Tag Archives: autoimmune diet

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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:

2013-01-21_08-28-08_928

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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January 1st, 2013

2012 was the worst year of my life. I realise that is not a very festive and celebratory way to start a new year’s post, but it’s the truth. Having said that, however, I know that if this past year has been my worst, I have been extremely fortunate and had a very blessed life.

On January 1st 2012, I wrote an eight page-long goodbye letter to my husband which included all the details of our online accounts, passwords, paperwork etc., things with which I have always dealt. It also laid out my thoughts about my funeral and asked him to make sure to use my savings to pay for my family and E. to travel from Ireland, if needed. Really morbid stuff.

Thank you for your love, kindness, caretaking, honesty, patience… You gave me everything I’ve ever wanted in a friend, a partner, a husband. I am so lucky…

I had never experienced anything like what I was going through and I didn’t think I’d come through it. At the time, I had been diagnosed with malaria. Never did it occur to me, if I did survive, that I’d still be sick a year later. Never did it occur to me that I might be sick for years and years to come. I work every minute of every day to get better and that is what I will continue to do. Every day, in so many ways, I try to help myself heal:

I wake up slowly, gather my strength, set my intention for the day. I open my blinds so moisture doesn’t collect on the window panes, I turn on my air purifier so it can work its unseen magic during the day. I wash my mouth guard, cpap mask and machine parts ~ yes, every day. I brush my teeth sitting down. I wash my face, pick off the leftover adhesive (from the tape I put over my mouth at night) and apply a calendula cream that helps my skin heal. I put my dry eye drops in and use my antihistamine nasal spray. I make tea with stevia and soy creamer (no sugar, splenda or dairy allowed anymore) and take my first supplements of the day with filtered water (the top rated (cheap) filter by Consumer Reports). I check the temperature and the humidity in the house. My body has no concept of comfortable anymore. I could be feverish for no reason or freezing in the heat. Or sweating face, but icy toes.

I work on the computer for a bit, sitting in front of a light box. Breakfast is a smoothie with flax, berries, and walnuts or homemade granola with fruit and almond milk. I seem to have completely conquered my hypoglycemia by switching from rice milk to almond milk and adding fiber to my tea. Afternoon beverage is decaf green tea, per the Good Doc’s orders. I do any chores I can manage. I try to meditate three times a day. This is forced rest… or preemptive rest. Regardless of how I feel, at the very least, I lie down twice each day for an hour, usually at 1pm and 6pm. I have a room ~ not my bedroom ~ where I have peace, privacy, a small futon, a wedge pillow, blanket, eye mask, headphones and CDs. These meditations are the only reason I can get through the day. If I don’t recharge, flat on my back with my eyes closed, I will start to deteriorate: get shaky, slow down cognitively, become achy, stiff and develop a headache.

yoga room

In between 2pm and 4pm, if I’m up to it, I do laps around my house with the dogs. I’m currently not up for more than 4 times around ~ about 400 steps. I wear a pedometer all day, every day.  I am diligent about keeping my core temperature up. For those few minutes outside, I put on my heated vest, hat, scarf, gloves, Uggs. I never want to go back to the debilitating chills of this time last year. If I feel I have some strength, I do every little thing possible to “exercise” so my muscles don’t decondition any more. I squeeze the squeeky dog ball in both hands. I slowly and carefully scoop dog poop. I focus as many miles away as possible ~ to the skyline or horizon ~ since I spend so long indoors only looking six feet ahead. I breathe deeply ~ consciously ~ to get my dose of outside air. I notice everything: planes tracing lines in the sky… the sounds of our neighbours… plants, birds, trees that I never paid much attention to before. And I am grateful for every step, always silently thanking the universe for keeping me on my feet, for allowing me to have the health I still have.

last leaf

Even if I can barely move, I try to stretch my muscles as often as possible. I soak in an Epsom salt bath (2 cups) for no more than 30 minutes (I am told any more than that and the badness leeches back into your muscles) and then I do gentle floor stretches, as well as my neck traction. I dry my hair sitting down. My lunches and dinners are predictable, boring and really pretty disgusting after months and months on end. No grains of any kind besides oats, no eggs, dairy, legumes, potatoes, tomatoes or cod. No msg, obviously, and I’m desperately trying to cut down on sugar. I add turmeric to virtually everything I eat. If I had the energy to cook, I would be making the most creative and tasty dishes, but, as it is, I rely on my husband and quick snacks: apples, nuts etc. Basically, I eat enough to take my supplements. I drink two tablespoons of tart cherry juice with dinner every night and usually drink ginger tea last thing before bed. I don’t watch tv later than 9:30pm, I practice good sleep hygiene and I never get to sleep later than 11:30pm.

