01 October 2015

[#invisiblefight] 30 Things

As part of Invisible Illness Week, I wanted to share a relative snapshot of my illness and a bit of what the day to day is like. I can be particularly wordy (despite being a Twitter user ... those restrictive 140 characters), so it was hard to keep my responses to a minimum. But I did my best to not write a novel! (Novel writing is a task for November...)

The meme below is a II Week and Rest Ministries initiative. I tried to answer as candidly as possible, editing my responses in some places but trying to keep what first came to mind. If I were to fill this out tomorrow, I might give a different response -- all of them true. Every question is the tip of an iceburg.

I'd encourage you to fill one out for yourself and to read others' responses. They're little windows into a life that otherwise might remain, well, invisible.

30 Things About My Invisible Illness

You May Not Know

1. The illness I live with is:
ME/CFS (Myalgic Encephalopathy or Chronic Fatigue Syndrome), Irritable Bowel Syndrome (IBS), Chronic Inflammatory Response Syndrome (CIRS), and more recently Functional Neurological Disorder (FND), with additional issues at various stages of diagnosis. (Honestly, answering this question alone is tough. I have a strange relationship with diagnoses and labels.) [Update 5/12/2021 -- See below.]

2. I was diagnosed with it in the year: 
Unknown illness and IBS in 2012, ME/CFS in 2013, FND in 2014 ... and might have another one this year, too. Whew.

3. But I had symptoms since:
My last days spent in rural Sierra Leone in January 2012. We thought it was malaria. Or maybe a parasite. Or maybe a tropical disease unknown in the West. Or maybe ...

4. The biggest adjustment I’ve had to make is: 
Slowing down. WAY down. I have always been very active, an experienced multitasker able to take on many responsibilities. Now that my mind and body can't keep up, I've had to learn to be content with not doing very much at all beyond being myself. Or, when my energy is up and symptoms are temporarily tamed, to do just one thing at a time.

5. Most people assume:
You need a diagnosis to have an illness. For the longest time, I had no diagnosis and people didn't know what to make of me. Why was I sick? What could they call it? A diagnosis can certainly help break the ice, but it can also be a restrictive label making it easy to talk superficially about hard topics. And illness is not "easy."

6. The hardest part about mornings are:
Feeling like a creaky old woman. Everything hurts, and I want to go back to bed! But I try to wake up at a "normal" time if I can, to maintain some semblance of a schedule.

7. My favorite medical TV show is:
Chuck is hilarious and cracks me up with its cheesiness. It's really a spy show, but it qualifies because it has doctors (the main character's sister and brother-in-law, Dr. and Dr. "Awesome").

8. A gadget I couldn’t live without is:
My laptop. A portal to the wider world.

9. The hardest part about nights are:
Finding a comfortable position for falling asleep despite any muscle spasms or nerve pain I might have.

10. Each day I take 13 pills & vitamins.
I used to take about 30. I still sometimes forget to take a dose here and there.

11. Regarding alternative treatments I:
... would not have improved as much as I have today without them. I have two functional medicine physicians and see an acupuncturist and chiropractor. I take some herbal remedies. All of those approaches plus my "conventional" medicines and treatments somehow work.

12. If I had to choose between an invisible illness or visible I would choose:
I'm not sure how to answer this question.

13. Regarding working and career:
I've been on leave from graduate school, but have been on and off persevering to finish my thesis so I can graduate. Some days that goal feels more possible than others. As for career... ask me about that once I've graduated.

14. (Some) People would be surprised to know:
That I'm sick at all. I don't intentionally try to hide my symptoms and am open to sharing, but at first glance -- if you saw me out and about on the street -- it would seem like nothing was amiss. But if I'm out of the house, I usually am on the upswing and my symptoms are relatively under control. But sometimes I force myself to get fresh air despite having much pain and fatigue. And when you don't see me, it's probably because I'm unable to make that walk to the door.

15. The hardest thing to accept about my new reality has been:
The unrelenting uncertainty. With my body feeling as if it's in various stages of rebellion, there is a lot I cannot control. I don't know when my next episode or flare-up might be. I sometimes can't pinpoint the trigger or source of pain. My doctors and I don't know when I will get better (although I AM better than even a few months ago). The last 3.5 (almost 4) years have been a long journey in finding peace in the midst of the chaos and trusting God, the only one who does knows.

16. Something I never thought I could do with my illness that I did was:
Plan (and attend) my wedding during those first months of illness! Walk across the Mass Ave bridge and back after having been bedridden for months! Write 35,000 words of a new novel! Go on a 2 week cross-country road trip with the Tall Man! There are many such milestones that I would not have thought possible with my symptoms. I can't forget them.

