UPDATED Emergency and Surgery Protocol for MCAS and ME

I am reposting this post because I’ve updated my protocol to include some info from my doctor, David Kaufman. There will be another version once I finish my EDS addendum (although there is some EDS info in this protocol, like cervical spine precautions during intubation and bleeding risks, I wanted to separate the bulk of EDS info because it is not something that weighs heavily in my particular case).

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I started writing an emergency protocol back in 2015 when my mast cell reactions were scaring me with their unpredictability. I wanted something comprehensive, in writing, for anesthesia teams in the case of a planned surgery, but also something that my husband could hand to paramedics or emergency room doctors, if I couldn’t speak for myself. It was a massive undertaking because I tracked down every link and reference I could find about medication and surgery precautions for patients with mast cell diseases and ME. I wanted to gather all the information that was pertinent to me — my particular case — and edit it down to something manageable. I put together something passable and then moved it to the back burner for the last 4 years.

Last week I saw a new GI doctor who was emphatic that I get a colonoscopy and endoscopy at the same time and with anesthesia. I have been completely enema-dependent for years and, honestly, it’s exhausting. My previous GI doctor told me it was due to anatomical abnormalities (an MRI found pelvic floor dysfunction with cystocele, rectocele, sigmoidocele) and that I’d likely need enemas for the rest of my life, but it feels like the issues are getting worse and the new doctor didn’t want to throw medications at the problem without knowing exactly what she’s dealing with.

I cannot imagine voluntarily going under anesthesia. All of my worst reactions in the past 7 years have been to medications and my fear of trying new ones — especially intravenous medications — is so pronounced that I vowed only to agree to anesthesia if I was in a life-threatening situation (or couldn’t speak for myself). How could I be lying on a gurney with a peripheral IV, knowing they are about to inject multiple anesthetic drugs and not jump up and run out of the room? I wouldn’t be able to advocate for myself… I could die for a colonoscopy! So, I left the appointment with a sense of doom that only deepened when I started to feel a new ache in my lower abdomen. It got progressively worse over 3 days, the ache turned to pain and, what I thought of as run-of-the-mill bowel inflammation started to seem like something else. Gallstones? Bladder infection? I got out my emergency protocol notes and spent about 20 hours over the next few days rewriting everything, feeling like I might be working against the clock if this was something like appendicitis. Then I woke up last Sunday to such severe lower abdominal pain that I couldn’t move, could barely breathe or speak. I was shaking all over, in a cold sweat, nauseous and felt like I was on the brink of passing out. My husband wanted to call an ambulance, but I said no, hoping it was some sort of spasm that would pass. And it did… but not entirely. The ache and twinging remained for a few more days. It’s gone now and I think it was my dastardly bowels, after all, but it was bad and it scared me. It’s like the gods heard me say, “no way am I getting a colonoscopy” and decided to stab and twist their Elizabeth voodoo doll to make sure I got the point that there’s a problem I can’t continue to ignore.

The upshot of all this is, I finished the emergency protocol and I wanted to share it here, in case it could be useful to anyone else. There are a few important points about it, though:

  1. When I started, it was for personal use and I didn’t keep track of references. I will go back and gather all the links and add them to this article, but I have no idea how long it will take me and I wanted to share this sooner, rather than later. If you see your own information here without credit, please understand I will add a link to your article/blog/website! If you want me to do it asap, feel free to leave a comment.
  2. This protocol concentrates heavily on mast cell precautions because MCAS has caused my life-threatening reactions such as anaphylaxis and profound hypotension. It does not mention ME or CFS, although I researched and included ME resources, such as Dr. Lapp’s recommendations (Appendix E of the Primer for Clinical Practicioners).
  3. I have an EDS diagnosis (Ehlers-Danlos Syndrome — a connective tissue disorder), which can cause serious surgical complications. There are a lot of guidelines out there for EDS patients and, as yet, I have not researched any of them. It wasn’t until recently that I started to take this diagnosis more seriously and I still haven’t had the gumption to jump down the research rabbit hole, but, once I do, I will be updating my surgery protocol with any additional EDS precautions that are pertinent to my situation.
  4. It bears repeating: This is not medical advice of any kind. This is my personal protocol, for my personal situation. You may be more or less reactive than I am, you may have normal or high blood pressure or you may be far more disabled and need many more accommodations… But, I hope it can be of use as a jumping-off point. Please consult with your doctor.
  5. The link below is a printable pdf file, which is formatted properly, but if you need it in a different format so that you can copy and paste certain parts into your own protocol, don’t hesitate to leave a comment or email me at akaemilo@gmail.com, and I will send you a Word doc or Google doc version.

