13 Tips to Simplify Daily Living with a Chronic Illness

Every day can be a struggle with a chronic illness. Even when my husband helped me with just about everything around the house, there were very few days when I didn’t feel the brunt of fibromyalgia in one way or another. Now, with him out of commission, I am feeling it even more.

I have previously written about how I managed grad school with fibromyalgia. And I am using many of the same strategies at my current job. But I have had to “rediscover” some tips to manage the daily chores in a way that eases my growing pain and fatigue now that I have to hold up the fort at home as well.

I have shared them here, hoping they may reach someone who might benefit from them.


In general:

1. Don’t be proud. (If living like a college student is a complete deal breaker for you, you might as well stop reading now!) Seriously though, many a time, it is our pride and expectations of how we should appear, how our house should look, how holidays should be conducted, that make life more difficult for us than they need to be. Try to let go of the allure of appearances, and worrying about how it looks to the neighbors. Focus only on what you need to do to get some semblance of your life back.

2. Prioritize. Start with doing the things that absolutely need doing that day (if that garbage is starting to stink, taking it out needs to be near the top of the list!). Jokes apart, with this general strategy, if you run out of energy before you finish your list, you can stop without too much concern. Let those less important things wait. Trust me, they’ll be waiting for you tomorrow. Unless your fairy godmother steps in and turns some mice into fairy-housekeepers who magically take care of the remaining chores for you! (If that happens, please give them my number!)

3. It’s OK to put off the optional activities if there’s only room for the mandatory. Sometimes the optional activities are the fun “me-time” things, like our hobbies. If so, consider replacing them with equally fun “non-activities” (binge watching Netflix, for example) that help you relax and find peace in a chaotic day. However, if you can move around some less important tasks to make room for that “me-time” activity, don’t pass up the chance!


Groceries and Meals

4. Frozen meat and vegetables. If you enjoy cooking, doing large batches once a week and freezing meals is a great idea. But, that does add to other “intensive” weekend chores, and may not be the right fit for everyone (certainly isn’t for a non-cook like me). So, I turn to frozen chicken, sausage, fish and vegetables. Many of them can be prepared within minutes in the oven, microwave or on stove-top, and they are really hard to mess up! With some careful label reading, portion control and balancing with other food groups, this is not a terribly unhealthy option either.

5. Snack healthy with fruits and nuts. This is easy for me because I love both, but they really are an excellent source of nutrients and perfect for between-meal snacking!

6. Meal delivery services (e.g. Uber Eats). When all else fails, and you simply haven’t the energy to do one more thing, meal delivery services can prevent you from starving. If available where you live, Uber Eats (or other delivery options) can be a life saver!

7. Online groceries. Several places like WalMart and Amazon (Amazon Fresh & Prime Pantry) are now allowing you to buy groceries online, and either picking them up at the store or delivering to your home. It cuts out much of the walking, reaching, bending, standing, etc. that can make grocery shopping hard on spoonies. I think Amazon is kind of expensive for this service, but I feel I am actually saving money buying a list of things I need online at WalMart and having them load the bags into my car at the store. It reduces impulsive buying because I just saw something cool at the store. Rather a neat “plus” for an already useful service!

8. Use wheels to transport groceries. A folding bag or basket on wheels (something like this, for example) can be very helpful so you don’t have to carry a heavy load of bags from your car to the home. It’s a bit more awkward to use if you have stairs to climb, but there are some “stair climbing” options too, like this one.


Hosting & Housekeeping

9. If hosting is too much trouble, take your friends out to eat. Don’t feel obligated to deal with the cleaning, decorations, table and meal preparations, and the subsequent clean-up, if that is not your thing and you know it will wipe you out. This also goes for the holidays; find creative alternative solutions so you can still spend quality time with friends and family, without tiring yourself out.

10. Make as few dirty dishes as possible. Don’t be too proud to use paper plates or just eat out of take-out boxes! Soak “adult” dishes/utensils (or use a dishwasher) for easier clean-up that requires less wrist and elbow grease.

11. Reduce frequency of housekeeping tasks. House cleaning once a week, or alternating between rooms and taking it easy might reduce how much energy is spent on a ritual task that can often take more time and energy than we anticipate (and leave us drained and hurting).