17. The commercials about my illness:
There are none. The lack of funding for ME/CFS or FND research is a bigger problem, though.

18. Something I really miss doing since I was diagnosed is:
Going out without thinking ahead about what I might be able to eat, how long we'll be out for, what medications to bring with me, how much energy I might expend, how much time it might take me to recover afterwards... Or traveling overseas for my research or just for fun. I wish I could go back to Haiti, or see the Tohoku region of Japan. But any place where travel is even a bit off the beaten path is out of my reach for the moment.

19. It was really hard to have to give up:
Eating whatever I want. I love trying out new dishes and new restaurants, so it felt like a major loss to have to restrict my diet. Certain foods can be a major trigger for my symptoms, while others are a primary "medicine" to help my body heal -- so I've had to think differently about food and figure out how a foodie can be health conscious, too.

20. A new hobby I have taken up since my diagnosis is:
Writing for fun, writing creatively, writing and writing. I had imagined stories here and there as a child and delved into creative writing in college, but dropped it when the rest of life got busier. So its reemergence has been a nice change and reopened a creative outlet.

21. If I could have one day of feeling normal again I would:
Go hiking. Grab a cappuccino or flat white and sit in a new cafe, savoring the scene. Get on an airplane and travel to one of my bucket list destinations.

22. My illness has taught me:
It's possible to still have a fulfilling and fruitful life while living with illness. Sickness, suffering, and weakness are so often seen as unsavories to utterly avoid at all costs. While I would never wish illness on anyone, these challenges have taught me so much about myself and how to rebuild a life of resilience. I certainly am not the same person I was almost 4 years ago. I'm more ok with suffering and admitting that I'm just not that put together.

23. Want to know a secret? One thing people say that gets under my skin is:
"I know what you mean. I'm pretty tired, too." Honestly, I would be so happy to feel a "normal" tired, the kind felt after working all day or working out or thinking through a complex problem. The kind of tired many with CFS feel is bone weary.

24. But I love it when people:
Are curious and aren't afraid to talk about my situation and ask me questions. I embrace talking about it often without awkwardness (but sure, be awkward!) But I also love when people ask me ordinary things about ordinary life that aren't about health-related matters, too.

25. My favorite motto, scripture, quote that gets me through tough times is:
From the Bible, 2 Corinthians 4:7-9:
"But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed..." No matter how battered I feel, I can still persevere and triumph because of God's strength pulling me through.

26. When someone is diagnosed I’d like to tell them:
You're not alone. Really, not alone. There are others who are on this hard road. Seriously consider a holistic approach to treatment, not just within conventional medicine. Take each day one single moment at a time, and give yourself plenty of grace for what you can and cannot do.

27. Something that has surprised me about living with an illness is:
Other people open up much more easily about the pain and struggles they are going through. It's been really quite lovely to have this vulnerability and to be able to relate, to share, even just to genuinely say and hear, "Hey that's not exactly my circumstance, but in some fragment I get you."

28. The nicest thing someone did for me when I wasn’t feeling well was:
... There are too many to name. But here are some:
_ A friend took time between lab experiments to bring over a cup of chicken soup while I was bedridden.
_ Some friends have kept a list of my food restrictions and homecooked me meals. (One of these feasts was hand-delivered at midnight while I was with the Tall Man in the ER.)
_ One asked a friend on pilgrimage in Europe to pray for me en route.
_ Countless friends and family have done our dishes when I and the Tall Man were at our wits' end.

29. I’m involved with Invisible Illness Week because:
I have been encouraged by it and hope that others can be, too. Because I hope that through initiatives like this, we can better understand what difficult circumstances others are going through and become more in touch with others in a real way. And because I appreciate knowing that others can relate to the pain and difficulties, but also the joys and triumphs of living with illness.

30. The fact that you read this list makes me feel:
Self-conscious yet grateful. Thanks for taking the time to understand. I hope this helps you know me a bit better, and to know that I can relate in some way if you also have an invisible illness.

Peace and cheerios,
P.S. Have a question that isn't listed? Feel free to leave a comment or email me.


Update 12 May 2021

In preparation for sharing my story (or attempting to share my story) on International ME/CFS Awareness Day 2021 and #MillionsMissing Week, I reread old blog posts about my health. In rereading this post, I realized just how much has changed in the six years since I wrote this, primarily my diagnoses. Diagnosis is tough, especially with diseases that are not well understood. They are an attempt at labeling an illness based on observed symptoms, but diagnoses may not be accurate. They can even be damaging in leading to the wrong treatments or lead to gaslighting. I have crossed out the conditions that were misdiagnoses.

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