Archive | May 2014

Birthday Madness

This week was my birthday. I’m trying not to think about the time that’s passed since my last birthday, since I’ve been home/bedbound the entire time. To be honest, I’m not exactly thrilled to be here for this event. Don’t get me wrong – if I thought for a moment I could get better and be well enough to live even a semi-normal life again, I’d have a list ten miles long of things I’d want to do. But doctors agree. Whether it happens today, tomorrow, or several months from now, I’m dying. And I’ve accepted that (though it wasn’t an easy process getting to this point). Now I’m simply ready to move on – for everyone’s sake. But more on that in a later post.

For now, I’m still here. And because I’m here, my family wanted to celebrate my “special day” with me. Those who live with moderate to severe ME will understand what I mean when I say that celebrating my birthday isn’t about me anymore. It’s not about getting gifts. It’s about giving a gift – the important gift of allowing loved ones to spend time with me, to feel like they’re doing something special for me on my birthday. Especially since this may be their last chance to do so. Earlier on in my illness, I hated birthdays – almost to the point of resenting them. I felt like, if birthdays really were about giving me what I wanted and/or needed, people would let me rest. They wouldn’t ask me to spend my extremely limited energy with them, fighting nausea the whole time, then spend the next several weeks in pain as I struggled to recover from our meeting. Instead, they would allow me to rest so I might actually have a chance of feeling somewhat well on my birthday. Then I realized that this was something extra precious I could give them. Happy memories with me, trying to make my birthday special.

Sometimes allowing others to do special things for and with us is the best gift we can give. ME is particularly hard on loved ones in that they often feel helpless while watching us suffer, knowing their presence alone brings an increase in agony throughout our entire body. So it’s important to give them as many opportunities as we can to feel like they’re doing something good for us. Whether it be celebrating a birthday, helping bathe or feed us, or doing anything else that comes to mind, it’s important to let them help. I used to feel guilty for relying on others to help me so much. I still do sometimes – especially when it comes to my husband. But I’ve come to realize my husband needs to be allowed to help me almost as much as I need his help. And my family needs to be allowed to celebrate my birthday with me. ME may restrict the number of things I can do for my loved ones, but this is something that is completely within my power.

So, I spent the day with various family members popping in and out. I also got some very touching, personal gifts from several people. Things I will treasure every day. I actually feel this was one of my best birthdays ever, and I spent it entirely in bed! My mom will be in town through the rest of the weekend, and has volunteered to come be my carer during her trip while hubby is at work, so that’s good as well. All in all, it’s not been a bad week!

I have several big posts in the works, so stay tuned for those. I hope everyone is doing as well as possible and getting lots of rest. Huge thanks to everyone who has read, commented on, and shared my posts so far. It has been great getting to know everyone, and I look forward to continuing to do so for as long as possible. Love to all!