 

Click below for the full long version of the protocol:

Updated Elizabeth Milo Emergency and Surgery Protocol

 

And here is my medication chart. I used the Mastocytosis Society guidelines and edited it for my own personal history:

Medication chart Emergency Surgery Protocol

 

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The future might be the past…

I’m going through a rough(er) patch. My body is scaring me because I can’t find any cause for recent episodes. One of the good things these past few years, is that I can usually pinpoint a reason for reactions and downturns. Even after the last horrific night I suffered with apparently no reason (it was last November, during my Dad’s very short visit and I couldn’t blame it on overdoing it because I didn’t), I started spotting late the next day and–light bulb!–it was my period coming a week early (I can have terrible reactions on the day before or the first day of menstruation).

When my husband called 911 on the first day of my last period (both my MD and ND said that my body had gone into shock), it was the first time I’d had such a bad collapse with vitals bottoming out since 2010 — since before I was sick! Then, 5 days later, I got a tingly tongue and lip during IVIG and then a hive on the base of my throat. I realise it was a tiny reaction compared to what so many mast cell patients go through (a week later, a friend of mine went into full-blown anaphylaxis during her IVIG infusion and then somehow got the guts to try again the next day with the same batch –that put my experience into perspective), but the thing is, except for one small hive when I tried Xanax in 2013, I hadn’t had any hives since being in full-blown anaphylaxis 17 years ago! And that place–a hive in the suprasternal notch– was always the position for a systemic red alert, for something I ingested, as opposed to benign contact dermatitis.

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Then Saturday evening, my tongue swelled up for the first time in 7 months for no reason that I can figure out. I had tongue swelling a few times last year, but I could always explain it (dental work, sauna, vancomycin). Even more concerning, it’s still swollen now, 45 hours later and that’s very unusual. I took Benadryl the last 2 nights, squirting it onto the affected area of my tongue, as I’ve been told to do (this is also unusual for me–I am extremely judicious with Benadryl, only taking it when absolutely necessary) and the swelling still hasn’t resolved. I can’t remember another time it lasted this long — maybe, again, 17 years ago during anaphylaxis.

Then yesterday afternoon, I was hit with vertigo after spending too much time on my feet, preparing food. Vertigo is rare for me and is a big red flag. It’s very different from dizziness and I don’t think it has anything to do with blood pressure. I went to bed for a while, hoping it would resolve, but, when I got up, I was still slamming into walls, as if I were walking the hallway on a lurching boat. The last 2 times I experienced vertigo were 5 months ago during–shocker–my period and a year ago on the morning we were leaving for California, after killing myself the day before to finish packing. I thought it might be something to do with my neck, which always has issues, so I used heat, then my cervical traction device, then an ice pack. I think it helped; the vertigo had mostly abated by the time I went to bed.

