Tag Archives: mast cells

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In Amber

A DECADE

A decade since I felt well.

A decade since my body and health were not on my mind. 

A decade since my last cold, flu or bronchitis.

A decade since my last vaccination.

A decade since I enjoyed Halloween, my favourite holiday.

A decade since I was in a lake or ocean.

A decade since I was on a train.

A decade since I stood up at a concert.

A decade since I didn’t wear a mask on a plane.

A decade since I went to a wedding.

A decade since I went to a barbecue.

A decade since seeing so many friends.

A decade since I married my longtime boyfriend because “I feel like something is going to happen to me and I want you to be able to legally speak for me, if I can’t speak for myself.”

A decade since I was in Ireland, in my childhood home, walking the streets of my heart.

I thought about this anniversary so many times in the past. For a long time, I thought there was no way it would come–I couldn’t possibly stay sick this long. Every other illness had a beginning and an end, so, surely, one day my body would recover and this spectre would leave, it was just taking a little longer than the usual virus.

Once I realised it was lifelong, I thought the 10-year mark would be a momentous and heavy occasion. It turns out, it’s not. 2 years seemed much harder to accept. Back when isolation was still harrowing and loneliness still suffocated. You get used to both. It helps if you can develop a deep disdain for humans, so you can trick yourself into believing you’re not missing out on anything. And the 5-year mark was hard. I’d felt small, but miraculous changes from IVIG and then had an epic autumn backslide that year. The dowsing of that little flame of hope was devastating and it was inconceivable that I would be physically or mentally resilient enough to continue the maybe-I’m-getting-better!-Oh-no-what-fresh-hell-is-this? cycle for years to come.

But, then, suddenly, 10 years have passed. I could almost believe the rest of the world is trapped in amber, frozen in time, awaiting my return. As soon as I kick this thing, I’ll drive back down to the office–each street scene melting and returning into motion as my car passes by–and get back to work. Thanks for waiting, guys.

INFECTIONS

What’s far more unbelievable to me is that I haven’t had a muggle illness in a decade. [Please don’t let this jinx me.] No head cold, no flu, no stomach bug, no chest/ear/sinus/bladder/any-other-part-of-the-body infection. The more time that went by, the more ominous was the thought of contracting an acute virus. For years, I had relentless flu-y symptoms–headaches, sore throats, muscle pain, weakness, chills (and still do, sporadically)–and I have many high out-of-range infection titers*, so the thought of another malady compounding the daily slog was harrowing.

*HHV6 IgG; HSV IgM; EBV IgG; M Pneumoniae IgG; S. Cerevisiae IgG; Varicella IgG and IgM; Coxsackie A7, A9, A16, A24, B1, B2, B5 and B6; Anti Streptolysin O Titer, and Candida IgM and IgA. Yes, really.

Three years into my illness, Dr. Chia told us unequivocally that a run-of-the-mill cold could make me permanently worse, so we have always taken great precautions to avoid exposure, which have only intensified during this pandemic. I honestly wonder if I’ll ever be indoors and maskless with anyone besides my husband again. Even worse, will my husband ever be indoors and maskless with anyone besides me? It’s one thing to choose this life for myself–I’ve made peace with only having remote communication with friends and family; I have a partner and a dog to keep me sane–but my healthy husband’s life has shriveled to keep me safe and the guilt from that is indescribable. I imagine if he weren’t yoked to someone at such risk for serious complications from viruses, he might be out gallivanting and socialising, as well he should be.

VACCINES

One of the first doctors I saw after falling ill said, “You are very sick. We don’t know what’s wrong with you, but you should never get another vaccination as long as you live.” I was confused because, until that moment, I hadn’t linked whatever this sickness was to the flu shot I’d gotten a week before Halloween. I was also confused because, in my healthy ignorance, I thought vaccines only bolstered your immune system. I really didn’t understand, in certain unique circumstances, that they could break it. I used to get every immunization available in an effort to protect myself.

Before I traveled to Central America, I was vaccinated for polio, live typhoid, hepatitis A and B, tetanus, diphtheria and gammastan–all on the same day. In the years after, I got the live varicella vaccine, the 3-shot hepatitis B series, measles, mumps, and rubella and, of course, the flu shot every year, along with a pandemic flu vaccine (H1N1) when they were offered. I didn’t get majorly sick while traveling, I didn’t get chicken pox when I tended to my horrifically poxy husband and I never got the flu despite working very long hours in restaurants, among infectious people (note to the public: restaurant staff work when they’re sick; you have to be on death’s door to ask someone to cover a shift), so I guess the vaccines helped… until they harmed.

