Before I developed chronic pain, I had a host of mental health disorders. Two biggies were dissociation and anxiety. I would bump into people walking around in public, duck out of hallways to be met by a face too flustered to apologize (and not sure to apologize). Not to mention my health was poor in general. I lacked stamina and self-esteem (problems which came back later).
My university offered 200 level and 300 level kinesiology courses in yoga for a required fitness credit. I took three of these required 200 level courses because I loved it so much.
Gradually, through learning savasana and deep breathing through poses, I became more in tune with myself. I began to see the world around me and my place in it. It was easier to not bump into people in public and my posture improved — because I was now aware of how my physical body felt.
Outside of my kinesiology classes, I took yoga at the recreational center daily, and purchased a yoga mat (which has now been destroyed by cats, and I badly need a new one).
I fell out of yoga when I graduated college due to working the night shift, but journeyed back once I developed chronic pain. I found I still remembered many of the asanas and my yoga textbook from college. Surprisingly I was still limber — although the philosophy of yoga is so much more than that.
Right now 45 minutes a day of yoga is helping my pain flare, any more than that is damaging me. I am hoping I can pull out of this okay. Right now the Yoga Alliance is letting online students register with them upon completion of a Registered Yoga School’s program by December 30, and I intend to do just that.
I can throw myself really hard at things, and I’m trying not to do that. Pacing for me is very difficult. Currently I’m reading the Bhagavad Gita as an audiobook and copying my notes from the past two days.
Today, I had to take steroids. For the third time this week I ended up walking around the house using my wedding cane. It was terrible but the steroids helped and I’m keeping my legs elevated.
Another thing about today and the other days of the week I’ve used a mobility aid, whether I’ve left the house or not, I’ve done a full hair and makeup getup, and worn a pretty dress. Yesterday I tried the Pinterest listerine pedicure, which exfoliated my feet but turned them blue, and painted my nails red. I’ll probably stick to Korean feet masks.
Every time I make myself pretty, I take a selfie because of all the extra effort that went into it, especially if it was on a bad day. I am proud of the work it took to doll myself up, whether it’s a pedicure, skincare, an outfit, my hair, my makeup, or a mix.
Going back to being a child, I have found strength in my femininity. Many people denounce selfies as vain, but after my illness, it’s simply me saying, “hey, I did it!”
I’m not looking for attention or accolades. Just the fact that I did it for myself and have something to look back on is enough to help me fight my battle against chronic illness.
My wedding planning book is going through a few iterations right now. I hope to still work with my editor after doing something really really stupid (in a pain flare I should never email people at night). The plan is to focus on mobility aid users and the chronically ill. It casts a wide net. There are many conditions specifically included, but a few from the categories can be chosen to apply to someone whose condition is not specifically listed.
I’m a bit nervous about the rewrite as it’s a blow to my ego, but I have to remember the point is to help people.
I do think this book could be a game changer if I work hard enough on it.
I’d also appreciate comments on whether or not excluding sight and hearing still makes the book marketable, and how much you like the new title.
If you’re interested in helping, email me at firstname.lastname@example.org.
Lately I’ve been getting up at 11pm, 1am, or most recently, 2am, and despite my best efforts, have been unable to fall back asleep. I’ve tried everything from meditation, medication, to alcohol, and I still can’t nod off. Unfortunately I tend to do stupid and impulsive things at night, especially just before dawn. I’ve compiled a list of things for my fellow insomniacs to do while they’re up in the early morning.
1. Read a happy book.
Don’t read anything scary. Not a thriller. Not a mystery novel. A book. A happy book.
2. Try one night cap a week.
I take a shot of whisky when I get really, really desperate. Just one. If you struggle with alcohol I’m sorry I wrote this part and please don’t do this. It doesn’t put me to sleep but it calms my nerves and I actually don’t do stupid things due to my anxiety and rumination.
3. Write something.
I work on my book, The Disability-Friendly Wedding Planner, blog posts, and my 27 memoirs, as well as my running diary.
4. Listen to binaural beats.
These have never in my life put me to sleep but they help with pain and anxiety.
5. Hop on Twitter and make friends.
Twitter is my favorite social media platform. I can spend hours on there discovering new things.
6. Daydream on Pinterest, but only a little.
Pinterest can be triggering for me, so I tend to stay off of it. But sometimes it can be fun.
7. Virtually volunteer.
I virtually volunteer at a few places and get my work done overnight, because I’m going to feel horrible during the day anyway.