But…

A few hours after I went to sleep, I woke up with horrible shakes and chills and drenching sweats. My BP was low (but low-normal for me: 80/50), HR was a little high, temperature was 96 degrees, and O2 was 95%. It was 7 terrible hours that felt viral, like when I first got sick, but was probably mast cells, what with the swollen tongue and all. I finally got up to do that thing that other chronically ill people might understand: put on clothes in case I had to go to the hospital. On a normal day, I might sit around in my dressing gown with unbrushed hair all day, but when there could be a chance I’m going to the hospital, I try to make sure I’m not naked. I also make sure I’m not wearing anything I care about — I’ve lost clothes in the hospital before.

Strangely, I had almost an identical episode on this exact day last year. Here’s a screenshot from my calendar:

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After the most stable autumn and winter I’ve had since being sick, this downturn–this piling on of relatively rare, red-flag symptoms–scares me. My sleep has gone to hell in the last few weeks, which compounds everything by stealing energy and increasing pain. Plus, I’m exacerbating things by holding tight to my “best winter yet” narrative and by fighting so hard to maintain the level of functioning I’ve had this past year, rather than pulling way back and resting aggressively.

My ND says the naturopathic philosophy is that you will go back through previous stages of health and experience earlier symptoms as you travel the healing journey back to where you once were. I’ve latched onto this theory to anchor myself and dispel some fear. The resurgence of all these old symptoms means there has been a shift in my system — but maybe it’s a positive shift, even though it doesn’t feel that way. I’ve gained weight since starting IVIG, over 8% of my norm, which is not insignificant, especially on someone as small as I am. I’m at my heaviest since being sick and, although I’m not overweight, I’ve lost muscle tone the last 7 years and I don’t have the physical ability to burn fat and build muscle, so I hope this trajectory doesn’t continue. My doctor thought this, also, pointed towards a shift in my body: maybe I’ve started absorbing nutrients better. Acne is coming back a little, too. Maybe my hair will grow back! Or the next thing will be that I’ll catch a cold for the first time in 8 years… (And because I really don’t want this to happen, no matter what it might indicate about a calming immune system: knock on wood, toba, toba, spit over shoulder: patuey.)

But, as I lie here, shaky, with my swollen tongue, chronicling these last few weeks (minus the osteoporosis diagnosis and extremely elevated post-antibiotics SIBO test results, both of which I’ll have to write about at a different time), none of it feels like a positive shift and I worry about what I should eat so as not to add to mast cell reactivity and whether I should stay in bed and lie still, even though longed-for Seattle sun is streaming through the windows and I’d love to make some breakfast and sit at my table watching Riley lounge in the grass, soaking up the rays, and the hummingbirds diving around our feeders.

First 911 call since being sick.

We had to call an ambulance this morning for — are you ready for this unbelievable fact? — THE FIRST TIME SINCE I’VE BEEN SICK (absolutely sick and disabled by M.E.; I was fully functional with MCAS for a decade beforehand). And I need the help of all you big brains to figure out the mechanism behind what happened. This is a long post because I want to track exactly what happened. I appreciate your reading this and your thoughts.

My main question is: What can cause sudden bradycardia and loss of consciousness, but not significant hypotension (nor hypertension)? Here’s the back story:

I have a history of anaphylaxis and it almost always happened during my period, usually on the first day, usually after drinking alcohol. I also have a history of collapsing at the start of menstruation, this happened many more times than the full-blown anaphylaxis and often seemed to be triggered by a bowel movement in the morning. The collapsing we’ve called vasovagal syncope, the theory being: vagus nerve triggered by bowel pressure + very reactive day = collapse. I sometimes lost consciousness, but I always was immobile, grey pallor, yellow lips, glazed-over, unfocused eyes, covered in sweat, heavy breathing, hypotensive, bradycardic. What was NOT typical of vasovagal syncope, according to doctors, was that my body didn’t bounce back: my HR did not rise to compensate for the low BP and my BP didn’t come up once I was supine. It usually resulted in ambulance trips to the ER for fluids and at least once I got IV morphine for severe dysmenorhhea (I can’t have any morphine-derived meds anymore).

