#spoonie fairy

[heather-lee-health]

wheelchair reactions

Other and better people than me have written about this before, but...

A few weeks ago, my husband and I went shopping. It was my first non-medical-related public outing in months. It was blissful. ☺️

I was in my wheelchair ♿ (thank God for that reclining wheelchair), and for the most part, people didn't react to it. I felt like a normal person, which was great cause I am a normal person probably. When people needed to react (such as when I went to fitting rooms or went to get my hair cut), they were very polite and accommodating. People are awesome. 😁

One of the moments that has stuck with me, though, happened near the end of our trip at Target. We passed a mother and her young child. I smiled at the child when she saw me, and she smiled back. She then turned to her mom and said, matter-of-factly, "She's in a wheelchair!"

My immediate internal reaction: "Yes, I am!" Cute kid. 😄 Smart kid (she was really very young).

The mother hurriedly hushed her child and pushed past me before I had a chance to say anything aloud.

I'm thinking now about making a sign or shirt to take on future outings which says: "I welcome questions ♿💜 (especially from children)."

Because that mother was trying to be respectful and polite, to teach her child to be respectful and polite and not to pry or draw attention or whatever, and I don't fault her for that really. But there was nothing wrong with what the kid said. I was in a wheelchair. It was a statement of fact. 🤷‍♀️

Being disabled is not a "bad" thing; it's just different, and I don't mind when people, particularly children, are curious about it. I think it's a great opportunity to talk to them about the different ways that people live their lives. I think it would be a lot of fun to talk to children about my illness, actually. 🦄🧚

I know not everyone in a wheelchair feels that way, but I think generally it's uncomfortable to realize that something that provides one with comfort and accessibility might be, conversationally at least, considered taboo to someone else. My wheelchair is a good thing. I'm not embarrassed by it; I would like other people to not be embarrassed by it either.

So. Any ideas on the best way to present that message when I'm out and about? A t-shirt? A sign? To other users of disability aids: what do you do to let others know you're open to having a conversation?

💖💖💖

[heather-lee-health]

why communicating about my chronic illness has been difficult for me

🌟 starring me 🌟

I don't remember normal. Which makes it hard to describe the "not normal" things I experience.

I didn't think it would last. Really, for a long, long time, I thought, "this will sort itself out in the next month or so. No big deal. So what's there to talk about?" (Haha, why yes, I am adorably and naively optimistic).

BRAIN FOG

It can be difficult for me to describe the true nature of my fatigue without going into a lot of detail that sounds really dramatic, but it's also frustrating when it is mistaken for regular "tired." Sometimes, I'd just rather not deal, you know?

I don't want to be a bummer. I don't want to be the sad news in someone's day. (Yeah, yeah, I know what you're going to say, but it's hard not to feel a bit like a bummer when the response is invariably, "I'm so sorry you're going through that. Sad face." Not that I resent that. It can just be sad, is all.)

I don't want people to think I'm unhappy - cause I'm not. Sure, it's difficult some days, but everyone has things in their lives that are difficult and frustrating and that try their patience. Everyone has things they can and can't do.

It's boring to me. I'd rather talk about something fun or gossipy or intriguing or new, lol.

I'm afraid of seeming like an imposter or a fake. The severity of my symptoms varies quite a bit, so I do have some stretches during which I feel fairly well and have some energy, but even then, I have to be very gentle with myself to avoid relapsing. Other times, I can rally some energy for an activity, an event, or a long conversation, and appear quite normal - even energetic - but I pay for it 12 - 48 hours later. In other words, I may seem healthy when people see me, even though I'm not, and I worry about being believed.

It can be discouraging. I know that I have these chronic issues, but before I opened up about them, not very many people did, and I think not telling people served as a form of escapism for me. I could pretend, as long as I was in a conversation with someone who didn't know, that I was a healthy, able-bodied person who could do anything they wanted with just a little effort. That's the dream, right?

It's exhausting. Honestly.

I'm learning, though, to open up and be truthful about my reality. Not to complain, but just to be honest. Does it always feel worth it to set aside the concerns and the anxiety and the denial and put in the effort to share my daily experience and my journey? No. No, it doesn't always feel worth it. But it is. Because this is where I'm at.

