This Is My Life Now

I did a brave thing this week & told 2 friends on separate days a secret I've been carrying around for several months. I was very upset last night & the Wise Mother told me to start letting friends know what's going on so that I stop feeling alone without any understanding. Until this week only one friend knew this secret.

I picked 2 friends that I'm close to & told them what's been going on. The one said I need to stop isolating myself with my fears.

So here goes...I have an auto immune disorder. Apparently I've had it for a long time but it was recently diagnosed. While it's a relief to finally have a name for what's been attacking me for the last several years, I'm sad over the fact that the symptoms have slowly gotten worse & are now at times paralyzing.

I am very critical of myself & always have been. I expect perfection from everything I do & everything I am. With myself I see exhaustion as a weakness although I don't see it that way with anyone else. In a cruel twist of fate, fatigue plays a big role in what I have. By afternoon you will see big bags under my eyes. I am tired but cannot always sleep. I have had chronic insomnia for as long as I can remember. This obviously doesn't help the fatigue during the day.

I will lay in bed, so exhausted I'm seeing double, begging for relief from the pain.

In the beginning, 8 years ago, doctors tossed around Chronic Fatigue, Adrenal Fatigue, Hypothyroidism, and Fibromyalgia as my diagnosis. Then my symptoms were blamed on my endometriosis. After my hysterectomy, my appendix almost burst...surely the symptoms would stop after that. With that surgery came a rare complication that required 7 days of wondering if I'd live to leave the hospital & another surgery to correct it so I could live. Yet the symptoms never left. Removal of the gall bladder...that wasn't the answer...and my final surgery in August wasn't the answer either. All these surgeries fixed some problems but not my underlying issues.

Then I got the diagnosis that made me realize this was lifelong. There is no magic pill, there is no surgery. There is nothing to make me better. There is no fix, only hope that the right cocktail of medication will make my days bearable.

I've isolated myself from friends because I'm scared of being around people when my symptoms flare up. There have been days I cannot leave the house either because I'm so sick or because I'm scared of getting sick in public. I have left my house only to return in 5 minutes because I get sick with no warning. I have missed days of school, canceled plans with friends at the last minute, and missed my kids' sports. All because of flare-ups.

My old church members have told me they miss me at church. I have not told anyone that I cannot make it because I can't sit through a sermon, on a good day. On a bad day I can't even get out of bed to get ready in time for church. Some mornings it takes me 2 hours to be able to get the pain to a level where I can move.

I'm sad because I miss the life I had & I'm sad for the life I will never have again. I have to learn to accept that this is my life now. Once I accept it I will be able to have my "old life" but in a different way. I haven't learned how to do that yet because we're still playing around with what my flare-up triggers are & which medications are the ones that will work for me.

I'm sad that my children have to have a Mother who is a different parent than they were used to. I'm sad for my husband because this puts a lot of stress on him. He worries about me, he has to take care of me some days, and he has to take days off from work to take me to the hospital. He has to wake me up to give me medicine because my medications have to be given on a strict schedule so as not to interact with each other. He has to helplessly watch while I cry in my sleep because of the pain. All he can do is hold me when he wants to fix it.

I told him one day his life would be easier if he wasn't married to me. He said, "It would be easier but it wouldn't be happier. I'd rather be with you while you go through this than without you." I still feel tremendous guilt for all that I put on him.

It's not easy to tell everyone that I am not who I portray myself to be to the world. I don't look sick & I know no one would ever guess what's been going on.

Sitting in class, at kids' functions, working, even going to the grocery store...some days it's so extremely painful to do those things that I'll spend the rest of the day, sometimes even the next day, in bed struggling to lift my head off the pillow from the energy I exerted to live a normal life.

There are good days where I feel okay, the only symptom I have is tolerable pain, I have energy & can be my "old self." Then there are the days that I don't tell anyone about, where answering a text from someone is too much for my body to handle. When people ask me how I'm doing I hold back. I don't tell them that I'm struggling to get through my days because I don't want to seem needy or to have anyone focus on the negative. I'm not that person. I'm not needy, I'm not dependent, I'm not a negative person. I like people to recognize my achievements, not give me a pity smile.

Now I'm letting everyone know that with our crazy schedules, with my husband working long hours, and with my illness, I need help. I don't ask for help because I'm the strong one everyone else goes to. I always have been. I still am. I don't want that to end. I have recognized that it's time I'm honest & let everyone know that I'm struggling.

I have to stop pushing myself to pretend I can do what I used to do & accept that changing my life doesn't mean I'm weak. It simply means my limits have changed & I have to change how I do things. I can't feel guilty for needing my friends & family to help me out now.

I recognize some of my friends won't be able to help me right now. Some people are not going to accept that I'm different & our friendship may have to shift a bit because of that. What we do together may have to change to accommodate my comfort & my limitations. People will have to be flexible & understanding.

Some people won't want to acknowledge that something is "wrong" right now & I need a lot of strong people to help me figure out my new life, because they're not able to step outside of themselves for someone else. That's okay. I'm not expecting anyone to do that. I know I have friends who will say they wish they could help me. I know I also have friends who will just figure out what's needed & do it. Because they know me. For those friends who have already done that, and those who will, I cannot tell you how much it's appreciated. I need those friends & family more than I've ever wanted to admit.

This is my life now. And writing this was my first step to accepting it.