My year felt like one third survival, one third denial, and one third a carefully constructed balancing act. A tightrope walk with no end in sight and any time you fall off, you don’t go back to the beginning ~ you go back much further than where you started. So, you don’t know how far the rope goes in front of you or behind you. Now: Turn that tightrope so it’s vertical. You aren’t walking forward, you’re clinging on with your hands, trying to climb upwards into the clouds… an abyss below you. Just one hand over the other. Don’t look up, don’t look down. This moment, this breath.

Holding onto a rope

2012 Wrap Up:

January: Saw endocrinologist; Mom visited.
February: Saw infectious disease doctor; started seeing a therapist; started meditating.
March: Saw rheumatologist, saw allergist, saw gastroenterologist; started low fat diet; changed birth control pills; eliminated pain killers.
April: Saw naturopath; started gluten-free and dairy-free diet; my friends’ sweet baby A. was born ~ the highlight of this year.
May: Saw second infectious disease doctor; Mom visited; stopped working and left career.
June: Saw optometrist; got CT scan.
July: By best friend E. visited; my sister got a new puppy (my new nephew); dear friend of the family’s, M.B., died.
August: Started seeing the Good Doctor; saw chronic fatigue “specialist”; started automimmune elimination diet.
September: Started acupuncture; saw sports medicine doctor; had sleep study done; Dad visited; became housebound.
October: Got brain and cervical spine MRI, Mom visited; brother T. visited.
November: Saw obgyn; started using cpap.
December: Brother A. visited; sister and J. visited for Christmas; dear old friend, D.H., died far too young.

This was my year. I know there is a big world out there with a lot bigger things going on, but this was my year. Doctors, tests, symptoms, setbacks, births, deaths, revelations about myself, revelations about our bodies, grief, joy, fear and more grief. And I know: it could have been much, much worse. What I see when I look at this is: my brothers, sister, mother, father and best friends all came to visit me. They journeyed across the city, country or world to my house to support me. In doing so, they healed me. I am very lucky. I am very blessed. With this kind of support, I can be the rock again. I will feel like I can weather any storm again. Maybe that’s what the new year will bring. I will notice everything, consider anything, expect something, but fear nothing. Welcome, 2013. You’re going to look very different from last year.

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“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.

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An Update on my day-to-day…

Here is an update for those of you that have tried to contact me. I’m okay. Not great, but okay. After the Worst Headache, I had an up-swing for two weeks, feeling like I had more energy, less pain, more mobility and JOY. Today is day 14 of the subsequent down-swing. I have been struggling. I’m in constant pain, which gets worse in the evening. I have a headache and sore throat every day, my neck and my lower back are stiff, inflamed, screaming. There are jolts up and down my spine. My hands ache, my jaw is tender and I don’t even recognise my eyes anymore. Sunken and puffy, swollen, red, dry and circled with purple. I’ve had a hard time getting out of bed in the morning, I’ve only been able to do my stretches every other day, I’ve only been able to do 2 to 6 laps of the house, I’ve been walking somewhere between 1,000 and 2,000 steps each day. I haven’t been sleeping very well and my deep sleep keeps dwindling (according to the Zeo). However, I’m still walking, I’m still talking, I’m still sitting at a computer, I’m still bathing myself and making my way around the house. I’m still breathing. Focus on the positive!

I continue to use the CPAP, but I’m still having difficulty. The nose pillows-with-tape-over-my-mouth routine allows me to move around in my sleep and rest my head on its side, but I wake constantly from the air inflating my cheeks or traveling around my gums. It is the weirdest thing. I will wake up because there is a worm of air crawling its way along the outside of my bottom teeth. It will journey along my gum line in the front of my mouth and find a tiny outlet between my lips to whistle its way out. Or, I will awaken with one cheek suddenly puffed out, ballooned with air. Or, my whole mouth will inflate so I look like a chipmunk ~ with a mask plugging my nose and tape over my mouth, I expect my ears and eyes to bulge out like those squeezy rubber dolls we played with as kids.

