A New Normal

Since the writing of my last post regarding flare recovery, life has changed tremendously. A new normal has settled in; something of which I don’t believe anyone in their richest imaginations could have thought of. Sure, many have thought about a pandemic and what it’s possible outcomes would be. But in many cases, those dreamed-of outcomes are wild and spectacular with accessories akin to the destruction of human civilization (and possibly with the inclusion of zombies). In it’s place – a quarantine that isn’t a quarantine; get takeaway from your favorite restaurant, get provisions (or figure out alternatives that are still available), from your local grocer, work from home or hangout with friends and family online. And do this all while sitting in a waiting game to constructed to slow a virus down from running its course on humanity.

This new normal is in a word, weird, even for those of us who are prone to be introverts. We get up, putter around the house, do work if you are able to work from home, eat, stare at a TV or computer, go to bed, and repeat. All with this impending doom and fear of this virus sitting about our heads and shoulders. To me, it feels like a heavy rope of burden that you cannot quite get adjusted to, and therefore you feel its effects every moment of every day. And along with that heavy burden come questions we are all asking. Will my partner or I get the virus? Do we have it now and not know yet because we are in the asymptomatic phase? Can I keep my job a little longer? Dare I consider going out to get provisions today? How are my friends handling this? Do I have enough to get through this? How much longer do I have to endure?

The fibromyalgia, in this situation, has meant that ropy burden of quarantine has painful thorns brought on by the entire situation. My pain levels are constant, enough to ensure I have to watch what I do, but not enough to keep me in bed all the time (like I could do that anyway). The pain feels like it sits in my bones and joints much like it does when the weather changes or when there is high humidity and cold. But where before I could make it go away with a warmer sweater, extra OTC meds or gentle movement, now I cannot get rid of it. It wakes me up when I move in my sleep. It makes it hurt to sit, to stand, and sometimes it even hurts when sitting on my couch. Even my last-resort hydrocodone doesn’t always touch the pain.

The coping mechanisms for this frustrating feature of my new normal have been one of two things; either exercise, or eat. Building back my endurance from the February flare has been slow-going, which means exercise doesn’t help as much as I want it to. And that means I’m falling back to an even stronger urge to eat. Eating has it’s own problems, as I could very easily (and quickly) put back on all 80 pounds of weight I’d lost several years ago. I’ve always had eating problems as long as I can remember, and keeping that in mind I’ve forced myself to at least look at the calorie counts of what it was I was popping in my mouth to ensure I don’t go overboard.

And while I hurt, I know I’m probably one of the lucky ones. My husband is home with me. We have enough food in the house, which means we don’t have to go out often. Our housing situation is stable; and so far, working from home has been OK. And I’ve even engaged my husband in some spring cleaning activity. We have almost half the house done, and I’m still hoping to get his help on the rest of it before the end of this quarantine, as I’m sure when this is over, he’s going to take one look at me trying to hand him a bucket of cleaning solution and washcloths and run screaming.

Overall, things could be better, things could be worse. I’ll keep taking it day by day and hope things get better soon.

The Day After the Flare

The day after the flare starts promising. Sure, you’ve probably slept most of the day away (and I would have, had I not had a 75 pound German Shepherd wake me up mid-morning). But you feel better. The pain has dropped, perhaps it doesn’t hurt to walk nearly as much as it did the day before. Perhaps you feel like you can start to disassemble the ‘nest’ of pillows, books, remotes, laptops and other various icepak and ointment accoutrements you’ve assembled so you don’t have to move too far. And perhaps you have enough energy that you actually feel like getting some housework done.

And that is when it gets difficult. Sure, you may feel like you can clean up the house, do the dishes and the laundry, and maybe even get a workout in. But all of that will eventually bring the flare back.

The thing to remember about flares is they are a lot like recovering from the flu. You may FEEL like it’s all over, but one false move and you are back in that nest, feeling pain in every joint and muscle, barely able to move.

So now the choices happen. Do I do the laundry? What about the dishes? Can I really make lunches for the week, or do I depend on frozen meals this week yet again, even though they are getting expensive? What about dinner? It was your turn to make it, and here you are considering whether or not laundry is more important (it turns out it was – you need clothes for work). The hubby was OK with picking up takeaway for dinner, but there is yet another expense as that cost a lot more than the chicken chowder you were planning.

It’s really easy to get into your head and stay there when these choices come up in this situation. Yet chronic pain patients need to learn not to feel guilty. We have 40 hour (minimum!) work weeks to get to this week. We have other obligations that we have to be strong for, and if that means we spend another day slowly getting acclimated to life after a flare, then so be it.