These were my main health issues before M.E., I felt normal otherwise and pretty much blew them off. Incredibly, they haven’t happened since becoming sick in 2011. My dysmenorhhea actually got much better. Since being sick, I’ve often had bad mast cell reactions and worsening of ME symptoms on the first day of my period, but no collapsing with my husband terrified, calling 911. I thought it was because I’m more conscientious about hydrating and salt-loading.

I was spotting yesterday. My period came on in earnest in the middle of the night, but what disturbed my sleep repeatedly was a viral feeling of sick chills every time I changed positions. Chills and shakes enough to wake me. Then the period cramps started, much, much worse than normal, incredibly painful on the left side. The only thing I could think was maybe it was a ruptured ovarian cyst. I was moaning and crying out with the cyclical cramps, trying to find a position that eased it, my dog Riley clawing at me and burrowing under my body to help. My husband got me a hot water bottle, 2 acetaminophen and a benadryl. Then I took a turn for the worse: I was shaking badly, became nauseous, very weak, drenched in sweat (all the symptoms listed above). We took my vitals: BP was 86/49 (low, but normal for me), temperature was 97 (low, but normal for me), oxygen 96, but my HR was 48 — very abnormal for me. I’m usually 68ish at rest.

My husband got me apple juice in case I was hypoglycemic (it was too much of an emergency situation to check my blood sugar), salt water for my blood pressure, and started to call 911, but I said no. What could they do? Besides charge us thousands of dollars that we don’t have. I’d taken the 2 medications I could take, I could give myself fluids at home with my safe saline, and I didn’t want the two of us sitting around in a building full of flu and measles for hours on end, waiting for blood work and a vaginal ultrasound that would show nothing. But I kept getting worse and knew I was about to lose consciousness (even though I was still in bed and hadn’t even tried to stand up). I was starting to be unresponsive, so my husband called the paramedics.

By the time they got there (3 emergency response vehicles, 6 EMTs!), I’d come back from the edge a bit and was able to talk. They were concerned with my low BP, but I assured them it was normal for me. They did a cursory check of my heart and were concerned about the bradycardia, but said they didn’t see any rhythm issues. They tried to persuade me to go to the hospital, but I said no and signed a waiver. They didn’t want to speculate beyond dehydration (they pointed out that people aren’t realising how dehydrated they are in the current very dry Seattle Snowpocalypse) and possibly needing tests of my reproductive organs. She said, “It’s alarming to lose consciousness while lying down, it’s alarming how low your blood pressure is and it’s alarming that your heart rate isn’t responding to your low blood pressure.” <– That’s what I want to brainstorm.

It was definitely caused by the first day of my period, as usual, but what is the physiological mechanism? What might typically cause sudden bradycardia? What can cause a low HR + low BP (if you take the paramedic’s position)? Or what can cause a low HR + normal BP (if you consider my BP is normally low)? How does a reaction to my period explain this? Could it be 100% pain-induced? If it’s a mast cell reaction, I would expect a high HR and an abnormal BP. Why would I pass out when I’d been lying down the last 9 hours? Why would I pass out with my BP around my normal? Can a low HR cause loss of consciousness without BP dropping significantly? Is this cardiac syncope? Could I have cardiac syncope without knowing I have heart issues? Or autoimmune autonomic dysfunction? Or, once again, adrenal insufficiency? Does losing consciousness usually make breathing labored?

By the time the paramedics left, I was very shaky, but I knew I wouldn’t pass out and my husband helped me get up and hook up my own fluids. I went to bed freezing, with 2 hot water bottles, all my clothes on, under covers in a warm room and it took hours to stop being chilled to the bone (why was I freezing?). When I woke up, finally warm, my HR was 76 — almost 30 bpm higher! I’m still shaky, have a very bad headache, and my heart is jumpy with some palpitations, but completely different from the half-dead, exsanguinated feeling of the bradycardia.

