Ten Ways to Simplify Your Life with a Chronic Disease or Disability

Enjoying art Downtown Albuquerque

Although written for patients like me, these tips are also useful for the able bodied or anyone struggling with physical or mental health issues.

I’m mostly bedbound, 22/24 hours a day. I survived a 1992 skydiving accident which crushed my sacrum and caused Cauda Equina Syndrome, but that is not why I’m bedbound. My nerve pain worsened, this turned out to be two rare, incurable syndromes, lumbosacral adhesive arachnoiditis and central neuropathic pain (from a benign spinal cord growth at T4, chest level).

It took me years to accept my diagnoses and looking back, these are the things I wished I’d implemented much sooner. I personally found ketamine infusions helpful for the intractable pain. These tips are also meant for caregivers and family members, whose support cannot be underestimated!

1. Medical Records: keep all medical records in a binder with tabs, include discs with MRIs/CT scans. This is a separate binder from medical bills. It ought to contain all your lab work, follow ups, letters from medical providers, radiology and other reports. Use seperate tabs for specialists and keep a few blank sheets to jot down questions, notes and dates for phone calls. Have one sheet with all your primary care and specialists’ phone numbers.
2. Workouts: create a simple workout you can do from home, or at a gym at least three times a week. The keyword is convenient, because if your yoga class is too far away, or the class too strenuous, your body will suffer for it. I even moved so I can independently use my power wheelchair to get to a heated pool, five minutes away. Adapt. I do a ‘sitting warrior’ pose from my wheelchair pillow, and mimic ‘standing tree’ by lying down. Most importantly, don’t overdo it, since that may lead to Post Polio Syndrome (muscle atrophy from working atrophied muscles too hard).
3. Medications: use weeklong medication boxes, if needed with three to four slots per day. I have seven prescriptions and take my meds at seven AM, noon, four PM and bedtime. I asked my primary care provider to prescribe baclofen, gabapentin and lisinopril as 90 day tablets. That saves a lot of pharmacy errands and refills. You could also try mail order. Once in awhile I forget to take my medications on time, but having three weeks of prepared boxes helps. Ask your provider for Millenium Pharmacogenetic testing for 40 different medications and you will find out how you metabolize, for example, opioids and muscle relaxants.
4. Vitamins: Keep it simple. I take Vit D because labs showed that was low, but I don’t even do a multivitamin. To me there isn’t enough evidence for vitamins unless you have a B12 shortage or scurvy (Vit C deficiency, and yes, scurvy is making a comeback in the US). I take magnesium for the muscle spasms and bowel problems caused by the spinal cord injury, and because I’m almost 50, justify taking calcium citrate with the Vit D. If I could be bothered to repeat a bone density test and magnesium levels, I’ll stop those if they’re normal.
5. Diet: preparing food is hard with pain and fatigue. My pharmacist/clinician believes post exertional fatigue is caused by depleted glycogen, so I eat a banana or yoghurt before my swim. I used to eat gummy worms and Lay’s Lemon chips daily and now prep a carrot/sweet potato/beans/brown rice stew laced with turmeric, cumin, coriander and ginger which lasts me a week. I eat salad, yoghurt, muesli, fruits and vegetables. I drink almond milk, because the bio-industry does not treat animals well. Occasionally I’ll eat a pint of Haagen-Daz, but it is an exception, not the rule. Overall, plant based eating, and having groceries delivered via Instacart has made a huge, positive change for my well being.
6. Relationships: if you have a severe illness in your forties, you either die or you recover. I found out quickly that half of my friends stopped visiting and no longer help with errands and groceries. If you are sick for two years, you’re lucky if you have a few friends left. That’s normal, with our lives diverging. Being chronically ill is a lonely endeavor. And yet, although I still feel lonely at times, having fewer friends means more time and energy for writing and stand up comedy. Unfortunately, couples with one disabled partner have a higher divorce rate. My own marriage did not survive, a blessing in disguise as I would have never become a comedian. So take pro-active steps if you enjoy being married. Ultimately, we have to be self reliant but not forget that it is okay to seek help. For me Cognitive Behavioral Therapy was the most useful psych support.
7. Home: ideally, your home should work for you instead of the other way around. Create a simple, practical layout so cleaning up is easier, especially if a home health carer, a friend or family member helps you. Clutter creates more opportunity to stumble and fall, especially if you have heaps of equipment like wheelchairs, walkers, leg braces and more. For better sleep, an electrical hospital bed seems best, or any electrical bed that can elevate the head and feet separately at the touch of a button.
8. Energy: my time limit for writing is around an hour, in my hospital bed, with positional changes. After that my tailbone hurts too much, and my brain shuts down. My limit of sitting upright is 20 minutes, yet I’ll chat too much and forget to check in with my body. I am experimenting with a timer, because I want to avoid flare-ups. Same for too much texting and writing emails. Find out what your own limit is, whether it is 30 or 300 steps a day, and stick to such boundaries for a few weeks to see if it helps.
9. Belongings: clean out your stuff, keep only what you cherish which I bet is only half, or a quarter of what you own. Get organized, get stuff recycled, sold or donated. You’ll have more energy if you never need to search for items. A lot of things may be from better times, like sports equipment. Don’t hang on to it. Downsize your home if you can, and live in a one story or a one floor apartment. Learn to be extremely pragmatic. I’m not there yet, my downfall will always be too many DIY projects.
10. This chronic disease is not your fault: so don’t waste energy by beating yourself up!

With a chronic illness and/or disability, it’s almost easier to operate in survival mode, especially looking at a long to-do list with a body that doesn’t cooperate. After years of struggling, survival mode feels familiar, doesn’t it? Yet I would like for you to try and create some reserve energy. That way you can enjoy a hobby, connect with (an online) community or experience joy. For example, I had a flare-up and so much stress recently, I didn’t enjoy writing, the way desert smells like after the rain, or preparing my upcoming TEDx talk.

Do keep in mind that chronic disease and disability are usually cyclical, so there are days you will feel better than others. You may even experience weeks, months or years of improvement, or decline. Be patient with yourself. And if you can, when you do feel good, or ‘better’, save some energy for unexpected situations like an acute illness, bad news, an exhausting day at work or a doctor’s appointment that takes twice as long. Lastly, you deserve a simpler, happier life so let’s make it happen!