Planning a Fibro Wedding

I’ve maintained for many years that I would never settle down, marry, or have children. When I accepted the proposal that meant the death of two out of three of those stances, no one was more surprised (and vaguely concerned) than I. I’ll be honest– there was a lot of fear and second-guessing that came up in the 6 month wedding planning process, and not all of it came from my rather dysfunctional past. In fact, one of my greatest concerns had nothing to do with relationships at all, but rather the fact that I had been recently diagnosed with fibromyalgia and my health was rapidly spiraling downward.

My experience with fibromyalgia is quite limited. Although I can now trace symptoms backward through my life and say with calm certainty that I’ve had fibromyalgia since I was a young girl, it has never affected me the way that it has these past eight months. Rather than being a constant, painful reality, it came in spurts and left me with several years of remission at a time. By the time I was a teenager, the trademark fatigue had settled in as a fact of life, but I assumed that this was normal and I just sucked at life because I struggled to “push through” as everyone else must be doing.

I became quite ill in my early twenties, and after several years of vainly searching for answers from various walk-in clinics and emergency rooms while living a very nomadic lifestyle, I finally stayed in one place long enough to begin seeing a doctor more or less consistently. As luck would have it, he was a naturopath endocrinologist, and I was quickly diagnosed with severe hypothyroidism, a plethora of food allergies, and adrenal insufficiency. I did improve over time, but I still suffered, unsure of why.

After moving back to my hometown and beginning college for the first time, my body began throwing mysterious symptoms at me once again. It started with increased fatigue (as if I weren’t already dealing with enough fatigue?), progressed to knee and ankle pain, and it all went downhill from there. I established care with a general practitioner to get help with the joint pain, and when an autoimmune test came back with positive results I was referred to a rheumatologist. It did feel a little funny, walking into an “arthritis clinic” filled with people mostly in their later decades when I am still in my twenties. I got a few curious glances, but I couldn’t answer their unspoken questions. I myself did not know why I was there. I walked in as a questioning patient and walked out with a fibromyalgia diagnosis and a mixed sense of relief and devastation. (I recognize that it is highly unusual to receive a diagnosis for fibromyalgia that quickly, and I am grateful for my good fortune.)

 Since the diagnosis, my health has basically gone down the crapper, for lack of a more eloquent term. I received my diagnosis in September of 2012, and by December I was using a walker for airport travels and other, rather uncommon scenarios. I began taking prescription painkillers in January, so that I could continue to function normally. By late January, I was using a walker for most trips out of the house. The most devastating development to me was not having to use a walking aid, but rather when it started hurting to give hugs to the troubled teen girls I work with. I came home in tears that day.

 Shockingly (to me), my fiance never wavered in his desire or decision to marry me. He has been a never failing source of support and encouragement to me, as well as a fount of practical suggestions and common sense. Though he did not begin this relationship with someone who is, in effect, disabled, he took the changes in stride and adjusted accordingly. Having such a stable supporter in my support network made all the difference in the world as I struggled to come to terms with my new reality as a “fibromite” in addition to processing through all the other major life and identity changes that come with being engaged and planning a wedding.

 Needless to say, I had to take my ever-decreasing health into consideration when planning our wedding, which took place on Easter Sunday of 2013. Planning the wedding itself was not a huge challenge to my health on most days, thanks to the advent of Amazon and Etsy. I want to heap much good karma upon the heads of whoever developed those websites! The real challenges came when the time drew nigh and the stress level increased ten-fold.

 Of course, planning and pulling off a major event is different when you have a chronic illness (or three), especially one that affects so many aspects of your daily life. Here are a few helpful tips that I found to be useful to me as I toed the fine line between “get stuff done!” and “don’t overdo it!”

  • Plan around your worst-case scenario.

I’m serious. I figured that I’d probably be really tired and in a lot of pain by the time the wedding rolled around, and though I did my absolute best to avoid that reality… that’s what went down. I had arranged for my fiance/husband to set up a “bed” in the bed of his truck with layers of blankets and quilts and some pillows, so I’d have a place to rest if I needed it. I had really wanted to avoid using any kind of mobility assistance device during the wedding, but I ended up decorating the tall staff that my man had gotten for the weekend before at the Renaissance Festival and using that during the ceremony and reception. I recently had a friend comment upon seeing me with the staff that they hadn’t realized until that moment that it was for anything more than decoration! So think ahead to what you will need in the event of your worst-case scenario, and make plans for that to happen. If you don’t end up needing those plans, then fabulous! If you do, then you’ll be much less stressed if you’ve already got what you need in place.

  • Find and collect minions.

I could not have pulled off that wedding without my minions. I’m not even joking. Since we had a park wedding, all of the decorating and setting up needed to be done the morning of the wedding, not to mention the odds and ends that cropped up in the week before the ceremony. Though I’d set up my wedding plans so that I would have “nothing to do” the few days before the ceremony, there are always last minute projects and emergencies that come up. So. Back to the minions. I am fortunate in that I have an amazing support system that I’ve been cultivating for the past few years, but that’s no accident. I intentionally surround myself with happy, healthy, growing people who are genuinely interested in me and my well-being, and they have to be people that I can reciprocate that interest in. This group of people is very far-flung, but many of them came together in the few days before my wedding and really made stuff happen, stuff that I was no longer physically capable of doing myself. In fact, they even took over the things that I was physically capable of handling, insisting that I needed to rest and take care of myself! That brings me to my next point…

  • Take care of yourself.