12. Focus on functionality over perfection. Practice the science of “good-enough.” That means the house may not be perfectly clean, the corners may remain dusty, actually a lot of things are probably dusty, but at least I can walk across my floor without the dirt and grit sticking to my bare foot! That’s good enough for me! My clothes are not neatly folded (in fact, if they are not hanging, they are lying in a “dump” on a shelf in my closet), but as long as I can still find what I need, I don’t bother fixing up the closet just to make it look pretty. It’s in a state of “working disorder,” which is good enough for me.

13. Break up tasks. If cleaning takes a lot out of you (as it does for me), try breaking up the different tasks on different days. Dust the books and shelves one day, vacuum or mop the other, clean the bathroom on a third. If a particular cleaning job takes more arm-power (cleaning the toilet or bathtub for example), do that on its own day when you take on fewer other intensive chores.


To be completely honest, these tips have not been enough to keep me from sliding into a flare. I have felt my symptoms worsen despite using the strategies above. However, I do feel they have made a difference. When every little bit seems to take a gargantuan effort, any bit of reprieve is appreciated.

I certainly don’t think I could manage to keep on taking care of my home as well as work full time forever, even using all the strategies I write about. But these tips have allowed me to successfully fulfill the temporary needs of my household, without needing to take at least 1-2 days off from work (that I have not even collected yet!) over a complete crash that pins me to the bed. Essentially, they have slowed my decline, and that was about all I could ask for!

So, if you or someone you know is in a similar spot, and is struggling with daily life as a fibromyalgiac, I hope these tips help them too — at least a little anyway. And if you are a fellow chronic illness warrior with more daily living tips of your own, I invite you to share them in the comments below, so others can benefit from them too!

Gentle hugs,

Fibronacci

How I did Graduate School with Fibromyalgia

Earlier this month, I officially graduated with a Ph.D. in molecular genetics.

It is both relieving and terrifying to have graduated, finally having no set obligations. After the months of intense flares that I was able to tame not all that long ago, I have decided to take a break before moving on to another job. Alas, I still have papers to finish in the meantime, and my future to contemplate, so it will be interesting to see how this break turns out!

But now that I have finally graduated, I feel a bit more confident writing this piece, a list of 10 things that helped me do graduate school with fibromyalgia.

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When you feel trapped . . . but know you’re capable of flight

It is sort of a “Part II” of my Reflections on Graduate School, but with more practical information regarding the management of fibromyalgia, so I hope that it helps a few more of us chronic illness fighters navigate through the quagmire of graduate school. And because many of these suggestions apply in general as well, they may as well be my 10 tips for managing fibromyalgia!


1. Prioritize –  With a chronic illness, you may not be able to do everything you would like. So prioritize what needs to be done first, what is most urgent, and do that first. Work your way down the list of less important things (aka, things that can wait till tomorrow). That way, if you run out of your energy aliquot before getting them done, you do not have to push yourself to do it anyway.

2. Get help when needed (undergrads/assistants) – It can often be difficult to admit you need help, and then put forth the effort to train people under you, and supervise their work. But with the right, reliable person, this can be a lifesaver! It takes some work to switch from the “doing”  mode to the “managing/supervising/mentoring” mode, but those are extra skills you have the opportunity to learn! And it is win-win on both sides: your student learns some new stuff, maybe even feels a taste of independent science (depending on their level of experience), and you get to rest your body a bit, while still working your brain!

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How fibromyalgia helped me be a better mentor

3. Make your work area as comfortable as possible – If you spend a lot of time at your desk, it helps to create an ergonomic workstation – which, of course, is a dream on a grad student salary!  So I have a pillow on my high-back office chair (both hand-me-downs), and a heating pad against my back, to help me sit “without” pain. I also have a small box under my desk, and a blanket. The blanket is for the extra chilly-feet days. As for the box, I often put my feet up on it so I can recline, and be comfortable at my desk. I realize it is not necessarily the best posture at all times, but (perhaps unfortunately) in my mind, pain relief trumps all else – and it really feels so good to stretch my legs out comfortably on the box! I also have a TENS therapy unit at work. I am not 100% sold on TENS therapy, and it looks ridiculous to be twitching or jerking if someone walks in, but I’ll try anything when I’m desperate! A friend also let me have an ergoBeads cushion to rest my wrists while typing. I am not frequently wracked with wrist pain, but I am grateful for anything that may prevent it!