It doesn’t mean you can’t be frustrated. I REALLY wanted a run today. It’s been two weeks since I ran last, and since I usually ‘run out the crazy’ by throwing all my frustrations with life into my run, I feel really frustrated. It’s been so long I know the 5K I want would really hurt too much, and be too much pain to recover from. And, I know if I do the 5K today, I may not be able to get to work tomorrow. It’s a choice that is really hard, but I have to be responsible. And I hope that I’ll get that run in next week.

So if you are recovering today, I feel ya. I understand what you are going through. And I hate it right along with you. I want more for myself, for my husband, for my life. And I guess I’ll just start trying to get back to striving for those activities tomorrow.

The Best Laid Plans of Chronic Illness Sufferers go Awry

I’m looking back on this blog after another exceptionally long time away and realizing that I really (yet again) didn’t have much control over the hiatus, and the date of my last post clearly proves that. Not long after that post, I injured my back while moving large tubs of cat litter around my office to vacuum (we have four cats, and with that quantity, the little litter boxes they sell don’t work very well. Large storage bins of litter are much better for the cats, but not easy on the body!).

The injury was a tear in the muscles around my L2/L3 vertebrae, caused by twisting while holding roughly 30 pounds of weight precariously. And of course, I did what almost any chronic pain sufferer does with pain; I tried to ignore it and keep moving, because I felt like I didn’t have much of a choice to do anything else.

But unfortunately the pain wouldn’t let up. In fact, it got so bad that I ended up taking multiple doses of my precious last-resort hydrocodone a day. So a first trip to the doctor was made about a week later, the diagnosis was made, and I was sent home with the blessing to take more hydrocodne as I needed, but to take it easy.

So I took it easy. Or, at least I thought I did. But as the pain continued to slowly build, my mobility started going out the window. It got to the point where all I could do was come home and sit either in bed or lay on the couch with ice packs, topical creams, heat wraps, OTC meds and the use of my emergency hydrocodone.

Finally, I went back in October to my doctor, who suggested I go see a physical therapist for manual therapy. I had done manual therapy before, but I was not prepared for the intense and painful work that was needed to get me back in shape.

I should have realized I was in for a long haul when my physical therapist used the words “hot mess” to describe my back and pelvis. Not only had the muscles not healed, but my pelvis had tipped, one side had twisted away from the other AND moved forward. And along with the muscles healing, my Thoracic spine wasn’t doing much better. I had twists in T4 on both sides of my spine, causing me pain that I had simply thought was fasciitis for all of these years. All of this also caused muscles around my spine to *think* like they were in a normal position, so when they moved back into their proper position after the spine was straightened and the pelvis put back, they decided to rebel for days with muscle spasms as they had no idea what to do in this new ‘normal.’

Three full months of regular therapy later, I’m finally starting to move again. I’m slowly adding more exercise back into my regimen, I’m back at work after a bit of a break, and I’m starting to feel like my normal self again. I’m not out of the woods by a longshot. My physical therapist thinks that it’s going to be another three full months before the muscles in my back fully heal, and the rest of my back muscles start to get fully acclimated into this new ‘normal’ position. Until then, no real, heavy lifting and I have exercises I must do daily in order to keep things in their proper place.

The entire situation has been very hard. But this is what it means to have fibromyalgia. Clearly there were things going on in my body that I chalked up to fibro pain that clearly were not. But with fibromyalgia, it’s hard to tell what is simply the fibro, and what is an actual injury. And I’m sure I’m not the only fibro sufferer that has this issue.

But now that I’m starting to feel a little better, my resolution is to post here more often. I want to share my story of chronic pain, not to ask for a pity party or for others to feel sorry for me, but because I find strength from sharing. Sharing my journey helps me understand what I can do better, what mistakes I made and what real strength I have when I read what it is I’ve done. It’s healing, and it’s powerful. And hopefully, someone else may read this and it will help them know their struggle is not a solitary one.

So in the coming months I have lots of ideas for posts and am looking forward to sharing my story, my ideas for dealing with this shitty disease and hopefully hearing about others stories as well.

Where Did I Go?

For a little over a month, I was writing two posts a week regularly. And after that, As those of you who are regular readers realized, I disappeared.

No blog posts, no updates, no comments. Nothing.

What happened? The realization that I could not continue to keep things at the same speed when I went back to school.