COVID

There’s such polarization these days when it comes to covid vaccines. There’s a lot of hatred directed at those who are trying to protect themselves and others by getting vaccinated and wearing masks and there is an equal amount of contempt directed at anti-vaxers. I have yet to see a single news story talk about those of us who want to get vaccinated, but cannot. Or those of us who have to make the agonizing decision to live a life of extreme isolation or risk very serious repercussions from a vaccine–any vaccine. I wish individuals would always take the collective into consideration and try to protect those that are vulnerable, but that’s not human nature, unfortunately. People will refuse vaccinations or not wear masks or not get tested because they don’t want to quarantine. And, all the while, those of us with weakened, damaged or overactive immune systems–be it from chemo or old age or autoimmunity or ME/cfs or steroids or stress or another condition–will have to choose seclusion over risk.

Against one of my doctor’s advice, I will be getting the first covid vaccine next month–but I’m getting a pediatric dose. We will see how I do and then I’ll get a second dose and test antibodies. They will be keeping me for observation in the clinic for an hour because of my history of anaphylaxis, but that’s not what I’m worried about.

I’m worried about being bedbound again. I’m worried about volunteering for an injection that could further damage my autonomic nervous system and intensify dysautonomia and hyperadrenergic symptoms. I’m worried about triggering more vasovagal collapses or making myself more hemodynamically unstable. I’m worried about a cytokine storm and/or a mast cell meltdown that creates a permanent worsening of reactivity when I’m already so limited in medication options and trying so hard to keep on weight. I’m worried about a blood clot causing sudden death because IVIG, oral hormones and inactivity already put me in a high-risk category. I’m worried about losing the limited amount of independence and mobility I have now (but it’s enough for a happy life) and becoming too weak to even wash my hair again. I’m worried about being that burden to my husband again, especially now that it takes so much work to make my GI tract function–it would be a monstrous task for him to take on. Mostly, I’m worried about once again losing the small joys, like taking Penny on our scooter walks, being able to talk on the phone for hours and laughing. I spent years without those gifts and I’m not sure I can claw my way back over another decade. 

It feels good to write out those fears. There are very few people with whom I can have these discussions because not many healthy friends understand the risks involved when dealing with such complex conditions. Everyone in my family has had at least 2 covid vaccinations with no side effects, but, in my support groups, it’s a different story. Even there, though, I am careful–I want everyone to get vaccinated, if they can safely, and I never want to dissuade others by voicing my concerns. And doctors aren’t much help because the vast majority take the practical stance that, statistically, the chances of negative repercussions are low and that the risks outweigh the benefits. That’s absolutely true for the typical bell curve of the typical population. Not true for me.

Let’s just hope it’s all smooth sailing. I’d like the next decade to be different.

Update: My doctor pretty much talked me out of getting the C vaccine. I’m too high-risk for long-term reactions. I’m going to have to get surgery next year, so not being vaccinated in a hospital setting adds another layer of fear, but I won’t be stable enough for surgery if the vaccine caused damage. So I will be remaining in strict isolation and putting my life in other people’s hands.

Title Credit

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20-year An(aphylaxis)iversary

20 years ago today (I started writing this on May 27th), I stopped taking health for granted. It would be another decade before life as I knew it abruptly disappeared with the collapse of my immune system and the descent into severe ME/CFS, but this day in 2001 was the beginning of the end of health ignorance and body confidence.

My husband and I were at my friend’s birthday party, sitting at an outdoor table in the dark, chatting, drinking beers, smoking cigarettes. My breathing started bothering me to the point that I mentioned it to my boyfriend (at the time). He put his ear on my chest and said he didn’t hear anything abnormal. But that’s why it got my attention — I’d had many, many chest infections and asthma issues in my life, but this was different, this was like a vice around my lungs. I was smoking, though, so it was easy to explain away. And I was drinking, so I didn’t want the party to stop.

A while later, I went to the bathroom and, when I looked in the mirror, I saw a huge defined rash on the bottom of my face, down my neck and onto my chest. It looked like I’d drawn a distinct outline and colored it in with a bright red marker. I’d never, ever dealt with hives or rashes and I always thought they were blotchy and maybe raised, maybe itchy. This was nothing like that; this looked like a slab of raw steak. 