Truth is freeing, and it opens doors, and I'll see more of that as I continue down this road. I'm sure of that. 💜

[heather-lee-health]

recipe for perfect Saturday morning

Ingredients:

Midodrine

Puppy

Water

Salt

More salt

Snack

Couch

Shirley Curry

Take med while in bed. Chill with puppy in bed and wait for it to kick in.

Get up and actually get dressed.

Fill water bottle with a mixture of Pedialyte, electrolyte powder, and Himalayan salt.

Get a snack (cheese, dried cranberries, cashews) and cover it with salt.

Catch up on Grandma Shirley Curry's new Skyrim series, the Deadeye Gang, on YT!

Yesterday was a rough day, feeling very ill and braindead - and despite taking my medicine and plenty of water and salt, the neurocardiogenic syncope was still acting up. But today is a new day, and I am so happy right now.

[heather-lee-health]

Poppy

I've been feeling really ill and exhausted this week, so here's some pictures of my puppy.

[heather-lee-health]

New robe, new lipstick, cute puppy.

[heather-lee-health]

I don't know what's wrong today

I'm laying down, and I still feel like passing out.

It's been a struggle today.

I feel so faint.

Faded.

Grey.

[heather-lee-health]

general life update

Just a quick post with some pictures from my life over the last couple months - not specific to my illness.

My grandmother passed away in May. This is still a very sad time for me and my family. I cherish my memories of her. She was a very precious woman and always my role model.

Justin and I took a trip to the Minneapolis and Rochester area for his cousin's bat mitzvah! So happy we got to be there and see family. 💛💛💛

I also bought some new dice for my kobold DnD character. 😆🤓🦖🎲

Poppy got groomed! She's so cute and cuddly. My constant companion through these homebound days.

My sister and me! She's having a baby boy!

[heather-lee-health]

long story short...

I've been sick for four and a half years, maybe longer. I've always tired out more quickly than my peers, even as a child, and I got infections fairly frequently. But in December 2013, I began to feel - as I put it at the time - inordinately tired. By the following spring, I was completely and thoroughly exhausted and had developed other symptoms including muscle weakness, tremors, and nausea.

I managed to continue working full-time because of Justin. He dressed me in the morning, helped me walk from bedroom to bathroom, and often drove me to work - during which time I was able to muster enough strength to make it through the day with difficulty. Then when I got home from work, I would sleep until dinner, wake and eat whatever Justin had prepared, and go back to sleep.

Obviously, that wasn't a sustainable lifestyle as it was extremely stressful, so I transitioned to part-time for a year, and then I transitioned to working from home for another year. I left my position last year due to the persistence and stress of my symptoms and haven't been able to work since then.

I struggled over the course of these four years to get my doctor to respond with the appropriate level of attention given the increasing severity of my symptoms and loss of functioning. I documented over 70 symptoms, including flu symptoms, cognitive dysfunction, pain, gastrointestinal issues, and debilitating fatigue. I bought a wheelchair to help with weakness and mobility issues.

Finally, in 2016, I was referred to a rheumatologist for an evaluation, and I was diagnosed with Chronic Fatigue Syndrome after some cursory bloodwork. Chronic Fatigue Syndrome (more info here) is a diagnosis of exclusion, which means that you have to rule out any other possible conditions before you can be diagnosed with it. This usually means lots of testing. My doctors didn't do any testing other than some fairly standard bloodwork and a blood cortisol test (all of which were in normal ranges). In other words, I shouldn't have received that diagnosis.

I changed doctors a few months ago when I realized that my doctor wasn't taking my case seriously, and I began seeing Dr. Jeff Davis at Prairie Health and Wellness at the recommendation of multiple health professionals and several acquaintances.

I've had trouble communicating honestly and effectively with those who care about me for a number of reasons and have ended up leaving a lot of people in the dark. I don't want to do that. My intention, going forward, is to be more transparent about my illness and to take whatever shortcuts I can to keep my loved ones in the know using my particular (small) allotment of energy. Hence, BLOG.

Thank you each for caring for me. You are appreciated. <3 <3 <3