8. Play with the doggy.
This is the best part about early mornings. I have an elderly dog, and she’s only active in the mornings and evenings. She sits in my lap, dances around, and acts cute. Unfortunately the affection ends after I feed her at 6am. Gee, I wonder why!
I hope this helps some of you. Insomnia can be a real bear. I haven’t figured out the cure for it yet. We’re all in this together!
Katherine gave me a wonderful love story in her wedding interview – virtual interview Q + A. It was amazing to hear what her husband and she went through to be together. That’s the stuff books are made of ( and I do believe Katherine does have a book – please check out her blog, it’s lovely and very informative).
Katherine was one of my first followers on this blog when it was a wee zygote, and my blog is still in it’s embryo stages. On my last Spoonie Bride post I talked about collaboration. Collaboration can be as simple as supporting someone’s work. So, thanks Katherine!
Now, on to the interview.
Q1. Tell me everything there is to know about your condition & how it specifically relates to you. I have Postural Orthostatic Tachycardia Syndrome (POTS) which is a condition that causes dizzy spells, chronic fatigue and a fast heart rate. These symptoms mainly occur when you are standing up (hence the postural part) and those with POTS fall onto a spectrum with regards to the severity of their condition. I have a very severe form of POTS that left me bedridden for several years.
Q2. What is your wedding story? My husband and I met in our first year and he proposed after just 6 months (he was 18, I was 19). My husband was on a three-year course and I was on a four-year course. We had always planned to get married the year after I graduated from university. However, I developed POTS in my final year and became bedridden almost instantly, so we decided to postpone our wedding until I was well again. When I found out that I had a long-term chronic illness, we had to make a decision on when and how we would like to get married. We decided that we didn’t want to wait any longer as we had been engaged for almost 5 years at that point. We scaled down our wedding plans and I started physiotherapy so that I would be able to walk down the aisle. I planned our wedding in the space of 6 months and made sure that we still had all the little details that we’d originally planned such as themed ring boxes and a chocolate fudge wedding cake.
Q.3 What was your venue, how many did you look at, and what factors did you consider in looking at a venue?
As we only had a short space of time to plan our wedding, we didn’t have a huge amount of venue options for our wedding reception. We ended up booking the venue next-door to the registry office who catered for wedding parties and had a dedicated wedding planner to organise these events. Everything was going smoothly until I disclosed my illness and requirements to the wedding planner 2 months before my big day. Communications were sporadic after that and they didn’t even show up on the actual day! My Maid of Honour even had to take over and organise the cake.
Q.4 Did you require any special catering? Because of my POTS, I am not able to drink alcohol so I arranged for a non-alcoholic alternative for myself. Unfortunately, I was still given a glass of champagne when I arrived. I can’t manage large meals, so we chose to have an afternoon tea style wedding reception instead of the standard 3-course meal so that I could enjoy the food without fear of overloading my stomach. Q.5 Did you have any symptoms on your wedding day? If so, how did you manage? I planned the day to minimise symptoms. I arranged to have the ceremony at 2 pm, a time when I am most alert and my morning meds have kicked in. I also sat down for my vows which I thought would ruin the photos, but they turned out great! Q. 6 How big was your guest list and wedding party? We only had 20 people attend our wedding which included close friends and family. I had 3 bridesmaids and 1 brides-man. My husband had 3 groomsmen.
Q. 7 What was your dress like, where did you find it, and was it a certain way to accommodate you? I wore a vintage 50’s style tea-dress which I had altered to fit me. I had a coloured petticoat added so that it would look nice when I was sitting down to give a pop of colour. Q. 8 What are 3 things you would like a wedding vendor to know? 1. Not everyone is able to have a big wedding. Small weddings deserve your full attention as well. 2. Accessibility and accommodations are not optional and are requirements for everyone to enjoy the day. 3. Be professional. Educate yourself on your client’s disability or illness to better understand their needs.
Jess was kind enough to go over her heartwarming wedding experience with me today. During these troubling times I know it’s hard to carve out space for collaboration, so I am doubly thankful for her getting back to me with my standard 8 questions.
I am hoping the Spoonie Bride Project will be a great collaborative project where all of us Spoonie gals come together for a bigger goal: turning the bridal industry upside-down. After joining the Chronic Illness Bloggers Network, I am thankful for the ability to connect with other bloggers trying to make a difference – most in more nobler ways than I do – and putting me in communication to better realize my loftier goals.
So, thank you, Jess, let’s get on with the interview. Check out her blog please and thank you!