4. Seek working solutions for cognitive problems – I am perfectly aware how cognitive dysfunction can get in the way of the smartest of people. Unfortunately, brain fog has struck me at some of the most inopportune times as well. I do not have a solution for every time this happens, but I have written an article before on how to manage brain fog so you retain sufficient brain function on a day-to-day basis. I hope that provides some ideas on this point!

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As any self-respecting scientist will tell you, the solution to brain fog is of course COFFEE! (Do not believe them blindly)

5. Slow down – One way of minimizing brain fog is to slow down and take it at your own pace. I know that in graduate school we are conditioned to feel guilty for slowing down, and not all professors even tolerate it enough to let us continue. I was very lucky by that measure. I had a project that could sit in the freezer overnight (or even a few days) if needed, and a prof who did not kick me out for doing 10 AM to 6.00-7.00 PM days. I am ashamed to admit that for about a year, when I was on physical therapy, I worked part-time (<8 hours) two days a week, though I tried to make it up sometimes over the weekends whenever I could. I don’t think my boss has been too happy about it necessarily, but I have tried to be as efficient as possible during that time, and finished all my responsibilities on time. I feel like slowing down was my #1 key to even continuing in graduate school, though I frequently worried about coming off as “lazy” or “unmotivated.” But the truth is, my motivation to continue doing science is what convinced me to keep the reduced hours. The alternative was to not do it at all. I wrote more about this topic in a previous post whose title says it all I think: Slow and steady stay in the race.

title_ _Brain-body problem_ - originally published 10_1_2010 - Jorge ___
The sub-conscious can be a good motivator, but try not to let it bully you!

6. Use flexibility well – Flexibility is a double-edged sword. If you are working independently, and do not have an overbearing boss, academia offers more flexibility than any other situation I can imagine. This is great on those really bad days when you absolutely need to stay in bed. Assuming your work can wait (and I realize not all work can), the flexibility means that you can rest now, and just catch up over the weekend, if needed. However, flexibility can also lead one to keep odd hours, or no set schedule at all from one day to the next. This can be problematic as your body does not what to expect when. I feel like keeping a steady routine was really key to me getting a handle on my “new normal”, so use the flexibility graduate school affords with care.

7. Do not procrastinate – The other issue with flexibility is that it becomes really easy to procrastinate! This is usually a bad idea, in my opinion. Almost invariably, as the stress of an approaching deadline builds, I feel my FM symptoms worsen. If at that time, I also need to do a bulk of the work that I hadn’t done before, that robs me of the rest time that my body needs. Also, it is more stressful if you know you have a lot of work to finish in very little time. So if your symptoms react to stress, try not to procrastinate!

8. Sleep well before important days – Lack of sleep or poor sleep often makes everything worse for me! I hurt more, am tired more, and can think less. So if there is an important day – such an exam, meeting or interview – I try to get good sleep the night before! I have found zolpidem (Ambien) to be an excellent aid when all else (hot baths, herbal teas/supplements, etc.) fail.

Sleep
The secret to avoiding this vicious cycle is to use flexibility well and not procrastinate! And, of course, treat your body well!

9. Practice and prepare, but be OK with making mistakes – This is as true when you are teaching, as when you may be giving talks and presentations. Despite practicing a lot before my dissertation defense, I fumbled more times during my talk than I would have liked. Though in retrospect, and from the audience’s perspective, it was not such a big deal, it sort of wounded my perfectionist’s soul. And yet, each time, I picked up where I fell, shrugged off a little and moved on. When I have made mistakes while teaching classes, I have admitted it, and then turned it into a learning opportunity. I feel like fibromyalgia has taught me more about being OK with making mistakes than anything else ever – enough so I now call myself a “recovering perfectionist”!

10. Try not to schedule back-to-back classes – This one especially holds if teaching long classes, such as 3-hour-long laboratory courses, when you are on your feet and active the whole time. It is also one of those things where it just depends on the person! If it works better for you to schedule it all on the same day, and just have one miserable day a week, instead of two, then ignore this point. But if you are like me, and that one day casts a shadow over the entire week, then it may not be worth it. I have found it easier to split it up over multiple days, so I am not under too much strain on any one.


Graduate school (in an academic institution, at least) is interesting because you are part employee and part student. So I hope that my management tactics has some relevance not just in graduate school, but school in general as well as the workplace, and not just for fibromyalgia either, but other chronic illnesses as well.

