Tag Archives: friends

Getting on with life

There has been a nagging feeling of things that need to be done, but exactly what those things are swirl around my mind and it is hard to capture them, so I am left with this constant undertone of confusion.

This morning, I was able to communicate some of them to my husband. In some cases, they are simple things, like “I need legal pads.” But when I have previously thought about buying legal pads that thought was also accompanied by the desire to not go back into Staples, where I have had an HD meltdown. So the legal pad need has been going unfulfilled as I write on the back of every lined piece of paper I find. There are some other things I needed that I could pull out of my head to tell husband.

One item is a small pad of paper and pens so I can write down the other things as they come back around!

I fell out of bed a few nights ago. I was sleeping like a rock and landed like a rock, too. It scared me, but I wasn’t hurt. I have been sleeping with a fortress of pillows around me or on the couch ever since. My husband is going to buy a baby gate to go on the side of the bed. I hope that will keep me from taking flight again. A friend of mine sleeps with his bed on the floor so when he falls off, he won’t have as far to fall. I think that is a pretty good solution, but like having the bed up, just because I am used to it and heaven forbid I try to change anything I am used to because I will stress over that.

I have discovered that being around people who I don’t know well is exhausting and I am very averse to it. Because I have an invisible disease, I wonder if and how many times I have met people. I wonder if I have told them about me, or if they already know. Yesterday, I dropped off some stuff at a neighborhood picnic and the difference in my level of comfort was so dramatic between the people that I knew well and those I knew by sight. It was a stark contrast. I was stressed out being around strangers in a setting where my reactions to their questions might make them uncomfortable.

In general, I am moving forward and am trying to do so positively. I have lost over 40 pounds (I am overweight) and each day I pretty much wake up cheerful. It just gets harder as the day goes on.

Sometimes, if something that is not routine occurs or something suddenly annoys me, I will take an extra mood stabilizer to prevent HD’s irritability from taking control. I had written “my irritability” but decided that I am not going to claim it. It is the disease that has installed the pressure cooker into my emotional center.

There is a woman who I wrote about in a blog about a year ago who introduced herself to me again and again until I finally started remembering her name. Her name is Vana, and she has become a beloved friend. She is headed off in the next few days to spend a year in St. Lucia to pursue some dreams and my happiness for her outweighs any sorrow so far because I am proud of her gumption and courage. I know it will hit me later.

Vana, I wish you the greatest adventure of your life, and thank you for becoming part of my family.

Thank God for the internet, right?

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The importance of friends

It cannot be understated.

Yet I have realized that, after two nearly two years, I’ve never written about it.

After my husband, I have best friends-in-the-whole-wide-world.

BFINTWWW  love me as much as I love them.

I can not talk to them for weeks, but always know that they are there for me.

And, individually or collectively, they seem to always be coming up with things for us to do, places to go, bucket list items to cross off, and other ways of filling life with beauty so large that it blots out the bad stuff.

They are the ones who call me after I’ve been in hibernation.

The ones who have such a great capacity to love that they of course have many other friends. But they make me feel special and loved. And not because I have HD. They either knew me before I became aware of the HD and have made the choice to stick around or they have gotten to know the parts of me that peek around the HD and accept the me that I am.

Sometimes I think about the people who have discarded me but I do not miss them the way I used to before I realized that I was only doing the best with what I’ve been dealt.

People have just stopped talking to me and never acknowledged my words again. My usefulness or value to some people has expired. I have been cut loose because I “made the same mistakes over and over without growing from them.” I have been let go because I was not positive enough. I have received bitter diatribes because I no longer properly embody the role that was originally cast for me.  When I look back at my life and my friendships,  I readily admit that I was a pretty shitty excuse for a friend sometimes.

But all I can do is try to do better going forward.

And in the spirit of moving forward, today and every day, I thank the special people who have chosen to love me. The people who make my life whole and worth living.

I am simply blessed.