Question #2 was omitted per request.
Q1. Tell me everything there is to know about your condition & how it specifically relates to you.
I have hypermobile Ehlers-Danlos Syndrome. For me, it means that I manage a lot of leg, hip, and neck pain and my ribs and vertebrae subluxate frequently (less frequently after a year of physical therapy!). I’m fortunate in that I don’t dislocate at all and have done enough strength training that I do not require bracing of any joints. My hEDS really affects my gut, which affects my skin a lot, so I am constantly watching my diet to avoid trigger foods that could cause gut issues and acne/eczema. Stress management is crucial for me too because any stressors (good or bad) will trigger pain, gut and skin flares.
Q.3 What was your venue, how many did you look at, and what factors did you consider in looking at a venue?
Our backyard was our venue. I looked at probably 5 other venues but they were all so expensive and many of them had minimum guest requirements. We never wanted a very big wedding and even inviting everyone we would have liked to have there, we wouldn’t have met the minimums. Plus when we realized that the venue money would be better spent doing a lot of the landscaping we already wanted to do to our backyard, we decided that was the way to go. And the whole stress of planning a wedding at an actual venue was too much for me.
Q.4 Did you require any special catering?
We took our wedding party out to dinner at our favorite local New Mexican restaurant. I was able to special order my food so I could (sort of) stay in compliance with my elimination diet, but I didn’t make too many dietary concessions because I just wanted to enjoy my wedding dinner! I paid for it a little over the next few days, but not too bad.
Q.5 Did you have any symptoms on your wedding day? If so, how did you manage?
I was still having some head cold symptoms and a fair amount of fatigue but didn’t have any gut, skin, or pain flares thank goodness! Everyone was really helpful and all I had to do was ask for help if I needed it. We had already communicated well with everyone about how we wanted to keep things relaxed and enjoyable and everyone really stepped up to make that happen.
Q. 6 How big was your guest list and wedding party?
We had 9 people total, not including my husband and I. And we didn’t really define a wedding party.
Q. 7 What was your dress like, where did you find it, and was it a certain way to accommodate you?
I got my wedding dress from JuneBridals.com. It was the only place I could find the wedding dress I wanted – none of the bridal stores in town had the bohemian/fairy tale style I wanted, or if they had it, it was WAY too expensive. I found a beautiful dress that I love for $200 from JuneBridals.com. It didn’t fit perfectly (even though I put in my measurements prior to placing the order), but it worked out really well. My mom had to modify it a little in the shoulders to make it fit a bit better – I have very slight shoulders which makes it hard to find dresses that fit anyway. Not sure if that’s from the hEDS or just my skeleton!
Q. 8 What are 3 things you would like a wedding vendor to know?
I would love wedding vendors to know how to work with a couple to create a calm, small, intimate ceremony. I didn’t get the impression that I could have that with any of the vendors we looked at. There were too many details, the guest minimums were huge and it all felt too commercialized.
So I guess the 3 things I’d like vendors to know is that not all brides want everything 1. overanalyzed and over-planned, 2. HUGE, and 3. Commercial. I just wanted a beautiful space where someone else took care of the decorations, and I could show up in my pretty dress, commit my vows to my husband, and then kick back and enjoy celebrating with a small group of people whom I love.
I like to write songs, and from time to time I think I make a good one. This one hasn’t been set to chords yet – and when it would be it’d be ukulele chords – but this is in 3/4 time and is a little indie pop/jazzy tone to it. Most songs I write are a bit soulful, this one is more whimsical (as it fits the instrument).
If you can imagine ukuleles sounding sad, that’s what I do with my music.
I actually wrote this song feeling happy while hanging out in the living room with my husband, and some melancholy apparently came out.
The Spoonie Bride Project, my largest social media project to date, has not reached a road bump or a stopping place. I am in the process of interviewing 3 Spoonie brides and will hopefully have their info by the end of the week.
I am very excited about all of this. Wedding planning can feel so lonely – especially when you have a chronic illness or disability – and I hope the Spoonie Bride Project helps alleviate that.
Part of the project is to help vendors understand the needs of this base of their clientele. The 8 questions include the final, “What would you want a vendor to know?”
Today please enjoy Holly’s wedding story on Pink Fortitude. She shared it with me and it is a beautiful story. Do enjoy.
Want to be part of the Spoonie Bride project?
Contact me at email@example.com with the title “Spoonie Bride Project [insert your condition here]” and we’ll get the ball rolling with your interview!