Cleaning with Fibromyalgia: Tips and Tricks

After talking about how my husband and I continue to adapt to our ever changing schedules and to the fibromyalgia, I thought I’d also share some of the tricks that I’ve figured out over the years to help keep things clean and comfortable in our home.

Don’t look for perfection
This one is hard for me. I admit my obsessive compulsive tendencies make things even more frustrating at times on this issue. If I happen to walk into the house after a hard days work and feel litter under my bare feet, or happen to catch a whiff of a litter box I can go a little crazy. But I have to come to the realization that our house is not dangerous, bacteria isn’t growing in places it shouldn’t be. Our kitchen stays clean and every room is tidy. If people came over unexpectedly (except for Grandma of course), I can be OK with it now.

Write out a Plan where everyone gets a part
Now that he’s back in the office, my husband has a list of chores, and so do I. I do mine immediately after I get home from work so that they are done quickly and I can rest without worrying about more I have to do that night. My husband does his chores in the early morning before I get up, so we aren’t in each other’s way while we are cleaning. I also picked specific chores for him that I wouldn’t mind how he did them. That settled some of my OCD, and allowed him to feel less like he has someone watching exactly how he does something ready to criticize his every move. I also took on chores that I was having a problem with him doing. It meant taking on more strenuous tasks, but I chose that so that I would feel better overall about how the task was done (there will be no litter on the floor if it’s the last thing I do!!)

Allow the Plan to go out the Window
Even though you spent a significant amount of time in this plan and organized everything, expect there to be days when you just can’t get to everything. You come home, and you have NO energy to do anything but rest, and that is OK. Perhaps the vacuuming gets skipped a week, or the dust starts to get a little thick on the shelves. Make sure the basics are taken care of (dishes, clothes for work, you stay as clean as possible) and leave it for the night. There will come a day when you feel good enough to pick up the chore again.

Put a cleaning station on every floor, and in all the bathrooms
A canister of cleanup wipes can go anywhere. I especially have them in every bathroom in our house. If I’m feeling OK in the morning, I’ll pull one out and wipe the sink after I finish getting ready for work. Toilet bowl cleaner and a brush by every toilet helps as well (I don’t do automatics because I’m afraid an animal will drink the water and get sick). You don’t have to scrub with most toilet bowl cleaners. You simply just leave it covering the bowl for 10-15 minutes and most stains will come right out.

Most of the litter boxes in our home are on the second floor, but I used to keep all of the cleaning products just in the kitchen, which forced me to go up and down the stairs, which caused significant pain on flare up days. Now, I have small boxes of trash bags next to each litter box in the house, along with carpet sprays, paper towels and bleach spray. This allows the litter boxes and any sick-ups or other messes to be cleaned up quickly. And having the trash bag means it is very easy to take it out to the bin outside instead of leaving the resulting smelly mess in the main garbage until that became full.

I didn’t stop there with the cleaning stations. I also now have a vacuum on each floor of my home. Now while this sounds like an expensive tip, it doesn’t have to be. The vacuum upstairs is a refurbished model and it works just as well as the one downstairs. But now I don’t have to hike one upstairs every time I vacuum.

Get the extra help from buying the better products
I just purchased a new floor cleaner from Bissell. It has the spinning mop heads. Now instead of getting on my hands and knees to clean up my kitchen and dining room floor, I can easily get out this gadget and let the spinning mop heads clean the hard floors for me. It saves me significant amounts of time as well as energy, since all I have to do is move the cleaner around on the floor.

I also do my best to use the vacuum cleaner on the hard floors instead of manually sweeping with a broom. It may not work as perfectly well as a broom, but it gets my nemesis-cat-litter off the floor so I don’t feel it underfoot, and that is all that matters.

For years I also refused to purchase the swifter dusters. Why spend extra money on a gadget when dusting spray and a cloth would do the same thing? That might be fine, but when you have fibromyalgia, you have to find easier ways of doing things. I purchased my first swiffer duster about two months ago and I am very happy I did. What once took me a half hour is much faster now, especially because it dusts around the few Knickknacks that keep out.