Also, the tape is wreaking havoc on the skin around my mouth and the inside of my nose is raw and sore. None of that happens with the full face mask, but I can’t turn on my side without it moving, air escaping and me waking. Unbelievably,  the former situation is the lesser of two evils. Far fewer mask parts to wash, too. The washing of the CPAP parts is a huge ordeal for someone with ME. It is not an easy chore and almost negates the better sleep I am meant to be getting. The dental device that my father recommended costs $600 – $800, which I would spend if I could be guaranteed it would work. For right now, I just don’t have the energy to tackle a new appointment with a new dentist to get a new device.

The last few nights I have awakened in the throes of the full-body flex that I have talked about before. It’s as if there is an arc of electricity going through my body: back arched, toes curled, arms and legs rigid, hands in fists. I have thrown my neck out this way before. I now wonder if a muscle relaxant taken before bed is the answer for this. I’ve taken 1mg of melatonin a few nights this last week and I think it might help a little (or maybe it’s the placebo effect), but not enough. I should have taken my GP up on the offer for Ambien or Traxodone or Flexeril, but I’m such a scaredy-cat. It has to stop, though. I don’t think I’ll improve without pharmaceutical intervention. I’ve been taking tylenol with codeine every day the last few weeks and it’s not very effective at the low doses I like to take ~ plus, it gives me a kind of hangover. On Monday, I start Cymbalta. Duh duh duuuhhhhh….. Please don’t let me chicken out. I need to try something. My doctor said to expect to feel crappy for the first few weeks. But, in theory, it should help with the chronic pain, sleep and anxiety.

I continue my no-dairy-no-gluten-no-eggs-no-most-grains diet. I enjoyed starchy veg and popcorn over the last week, but, starting today, I am removing them from my diet again. I might be removing rice and/or oats, too. I am going to talk to the Good Doctor about that on Monday. After a lecture from my husband about what systemic yeast overgrowth might look/feel like, I am also going to try a little more diligently to cut down on sugar in all forms ~ fruit juice, dried fruit, Theo chocolate bars, agave syrup in my granola, cane sugar in my almond milk etc.

I sit here looking out the window at my husband in the garden, pruning our plum tree. He is tireless. Even when he has no work, he never stops working. He rakes leaves and mows the lawn and scoops poop. He shuttles me to and from appointments, does the shopping, cooks dinner. He washes dishes, hoovers, puts on sheets. In the past few years, he has rewired the house, replumbed the house, put in under-floor heating, cleaned out the rat shit and reinsulated the attic, built a second bathroom, expanded the first, built a shed for a new water heater and installed it himself. He landscaped our whole garden with an expertise that knew what it would look like in years to come ~ if he planted certain shrubs, trees and flowers in certain places at certain times of the year, given time, it would be a masterpiece. He built and tends the vegetable garden, he repaired our chimney and built me a porch with a little heater so I could get some daylight in the winter. He deals with his own physical problems and health issues and never complains. My brother called him a saint. My mother called him a hero. I call him a life saver. Without a shadaw of a doubt, I wouldn’t still be here without him. Gratitude is too small of a word.

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An update for everyone…

I am still feeling stronger than I was a month and a half ago, but still so much worse than two and a half months ago. My energy level is holding steady. I’m able to walk 2,000 – 3,000 steps and have about 12 usable hours each day. I’m able to do house chores, work on the computer, watch TV and read. I’ve walked seven laps of our house the last two days and been able to play a little bit with the dogs. The last time I got hit by stronger pain and fatigue was when I cooked a meal that had me standing in the kitchen for an hour, chopping veg etc. That took its toll.

