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!
Documenting M.E. 
Hi (sorry forgot your name). I read your blog for some time now, but have never commented before.
I agree that Jodi’s website about ME http://www.hfme.org is the best there is. Did you know she also had a website about health in general where she gives tips about supplements? It’s http://www.hhhummingbirds.com
Your blog of today made me think. For years now I haven’t celebrated my birthday, because I’m too ill. I never thought tho that celebrating my birthday would be a gift from me to the people who are dear to me. Thank you for making me see this.
Hugs, Ingeborg
I’m from the Netherlands. I’m bedbound due to severe ME since 1998. For more info about me and my live with severe ME you can check my website http://www.borgofspace.com/E_index.htm
I haven’t been able to update my website anymore since 2005 tho, but you can find some updates at the guest map which my mom or carer posted for me.
Hi Ingeborg! First let me apologize for not getting your comment approved sooner. I use the WordPress app on Android, and somehow your comment got marked read before I had a chance to approve and reply to it. Thank you for posting a second comment to make sure I saw this one!
I’m so glad you find Jodi’s website as useful as I do. I did know about the other site of hers, and you’re right, it’s also chock full of good information. 🙂
Birthdays and holidays are so tricky for those of us with severe ME. I’m glad to be able to use those dates as opportunities to give back to loved ones, but it definitely takes a toll on health. Oh well. I believe it’s important to find a balance between protecting our physical health and improving quality of life (which includes giving back to others, as it tends to be important to people to do so).
Thanks again for taking the time to leave a comment, and following up to make sure it was seen. I will definitely check out your blog, and hope to hear from you again if/when you’re feeling up to it. Hugs!
I want to say something, but everything I think to write seems to be insufficient.
I can hear your acceptance. You talk about it so simply and with resignation. When my husband was told he was dying, he said, “It is what it is.” It amazed me that he was so accepting; but he knew whatever was tried was to no avail.
My daughter suffers also, from M.E. She is still working. No one knows how she is doing what she is doing, and with no one at home that she can fully count on without worry (daughter is autistic). Each week, she gets worse and suffers more pain and weakness and fatigue. And as a mother, I feel so helpless.
I am honored to read your blog. Thank you for it.
Aww, thank you. I can only imagine how difficult it is for you as the mother of someone with severe ME. My own mom has been visiting in town the past few days, and I know it is difficult for her to see me like this as well. She also gets frustrated with the fact that there’s so little she can do to help me. I admire you for the love and support you offer, and your clear involvement in the ME community as well. I am honored to have people like you reading my blog. Thank you again for your kind words. Hope you have a terrific week!
I wonder if my message from a few days ago came through… I can’t see it. Does this mean it’s gone somewhere in space?
Hi. First of all please accept my deepest sympathies re your situation and my best wishes. I’m so sorry that you’re having such difficulty obtaining any nutrition.
I’ve had ME for over 20 years and increasingly severely all the time without any respite or improvement, just a downward slide. I’ve had periods of constant vomiting and often live with a certain level of nausea though not as critical as yours. I’ve been bedbound for years now. I’m not commenting here to criticise or judge your decision, far from it I totally respect and empathise with you. I just wonder if you should wait a bit longer or maybe give yourself a couple of more years? I’m being selfish in asking you this, as I’ve lost friends to severe ME (most died naturally but 1 took her own life after 17 years of very severe illness). I just don’t want a world where all of us with severest ME perish, it makes me feel even more isolated to hear that another severe ME sufferer has left us. Please don’t take this comment the wrong way, I’m simply expressing my own feelings on this issue and thinking aloud. Feel free to ignore my comment or delete it, as I understand this blog is not about discussing your decision. I would just like to reach out to you (and any other severe ME sufferers out there ) and share my thoughts.
Lots of love and hugs