Well, I’m a few days late (and more than a few dollars short). I’ve been working on this post for a week while not feeling well, but I’m determined to finish. Invisible Illness Awareness Week was last week and, in an effort to raise awareness, invisibleillnessweek.com has put together the “30 Things About My Illness” questionnaire below. The website offers support to patients and caregivers through articles, podcasts, illness lists and links to associations and resources. You should check it out!
30 THINGS ABOUT MY ILLNESS:
1. The illness I live with is:
ME/CFS. I have other conditions, such as Hashimoto’s thyroiditis, IBS, hypoglycemia, dysmenorrhea, vasovagal syncope, autoimmune angioedema, and chronic headaches but these are speed bumps in relation to the Mount Everest that is ME/CFS. Undoubtedly, all these problems are connected in some way.
2. I was diagnosed with it in the year:
I was diagnosed about one year ago.
3. But I had symptoms since:
ME hit me one night like a freight train around Halloween of 2011 (I can’t remember the exact date). One hour I was fine, the next hour I was in the grips of what I thought was a very bad virus. Chills and drenching sweats lasted all night and… the rest is history.
Years before that, I had dealt with thyroid goiters, anaphylaxis and dysautonomia symptoms, but they were just blips in my otherwise healthy, normal life. ME/CFS changed that.
4. The biggest adjustment I’ve had to make is:
I could say losing my career, my social life, traveling, my income, the future I envisioned… But, really, the hardest adjustment has been a life with minimal energy expenditure: the loss of walking, running, talking exuberantly, emoting, gesticulating… I hate this still life.
5. Most people assume:
Most people assume I’m being antisocial. Most people assume that I worked too much, hit a wall and walked away and am just uncommunicative. Only my family and closest few friends know the extent of what happened to me.
6. The hardest part about mornings are:
The distressing, sinking realisation that I’ve woken up too early (and won’t go back to sleep) and had a bad night. Feeling dizzy before I’ve even opened my eyes. Being greeted with a headache and neck pain before I’ve even sat up.
7. My favorite medical TV show is:
House!! And any real life medical show like Trauma: Life in the ER. I’ve loved that stuff my whole life. They used to show real operations, graphic and unedited, on some show in Ireland when I was young and I loved watching. I’m not squeamish; I always thought I’d be working in an ER.
8. A gadget I couldn’t live without is:
My smart phone. It’s my lightweight connection to the rest of the world: news, blogs, emails, texts, photos, videos and calls. Plus, it has all my meditation CDs on it.
9. The hardest part about nights are:
For the first year I was sick, nights were lonely, terrifying, desperate, viral horror shows. There are not adequate words to describe what my nights were like. Now, the hardest part is the fear that I will not sleep well and will wake the next morning feeling worse.
10. Each day I take __ pills & vitamins.
I usually take about 26 supplements a day (double that for the number of actual pills). Currently, I’m on a vitamin and supplement hiatus, so I am only taking probiotics, magnesium, melatonin, Zyrtec, nasal spray, topical antibiotic cream, and a few times a week, when I have a headache or can’t sleep, I take Tylenol, Unisom, and Tizanidine.
11. Regarding alternative treatments I:
I have tried most of it: acupuncture, massage, craniosacral therapy, reiki, energy healers, meditation, breathing exercises, diet, stretches, Chinese herbs, supplements blah blah blagh. I don’t know what constitutes “alternative”, but I would do anything to get better.
12. If I had to choose between an invisible illness or visible I would choose:
I have a half-written blog post called “Visible Illness” because I look sick ~ or, at least, I look different than I used to ~ and I have caught myself feeling jealous of the “healthy”-looking ME patients I have seen online. However, my illness is invisible in the sense that nobody can see just how bad it is by looking at me ~ especially during the first year, when I pushed through everything to go to work.
Which would I prefer? Neither. Illness is evil and, ultimately, nobody can ever comprehend a sick person’s suffering, regardless of how bad they look on the outside.