Figure out what you can live without doing
As much as I loved the feeling of the house after spring cleaning was completed, I no longer plan the extravagant spring cleaning weekends that I used to. Last year all of my closets got the spring cleaning treatment. Two years ago it was a complete and total wipe down of the kitchen. This year, spring cleaning has moved into summer and (maybe even) fall cleaning, with the kitchen, basement and garage again on the cleaning hit list. It’s all going to depend on how I feel.

When it comes to fibromyalgia, you have to let how you feel dictate what you are going to do that day. But that doesn’t mean you can’t figure out ways to get what you really want done. It takes a lot of trial and error, and maybe a little bit of leeway about what doesn’t have to be perfect. And even though it’s a lot of work, and there are still days I have to push myself, I’m still pretty proud of how my home looks.

Cleaning with Fibromyalgia

When my husband and I were dating, we lived in separate states. The first time I decided to come visit him for the weekend, he was so excited he told his father, his brother and his sister. Their first question to him after they heard the news was, “Are you going to clean your house?”

I love my husband, but yes, he has some…bachelor tendencies.

A year later, when I moved states to move in with him, I immediately put us both on a cleaning schedule of the house. Yes, I admit it. I have OCD tendencies. And we had three cats at the time. So I wanted to make sure that we had a clean enough house that should family or friends stop by, they wouldn’t be bombarded with a smell of cat that would chase them out of the house.

Two more cats and a dog later, we live in a house twice the size of the original one, and I had the same OCD tendencies about cleaning it. Carpets were shampooed quarterly. Vacuuming was done weekly. Spring cleaning meant every room gets cleaned top to bottom, moving all furniture and cleaning everything in sight. Yes, that included the basement and garage.

Then the fibro hit, and that all went out the window.

I learned pretty quickly I had one of two choices; let my husband handle the cleaning and accept however he did it as good enough, or beat the crap out of myself to get it done how I wanted it to look, on top of still trying to do the work and my heavy workouts.

The fact that my husband secured a job he could do from his home office helped solidify the decision. But I have to say, letting things go was NOT easy. Many times there were nights I’d be upset about how something was done around the house. Sometimes it was the OCD talking, sometimes it was my fibromyalgia frustration coming out, and sometimes it was because the way he cleaned something really wasn’t the best way to clean it in the first place. But I have to give my husband credit; he supported me through it.

There was a lot of talking. Finally new chore lists were made of what needed to be done daily, weekly and monthly. If I had the energy that night after work I was expected to help (and I did my best to do so). Spring cleaning like I had done before was no more. Instead, a room or two each year that needed it the worst was done in its place. The garage became ‘his’ domain, and was cleaned every couple years. The fridge, cleaned when things were past their date (we dated and labeled EVERYTHING that went in the fridge to help with that).

After the first arrangement I remember having flare ups of pain and laying on the couch watching him clean. I truly tried to ignore every time he did something ‘his way’ instead of what I thought was the ‘right’ way. It got easier over time to do, but I must admit there were times when it was very frustrating.

But I learned, and the house was always presentable enough for friends and family to stop by (well, maybe not as presentable enough for my grandmother to stop in, but that was an entirely too high a level to attain without my help.)

Now things are changing again as my husband went back to the office this year to work. We are still working out chores, and I’m learning once again that if I want something to be done the way I think it should be, I have to be the one to do it. It’s not his fault if it isn’t done the way I do it. And although we still have more talking to do, I think we will make it work.

Looking Disabled

Me, finishing my very first half marathon on Belle Isle in Detroit.

Still trying to be an athlete, the year of my diagnosis I ran two half marathons. The last one I pushed the hell out of myself to get it done in less than three hours.

And boy did it cost me.

I spent the rest of the day (and the day after) barely moving and using my cane heavily. And even though I had expected to be in a lot of pain and barely moving, there were still things that needed to be done. So my husband and I went out to do errands the second day after the marathon.

I decided to wear my half marathon shirt that I was so proud of, but again relied heavily on my cane. The looks I got in the stores were priceless, especially because the shirt had the date of the half marathon printed right on it.