My pain level has also been steady since the Worst Headache. My muscles ache, my joints are stiff, my neck is always in pain, my head always hurts to some degree, but, in the last two weeks, I have not been immobilised, I’ve not been reduced to tears of helplessness. However, I do keep resorting to Solpadeine (acetaminophen/codeine). Not a lot ~ a quarter to a half of a dose to take the edge off ~ but, I’m aware that the longer chronic pain goes untreated by long-term pharmaceutical therapy (ie: drugs that change brain chemistry, like antidepressants or anticonvulsants), the harder it is to get on top of the problem. So, I have to stop the Solpadeine and start experimenting with long-term solutions.

My sleep is still poor. “Unhygienic”, as the doctors like to say. Sleep hygiene is very important! I have switched to the “nasal pillows” with the CPAP. It’s the mask that shoots straight up your nostrils as opposed to covering your nose or covering your nose AND mouth. It has a much lower profile, fewer parts, more minimal headgear, so it makes sleeping on my side much, much easier. But, if/when you open your mouth, a hollowing wind pours out. The air going up your nose comes straight out your mouth rather than going down your throat. You can feel your uvula flapping and it makes you kind of choke. I keep waiting for a colony of bats to fly out of my mouth… or a high-speed freight train. It’s like Charlize Theron sucking the soul out of those girls in that awful Huntsmen film… Or, even better, the dude in The Green Mile sucking the bad stuff out of me!! Anyway, with the nasal pillows, I have been taping my mouth closed with athletic tape. Yes, it’s true. It worked wonderfully for the first few hours, but, what you don’t know is, when you put tape over your mouth and go to sleep, you DROOL. A lot. Or maybe it’s the humidified water coming through the nose and condensing at the lips… Either way, it wakes you up and, when you pull the tape off, on top of hurting your delicate facial skin, you dribble and your mouth is all wet. Gross. They have chinstraps to keep your mouth closed, but, honestly, I can’t take one more strap around my head. Someone suggested I wear swimming goggles to stop my eyes from being dry and burny in the morning, so imagine this: Zeo headband, mouth guard, swimming goggles, CPAP mask, chinstrap, and tape over my mouth… Really?

Physically, my eyes are swollen and bloodshot (I think it is actually the pressurised air drying my eyes from behind ~ from inside ~ because there is no leak on my mask blowing up into my eyes), inside my nose is raw, ears are plugged and my throat is sore. All from the CPAP. Other than that, I’m having IBS issues again. I think it is because of the iron supplement and also because I have been adding back foods I haven’t had in months. Which brings me to my diet…

I am in the middle of a very long elimination diet. It’s been ten weeks since I eliminated all legumes, grains (except oats), dairy, starchy veg, fatty meat (kinda), eggs and tomatoes. And I’ve been gluten-free for seven months. So far, I have “challenged” myself with dairy, eggs, rice, tomatoes and sweet potatoes. I think rice, tomatoes and sweet potatoes are okay, but I am going to continue to eliminate dairy and eggs. After eating dairy, I became extremely exhausted ~ that indescribable inability to move or speak… So, I am going to re-challenge dairy and eggs down the road. Corn is next to be added in (oh dear lord, I can’t wait for popcorn) and then beans…

I’m back to acupuncture and using the light box, but still haven’t started Lyrica and I’m still waiting on supplements (besides iron and vitamin D and B). After talking to Z, my best friend here in Seattle, my goal is to be able to celebrate a teeny, tiny Thanksgiving. We spend every year at Z and her husband’s house and now they have a new baby. I was going to tell them that I’m not doing holidays this year, but she said, “What if we brought the mountain to Mohammad? We could come to your house and only stay as long as you’re up for it. Maybe an hour, maybe the whole afternoon and early evening…” I’m scared because I know I will want to put a bunch of effort into it ~ cook, clean the house, interact, talk, laugh, play games etc. ~ but, if I can hold myself back and relax and just think of it as a visit as opposed to THANKSGIVING, I should be okay. It made me want to cry that she would want to keep the holiday spark aglow and cart the whole family to our house. Good friends stick by you, even in housebound sickness.

I became sick exactly one year ago this week. I left work exactly six months ago last Friday. I will never stop trying to get better, I will never stop looking for my next career, I will never be okay or content with this new life, but I think maybe I’ve reached acceptance. And, for that, I am grateful. Emotionally, I’m calm. I have a lot of fear, but I’m not depressed, anxious or despairing. This is it. One day at a time.