13. Regarding working and career:
I never stop dreaming about my next career. I have a different idea every day. I miss working, I miss having responsibility and helping people, I miss being good at something, I miss having the security of an income.
14. People would be surprised to know:
Those that haven’t seen me in a while would be surprised to see that I have gone from an energetic, talkative, happy, demonstrative, busy person to someone who moves very little and doesn’t leave the house. Those close to me might be surprised to know just how black my blackness was this past year and how often I thought about suicide (it took all my guts to write that word. It’s shameful and scary, but true).
15. The hardest thing to accept about my new reality has been:
That I can’t exert energy. That’s it. It rules all else. I can’t find a new job, I can’t make plans for a different life than the one I had imagined, I can’t socialise or cook food or deal with banks or disability or do anything to adapt and move on. I only feel ok if I am flat on my back, not moving. But I keep trying to make progress and those endeavors always cause me to be in pain. And I’m intolerant to painkillers. So it’s a continual try-to-gain-ground-get-knocked-down cycle.
16. Something I never thought I could do with my illness that I did was:
Admit it – admit I was a sick person. Also, there was a time when I wondered if I’d ever laugh again. When the headaches ease up, laughter returns. It’s glorious.
17. The commercials about my illness:
There are none, but there are commercials about fibromyalgia and, of course, they show women able to move freely if they take Lyrica. Imagine the only symptom being achiness! Imagine a pill taking care of it! Sign me up!
18. Something I really miss doing since I was diagnosed is:
See this post. Dancing with my dogs on the beach, eating whatever I want, staying up late, talking nonstop, getting excited, getting angry, having a career, dreaming up future plans, driving myself places, traveling, having financial security… See the recurring theme?
19. It was really hard to have to give up:
I want to say everything in #18, but I’ll change it up and say getting dressed and feeling pretty. I miss a great pair of jeans and make-me-feel-tall boots and thinking my eyes look bright and generally feeling attractive.
20. A new hobby I have taken up since my diagnosis is:
Meditation. I couldn’t live without it now.
21. If I could have one day of feeling normal again I would:
Only one day? So not enough time to go to Europe? Can I plan this day in advance and get my loved ones to come to me? Ok, I’ll assume that’s a yes. Then I would get everyone I love to Seattle in advance and on The Day we would hike, talk, laugh, play games, eat a lot, get rip-roaring drunk, never have to rest and then sleep soundly, deeply, peacefully ~ without a cpap and with my husband and dogs.
22. My illness has taught me:
How under-equipped society is to help the disabled, sick and elderly. It is astounding and harrowing to realise how difficult and time-consuming it is to drive, park, get to a doctor’s office, get home help, get financial help ~ everything! And, when you’re sick, everything costs more, so what happens when you can’t work? I worry about old age all the time.
23. One thing people say that gets under my skin is:
When people say nothing. When friends don’t want to “burden” me with their own problems or don’t contact me because they don’t want to “impose” or don’t text me because I haven’t responded in days/weeks and they think the ball’s in my court or that they don’t want to keep “bothering” me. It is incredibly comforting when someone asks questions about my illness or vents to me about their hardships or gossips about work or continues to let me know they are thinking about me. Once in a while, I would love my husband (and family) to take a break from being the strong caregiver and wallow in a bit of mutual mourning: “This is so fucking unfair! We had dreams and plans! We had only just stopped living paycheck to paycheck! You were so alive and I am turned inside out to see your life force disappearing…” Maybe it’s selfish, but, someone else screaming at the sky would make me feel a little less alone.
24. But I love it when people:
Remind me that, even in this diminished capacity, I am still vital and worthy of being a friend.
25. My favorite motto, scripture, quote that gets me through tough times is:
“As long as you are breathing, there is more right with you than wrong with you.” ~ Jon Kabat-Zinn
Also, my mother once told me she had read that if you have one pain-free day, there is the possibility of being permanently pain-free. I think about this all the time on days like today: Just because I’m having a bad day today, it doesn’t mean I will always have bad days. There will be days again without headaches. There will be days when I can move more freely.