I am currently in a Masters degree program with the Boston University. It’s a great program, but it’s also an accelerated program. A normal 14 week class is cut into 7. Add the proctored final exam to the course and you’ve got a situation where you are spending all of your free time studying, doing homework, working on the term project and prepping for that final.

This is all about deciding what I need to spend my limited amounts of energy on. The program means a lot to me for many different reasons. So it is where I’m choosing to put my time right now. To try to do any more than I am would simply bring on another panic attack, and I just don’t want to do that.

My goal is to have two posts done next month (not including this one). So expect to see me back.

My final is August 24. I’ll see you then if I don’t meet my goal.

Fibromyalgia and Mental Health (Confession Time)

I’ve been wanting to do a post on mental health and fibromyalgia ever since I started this blog, but wasn’t sure where to start. I can say without a doubt now that there is a significant connection between the diseases, and that the one disease exacerbates the other. I don’t need to have any study to tell me that is true; just the past several years experience is enough to make me realize the connection.

Mental health has been an issue in my family. I can name multiple family members who have depression and anxiety that they have to deal with on a regular basis. I myself was hospitalized for major depression in 2002 (I told you this was confession time). However, prior to the full onset of Fibromyalgia, I was dealing with that depression very well through diet, exercise and positive coping mechanisms.

That all changed when the fibro hit.

I think the connection has a lot to do with the things you start thinking about when you have fibromyalgia; the ‘what ifs’ if you will. ‘What if what I’m doing right now is going to cause a flare up of pain?’ ‘What if this flare stops me from doing <fill in the blank>? ‘What if this flare stops me from going into work tomorrow?’ ‘ What if I get a flare up and can’t attend <insert event here>?’ ‘What if my friends get mad at me for constantly cancelling on them?’ ‘What if I can’t fulfill the tasks I volunteered for?’ These are all legitimate concerns that people with fibromyalgia have to consider.

And there are more, especially in today’s day and age where we have very few remedies open to us to help with flares. ‘What if my doctor stops giving me the low dose opioid that I take as a last resort?’ Or even, ‘What if my use of Cannabis to help my fibro gets me fired from work?’ (Yes, I live in a state that does have legal Medical Marijuana- but they also still allow people to be fired from work if they use it.)

When you suffer from fibromyalgia, ALL of these things are very possible situations you may face. You have to change your entire life to ensure that you remain as flare-free as possible. It can be done, but not without significant struggles and frustrations as the fibromyalgia flares come without warning, which makes trying to put together some semblance of a life even more precarious.

Have enough of those plausible ‘What ifs’ come in your head come true and the stressors of those situations become palpable. You will have flare ups of pain that make you take sick days, cancel plans with friends or even cancel chores you had scheduled around the house. Friends will get mad or frustrated, things you thought you could handle become overwhelming. And all of this does mess with your mental health. Even the mentally healthiest of individuals are going to start to buckle and start worrying.

And as those worries happen more and more, they turn into anxiety. Soon, you start having full blown panic attacks.

My first fibro-induced panic attack happened about 4 years ago. I did everything I could to push through it, and just keep moving. Since then, I’ve changed my supplement regime, added additional mindfulness practices, prayers, mantras, and used my German Shepherd Natasha as an emotional support animal. Those have all helped, but they are never enough.

Today, as I write this, I’m painfully reminded of how everything I do to prevent anxiety attacks is never enough. Here I am, typing out this post with another full blown panic attack brought on by a fibromyalgia flare. This flare was caused by a significant change in the weather here in the Midwest (a 20 degree increase in heat almost overnight,) and the possibility of a deep friendship with someone I cared about being torn apart because of unsolvable issues (another relationship that had some of it’s issues within the root cause of fibromyalgia).

I’m breathing deeply, made myself a drink (another last resort for me with panic attacks) and am sitting in front of the TV after working in the garden this afternoon, which also helped some. I’ll probably have to use some visualization and breathing techniques to get to sleep tonight, but I’m still pretty certain I can. If needed, I’ll ask the hubby to allow my dog on the bed for the night.

I will want to touch on this subject further, but probably won’t do it until I’m settled some. Until then, if you are reading this and going through any semblance of anxiety or depression over your Fibromyalgia, chronic disease or any other issue, just recognize you aren’t alone. I’m right in the same spot with you. And if I can breathe and push through just this one night of anxiety, you can too.

To be continued.

Things People With Fibro Don’t Want to Hear (And Some They Do).

