Emails from Ex-Employees

So, I just got a wonderful Facebook message (below in blue) from an ex-employee and it made me tear up in such a bittersweet way… after all this time, to get such a sweet email… It made my heart swell with gratitude and ache with desire to be in the working world again ~ interacting with people, mentoring, doing what I love.

Then it dawned on me that I have an old work email address and I had set it so employees’ emails filtered into a separate folder. I checked and found the other messages below from over the past year (names etc. edited out to protect privacy). I am blown away. I showed these to my husband and we both got weepy. I cared so deeply about every single person, in every restaurant. I wanted the General Managers to succeed and love their jobs. I miss the incredible high of opening a restaurant as part of a team and having those bonds that come from sharing 70-hour work weeks to get the job done. I miss the late-night, blurry-eyed laughter, the constant learning, the opportunity to train and teach. I miss contributing to the world! I wanted to share with you all how great some of the people were at my old company and how warm and fuzzy (and sniffily) I am feeling right now. ­čÖé

“Heeey!! I was JUST talking about you last night… I was asking B. how you were ?? I was also telling B. that I name drop your name a lot at work!! Haha. I’m always like, “if [Elizabeth Milo] was here, this crap wouldn’t be happening!!” Haha. You really were our rock!!! … I just never really had the chance to tell you how much of a positive influence you were to me:) I am forever grateful that I had the opportunity to have you as a mentor, friend, boss. So, thank you!!! Hope all is wonderful in your world:))”

“How are you?? … I’m not sure why I don’t see you around anymore but I hope all is well with you! Miss you lots. Again, hope all is well. Cheers! :)”

“Just doing invoices and you popped into my head. Weird, huh.┬áI still measure myself to the “[Elizabeth],” standard you set. Thank you for keeping the bar high. I think of you often and appreciate all that you did to put me in a position to succeed. I know there was a time when you may have been my only fan and you stood tall for me despite your itty bitty self. It will always be appreciated.┬áI hope to see that smiley face soon. Holler if you ever need me for anything. I owe you.”

“Hello my queen, … Really miss you and think of you often, hoping your energy is coming back to you. Some really delicious food by Chef P. just might help with some of that. Love you lots!”

“I am so glad that I was able to work with you as my boss for so long, I feel privileged that I got more time with you than most of the other GM’s ­čÖé You are honestly one of the main if not the biggest reason I have stayed with this company for so long. I think it’s really important to have a boss that you can trust, get along with and who really knows your position so that they can guide you in the right direction and you always did that for me. I really appreciated that you had a bond with my staff as well as myself and I know it meant a lot to them as well. I know that you have gone to bat for me a time or two and you have always given me honest feedback. There are 3 bosses that have really truly made an impact on me in my working career of 15 years and you are one of them. I can’t say [things are] the same since you took┬ásabbatical… I do, however, feel confident in my tenure and the skills that I have learned along the way. Thank you for being such an awesome boss, resource, confidant and friend. You definitely had a major hand in shaping this company and I thank you for believing in me…. I hope that you are able to relax and have some real “me time”, you deserve it.”

bugs beating heart


Cold War

I’m tempting fate talking about this, but it has been exactly two years since I have had bronchitis and/or a cold (they usually went together for me). I would say, in my old life, on average, I used to get a cold about once a year. I never paid much attention, though. As I’ve said before, it was never a big deal to get a cold and most restaurant employees would have to be on death’s door to miss a shift. I would joke that I might faint or go into anaphylactic shock or grow thyroid goiters, but I wouldn’t catch a cold.

Once I got sick with ME/CFS, I went through my medical records with a fine-toothed comb, hoping to find some clue to solve the mystery of my illness ~ that’s why I know the exact dates of my last cold. I had returned from Ireland a few weeks before (I think now, will that be the last time I am there?) and made an appointment with an allergist to ask about my eye and tongue swelling which had been going on during my visit home, plus a bad episode of pre-syncope. He had diagnosed me with autoimmune angioedema and urticaria by injecting my own plasma under my skin and watching a HUGE welt emerge. Great, I love being allergic to my own blood.

