Tag Archives: hope

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Calling All Angels

I’d give anything to have just enough life force to get out of bed and have a slow, quiet Christmas… eat a small, simple meal… listen to soft, festive music… have an easy, happy conversation… share genuine, memorable laughs… and watch my husband and sister open a few presents without my vision disappearing, my head exploding, my muscles collapsing, my speech slurring, my ears ringing, my brain swimming, my balance shifting…

This holiday season, please send some good thoughts out into the universe for those struck down by sickness… some healing vibes… some positive energy… some prayers for better days…

That’s all I want for Christmas. A massive outpouring of intention, electricity, hope, empathy. A showing of human solidarity so strong that the cosmos crackles with shared intensity… the dynamo hum of a hundred whispered desires – a potency so overwhelming that there is a subtle shift in the atmosphere… atoms vibrating and realigning… Until this huge chronic weight lifts ever so slightly and lets in some spaciousness, joy, and fortitude.

When I feel it, I’ll know it was you and I’ll reflect that energy back into the sky and pray that, maybe for a moment, everyone’s burden eased a little.

Happy/ Merry Christmas to you all. I miss you and think about all my friends, family and blog family daily. X

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Calling all angels,
walk me through this one,
don’t leave me alone.

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30 Things About My Invisible Illness You May Not Know

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:

Myalgic Encephalomyelitis. I have other conditions, such as mast cell activation disorder, thyroid disease, dysautonomia, hypoglycemia, IBS, dysmenorrhea, and chronic intractable migraines but these are speed bumps in relation to the Mount Everest that is ME. 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 11pm on Halloween night, 2011. 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 vasovagal syncope, but they were just blips in my otherwise healthy, normal life. ME 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.

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Fish or Get Out of the Boat

I’m not up for writing, honestly, but I want to track a few things from the last few weeks. The Monday before last I had a follow up with the Good Doctor after 9 weeks. Let me just tell you, I love this doctor. I wish she were an expert in M.E., but she is the closest ally I have in this fight and I feel so confident in her hands. At least that was my feeling leaving her office. Now, looking back, I can’t remember much of what we talked about or decided. I told her I was a different person than I was the last time I saw her (New Year’s Eve). I want to remember that because I feel like hell today and I need to know that there has been progress. On New Year’s Eve I was just starting to feel better after the very low low of December. On Christmas Eve, while the men were in the kitchen, I told my sister that if things didn’t change, I couldn’t imagine going on. I was in such extreme pain and stiffness, that it was difficult to go through the motions of life, let alone find joy in the moments. As I’ve mentioned before, the muscle and back pain were horrid, but the headaches, coupled with the EXTREME noise and light sensitivity, were the main culprits. Well, cut to this last appointment with the Good Doctor and I have had over two months with hardly any headaches and much less pain, overall. What changed? I don’t know. Here are my theories:

December 1st: started Berberine
December 4th: started drinking only filtered water
December 11th: started drinking tart cherry juice concentrate every night
December 17th: stopped the birth control pill
Late December: stopped taking pain killers
January 5th: started vitamin B2 and selenium
January 6th: started cooking (once in a while) with coconut oil

I started feeling a little better on December 26th, but pain continued to lift through January. Sleep was better, too. I have been putting my faith in the tart cherry juice, but, honestly, I think it has more to do with eliminating the pill and pain killers.

Unfortunately, my sleep started to go downhill again and continues to decline. I fall asleep without any problem, I stay in bed 10 to 12 hours, sometimes I don’t remember waking up at all (although, most nights I remember 12 to 15 awakenings), but I hardly ever have proper, calm sleep cycles. I I feel like I am going insane. I was so thrilled the last few weeks that, although my nights were tortured, my days were staying okay. Until this past weekend. Today, I am so tired. I ache all over. I am back to moving like the Tin Man. I don’t recognise myself in the mirror. I think, for the first time in my life, I look older than I am.

The Good Doc’s plan for me is to try valerian for sleep and then move on to Chinese herbs and/or an antidepressant. She is the only doctor I’ve ever seen that uses psychotropic drugs as a last resort. She said, “Cymbalta is great for depression, but you’re not depressed.” I’m not. I’m not sad or hopeless. My mood is actually pretty good (as long as the bad pain stays away). She said, “It can help with sleep, but can cause insomnia, too, and it has a host of side effects that might set you back. So, let’s eliminate all other options first.” Love.

She also said I can try adding legumes back into my diet. I’m going to wait until after my period to eliminate any confounding variables caused from PMS… but, I might not even add them back at all. I have been on this diet for so long, I feel like I should keep it consistent while I try the Chinese herbs and sleep drug.