I mean it. Naturally, the specifics of this will vary from person to person and scenario to scenario, but you must place yourself as a super-top-number-one priority. It may feel weird, it may feel super selfish, and it may feel like a waste of time. That’s okay. Let it feel that way, but take care of yourself regardless. For me, that meant making sure that I was taking my medications on time, staying hydrated, getting rest, eating adequate amounts of safe (i.e. non-allergen containing) and easily digestible food, spending quality time with my fiance, and showing up to all of my health-boosting activities (acupuncture, massage, yoga class). I spent a lot of time resting in the weeks before the wedding, at the insistence of my fiance (and just about everyone else)… and, honestly? I caught myself saying several times in the days before the wedding, “I’m SO glad that I rested a lot while I could…”, even though I was super frustrated by “just sitting around doing nothing” while I was doing it.

Learning how to take care of myself while balancing wedding planning along with regular life was a learning process for me that I was continually working on the entire six months I was planning the wedding. In fact, it’s still something I’m working on. Fortunately, I married that fiance that insisted I rest, so I have a built in accountability system in my life these days. (It really helps.)

  • Don’t be afraid to ask for what you need.

This kind of goes along with the above “take care of yourself” statement, but it’s a little different. I had an “aha!” moment with this one a few days before the wedding. I take pride in accomplishing things, especially now that my ability to accomplish is so severely diminished, but it seemed that my list of things to accomplish was three miles longer than my available energy resources were going to last. I was overwhelmed. Finally, it hit me that I had minions at my disposal who were practically begging for things to do and ways to keep me from expending energy. I rationalized that I had planned this whole shindig, so it didn’t make me a bad person to let others make it a reality, and that’s the truth! I did what I could, but that didn’t mean that I had to do everything! That meant asking my sister to bake the special allergen-friendly cupcakes that three of us would be eating, asking my day of coordinator to put together part of the favors for me, and asking my other sister to scrub my bathtub.

Not only was no one offended by my asking for help, they actually went above and beyond what I asked them to do. The cupcakes got baked and frosted. The favors got packaged and packed into boxes for easy transportation. The bathtub got scrubbed, along with the rest of the bathroom. I realized that asking for help is not the ticket to hell that I’d imagined it to be… and I’ve begun making it more of a practice in my daily life, not just saving it for special occasions or moments when I’m totally overwhelmed. Asking for help can be a preventative method that keeps you from sliding into a stress-induced flare in the first place. Yes, the fear that someone else may not do as good of a job as I would or do it the way that I would is always there, and I freely admit that you may be disappointed from time to time with the results you get. However, in the case of the park decorations that I was not allowed to help with, you may be pleasantly surprised. 

 As for the wedding itself, it was a great day. I can’t say that everything worked out perfectly, because it didn’t. I can’t say that everyone had the best time of their lives, because they didn’t. I can’t even say that it was the best wedding ever, because it probably wasn’t. Other people have had far grander parties, because they’ve had more money, more time, more resources, and more health. I really don’t mind that it wasn’t perfect, because neither my husband or I are perfect. I don’t mind that some people didn’t have the best time of their lives, because I was having a great time and I can’t control their attitudes anyway. I don’t care that it wasn’t the “best wedding ever”, because it was my wedding, and it was the best wedding I’ve ever had! (Hopefully the only one, at that.) Also, I got to marry the man who stood by me during my free-fall into  fibro, and that makes it a pretty good day by any standard.

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5 comments

  1. My opinion is that in that kind of big day, I would not think of fibromyalgia. There is many other illnesses that make wedding plan challenging. I have fibro and it makes me so tired many times. But on wedding plans I woulk try to keep it out of my mind and concentrate on wedding plans and make them come to action according how do I feel. Another aspect is that I would not plan too big weddings, jost close relatives/friends.

    1. Thank you for mentioning the smaller wedding aspect! I forgot to mention that. We did, in fact, keep it very small– under fifty people, including ourselves.

      I’m glad to hear that your fibro is not severely limiting to you. There are, indeed, many other illnesses that can make wedding planning challenging. Fortunately, I only have a couple of them, and fibro was the biggest challenge for me (besides the food allergies!) during my wedding planning, so that’s what I wrote about.

      Cheers!

  2. I was recently diagnosed myself and have also developed severe tarsal tunnel syndrome too. Thank you for sharing your story and the insights. Keep carrying on!

  3. I also would concentrate on wedding plans and being happy than thinkint too much of fibro. I have read about people with severe illnesses that they make the most of their lives and also planning weddings etc. Good idea in my opinion is to make daily action plan list in a weekly calendar and not fuss too much about fibro.

    1. I think I was making some unspoken assumptions that really needed to be spelled out, and I appreciate your having pointed it out.

      My point in this post was, “When you have to think about it, here’s some tips!” and then let it the heck go! PLEASE don’t spend 100% of your wedding planning time focusing on your fibro! Especially if it’s not something that significantly impedes your life. For me, I can’t walk without assistance right now. That’s something I had to think through. And then I went and browsed wedding dresses 🙂

      So thank you for bringing that up. I sincerely hope that you spend more time focusing on being happy and making the most of your life! I like your idea about your weekly calendar/daily action plan. Sounds like you’ve totally got this 🙂

      Cheers!

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