Not being a complainypants...

[SimpleCycle]

...when you have something that’s really getting you down.

I have fibromyalgia and have had it for years.  At my worst, I walked with a cane and couldn’t take my own groceries to the car at age 31.  I’ve worked with an excellent medical team, reduced stress, built up a gentle exercise routine, and am generally doing much better six years later.  I am able to be active again, bike and walk a lot, can get down on the floor with my kids, things like that.  Unfortunately, little stresses can upset the whole system and send me into a flare up.

I’m in the middle of a flare up right now, caused by wearing bad shoes on hard tile floors and carrying my sick baby more than usual.  I have a lot of joint pain, which makes it hard to sleep, which makes the pain worse.  And for whatever reason, I am also in a full on pity party.  It is just so discouraging to put so much into maintaining your health and still have regular setbacks.

So, how do you overcome moments (or longer) of woe is me thinking?  I have a few friends willing to lend an ear when I need it, but I don’t want to dwell in a negative place.

[ElleFiji]

The @ function is the best! It's like summoning reindeer. There are people here who will tell you that pain and fatigue are a moral failing. And people who build each other up. I am mostly exhausted with no energy to help you today.... But
@jooniFLORisploo is like the team leader of building people up. @Astatine just started a beautiful thread about food to eat when you are out of spoons (featuring comments from many other elves and reindeer)

Personally, I let myself wallow for a night, and then focus on the happy things. Or just binge watch an entire happy series on Netflix.

Tonight I drank a liter of coke zero, so my house is neat for the first time since October. And watched a lot of tv. And next I'm going to do yoga, while watching bad tv.

The yoga will very slightly increase my chances of sleeping. The sleep might reduce my pain. And tomorrow I get cookies either way

[Zikoris]

If I'm feeling down/sick/pain, I usually hang out in my apartment in pjs, eat snack foods, drink a lot of diet coke, and grumble to my boyfriend. Probably not the healthiest coping mechanisms, but I often feel a lot better the next day.

I also find really immersing myself in something helps, like a book, visual novel, or labyrinth meditation.

Maybe in the long run you could also find some ways to make your day to day life easier or less effort? I would look into things like home grocery delivery, if you don't already have it - it can be surprisingly inexpensive. With joint pain, maybe it would help to figure out ways to reduce housework in general, like picking up a used Roomba or countertop dishwasher, reducing laundry frequency, or even eventually looking at downsizing to a smaller place. If the hard tile floors that caused your problem are in your home, maybe some thick area rugs would help?

[joonifloofeefloo]

The @ function is the best! It's like summoning reindeer.

haha!! Awesome, EF!! I'm liking it too because I'm on the forum very little these days and I like that people can reach me this way :)

SimpleCycle, illnesses or disabilities with intermittent symptoms can be really, really, really hard on one's psyche, for sure!

...for whatever reason, I am also in a full on pity party.  It is just so discouraging to put so much into maintaining your health and still have regular setbacks.

So, how do you overcome moments (or longer) of woe is me thinking?  I have a few friends willing to lend an ear when I need it, but I don’t want to dwell in a negative place.

I'm really sorry you're in a flare right now, and I 100% support your pity party! You've clearly done so much to support and recover your health as much as you can, so I think feeling and acknowledging discouragement is just another one of your healthy moves.

As for getting past stretches of woe is me, I'm with EF and Zikoris: deep rest, foods that revive us, easy activities that remind me of my happiest childhood moments (usually reading, writing, singing, or doing puzzles in my case), and telling our truth (discouragement, etc). I swear the deep physical rest helps a lot of us with the emotions as well as with the physical.

[Astatine]

The @ function is the best! It's like summoning reindeer.

lol! Awesome. :)

Mainly posting so you can get the link to food when you have no/low spoons in my signature (it's for Aussies but hopefully there is something useful for you).

I don't really have any great suggestions for getting out of a flare-funk. Being kind to yourself and having some self-compassion helps, but of course, that is SO much easier said than done.