I’m sure many of the people were simply thinking I was a volunteer and not a participant. Perhaps they made up some story in their mind about how I was someone who suffered a catastrophic joint injury and could never run again, but would still support the running community. I even had a well-wisher ask about how the race went. And when that happened, my biggest fear started going through my mind; that they would think I was a drama seeker, and the cane was somehow my choice for a drama seeking at that very moment.

Fibromyalgia is tough in that you really don’t know when those flares will hit. Sure, you can start recognizing patterns to plan for bad days; but trying to predict every single trigger is something that is just too much to attempt. That means there may be days when you are back to activities that were pre-fibro and feel great, and in the next day (or even in the next hour!) you feel like crap because you just pushed a little too much. And out comes the cane, the wheelchair or electric cart through the grocery store to get your groceries for the week. Or you ask someone else to get you home because the pain won’t let you drive or walk anymore.

Often we see stories on social media about someone who is told they ‘don’t look’ sick; so they shouldn’t have a cane, a disability sticker, shouldn’t take a certain parking spot, etc. And ultimately, it turns out that person had cancer, MS, or some other determinate diagnosis that clearly shows that yes, they deserve those tools because YES, THEY ARE SICK.

With an indeterminate diagnosis like Fibromyalgia, we don’t have the luxury of a black and white test to say whether or not we suffer from this disease. And to many, hearing someone say they have fibro is akin to someone trying to get out of something claiming they have a physical ailment; it’s an excuse to be lazy, dramatic or to just get attention.

Now I know I probably shouldn’t worry about what others think and say to me. And I also know I need to make sure I do whatever I can to ensure and safeguard my ability to get around and get things done. But at the same time, I worry about the perception. And some of the reason is because I’ve seen people who truly don’t have a reason to utilize an accessibility device use one anyway. It reminds me a lot of the debate of a service animal vs an emotional support animal; one is something that someone truly needs to get around and be independent as possible. The other is simply something that someone feels like they need to have around, no matter how ludicrous it looks. But just like there are now considerations of new rules to say what can and cannot be a support animal, I cannot help but wonder if there will ever be situations where I will be denied tools to help me move around because I don’t look sick, or can’t claim a determinate diagnosis is the cause of my sickness.

In a world that is becoming more and more fueled by perceptions and not by facts, I feel like things are stacked against me and people like me. We do everything we can to keep moving, keep ‘carrying our own weight’ so to speak, and to try to claim some semblance of the lives we once had prior to the fibromyalgia and other problems taking over. But even if we do our best, we will never be the same as we were before the sickness started. We will have to rely on canes, walkers and wheelchairs. We may have to end up with a disability sticker on our car, or expect others to drive us around because we are too fogged up and in pain to safely get someplace. And ultimately, we may have to feel the sting of someone looking at us to say ‘You don’t LOOK sick!’

I’ll fully admit, I don’t know the full answer to this question. Perhaps there isn’t a ‘one size fits all’ answer, and I just have to find my way as I go. Perhaps I’ll never be able to fully convince someone else that yes, I DO have a sickness that I need that mobility aid for, even though they’ve seen me run a 5K, do an advanced yoga pose, or just saw me post about my home gardens I tend in the spring, summer and fall Or even worse, what if that person is a coworker, watching me on a weekend walk around with in pain using a cane but they see me I zoom around my place of employment like I have no pain workdays? (They also don’t see the immediate fall onto the couch position I take when I get home because I’m so exhausted from keeping up the facade)?

With all of these things in my head, I do have some personal measures that I take regarding those aids. Perhaps I do have the goal of not attracting attention, perhaps it is partially pride. But my personal measure is that I do not rely on any aid unless it’s absolutely a necessity. I don’t walk with a cane just in case I need it; if you see me with a cane, it’s because I am doing bad enough that day that I cannot walk without it. If I am not driving, it’s because the pain is high enough that I don’t think I can drive safely. If I have a brace on a joint, or have my arthritic gloves on it’s because I’m already experiencing pain and I’m using the braces to soothe and comfort the affected area.