I then worked 11 days in a row and, as the weekend arrived, the bronchitis hit. It lasted two weeks and, although I finally went to the doctor, I didn’t take the antibiotics or steroids she gave me and I didn’t take any days off work. My father visited over the weekend that the infection was tapering off ~ we had a lovely time ~ and then I worked a few more weeks before flying to Virginia and getting sick with viral gastroenteritis that landed me in the ER, getting fluids. A few months later, the flu shot triggered this new life. No wonder that vaccination was the straw to break my immune system’s back! This is the message I want to get out: PAY ATTENTION TO YOUR BODY! HEED THE WARNINGS!

Anyway, there are very thin, very pale silver linings to my situation and I search for them daily, in an endless quest for gratitude and acceptance. This week I think, Two whole years without a cough or congestion or phlegm or wheezing! I try not to think, Yeah, but who cares when I’ve had endless flu for 21 of those months? I would prefer to be sick with bronchitis every day of the year than live with a disease that does not allow you TO EXPEND ENERGY. But I don’t go there. I know one day I will have to contend with a cold on top of ME and, until that day comes, I am going to be very, very grateful that my lungs and nasal cavities are clear.

Dog Days Are Over

Yesterday, I was finally going to write an exciting update about my strength returning, my one good night’s sleep, and the lovely sunny day, but then this happened: I decided to throw the ball for the dogs for the first time since March. They have been starved for Mama play time, so I reasoned a few throws were my first choice over stretches or walking laps around the garden.

One would think that in my sickly state these throws would be pathetically weak, but I’m using a Chuck-it and an extra large squeaker ball and I’m giving it my all because I know I only have a few throws in me. But this Chuck-it is huge and we don’t have enough space and it is always tricky to get a decent lob. Well, my first attempt, flung with all my effort, drilled directly down in front of me instead of in a nice arch away from me… and bore straight into my big beautiful brown-eyed baby’s eye.


This dog doesn’t cry or yelp ever. He injured his back and never made a peep, he just shivered and drooled and couldn’t walk. But the tennis ball today made him cry out and then bolt and kind of run around confused, tail tucked, not knowing where to go. When I got close to him, all I saw was red inside his eye orbit. It looked like his eyeball had been driven back into his head or flipped backwards or something. I had the house locked up, his leash on, my shoes on, my car keys in my hand and my husband on the phone in seconds. I said, “I’m going to the vet. My phone is dead. I need you to call and make sure someone can see him now.” My husband said, “Do you have the strength to do that?” I stopped and sat down on the front steps. I hadn’t even thought about whether I could manage. It wasn’t until I then-when I became still- that I felt the adrenalin like a tidal wave through my body. My legs were jelly, my hands were shaking. I glanced at my heart rate monitor: 125. “I’ll find the strength,” I said. But as I looked at my dog, I realised the red I saw in his eye socket was the inner lid – it’d been completely covering the eyeball and the effect was gruesome. Now that it had retracted halfway and I could see his pretty brown iris, I calmed. The vet could wait until my husband got home.

As I write this, the world is spinning. I haven’t had acute emergency-type stress in my life (luckily) in so long and the feeling is alien. I was mowed over by a speeding epinephrine train and I realised four things:

1. I would be able to handle an emergency. I would be able to mine down deep into my cells for the resources necessary to fight off danger or rescue my loved ones or whatever might crop up… The question is what would (will) the physical ramifications be in the days that follow.

2. I lived with a chronic case of that stress response for YEARS in my job. The feeling was all too familiar. I used to never turn off. There was always a crisis, always a problem, always a fire to be put out (figuratively, not actually, thankfully). And, when there wasn’t an immediate concern, I was looking for one that hadn’t been discovered yet, so I wouldn’t be blindsided. It was a constant stomach queaze, the dull adrenal hum of my sympathetic nervous system stuck in hyper-vigilance, anticipating the next restaurant catastrophe.