26. When someone is diagnosed I’d like to tell them:
You will improve. That was the first line of an email someone wrote to me and I didn’t read any further, I just closed the computer and wept. I needed to know that life could and would be bearable one day.
Also, I caution anyone recently diagnosed to not read all the horror stories about ME. It is good to raise awareness about the severity of this disease, but, after doing tireless research for months, my fear drowned out what my body was whispering. Stop pushing yourself, rest, listen to your body and believe you will improve.
27. Something that has surprised me about living with an illness is:
How many of us there are ~ in every country, of every age, ethnicity and socioeconomic standing. I am amazed and grateful for how many of us are online, sharing advice and giving support to each other. Sometimes, you lot are all that gets me through.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Not leave me. My husband, family and a few friends have wrapped themselves around me ~ physically and virtually ~ and given me the security that I have SWAT team back-up in this war.
29. I’m involved with Invisible Illness Week because:
I’m quoting Linds: “I think it’s a great way to bring much needed awareness to the struggles others endure. The illness is invisible, not the person.”
30. The fact that you read this list makes me feel:
Honoured. Or honored, depending on where you learned to spell.
Also check out my other blamily members’ answers to this questionnaire: Jess, Marie, Christine, Luminescence, Trisha… Who have I missed? Let me know if you posted this questionnaire to your blog and I will link it here.
I haven’t taken vitamins or supplements in 19 days (except probiotics in the morning, magnesium at night and fish oil here and there). When I wasn’t sleeping, I decided to wash-out everything and, when I saw the Good Doctor last week, she wanted me to hold off on adding them back until I had challenged some foods. So, in the next month, I will be challenging soy and citrus, which I haven’t eaten in a month, and corn, dairy and eggs, which I haven’t eaten in a year. Honestly, I don’t know how I will identify symptoms ~ for no reason, sleep disappears and headaches hit me like a freight train. A few days ago I woke up with all over muscle pain: thick, heavy, stiff, achy, contracted muscles from tip to toe. I started waking up in the night again in a full-body tense stretch, jaw clamped down painfully, neck and back arched. It is coupled with daytime tiredness that stopped me writing, reading, talking… This wasn’t the bricked feeling of ATP running out in my cells, this was pure tired, like I was convalescing. It’s still with me today, but I want to write, so I force myself to sit at the computer.
I hate when old symptoms return. I thought perhaps spine pain and muscle aches were gone for good, but here I am with a new bottle of Tizanidine. I made a list of what could be causing it: Scooter? Adding back legumes? No supplements? Weather? Period? This week has also felt like awfully bad allergies, which shouldn’t be happening at the end of August. I actually had to take my inhaler and I couldn’t wear my cpap last night because my nose was plugged, even after multiple shots of antihistamine nasal spray. My headaches have mostly dissipated, only rearing up when I tweak my neck (which is about every other day; the nighttime muscle contractions don’t help), but I’m left with leaden cotton wool filling my skull and plugging my orifices. It feels like an orange on a toothpick, my neck too weak to hold the bobble head. I’m chalking it up to the weather. Seattle turned into a tropical rain forest this week. The temperature in my room is 74 degrees and the humidity is 74%. I keep saying, “It’s so close!” The only way to describe it.
Some good news: I’ve actually slept relatively well the last 7 nights ~ with only melatonin ~ which is miraculous. I have had a resurgence of mild night sweats for the first time in a very long time. But, we’re going to ignore that and the lack of deep sleep and concentrate on the positives: My current average hours of sleep, average time awake and average time to fall asleep:
Other things I talked about with the Good Doc: She doesn’t feel comfortable with prescribing saline IV infusions, she is thinking about digestive enzymes, she wants to get my vitmain D levels between 50 and 80 (they were 30 last March), and she doesn’t want to do a tryptase test to look for Mast Cell Activation Disorder (MCAD).