That Monday I also saw the sleep clinic tech to get a new cpap mask. It’s the most impressively designed mask that I’ve come across yet (Respironics Wisp), but it makes no difference, I’m still awake hundreds of times each night (literally hundreds ~ the sleep study showed I was waking up 48 times an hour). Last Friday, I went to see the rheumatologist I saw a year ago (literally ~ the doc pointed out I was there on the same date in 2012). The first thing he said was, “Why are you here? Chronic fatigue syndrome is an infectious disease.” My brain was so fried, I honestly couldn’t come up with any reason why I was there. I couldn’t for the life of me think what a rheumatologist does. I had gone to acupuncture beforehand and the Master had done a session that was meant to make me very tired so I could sleep well that night. It didn’t help me sleep that night, but it certainly caused me to be half-comatose in the hours after the appointment ~ I was slurring my words driving from acupuncture to the hospital and, after melting for an hour in the waiting room, I was far from the articulate, cogent, well-informed patient I pride myself on being… And the rheumy was a fast talker ~ a New York native, I think, based on the accent ~ and I was the last appointment of the week, so all-in-all, it wasn’t going the way I had planned. I think I said something like, “I’m not sleeping and I think it’s the fibromyalgia-type constant awakenings and I wanted to talk to someone who knew something about this.” He told me about the sleep study that Dr. Moldofsky conducted many years ago (I’ve now heard about this study from every single doctor I’ve talked with about sleep. It must be on every medical school exam) and then he said, “Try amitriptyline. You have to try something. I have patients that would rather limp in pain their whole lives than have knee or hip surgery. That’s fine, but you narrow the horizons of your life.” I know that is exactly how I would be: limping is a certainty; surgery is an unknown and full of risks. The doctor said, “As my father used to say, [for days I’ve been trying to remember the adage he used: fish or get out of the boat, catch something or reel it in, cast or go ashore… something like this].” I replied, “My Dad would probably say, shit or get off the pot.” And that was the end of our appointment.

So, the week’s round-up: After three nights, valerian is making no difference and I’m seriously considering turning to amitriptyline or cymbalta. My period is four days late. My skin is like braille. I’m swollen, tired and achy. BUT, for a few weeks there, I thought I was definitely making progress and that has given me much renewed hope for the future. I can do this. I shall overcome. Plus, every day without a headache is a good day. Pure gratitude!

First colour in the garden. Spring fever. :)

First colour in the garden. Spring fever. 🙂

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Update

My friend asked why she hadn’t heard from Elizabeth in a while, so I thought I’d give a quick update. The good news is, my sleep continues to improve. It is a goddamn miracle. I cannot tell you how poor my sleep has been my whole life and this last year was like someone was intentionally torturing me. I was in bed more than ever, but sleeping less than ever. Unfortunately, I was awake in bed alone, for those of you that might think “in bed but not sleeping” is some euphemism for sex. As you may remember, I have posted sleep graphs from my Zeo that show nights with either huge chucks of “awake” through the night or I wake up over and over again, interrupting the regular, beautiful sleep cycle. The sleep study said my brain woke up 49 times an hour. Maybe, if I got hooked up to all those sensors again, I would still have waking brain activity of which I’m not aware, but I doubt it would be bad. For weeks after my last post about sleep, I was getting about 7 1/2 to 7 3/4 hours a night. The last 5 nights I have slept between 8 and 9 hours each night. But the best part is, the last few nights I have only woken up a few times ~ 2 or 3. My god, that’s bliss. Imagine turning off the light and, 9 1/2 hours later, you’ve had 9 hours sleep. WhawhAAT? This was last night:

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I still don’t know what changed besides drinking tart cherry juice, so, although it has a high sugar content, I will continue to drink it each night with dinner. My real theory, though, is that my sleep is a product of the same thing that has caused me not to write a blog in a while: a quieter mind. When my brain won’t turn off, I want to write everything I think and I never feel peaceful enough to drift into slumber. So, maybe it’s my daily meditation or maybe I’m just tired of the fight, but this is life now and I think I’ve found a tiny bit of quiet. No doctor is going to make a miraculous discovery and this will not be a quick process. I have to rest. Full stop.

Unfortunately, the sleep has not helped my waking symptoms. I’ve actually been feeling worse this past week than I have since December 26th. My pain, achiness and stiffness has increased and my energy has declined. After having virtually no headache for about a week, it came back a few days ago. Wow, does that make a difference in my mood. I can still feel pretty upbeat and functional with all the other symptoms, but the headache decimates me, renders me silent and grimacing. “Decimate” technically means only destroying a tenth of something, right? What would be, say, half of something? Headaches quintimate me? Or septimate me? Would that be destroying 70% of me? Much better.

My Mom told me something that has kept me going lately. In one of the hundreds of articles I sent her, she read that if you are without pain for even one day, there is hope that you can be permanently pain-free. I do not hold out hope for pain-free, but that little gem of information has made me think that there could come a time when there are more pain-free days than crippled-and-crying days.

I’ll leave you all with good news. My period came and went and I didn’t have to take a single painkiller. It wasn’t painless by any means, but it was tolerable. I don’t know why. Maybe it’s the new diet, maybe it’s all the supplements. Also, I am seeing a new doctor this week. The universe sort of conspired to introduce me to him, so I’m heeding the hint and trying one. more. specialist. I’ll let you know how it goes.

Gratitude: For painless days that allow me to laugh and for good nights’ sleep.

irish proverb

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Tears stream down your face when you lose something you cannot replace

I was crying yesterday… I left a massage and drove (myself) home, listening to music, crying the whole way. I told my husband it was just because “I want it to go away. I want to get better now.” However, that was only half true. It’s also because I have felt a little hope these last three days. My headache eased up, my pain eased up, I slept better, I feel more energised, more alive… and I DON’T WANT THIS FEELING TO LEAVE. I know it will… I know this is cyclical… but, right now, in this moment, in this breath, I feel like I could get better. I started crying again today and it was because I realised that I was smiling at a memory of a conversation with E. I was smiling and making tea, not noticing the weight of the kettle. I was smiling and had gotten up to go to the kitchen without noticing how difficult it was to stand. I was smiling and, when I noticed, I started crying… but, I’m still smiling through the tears. Please, please let this affliction be taken away. This feels so good. I am so grateful for every minute of relief. Please let me beat this. I can beat this.

lights will guide you home
and ignite your bones
and I will try to fix you