and my body and life seem to be the target. I am sad. I am hurt. I am devastated. There is a grieving process with a chronic illness. You grieve for the loss of the life you once knew, just as you grieve for the loss of someone you love. Each time Dysautonomia steps up to the plate to take another swing, I begin that process all over again and no matter how many times I have gone through those steps before, I must begin at step one, all over again. That grieving process is a hard thing to go through time and time again.

I am not returning to school next semester; a huge defeat for me. It is always hard for me to make the call not to return to school for a semester but I always know if I am having to even consider the decision then it is probably for the best. My family is always supportive and they always leave it up to me and let me know that no matter what I decide, they are here for me.

I have now returned to my wheelchair full-time, outside of my home. A real, "10 steps-back" if you will. I have began fainting with no warnings and staying completely out for several minutes. This has started happening several times a week. This is new. After 10 years of being sick, this has never happened. I have also began to loose the ability to speak and move for minutes at a time. We think they may be associated with migraines but honestly we have not treating physician here in my home state, who really cares to investigate. We are going back to Washington, D.C., because since my visit in October, I have only gotten worse; not improved.

And finally, something that is weighing so heavily on my heart, that I feel like I might drown. I am beside myself with anger and I am distraught. I don't know what to do and I don't know what to feel. I am just at a loss. This situation began before I started getting so much sicker but getting so sick only made matters worse. Friends have hurt my heart. As I said, it began long before now but being sick -and them knowing how sick I am-has made it worse. When I was able to go and do and "be fun", we were all friends. But now, now, when I really need them...where are they? They spend their weekends together with other friends. I feel left out.
While my friends were in college and working we never saw each other then either. But while I was feeling some better and we spent so much time together, I thought that they were reminded of what the "old Heather" was like. I just want to know that they care that their friend is in her bed while they are out dating, going to football games, and just generally having a good old time together. I would like to know that I am missed. But I think what hurts the most is the fact, that I am not missed and I know that. I have known that and I want to have the energy, confidence and capability to strike out on my own and make new friends.

Ahh...this is a horrid post. I am sorry to anyone who reads it. I really am okay and I'm dealing with these things fine. I am seeing my wonderful therapist, who has seen me off and on throughout my entire illness. I am in good hands. I am in God's hands. Please know that I keep all things in perspective and I know everyone-no mater what the situation-can relate to these feelings!
Love to all my friends!!
Merry Christmas!
Heather

2 comments:

xxshellxx said...

oh dear heather, dont give up darling! life has so much gifts, you get them when you least expect them! all the polyvorians are behind you 100% of the way im sure! xoxoxoxox

Karen said...

hi sweetie! thank you for that very honest post... i don't know what to say except that, we are all entitled to feeling angry, hurt, distraught. It's all part of the human experience. The great news is, we have this blog wherein we can vent out healthily, safely, after all, this is our space in the internet. there is a reason behind all this, all these dark moments. just continue being aware, and even in your anger, keep talking to God. He is Our Guide... you will be guided. I send you love dearest Heather. I send you love...

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