Living with CFS/ME/SEID – Journaling

A new tweep asked me some really great questions today about living with CFS/ME/SEID and it reminded me that I’ve been meaning to write a blogpost on this topic for a really long time. The worst thing about having a chronic, disabling illness like CFS/ME/SEID is that because there is so little data on it, and it’s not even taught in most medical schools, doctors rarely are very good resources for us spoonies once we’ve been diagnosed. So each of us is forced to figure out a way to live with this new reality. Today I’m going to write about the most important tool for me: journaling.

When you are living with a disabling illness, it’s kind of annoying to add work to your day but journaling ended up being the best tool I had for many reasons. First, it provided data for me to go over symptoms and the efficacy of interventions with my doctor (rather than me relying on my memory which, because of cog fog, wasn’t always super reliable). Second, it gave me hard evidence in my disability case of just how impaired my functionality was. Third, it helped me to really figure out how to avoid crashes. One of the defining characteristics of CFS/ME/SEID is called post-exertional fatigue which basically means that the recovery time for an activity is out of proportion to the expected or healthy cost of said activity. I call it a crash. So if I were to go into town and go shopping for a few hours, that’s a very energy intensive thing to do and it might take me a few days to recover from that. And the recovery time is brutal because during a crash you are functioning at a below sick-normal level. Think of having CFS/ME/SEID as being physically bankrupt. When you’re poor, everything costs money. Existence is expensive. Sleep? You’re paying rent for someplace to do that. Eat? You have to pay for the food. Same thing with CFS/ME/SEID except the cost is in something we’ve taken to calling spoons (for this post The Spoon Theory). So if you are living paycheck to paycheck and it takes a couple of days for your paycheck to clear but you have rent/utilities due & no food, sometimes you gamble & write a check, hoping to float it. Sometimes it works out in your favor, sometimes all the checks come in at once and you pay crazy overdraft fees that put you behind for weeks or even months. Well, same thing with being chronically ill. The cost of brushing your teeth, washing your hair, eating – all stuff that “normal” people take for granted – is measured in a very limited number of spoons. So you know when your family wants you to come to do a Thanksgiving dinner, it’s very hard for them to wrap their head around what they are asking of you because whereas they may feel the consequences of Thanksgiving for a day (in terms of energy expended, not calories eaten), you may feel the consequences for several days or even weeks. The holiday season with its weeks of activities between Thanksgiving and New Year’s usually took me months to recover from. And during that several month period I was at subpar functionality FOR ME. So my daily functional norm is half or even a third of what my pre-illness daily functional norm was (and even at my healthiest I was always at 80% of my friends’ functionality). But my crash functional norm is EVEN LOWER THAN THAT. Which is not even livable. Not to mention that because of my poor immune system, I would usually get some sort of infection during my crash (because, of course) that most people shake off in a week at most but for me it would drag on for several weeks. But enough about the experience and more about how the journal helped me to take control of my life. After a couple of years of being at the mercy of my crashes, I bought a page a day calendar and every day I noted the following things:

  1. Functional Capacity Measurement Any time I did anything involving standing up, sitting up in an unsupported position (rather than relying on cushions & pillows to prop me up) or moving my body, I used an egg timer & I timed out how long it took me (and also, how long I could do it for). At my worst, it was really tough for me to stand for 5 m. And the maximum I could move or stand in a day was about 2 minutes. This takes into account: preparing meals, sitting upright to eat said meals, brushing my teeth, washing my hair, even going to the bathroom. This gave me real data on how much I *could* move in a day. It was a GIANT pain in the ass to track this but I have to say that it really helped me to convince my doctors that my situation was serious.
  2. Level of Disability Measurement I created a scale of 1-10 by which I could rate a day by how disabled I felt on that day. I wrote values for each number in the front of my calendar and at the end of each day I would assess my day based on the criteria I’d established. So for me a 1 would be my very worst days when I could not get out of bed, where I was crawling to the toilet, where even holding myself upright on the toilet was so challenging because of my muscle weakness that I considered adult diapers. A 10 was my peak functionality. So that would be the times in my life when I was healthy and I could work full-time, keep up with my errands & chores AND have a social life without having crashes.
  3. Symptoms All of them. Before I would go to see a doctor, I’d look back through my journal and write a list of talking points from most to least important based on instance & severity of symptoms. I learned the hard way that it’s really important to talk to your doctor about as many of the things as possible because first of all your symptom may actually lead to a diagnosis of something that can be fixed. Secondly, it goes into your medical record which is *really* important if you ever have to deal with a disability case. So, yeah, can’t keep your food down? Talk about it. Never-ending Diarrhea? Talk about it. Blood in your stool? You get the picture. In the first couple of years of my illness, I collected diagnoses like some people collect stamps. Every couple of months there’d be a new thing. It wasn’t until my doctors were satisfied that these diagnoses were not responsible for my disability (because I was not responding to treatment by returning to normal function) that they finally, reluctantly, diagnosed me with CFS. This process took years and would have been much shorter had someone told me, on day one, just to journal the f*ck out of everything.
  4. What I ate/what I did You know how everyone seems to believe that diet and exercise will cure you? Well my life is an example of how that is simply not true. Once I realized that I had a chronic, not a temporary, disability, I started trying to address it with so-called “lifestyle factors” (aka diet & exercise). I would try a new diet for a minimum of 3 months and journal symptoms. I tried them all, in a wide variety of combinations. Macrobiotic, vegan, macrobiotic vegan, vegetarian, gluten-free, paleo/ketogenic, raw organic… These are just *some* of the diets I tried. Now granted diet & exercise ARE a factor in my quality of life and the way I learned which things seemed to be most impactful was by journaling what I was eating and comparing it to my symptoms over a several weeks long period. It’s not a perfect or scientific system, because of course a causal relationship cannot be established and sometimes you think, say, gluten is your problem because you felt better at a time when you were doing gluten-free when actually it was just a coincidence, but still in the 7 years I’ve been sick I’ve found which lifestyle habits seem to be the most impactful for me (the for me part is important, and is the reason why this blog is called Your Results May Vary – just because something works for me, doesn’t me it will for you and vice versa). Nothing is set in stone, either, because on a day to day, month to month basis things can change and I have to adjust to those changes so that the habits that work great today may not work this time next year.

So there you have it. I know it seems like a lot of work but I’m really glad I did it because I am much more empowered as a result of all the work. I almost never have problems with doctors not taking me seriously now which was something that happened ALL THE TIME for the first 3-4 years of my illness. I don’t journal to the same extent anymore because I’ve finally figured out how to manage my spoons in such a way that I prevent or at least minimize crashes but journaling is what got me to this place of empowerment and balance in living with chronic illness. I hope this is helpful to you guys. Please let me know in the comments what strategies have worked for you!