If anyone is interested in my elimination diet, she said she thought coconut sugar would be okay (I haven’t quit sugar yet; I’m a junkie) and she wanted me to avoid xanthan gum, guar gum and carageenan. This is virtually impossible using dairy-free products, so I’m not taking it too seriously. My husband spent half an hour in Whole Foods reading the labels of nut and coconut milks: if you want to avoid sugar, cane juice and soy lecithin, you won’t be able to avoid carageenan (if anyone has more info, please tell me!). The best bet seems to be Pacific Almond Milk (which has carageenan and “natural flavor”) and Rice Dream, if you don’t mind the calorie and sugar content (I love the taste, but it’s high-glycemic load causes my blood sugar to crash).
She also wanted me to watch the teas I drink, since this is the only thing I drink besides water. You can get all the info about teas from this FoodBabe blog. Basically, I am trying to stick with Numi, Traditional Medicinals, Rishi (which is even more expensive than the other expensive organic teas) and maybe Choice. I splurged and bought this yesterday: Rishi Turmeric Ginger Loose Leaf Tea ~ how good does that sound for what ails me?! (I reckon, in the good ol’ days, I would have spent about that much on one cocktail, including tip, so I deserve it. I ignored the voice that said, Uh, you have no income.)
Lastly, I saw my endocrinologist for my yearly check-up. He increased my Levothyroxine to 37.5mcg five days a week and 25mcg on the weekends and kept my liothyronine at 10mcg/day. He also thought I should see an immunologist. I didn’t even know they existed. Not that I think they could find anything… except maybe help with my MCAD theory (that’ll be another post).
That’s my update. In a few days, my Mother is coming from Ireland for THREE WEEKS to help us out and take a bit of the burden off my husband. One of my brothers is flying across the country to see me at the end of September and my other brother, the pilot, has a layover here the same week. It’s so exciting! Gratitude today, once again, is for my family. They continually help me, encourage me and remember me.
Last week my friend Z. came by my house with her baby girl and we just visited like (almost) normal people and watched the little munchkin play with toys and pat the dogs. I also got a package from my friend E. in the mail with all sorts of fun things to read and loads of the Extra Strength Menthol Halls lozenges I like. I also got a postcard and what looks like a year’s supply of energy supplements from my friend C. I also got a box full of organic produce from friends of ours who live nearby, two letters from my Father, an Easter care package from my Mother, a phone call from an old friend, emails from my nieces and the list goes on and on.
I have had a remarkably good four days, but my mother thought I was having a not-so-good week because my blog had mentioned how stiff and achy I was. So, to clarify for the readers and for myself when I look back at this post months from now: “good” means the exhaustion, discomfort and pain are bearable – are livable-with. It’s not what I used to be pre-ME, but it’s doable. Billions of people live joyful, fulfilling lives with these issues.
My baseline at the moment is constant fatigue, muscle aches and stiffness, the latter being worst in the morning. I always have pain – mostly in my neck and lower back, the bottom of my spine, and the back of my hips – that whole “hinge” area. I always feel like I have a slight cold. Often this feels like full-blown flu, but, on good days, just a wee head cold without a cough.
Good means I’m not too crippled to move by muscle pain or viral chills or the thickness of inflamed fever. I’m not rendered a squinting, grimacing statue from noise and light intensifying a skull-cracking headache. Good means I can stand up and stoop over, I can talk and interact – not long and not too heartily, but with minimal effort for short periods of time. Good means I feel stronger. This, I’ve discovered, is vital. Not stronger as in muscle strength – it’s shocking how physically weak I’ve become – but stronger in that I could and can handle things better. Just a slight increase in my overall fortitude – as if I could lose sleep and be okay… Or make a meal or have an argument or deal with a (small) emergency and be okay.
It’s a small shift, but it’s freeing because it gives me confidence and hope. It’s the first step towards laughing with gusto, animatedly talking to more than one person at a time, playing with nieces and nephews, hiking, running, dancing, singing… Good means, in this moment, overall I feel happy.