Any ideas are appreciated. I have a routine follow-up appointment with my GP on Tuesday and I’d like to ask her for any tests that might be important. Cardiac work up?

Lastly, I want to mention that it’s REALLY hard not to believe in retaliatory chronic illness gods — yesterday I started writing my first blog update in almost 5 months, it is incredibly positive (“my baseline is higher! I’m able to do more!” etc.) and I stopped myself from writing my usual “gods, cover your ears” and “knock on wood, toba toba” because I’m stable, I’m not as fearful of being knocked down, it’s superstitious nonsense… and then this happens… the first time in 8 years… It just seems a little coincidental. And makes me sad.

Mast Cell Activation May Underlie Chronic Fatigue Syndrome — Medscape

SALT LAKE CITY, UT — Mast cell activation syndrome (MCAS) may be an overlooked yet potentially treatable contributor to the symptoms of chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS), say physicians who specialize in ME/CFS and its manifestations.

The subject was discussed during a 2-day clinician summit held March 2 to 3, 2018, during which 13 panelists met to begin developing expert consensus guidance for primary care and specialist physicians for the management of the complex multisystem illness ME/CFS, and to recommend research priorities.

“ME/CFS is a descriptive diagnosis of a bunch of symptoms, but it says nothing about what’s causing the symptoms, which is probably part of the reason it’s so hard for it to get recognition. So, the question becomes, What other pathology is driving this illness and making the person feel so ill? I think mast cell activation is one of those drivers, whether cause, effect, or perpetuator, I don’t know,” internist David Kaufman, MD, who practices in Mountain View, California, told Medscape Medical News.

MCAS is a recently described collection of signs and symptoms involving several different organ systems, that, as with ME/CFS itself, do not typically cause abnormalities in routine laboratory or radiologic testing. Proposed diagnostic criteria were published in 2010 in the Journal of Allergy and Clinical Immunology.

Kaufman first learned about MCAS about 5 years ago from a patient who introduced him to the published work of mast cell expert Lawrence Afrin, MD. “I spoke to him and then I started looking for it, and the more I looked, the more I found it,” Kaufman said, estimating that he has identified MCAS in roughly half his patients who meet ME/CFS criteria.

Indeed, summit panel member Charles W. Lapp, MD, who recently retired from his ME/CFS and fibromyalgia practice in Charlotte, North Carolina, told Medscape Medical News, “I see a lot of this. I think it’s one of the many overlap syndromes that we’ve been missing for years.”

Another panel member, New York City ME/CFS specialist Susan M. Levine, MD, also said she sees MCAS frequently. “I suspect 50% to 60% of ME/CFS patients have it. It’s a very new concept.”

In Levine’s experience, MCAS often manifests in patients being unable to tolerate certain foods or medications. “If we can reduce the mast cell problem, we can facilitate taking other drugs to treat ME/CFS,” she said. However, she also cautioned, “It’s going to be a subset, not all ME/CFS patients.”

Clinical Assessment and Laboratory Testing

As discussed at the summit, for patients who meet ME/CFS criteria, the next step is to drill down into individual patients’ symptoms and address treatable abnormalities. Investigation for MCAS may yield such findings among those who exhibit episodic symptoms consistent with mast cell mediator release affecting two or more of the following areas:

  • Skin: urticaria, angioedema, flushing
  • Gastrointestinal: nausea, vomiting, diarrhea, abdominal cramping
  • Cardiovascular: hypotensive syncope or near syncope, tachycardia
  • Respiratory: wheezing
  • Naso-ocular: conjunctival injection, pruritus, nasal stuffiness

Symptoms can wax and wane over years and range from mild to severe/debilitating. It is important to ask about triggers, Kaufman advised. “The patient is usually aware of what makes them feel worse.”

Routine laboratory assessments include complete blood count with differential, complete metabolic panel, magnesium, and prothrombin time/partial thromboplastin time.