Simply put, the tools to help me cope come out only when I need them. They are never out as a precaution. Further, if I feel like I may need a coping tool because I expect my pain is going to be too high at a function, I’m going to consider not going to the function instead of simply going without the tool in question. Taking care of myself has got to be first and foremost in my mind, as no one else knows what I truly need and what my limits are. And part of taking care of myself is also determining when I can be strong and when I can be weak, and when I will be weak but still comfortable enough to use a mobility aid.

Someone may look at this and say that I’m waiting too long to pull out a mobility aid or brace, but I disagree. Pulling out the tool when I absolutely need it means that if there is push back regarding my use of the tool, I feel more comfortable being assertive when I push right back on that person. And using these tools sparingly to me means I’m not looking for drama or sympathy. I am simply getting done what needs to be done, and using the tools at my disposal in order to do so. To me, it’s the healthiest strategy for using mobility aids and braces that I’ve put together. And it works for me.

Attitude is Important

If you join an online support group for any autoimmune disease, you may be put off by the amount of frustration, anger and pain that get expressed. It is easy to assume that the group is full of drama, because all anyone ever talks about is pain. But unfortunately for those of us with autoimmune diseases, our life IS pain. It is a very rare occurrence for me to not have some sort of pain in my body every day, and it’s the same for anyone who has Fibro or an autoimmune disease.

To people who are reading that may not suffer from something like this, think about having the beginnings of a bad flu; your bones ache and you are exhausted. You might have a headache or your neck and throat hurt. Now think about having that every single day for a month. To those of us with fibro; what I just described could be a GOOD day. Days with a full fibromyalgia flare up are significantly worse!

Now thinking with that analogy in mind, I bet you can see why support groups tend to become places with post after post about pain, frustration and anger.

For some people, an online support group may be the only place they can talk about how the Fibro affects them. Perhaps their loved ones have finally told them not to complain anymore because they are tired of hearing it (yes, it happens). Or perhaps they don’t have any other support network around them that they can rely on, so the online support group may be their only outlet. Or they may be like me – they have expressed their frustrations so much to their loved ones that they are afraid that they are upsetting them, so they come to the online support group to vent.

Whatever the reason, we HAVE to get out how we feel. It’s healthy to do so. It makes us feel better to know someone is listening, even if it’s just a Facebook reaction to our post. Remember, we are not just talking about the occasional pain from working out too much, bumping an elbow against a shelf and getting a bruise or something like that. If I listened to someone without any pain-related disease complain regularly about every bump and bruise, yeah, I’d probably be one of the first to dismiss those complaints. But unfortunately, Fibromyalgia and autoimmune diseases are an entirely different animal to deal with. And they HURT.

With that being said, I believe it is also important to try to stay positive overall about the disease. Studies have shown time and time again that being positive will help someone get through suffering easier. And you don’t have to be the most positive person in the world in order to reap those benefits. Yes, there will be days when it is just impossible to even consider being positive about the pain levels. On those days where all you can do is lay on the couch or bed, supported by pillows and barely able to move, positivity is going to go right out the window. And that is fine.

But even on those days when the pain is the worst, I focus on some specific and positive things that do help me get through. I remember that I have the strength and courage to accept that the day is a wash and do everything I can to make myself feel better; even if that means laying in bed for hours, staring at a TV screen binge watching a TV series, or even eating popcorn, potato chips or ice cream (as much as within reason as possible of course…but even sometimes reason goes out the window when pain levels are high). I pull out heating pads, books, remote controls and anything else that I need within reach, and that is where I will camp out for the rest of the day.

But the most important thing I remember is that there will be a tomorrow. I WILL feel differently, thanks to giving myself some needed rest, and I will be able to do something different – even if it’s just to take a shower. I know I have the strength and courage to try again, and I will make some sort of progress beyond camping out at the campsite of the previous day, even if it is simply a shower and cleaning up my space.

I sometimes wish that there would be fibromyalgia support groups that are there to talk about the positivity more than the pain, as it’s so hard to have a positive attitude when all you hear is the negative stuff and can sympathize with it. Trying to stay positive is part of my personal treatment plan for this disease. So even if it means I have to stop back from a support group for awhile, I do it. Because ultimately I feel better when I am positive, and taking care of myself has to come first. Then, when I’ve built up some equanimity, I’ll continue to try to support others the best I can.