Through the years I’ve heard a lot of people attempt to sympathize or relate to fibro sufferers when they are flaring. And while many of these sayings were spoken with good intentions, they end up hurting instead.

Remember, Fibromyalgia is an indeterminate diagnosis, so many people who have the disease have to fight to simply prove that they are disabled in the first place; many times even fighting their own thoughts because we have been so shamed about claiming a ‘fake’ illness.

So for this post, I want to list things I’ve heard over the years and why I don’t want to hear them. And I’ll add some encouraging things too, just to give some ideas of things that make me feel supported or loved.

“But you don’t look sick!”
Ahh, the classic saying that is not only said about Fibro, but also MCAS, POTS, EDS and many other illnesses. Just because I don’t look sick doesn’t mean that I’m not. And if this is meant as a compliment, it’s doing a pretty bad job of being one. Because what you are really saying is I’m doing a really good job hiding being sick.

The truth is that those of us who have these illnesses don’t want to have them.  We want to be able to do things we like and not need additional aids or help getting day to day tasks done.  But we can’t always be independent.  And saying we look like we should be just furthers the pain and frustration that we can hide very well that which makes us sick.

“Well, I have <fill in the blank>”
If you are trying to sympathize by sharing an illness you have, you aren’t doing a good job of sympathizing. The last two times I heard this statement, it was someone telling me they have arthritic hands, and the second was a headache (NOT a Migraine…a headache). I can, without a doubt, tell you that having a fibromyalgia flare up is worse than either of these two. When you can’t walk up the stairs, drive a car or barely turn a page in a book because your entire arm hurts, then we might be able to compare pain. Not to mention the fact that a fibromyalgia flare lasts much, much longer than a simple headache can.

“You know, many others feel the same way as you.”
This one really hurt, especially because it was someone that I looked up to at one time saying it. This person didn’t know anything about fibromyalgia, and my attempts to even explain it to them were useless.

But even though many people suffer from fibromyalgia, you cannot compare chronic pain with this disease. Let someone with fibromyalgia compare pain with another sufferer. Don’t throw everyone in the same boat. We all have different thresholds of pain levels, we all have different flare triggers, and different sites of pain.  Chronic pain is bad, but it is different in intensity as well as significantly different areas being targeted by pain.  A Chronic pain patient could have Chronic back pain, ankle pain, or arm pain.  In Fibromyalgia, the pain is constant, and it’s everywhere in your body.

Ultimately, everyone is unique, and everyone must be allowed to express their pain.  Trying to simply group fibro patients in with Chronic pain patients (or other maladies) doesn’t do any of us justice. Everyone isn’t me, and everyone isn’t having pain right now. Realize too, that this isn’t about feeling special. It’s about feeling heard and understood; something fibro sufferers rarely are.

“You are going through a flare? So this really hurts?” <Smacks my arm>
Yep! This happened. And by a family member. He wasn’t expecting me to break into tears after hitting me either. The lesson here – If a fibro sufferer says something hurts, DO NOT test that. I think it’s one of the absolute worst things you can do.

And just for the record, I did get him back a couple of months later – in the martial art I studied, I learned where some very  painful pressure points are. He got a nice (touch controlled) punch to a rib pressure point that took his breath away.

So instead of saying something above, how about saying one of these things, instead?

“I’m sorry you are hurting. Would <this> help?”
Just the acknowledgement from someone that they see me in pain is a comfort. Being willing to help with getting a door, finding a chair to sit in or a place to rest for a moment is huge. It doesn’t have to be much, but it makes us feel supported, which can actually help us relax and maybe even lessen the pain level slightly.

“That sounds brutal! Tell her I’m thinking about her.”
This was said by the same person that made the ‘others feel the same way’ comment above. The context was my husband telling the person that I would not make an engagement because I was in so much pain. The person recognized I was in pain and using the term ‘brutal’ in his response actually meant a lot because they validated that I really WAS in that large amount of pain and had no chance of making the event.

“I am glad to see you/thank you for coming out”
Many times fibro sufferers can’t make events or engagements because of the pain levels. We aren’t trying to simply cancel all the time, we just don’t know what our pain levels are going to be like. Sometimes the fact that we made it at all is astonishing. So if we made the effort, it might because we are pushing through just to see you. Too many people take it for granted that someone with fibro can just go anywhere. That isn’t always the case.

Overall, just recognizing that yes, fibromyalgia IS a disease and causes widespread pain and that we who have it CAN be disabled is huge. Keep that in mind when you are talking to someone with the disease, and you can help us feel supported and not feel like so much a burden.

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.