More specific laboratory testing can be tricky, as the samples must be kept cold. These include serum tryptase, chromogranin A, plasma prostaglandin D2, histamine, heparin, a variety of random and 24-hour urinary prostaglandins, and urinary leukotriene E4.

For patients who have had a prior biopsy, the saved sample can be stained for mast cells.

Kaufman said that initially after he learned about MCAS, he would only run the laboratory tests in patients with suggestive clinical history, such as food sensitivities/triggers, rashes, hives, temperature intolerance, or chemical sensitivities. “But ultimately, I had patients [for whom] I couldn’t figure out what was going on; I would check, and started finding positives in patients I wasn’t suspicious of.”

So, now he just tests for it in all his patients with ME/CFS. “It’s bigger than allergy,” he remarked.

Treatment May Ease Some ME/CFS Symptoms

Treatment of MCAS involves trigger avoidance as possible; H1 receptor antagonists such as loratadine, cetirizine, or fexofenadine (up to double the usual doses); H2 histamine receptor antagonists including famotidine or ranitidine; and mast cell membrane-stabilizers such as cromolyn sodium. Slow-release vitamin C can also help in inhibiting mast cells.

Over-the-counter plant flavonoids such as quercetin also may be helpful, typically at high doses (up to 1000 mg three times daily). “There’s a long list of medications that either quiet down mast cell activation or block the receptor,” Kaufman noted.

But despite that, without controlled trials, it is difficult to determine the exact clinical effects of blocking mast cells, especially as these patients tend to be taking many other medications. And in the context of ME/CFS, the extent to which suppressing mast cell activity addresses the core symptoms of fatigue, postexertional malaise, orthostatic intolerance, and cognitive dysfunction is unclear.

Kaufman noted, “I think treatment clearly helps with the fatigue because they’re not reacting to everything. It improves gastrointestinal symptoms, so they can eat better…. I have seen [postural orthostatic tachycardia syndrome] improve, but I have to say I also give meds for dysautonomia, so I can’t be sure.”

Lapp said that in his experience, “[Patients with ME/CFS] aren’t cured, but do get better. [Blocking mast cell activity] gets rid of dizziness, fatigue, nausea, and light sensitivity.”

Levine pointed out, “We’re just at the beginning of identifying this patient subset and thinking what makes sense to try…. One thing that’s sure is that the drugs are pretty safe,” she said, adding that when it comes to working up patients with ME/CFS for MCAS, “There only seem to be good things that can happen.”

Long Overdue Update

I think it’s time to write an update. I haven’t wanted to neglect my blog — in fact, I wake up daily thinking about things I’d like to document and share — but I’ve somehow been very busy for what feels like years. My energy is still so limited and, with each incremental increase in functioning, I want to take some of the burden off my husband by cooking my own food, getting myself to appointments or taking care of our dog. It leaves no space for writing. I hesitate to say “no time for writing” because, even as a sick person — even as the person in question — I think, “you have nothing but time!” But I don’t, my window of functionality is still so small. There were months in the past when I worked 70 hours a week and I somehow still had the time to accomplish more than I do now — because my internal engine worked efficiently and my tank held much more gas and was easily refilled overnight. I can imagine my healthy friends reading this and wondering how someone with no job, no kids and no social engagements can possibly feel like they don’t have time to write an update. Maybe, if I manage to complete this blog post, it’ll be clearer.

These last few years, I have put great effort into trying to be an easier human to be around, trying to act like my old self for my husband and when I see people — you know, trying to be one of those “it’s great the way she stays positive and keeps fighting while dealing with such suffering” kind of people. But when you only post the good moments on Facebook and you draw from deep reserves while talking to people to appear perky and mildly engaging, it can cause… confusion, for lack of a better word. Even my closest friends and family obviously can’t see on the outside of me what I assume must be alarmingly salient and sometimes I get concerned that maybe, deep down, they think I’m just living the good life while my husband slogs away at his very physically-demanding job. They have made comments that make me think I’ve never done a good job of explaining this disease and, in fact, sometimes their loving and well-meaning encouragement sounds like they think I need the courage to get out into the world.

