Saturday will be my 7th birthday while having a chronic illness.
I’ve learned a few things along the way about how to celebrate a birthday with chronic illness. As a disclaimer, lumping all illnesses together and generalizing how they play out isn’t fair, it depends what type of chronic illness you have to really determine what type of birthday you’ll have. With MECFS birthdays are generally energy depleting so you end up experiencing post exertional malaise (PEM), or a worsening of your condition, pretty much no matter what you do, or how you celebrate your day. PEM doesn’t just appear after physical exertion; it comes after emotional and mental exertion as well. It’s so vitally important to learn your own energy availabilities and try to work within your energy envelope (click here for more on energy envelopes), especially with events like holidays and/or birthdays.
Since becoming ill I’ve realized there is so much pressure on your birthday to be happy. It’s supposed to be this amazing, fun-filled day with friends and family, and everything wonderful and good in the world. But what happens when that’s not your reality? It feels like a letdown. So, I’ve changed my thinking. Those unspoken expectations had to be relinquished just as much as all the other expectations that had to be let go when I became ill. The fact is, my life hovers around 15% of what it was, and so my birthday will also be around those same numbers. It sounds odd to break one’s birthday down into numbers but I’m logical and … what more can I say, it helps me to feel okay with my reality.
One way I’ve made it a better day for myself is to celebrate myself instead of waiting for other people to celebrate me. As an introvert I try not to bring too much attention to myself, however on my birthday I do post that it’s my birthday (on Instagram). I wouldn’t have done this as a well person but these days I ask people to join me, if they’d like, to celebrate their day, in their own way, perhaps with a sweet treat. If you were to hyper analyze that one, I’m not asking them to celebrate me, just themselves and the day. To be honest, I’ve really enjoyed sharing the day with others on social media and I know it’s probably perceived as attention seeking, but the reality is I have a handful of people in life (outside of social media) that will wish me a happy birthday and I’m so, so thankful for each and every one of them; it’s also nice to let others join in on the fun too.
This year I say goodbye to my 40s. That’s a bitter pill, not because of the number, but because most of my 40s have been spent struggling to get my pre-illness health back, and not only have I been unsuccessful, but my health has continued to decline. I won’t even begin to ponder what my 50s will look like because I still believe in my heart and soul that a treatment will be found and I will see a reversal of this illness in my lifetime. I keep telling myself that when I look back on my 40s someday, I will remember that I do have some wonderful memories, some heartwarming moments to cherish, and stories to laugh about. I’ll also be able to look back and remember this blog, this reaching out, this attempt at trying to help other people who are in my shoes or know someone who is. I’ll remember the private messages I’ve received thanking me, the people who shared their experiences, who made me laugh, who brought tears to my eyes, who made me feel, not only less alone, but supported and comforted in only a way that another person with chronic illness can do. I can assure you that the saying you don’t know until you know hits very close to home with chronic illness. I’ll also remember the well people who let me know they stop in to see how I am so that they know how to better pray for me. Those experiences and memories, that have been brought to me simply by me rambling on endlessly here, they are so precious to me. Milestone birthdays bring about contemplation in many people, so I know I’m not alone in my reflection, and it brings me peace to know that my 40s, despite having lived them primarily in my bedroom, have still been filled with so much goodness.
To be candid, it is disheartening that time keeps ticking away, and my life is 15% of what it was, but one of the most valuable lessons I’ve learned with this illness is to stay in the moment. It’s not about what was, what I used to do, or what I thought I was going to do, it’s about what is, in this moment. As I tiptoe into my 50s I’ll continue to remind myself to just be, appreciate the time, appreciate what I can do, appreciate the people who interact with me, and continue to fill my heart with warmth, and happiness. Having said all that, hopefully next week I won’t find myself knee deep in a midlife crisis or something. 😉
Thank you for stopping in today. I’ve been really struggling lately health wise. I had a phone hearing last week and the preparation and actual hearing brought massive PEM. I think I’ve doodled two or three times in the past two weeks (so most of these are ones I’ve already shared here), which is unheard of for me. Hoping to slowly get back to baseline so I can at least sit out back on the patio and feel the summer sun on my face. Baby steps… Hoping wherever you are and whatever you’re doing that today brings you goodness.