Cheers to all my fellow-fighters!

Love,

Fibronacci

Meditation for Pain Management

I read a paper recently by Mark Collen (founder of PainExhibit.org, an interesting collection of art made by artists with chronic pain, expressing some aspect of their pain), where he recommends a holistic approach to pain management. He suggests taking a “daily SWEM – socialize, work, exercise and meditate,” along with your pain medication, to manage chronic pain. He calls it the biopsychosocial model, because it involves aspects of pain biology, and the social and psychological well-being of the person suffering from the pain.

For the largest part, I like what the article talks about, and I agree with it. Hanging out with friends (socializing) or getting in work mode to find some engagement and routine certainly sound like reasonable distractions to help cheer you up, not feel isolated and feel accomplished towards some purpose. Exercising has also been shown before to improve mobility (or at least reduce the rate of its decline) in patients with chronic pain. [I will give a personal update of my aquatic physical therapy sessions soon in another blog post.] But while they are all good advice, the article did not give many tips on how to practice some of these ideas. That is perhaps the biggest drawback of the article, because I could see many with severe chronic pain not being able to leave the house to work, socialize or exercise.

This is why I like his last advice the best – meditate! This is something one can do anywhere, even laying in bed moaning in pain.

Featured image: One of my original oils on a 7X14 canvas, titled Sun Meditation.

I have personally used three types of meditation with good results: deep relaxation, guided imagery and mindfulness meditation. I have given a brief account of my experience with each below, along with links to some of my favorite videos for each.

Deep Relaxation

I find this especially nice in the middle of the day when the stresses are starting to build up, my pain levels are starting to rise from lack of rest-time at work, and my energy levels are flagging. A ten-minute guided relaxation meditation helps me feel calmer and more grounded, helping to release some of the tension and adding just enough energy to make it through the rest of the day.

Guided Imagery

I use this a lot in the mornings before I have shape-shifted from the tin-man into my human form, to help with the pain and stiffness so I can get on with my day. Basically, you are guided into imagining an interaction with your pain and dealing with it as an object. Along with helping me to relax, I actually find this helps reduce pain levels at least temporarily! At first, I almost always find the pain rises when I focus on it, but then as I continue, its intensity decreases. This surprised me at first because I wasn’t expecting it to work as good.

I have a couple of favorites for this type of meditation: a short ten-minute version (which I use in the mornings) and a longer 1-hour version by Michael Sealy, which I use at night. Sealy calls it “sleep hypnosis” but it’s really all the same I find! Incidentally, as a plus, the latter does also help me fall asleep!!

Mindfulness Meditation

This is probably the type of meditation with the most amount of research behind it showing its efficacy. Mindfulness is the way to live in the present moment – not worry about the past or the future, not try to change anything – just observe what is going on without passing any judgement on it. This is something that takes a lot of practice at first. At some point, it is supposed to become second-nature, but I have not achieved this regarding all aspects of my life just yet. This is useful when I am in serious pain and wanting to throw me a pity-party. A lot of the stress and self-pity comes from worrying about what the pain has done to you (and your plans) in the past and how it will affect your future. Just being in the moment and acknowledging the pain, but not passing any judgement regarding it, is curiously freeing. I am learning to do more and more of this and just taking one day at a time, without stressing about the future, and acknowledging the state of things without judging its impact on me. As you can imagine, I don’t succeed at this at all times but I try!!

Michael Sealy has a short video to help you get started on mindfulness meditation, if you feel so inclined, but this type of meditation is really not best done “guided.” It is useful to read about it and practice it by yourself. “Mindfulness: An 8-week plan for finding peace in a frantic world” by Mark Williams and Danny Penman is one of the books that might make for a great starting point.

These are just my coping strategies, I don’t know if they will help others or not. But just in case anyone wanted to try it out, I hope this helps them get started. You never know what helps until you try it out! I was certainly surprised by how well some of these worked. And now meditation has become one of the go-to tools in my arsenal!

Love,

Fibronacci

P.S. If you are interested in reading the paper I mentioned in the post by Mark Collen, it is called “Operationalizing Pain Treatment in the Biopsychosocial Model: Take a Daily “SWEM”—Socialize, Work, Exercise, Meditate” and was published in the Journal of Pain & Palliative Care Pharmacotherapy in 2015. It is a pretty easy read despite the mouthful title!