3. I, myself, created a lot of that intense stress by being a controlling perfectionist who holds herself to unreachable standards and unsustainable responsibilities. And I still do. It takes work to not blame yourself for getting sick and it takes practice to let yourself off the hook for not getting better. It takes restraint to not take care of the house and it takes discipline to not forge ahead with the life you always wanted. And I try every day to forgive myself for not being the employee, friend, sister, daughter, wife I want to be.

4. I miss it. I miss crisis management and learning how to fix a problem and finding out how to do it better in the future. I miss being an honest adviser, without judgment. I miss jumping into action, making mistakes, figuring it out. I miss being the one that doesn’t need help ~ being the┬árock and the confidant and the reality check for those I love. I’m kind of sick of calm, quiet, peaceful boredom. I thrive on excitement and stress ~ as long as it is a positive atmosphere and a supportive team with a for-the-greater-good outcome. I knew I should have been an emergency room doctor.

Gratitude for the day: no orbital fracture or scratched cornea or dislodged eyeball. Just some pain and spooked tail-tucking. My pup is okay. But the sunny days are over for a while.


Title Credit

“39 year old woman, looks like shit and in apparent hell.”

Today I read a post on a CFS forum titled “disappointed reaction from sister-in-law” which had me fired up in a way that is a rarity since I left my job. This woman had told her family she would not be able to attend a baptism on December 23rd and also be able to come over on Christmas Day to participate in all the festivities. Her sister-in-law asked, “Why? Are you sick?” and then, seemingly fed up with the CFS/ME/FM “excuse”, the sister-in-law decided to educate her on what the disease is and why she should be able to attend family functions. Why? Are you sick? My pulse is racing just typing that. It is utterly reprehensible that this disease is called chronic fatigue syndrome and that it is characterized by “post-exertional malaise” and that all medical tests are relatively normal and that we don’t look as sick as we are. It’s such an unbearable injustice to add this insult to injury.

It’s not just friends and family. I have given up talking to doctors after I realise they have zeroed in on my type-A personality or obsessive tendencies or the sleep problems I’ve had my whole life or the fear of getting sicker. It happens every time. I had a visit with a new sleep doctor today and I talked about my night sweats and then about how I’ve always been a light sleeper. I joked (kinda) that, even in sleep, I wanted to be sure I heard an intruder. Her next questions were about sexual abuse and anxiety and I realised I’d said too much. As a patient, you can’t really be 100% honest – because they’re DOCTORS, their job is to see what you don’t. However, I think the majority of the time patients are pretty self-aware. I had to steer her back. No, no, no, these night sweats aren’t from anxiety – they’re from death taking over my insides so all the fluid in my body is squeezed out of my pores over the course of eight hours. You can’t imagine how much fluid there is in a body. And my sleep problems now can’t be equated to my lifelong insomnia and lack of deep sleep – this year, I am tortured, thrashing, contorting in pain, in muscle spasms, constantly waking, never peaceful. Luckily, in the last three or four moths, I’ve gotten a handle on the sickly night sweats – by realising they were caused by over-exertion and took everything down to the “housebound” notch. But, my point was, I realised there wasn’t much point in recounting my story to this new doctor. She wouldn’t be able to shed any new light and, in fact, it was the opposite: it was a long appointment, it was difficult to tell her everything from the beginning, it was disheartening that she didn’t really say anything about my sleep – which is why I was there – and, in the end, she said she was leaving the practice at the end of the week. Wow. More wasted time, wasted energy, wasted money. But I had to go for insurance to cover my cpap machine. That’s the deal. That’s the racket.

I got off track: Why? Are you sick?

I used to say that I thought everyone in the world should work one week in a restaurant. That it should be mandatory in high school or college for each student to put in a minimum of 50 hours, rotating positions so that you have some concept of what it is all about. I usually would declare this after some moron degraded me or tried to pinch my ass or ordered something without looking at me, without saying please or thank you. And I mean ordered it – as in, gave me an order. I was an actor, so I’d smile through it. But really what I was thinking in my head was, you won’t get to me because I’m smarter than you, I make more money than you and I guarantee I’m happier than you. It worked for a long time. Until, one day, there was no amount of money that would have made me give one more performance.

