Where I've been, Where I'm at, And how you may be able to help!
These last years I have become very reliant on Facebook to stay in touch with many of you. I’ve learned of your victories as well as what interests, saddens and amuses you. We are all complex beings, no two alike, yet all the same at the core. I am mystified by that; I always have been and always will be. I myself have avoided posting my personal circumstances publicly for many reasons. I now feel compelled to do so that I can move on to the next chapter of my life with your help. Many thanks in advance for taking the time to read this.
As many of you know, I have had some significant health challenges these past years that have kept me from being out and about in the community and engaging in activities I enjoy. What many are unaware of, though, is that my challenges are not new to my family or closest friends, as I have struggled with a complicated medical history for more than 30 years. I, my family, dearest friends and physicians have dealt with my flares for many years, and for the most part, we have been able to manage them. What is new, however, is the breadth and impact that this last flare has had on me.
Some of you may be familiar with the term “invisible illnesses.” Unfortunately, as the name implies, these illnesses are tough to diagnose and many have no cures. Fibromyalgia is one of them. Its sufferers may look good, often healthy from the outside, but “inside”, their systems are not working properly. The same is true for Fibro. Fibromyalgia symptoms are complicated and diverse, but always include pain of varying degrees, sometimes even debilitating.
My own health journey has been long and arduous but I know of others whose roads have been even more difficult. My heart breaks for them, however, I am also so encouraged for the many who are newly diagnosed and now have some information and/or tools available that, for whatever reasons, weren’t available years ago.
No doubt some of you are wondering why I’m choosing to share my personal story publicly now. There are many reasons; Firstly, this is my narrative, and in my world, it’s important for folks to hear it from me, not from someone who heard it second or third-hand as facts inevitably change...
Secondly, if I post it here, it can be re-shared and I can lessen the number of times I need to retell the tale as it is physically taxing for me. On that note, I’ve learned too that it can be very difficult for some to process and deal with uncomfortable news, most especially in a social setting. Sharing my news in this way allows folks to process my issues privately and at their own pace so that when I do see them, I can get the smile I know they have for me rather than their overriding fear for me.
Lastly, it is terribly important for folks to become educated and try to understand how difficult it can be for those with any chronic illness, especially those dealing with chronic pain, to go out into the world. It is not only physically draining, but also emotionally draining on countless levels. Lifelong hopes and dreams need to be readjusted, new coping skills need to be found and learned, as every day is now a different kind of challenge, one with each hour sometimes a challenge within itself. It's true, they are not the many fulfilling and fun challenges I used to have, but I’ll take them; with gratitude, and as much grace as I can muster.
There are ways that you can help me, even from afar. First and foremost, keep your prayers and good energies coming my way! I can’t thank all of you enough for your kind words, thoughts, well-wishes, cards and flowers over the last years. They have been so very much appreciated as I, my family and friends have navigated these troubled waters. For those of you close by, know that I am getting stronger, but am still managing many issues. For now, I am making every effort to get out more on my better days. Here are some tips that may help you (and will DEFINITELY help me):
1. Please don’t hug me! I am in physical pain nearly all the time and hugging hurts. Take my hand, kiss me on the cheek, and if you forget and come in for a squeeze, please don’t get embarrassed if I politely pull back and say “No hugs” with a smile!
2. If we’re going out for a meal, understand that I am strictly NO GLUTEN, NO DAIRY. Even the tiniest bit is a problem for me and exacerbates my pain. I am careful with my diet and there are no exceptions. I have no problems bringing my own meal if necessary, (again with a smile!)
3. If you would like to get together, advance planning for me is key. This gives me time to rest in advance and be at my best, which makes our visit together much more enjoyable!
4. When we see one another, let’s talk about your kids, your job, our families, and life; not my being sick… When I’m out I’d much rather feel as normal as possible! If you have some new medical info you’d like to share, please text or email it to me so I can review it and share it with my doctors!
5. Please, please, please try not to be frustrated if I do need to reschedule or can’t make an event. I can’t predict when I’m going to have a bad day or when I’ll be unexpectedly overtaxed. While I know it’s inconvenient, I would rather be asked and not be able to go as opposed to not asked at all.
6. It is very hard for me to ask for help. (If you are an independent, Type A person, you understand this!) Through necessity, I’ve learned to get better at this, but it is still a struggle for me. If you see I need help, feel free to just jump in – within reason of course! Trust me, I’ll just smile and thank you. Chances are if you ask, I’ll just say no and regret it later…
7. If I get very quiet, it's because I'm flaring and I’m having a hard time speaking. No worries; sometimes my not talking is a good thing for those around me, just ask my family and friends!!
Many thanks again everyone for your past, present and future patience, support and concern. Without being presumptuous, I thank you on behalf of everyone suffering from this and all chronic illnesses, whether they are “invisible” or not. Heather Browne