There are certain things that take courage in my life– they are all mast cell threats. It takes courage for me to go to places where there are no easily-accessible emergency rooms, like Vashon Island, where our friends live, or in an airplane. It takes courage to try a new medication, knowing I could have a reaction. My experiences with full-blown anaphylaxis and nocturnal mast cell meltdowns have made me fearful of a lot in life — not only of things I’ve reacted to, but typical triggers that have never caused me problems because I always wonder if they’re filling my “bucket” and the reaction is looming behind a blind bend in the road. For example, I may think I can eat just about anything and I love hot weather, but most mast cell patients can’t and don’t. So, maybe a few family members come over on the 4th of July and my period is due (“events” can cause reactions for me, as does menstruation). I’m basking in the sun and I’ve eaten a banana, some cheese, some chocolate that day (typical foods that cause reactions for others). Then the fireworks start and my dogs go into paroxysms of panic, which causes me distress (emotions can degranulate mast cells) and, just like that, the bucket overflows and my tongue swells up and I’m in for a very scary, sleepless night. I think it’s just from hormones and excitement, but maybe without the sunbathing or the chocolate, it wouldn’t have happened, who knows? I’ve been blindsided by this sort of thing too often and it seems, no matter how much time goes by, there will always be a tad bit of trepidation lurking in the back of my mind when navigating the minefield of mast cell degranulation.

So, some things do take courage, yes, but living, doing, experiencing, independence — all the things that ME/cfs took from me — they take no courage at all, they just need a functioning body. My greatest desire is to be traveling or socialising or hiking with my dog. If I was suddenly healed tomorrow, all of your phones would be ringing off their hooks and I’d be asking to crash on your couches as I hopped from Seattle to Oregon to California to Wisconsin to Tennessee to New York to Connecticut to Ireland to England to Germany and hugged you all close and talked your ears off for months on end. If anything, I need to be urged to pull back and conserve my energy because I am my own worst enemy, suffering payback on a daily basis from some reckless endeavor like cutting a thick-skinned squash or shaving my legs. Yesterday, I took Riley and my sister-in-law’s dog on a walk, using my mobility scooter. When I used to take Bowie out, it took very little strength and energy: He could be off-leash, I’d sit on the scooter and watch him eat grass or motor beside him as he ambled along. But these two pups are runners, pullers, criss-crossers and leash-tanglers. Not only did our hour walk sap the majority of my energy yesterday, today I am in pain from head to coccyx from using muscles that I usually don’t. But it brings me such joy, of course, so I’ll do it again.

For about four months this year — mid-April to mid-August — I was probably better than I’ve been since getting sick. But, when my Mum visited last March she said it was the sickest she’d ever seen me. It wasn’t — I think she has forgotten some of the horrors of the early years — but that illustrates just how changeable my health can be in a 6-month period. In general, if I keep my activity steady, I can predict how my days will go. That doesn’t mean I can control how severe my symptoms are, it just means that the worse I get, the less I do each day and vice versa and, if I’m careful, this will usually even out to a higher or lower baseline. In the beginning of my chronic illness, the freefall didn’t slow until I stopped working, then stopped going out of the house and eventually spent most of my time in bed. Slowly, slowly thereafter, my days became more predictable and then, even slower than that, my limits expanded, millimeter by millimeter.

Besides managing my activity, I think the only other thing that has contributed to my improvements are immunoglobulin infusions, which I’ve been doing for three years. But, like I said, I was much sicker last winter while still doing infusions, so you can always assume that those two steps forward will be followed by one step back. Just as long as there is a net profit at the end of the year, I’m content. Not happy or at peace, but I’ll take it.

Anyway, on to the actual update. But I’m wiped now, so to be continued…