It’s been an incredibly trying year, and my body’s problems show no signs of relenting. However, I’ve made great progress in managing my disease(s). I’m writing this post to celebrate these accomplishments, and also to share some tips with others who are ill, scared, and feeling helpless. I hope that some of you will share your tips with me, through comments here or messages via my “Ask Me Anything!” page.
Without further ado, here are the best things I’ve started doing for my health this year:
1. Storing Medication in Ziplock Bags:
For months, when my pain and/or fatigue got too bad, I would avoid taking my medication. My boyfriend sat me down one day, asking just what was stopping me from taking my medication whenever I needed it most. I thought long and hard, and realized that my hands were almost always the problem. Opening and closing between three and seven pill bottles when your hands are in pain and hard to control is next to impossible. This problem is compounded when your fatigue levels are high. Once we’d identified the problem, I spent about six months experimenting with pill storage solutions which wouldn’t hurt my hands. Finally, I happened upon the solution which has been a game-changer: I store my pills in collections of well-labeled clear zip-lock baggies.
I keep all of my baggies of daily medications on one binder ring, and all of my baggies containing meds I take less frequently on a different binder ring. Both of these binder rings go into a locked safe (keeping them safe from animals, kids, and even potential theft). My current empty pill bottles are stored in a large plastic bag on the bottom of my pill safe, as proof the classified substances I take have been prescribed to me.
At least, I can take my meds out with very little pain, whether I’m feeling especially sick or not. The baggies securely contain the pills, but are easy to open. The right med is easy to identify because it is visible through its bag, and also because that bag is labeled (with pill name, dosage, and dosing instructions). When I go on a new med, it’s easy to add a new baggie to the ring. It’s also easy to tell by glancing at my transparent bags whether or not I’m running low on any pills. Best of all, if I’m doing so poorly that I can’t go get my medication safe, I can have the safe or one of the rings of medicine brought to me. Before, asking for help with taking out a medication meant that my caretaker would have to read the labels of five to fifteen prescription bottles. Now, I just need one easily-identifiable group of bags brought to me.
My only complaints about my current system are:
- the baggies can become twisted on the binder rings, and
- the puncture holes for the binder ring get bigger with time (meaning baggies need replacement every 4-6 months).
I’d love to hear ideas for how to solve for these issues.
2. Blogging:
Starting this blog has been great for my mental health. It’s given me a sense of purpose, and allowed me to connect with others facing similar challenges. It’s given me a chance to connect with loved ones, and given them insight about what I’m up against. Ideally, some of my posts will also give healthcare workers insight into what their patients are up against, and maybe even call them to action.
3. Joy Journal
I also started something called a “Joy Journal.” I use it to list those things which I’m grateful for, even small things which make my days a little more enjoyable. It’s amazing how much better I feel after listing 20 or 30 things in this journal, and the glow it brings me lasts for a day or even two.[1]
4. Good Secretarial Work:
My illness, my treatments, and my healthcare team are all incredibly complex. My fatigue makes hard work markedly difficult, but when I don’t actively keep track of my healthcare, things fall apart. I’ve found that a couple of secretarial moves save me and my doctors from some headaches:
- I write up agendas for appointments, so I can remember to report new symptoms, ideas, worries, and medication reactions, and to ask the questions I have.
- I keep a pen and tiny notebook in my purse. When my healthcare providers’ instructions start getting complicated, I jot down enough information to jog my memory later.
- It’s hard for me to get out of bed, and even harder to get out of the house. As a favor to my future, frazzled self, I’ve started to create elaborate calendar entries. If I’m supposed to bring something to an appointment, I write that in the title of the calendar entry. If the phone number for my destination isn’t in my phone already, I put it into the calendar entry so I can call if I’m going to be late. If I have never been there, I write out the destination address to plug into my GPS. When I’m running late, I thank my past self for all this foresight.
5. Taking Control of my Healthcare
I took about six months off from actively trying to get better this year, and for a little time I instead wallowed in hopelessness and depleted resilience. I’m glad that I took the time off, because since then I’ve resolved to do everything I can to get better. Despite my fatigue, since I returned to my quest to get better, I have found it in me to start a full-time project management gig: managing my own care. I set deadlines for my providers, asking that they launch their “backup plan” if the first plan hasn’t been effective within a certain period of time. I check in on their progress with tasks and with our larger goals, and make sure that they are sending me to the right places and getting me the right tests on the timeline they promised. I make sure I’m meeting with the right people with the right regularity. All this is making a big difference in the quality of my care. In an ideal world, the work I’m now doing would be done by a professional patient advocate, or by a loved one with a lot of time to spare, instead of by me, a very sick person. For now though, I’m the best I’ve got, and I must say I’m starting to do a bang-up job.
[1] This shouldn’t be entirely surprising; there is a growing body of evidence supporting the idea that positive psychology/focusing on gratitude can increase human levels of happiness. Some of this evidence has even been collected in a scientifically rigorous manner!
The Professional Patient 