Fast forward ten years and now I think everyone should spend one week in my house. Or the house of anyone with M.E. Actually, I wish we could all spend a week in a thousand different homes in a hundred different countries, expanding our understanding, knowledge and compassion…. But, this is what I know right now: this house, this disease. I wish the doctors and the friends and the employers and that lady’s sister-in-law could all live with this for a week. And I don’t even mean live with M.E. – I just mean live in the house with the person with M.E.

Let me narrate to you how I feel in the morning, the inventory I take of my body, the pain in my bones as I get up and dress. Let me talk to you about my food choices – what will cause me the least distress, what will help the nausea, what will be the least likely to aggravate the IBS, what I can make (or ask my husband to make) with no grains, dairy, gluten, legumes, or eggs. I will show you how I decide whether I have the energy to shower (involves standing up) or do laundry (involves going downstairs and leaning over) or empty the dish washer (reaching down and reaching up multiple times) or walk in the yard (involves boots, coat, cold, taking steps). I will tell you all day, every day how badly my head hurts and how much my hands ache and how broken my back is. You’ll be able to watch me grimace every time a dog barks and close my eyes when I walk into a room that doesn’t have a dimmer switch and massage my neck endlessly, have trouble getting out of my chair, walk like I’m crippled, cover my ears when the ads come on the tv, begging you to mute it. I can explain how every day I weigh the pros and cons of medications: Will this take care of the pain or give me vicious bounce-back headaches? Is it worth taking so much of this knowing the liver problems it can cause? Will I be able to tolerate the nausea, dizziness and insomnia of this long enough to let the good kick in? Will this help me sleep but not give me a hangover? Will this help my muscles enough that it justifies the bowel intolerance? Is this helping enough to justify the $60 price tag? Is this worth trying even though it suppresses my immune system? You’ll see how carefully I go to different areas of the house, how every trip is calculated: never, ever go from one room to another without taking something that needs to go there, too. No wasted movements. You’ll see how I plan phone calls on my calendar: no more than one a day and none on the days that I have doctor appointments. No wasted energy. And you’ll see how often I have to lie down in the dark and how early I go to bed and how quiet I’ve become. It’s very understandable why doctors would think I am depressed – my hair isn’t brushed, make up doesn’t exist in my life anymore, I have no energy for chipperness and no need to form connections by chit chatting. No wasted words.

Worse than doctors seeing the wrong thing, though, is doctors not seeing anything. I read my records from an appointment earlier this year – in the very sick, dark days – the notes said, “39 year old woman, well groomed and in no apparent distress.” All the fight just drained down my body, out of my feet and into the earth. I felt defeated and limp. I get it, this is how they describe their patients… certain terminology is used… But, if I wasn’t in apparent distress, then… Well, then, he needs to come live with me for a week. Maybe I’ll make him dinner and then we’ll walk around the block and have a lengthy, animated discussion …and then he can watch what happens the next day. He’ll be able to see how I curl up in a ball weeping from pain, unable to speak, unable to move, unable to eat. And maybe he’ll think, Distress is too small of a word. In fact, malaise doesn’t really cut it – and neither does fatigue. How about chronic persecution syndrome? How about post-exertional perdition?

Are we sick? Yes. We’d rather not have to plan every hour and foresee every hurdle. We’d rather not isolate ourselves and lose contact with those we love. We’d rather be at every baptism and birthday and Christmas celebration and dinner date. In fact, given the chance, I’d guess that people with ME/CFS as a whole, would be the life of every party. We’d be the ones dancing, singing, eating and drinking until the wee hours of the morning. Wasting as much energy and as many movements and words as possible. 39 year old woman, dressed to kill and apparently having a ball.