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…


7 thoughts on “Long Overdue Update

  1. Lindsay says:

    Yes. To all of this. I’m fortunate that I’m able to work most days and go out in the world (at least in my city) and can reliably expect to be able to function most days. Certainly there are exceptions (like this migraine today), and I’m symptomatic every day, throughout the day, but I’m not bed bound.

    But I still get nervous anytime I go somewhere, especially by myself. If I walk into a Target, am I going to faint while I’m there? If I eat something new at a restaurant or friend’s house, am I going to get sick? Can I go walk around downtown and not end up with a migraine the next day?

    I can totally relate to the amount of courage it takes to try a new medication. I resist trying the new medication for a month or two because I’m so worried about the effects. Some days I can eat peanut butter without any problems. Other days I react to it, and there’s no way to tell which kind of day it is. I’m the same with other foods as well.

    Big hugs to you. I look forward to reading the rest of the update.

    Liked by 1 person

    • Lindsay, you too — thank you for commenting, even though I’m bad at replying. I read every one and appreciate the support more then you know.

      Your descriptions made me think — it’s akin to a heist movie or something. Remember that scene in Jason Bourne when he’s teaching his girlfriend how to take in every detail of the hotel lobby? That’s us going somewhere — where are the exits, do I have phone service, who could help me in an emergency, where would be the best, least-disgusting place to lie down/collapse, is it too cold or warm, is there handicapped parking, how many steps to the door, how many steps to the loo, should I sit on the outside of the table, can I bring my own food, where are the smelly aisles, do I have medications, is there access to water, how quickly can I get home, where is the closest ER ??? etc. So many things to consider.

      I actually had no idea you had random reactions to foods. I am very, very grateful I don’t have many or, at least, I can ignore most (whether that’s smart or not, I don’t know, but I don’t need eating disorder thinking on top of everything else). xoxo


  2. Dave says:

    Glad you posted. It had been a while and that’s always worrying with CFS.

    Liked by 1 person

  3. Jak says:

    I’m happy, happy, happy that you’ve had a good few months 😀 These good patches are vital for keeping up hope that we *will* see sustained improvement and knowing how sick you were last year I’m thrilled that you’ve managed to claw your way back.

    You’re so right about how difficult it is to strike a balance in terms of ‘sick’ behaviour around our loved ones. It’s no fun to be around someone who moans all the time or constantly talks about being ill, but OTOH if we never tell the truth it gives a false impression of our situation. If you admit to how you feel they think you’re depressed, if you put on an act they think you’re not as sick as you make out to be and just need encouragement to get out into the world – you really can’t win.

    Totally relate to living in fear – do that every single day of my life :-/ I was petrified to eat a bowl of cereal last night. I’ve never reacted to said cereal but I was hormonal, exhausted, haven’t been sleeping and was terrified it would overflow my histamine bucket.

    Great so hear your update and look forward to the next installment xoxo

    Liked by 1 person

    • Jak, you’re so good to write such wonderful comments even when I’m shite about responding. It really means a lot to me.

      You’ve hit the nail on the head. Often I think I share too much — definitely with my husband. I’m very open about when I think life isn’t worth living, not in a suicidal way, but in a logical “let’s do the maths, does the bad outweigh the good and how long can I bear this” way. But, on the flip side, I’ve had a lot of people say things like I must be “overwhelmed” or “stressed” by the idea of making plans or “worried about going out” or I just “need to do it.” FFS.

      I really appreciate that you shared about your random fear of cereal one night. Yes, exactly. That’s how I was with chocolate the other day. Never had a reaction, but there were so many other mast cell stressors happening, who knows? xoxo


  4. Ooh, feeling you on this. But I’ve found the concept of ‘usable hours’ helps explain things so much better, even just to myself. We just don’t have as many hours available to us even when we aren’t ‘doing anything’. And everything takes three times longer. 😉


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s