We decided to go home and, on the way, I called the consulting nurse service at my doctor’s clinic. The nurse asked me if my tongue was swollen and I replied: “Yeah, actually, it’s so big, I’m chewing on it. “ She very calmly said: “Hang up the phone and call an ambulance.” When my boyfriend heard this, he turned around and drove through every red light to get to the emergency room. It was such a weird experience — the triage nurse took one look at me and brought me straight back to get hooked up to an IV. I was drunk, totally oblivious to the seriousness of the situation and then quickly doped up on diphenhydramine and mellow. Before we went home, the nurse said it was the worst case of anaphylaxis she’d ever seen. 

But when you’re young and healthy, it’s easy to ignore these things. It happened twice more before I went to see a specialist and all the RAST and typical allergy blood tests came back negative. I told the doctor that every time it happened, I was at an event or party (after the first birthday party, it happened at another birthday party, an Oktoberfest gathering and an Easter celebration), I had been drinking alcohol and it was the start of my period. Those were the common denominators. I was dismissed by the allergist at the University of Washington Medical Center — he actually threw the Pub Med articles that I had printed out at the library into the trash can in front of me with a flourish — and so I dismissed it, too. They know best, right?

The last time I went into full-blown, classic-presenting anaphylaxis, I almost died. I was a rag doll, carried down the stairs on a stretcher by the paramedics. They kept asking what drugs I had taken, not believing that this was an “anaphylactic reaction to alcohol.” It traumatised my boyfriend and mother. It was the last time I had a drop of booze.

My body, my health, and our lives have never been the same. 20 years of collapses and tests, specialists, diagnoses, treatments and medications, pain, reactions, research, fear, loss of career, social life and hopes for the future. 

I haven’t gone into grade III anaphylaxis (bordering on grade IV that last time) since 2002, but the spectre is always there. Hypotension, heart arrhythmias, angioedema — they’re barely managed and always providing a low-level thrum of unease in my days. I could escalate at any time if you’re not hypervigilant, they say. But I’m not very careful and I like to test the boundaries. I found over the years that the negative effects from hypervigilance just slightly outweigh the fear that is borne of risk-taking, especially when each time I throw caution to the wind and come out unscathed, I gain a little bit of confidence and hope that I’m safe now and it won’t happen again. 

I don’t do parties, though, and I try to keep menstruation at bay with prescription hormones. And I’ll never have another drink as long as I live, even if I woke up healthy tomorrow. My mast cells will continue to find new and creative ways to wreak havoc on my body without my help.

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UPDATED Emergency and Surgery Protocol for MCAS and ME

The links at the bottom of this page are for my protocols that were updated March 29th, 2020. My protocols are for me and my doctors. I am not a health professional and I recommend you do not use any of my advice or guidelines without consulting your doctor. *See full disclaimer below.* My protocol is an accumulation of months of research into precautions that should be considered by people with mast cell disorders (MCAD) and myalgic encephalomyelitis (ME/cfs), as well as some guidelines for patients with Ehlers-Danlos syndrome (EDS) and craniocervical instability (CCI). It includes information and materials from ME websites, such as me-pedia.org, mast cell resources, such as tmsforacure.org, my doctors and specialist, as well as other patients.

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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! Please 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) and Dr. Cheney’s anesthesia letter.
  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 I have only researched some 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 deeply 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 links below are printable pdf files, which are formatted properly, but if you need any of them 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 here for the long version of the protocol, geared towards the patient: Elizabeth Milo Full-Length Emergency and Surgery Protocol

Click here for 1.5-page short version of the protocol, geared towards doctors: Elizabeth Milo Abbreviated Emergency and Surgery Protocol

Click here for anaphylaxis protocol: Elizabeth Milo MEDICAL EMERGENCY RESPONSE PLAN for Mast Cell Activation and Anaphylaxis

Click here for my personal medication chart, based on an original from The Mastocytosis Society: Elizabeth Milo Safe Medication Guidelines

 

Here is The Mastocytosis Society Emergency Room Protocol.

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*HEALTH DISCLAIMER*

This blog is my own personal journey. The information and other content provided in this blog, or in any linked materials should not be construed as medical advice, nor are they intended to replace a one-on-one relationship with a qualified health care professional. NO information on this site should be used to diagnose, treat, prevent or cure any disease or condition.

If you or any other person has a medical concern, you should consult with your health care provider or seek other professional medical treatment. Never disregard professional medical advice or delay in seeking it because of something you have read on this blog or in any linked materials. If you think you may have a medical emergency, call your doctor or emergency services immediately.

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Mast Cell Activation May Underlie Chronic Fatigue Syndrome — Medscape

Mast Cell Activation May Underlie ‘Chronic Fatigue Syndrome’

Miriam E. Tucker

March 13, 2018

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.”

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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…