And if all else fails, I watch cute videos of kittens and puppies on Youtube. Sometimes that's enough to lift my mood a bit.

[Imma]

I put on my favourite pair of pj's, get into bed and watch Netflix or history documentaries on my laptop. If I have the energy, I'll do cross stitch or hand quilting while watching. I know lots of people tell you you need to fight back and keep going, but none of these people have ever dealt with a long term health condition that affects every part of your life. As someone who has that experience, I always tell people to give in to your body and take all the rest you need. It's totally normal to feel sorry for yourself. You're not being a complainypants. It's hard to live with illness and it keeps flaring up and ruining everything. When you're feeling better you put so much effort into building up your life again, and then a flare up comes around and ruins everything.

When I was really ill a couple of years ago, I did a lot of cross stitch and knitting, so at night I had the feeling I'd achieved something. When my s/o got back from work, I didn't have to tell him I did absolutely nothing, I could tell him I'd finished the left sleeve or something. I also did some distance learning classes to occupy my brain. This was when I'd be in bed for weeks or months at a time. I'm doing a lot better now thanks to new medication, I even work 20 hours a week now.

[GuinnessPhish]

any of you ever tried ketamine infusion treatment?

[SimpleCycle]

Thank you so much for the responses.  It’s helpful to feel supported and less alone.

I definitely need to work on deep rest and self care.  I have two little littles so it can be hard, but I need to feel okay to be a good parent.

I’m on my phone so it’s hard to respond to each of you, but seriously, thank you.

[joonifloofeefloo]

...seriously, thank you.

:)

And yes to this being a priority in order to be able to parent well. I paid for child care when I needed more self-care time, because it was absolutely make-or-break in my ability to parent given a host of tricky circumstances. It's one of those cash disbursements I considered an investment.

[Retire-Canada]

I get arthritis attacks that take me from uber athletic to barely able to get from sofa to toilet in a few hours. It sucks, but you know what I could have 1000 times worse medical conditions and the attacks are acute so most of the time I can do what I want. Rather than make me feel negative I just make sure I appreciate the times of my life when I am healthy and pain free. And you know what there are worse things than sitting on my butt for a few days watching Netflix or reading.

[ysette9]

I wish I had something useful to share but I have my head too far up my butt of my own self pity party right now. Maybe just embrace the sick for a period before trying to get your head in a better place?

[cl_noll]

You're doing good, OP.  It's especially hard when everybody thinks you "look fine" but you definitely don't feel it.  I deal with this stuff too, though to a seemingly lesser degree than what you are going through.

Have your doctors been able to help you much? I feel like a broken record going to mine, continually dismisses it as anxiety and depression. Like, F.U. and your worthless advice Mr $300 a visit physician. I just want to get a good night's sleep and wake up feeling refreshed for once in my life. It's just such a pain navigating the labyrinth of medical care.

Anyway.. don't feel bad. There is a lot of stuff worth complaining about.

[Khaetra]

You're doing good, OP.  It's especially hard when everybody thinks you "look fine" but you definitely don't feel it.  I deal with this stuff too, though to a seemingly lesser degree than what you are going through.

I really dislike the "But you look okay" line many of us who have invisible disabilities hear, sometimes daily.  Sure, we may look fine, but under the surface we're anything but!  OP, I deal with Fibro flare-ups (and sadly other flare-ups as well) and the only thing I put effort into is resting, trying to get comfortable and trying to not overdo it when I am feeling better.  Junk food, crafting and junk TV are all on the menu when flares strike.

I agree with a PP who suggested trying to make life in general a bit easier, especially when it comes to around the house stuff.  Really easy meals (no one has gone to jail for feeding kids cereal for dinner), declutter as much as you can to make cleaning easy (or easier), have things delivered so you don't have to stress over taking the kids shopping with you.  Meditation and gentle Yoga helps (make sure your partner/spouse takes the kids elsewhere for awhile so you can relax, instead of "mommy! mommy! MOMMY!! which is not relaxing).  Take care of yourself :).

[Imma]

You're doing good, OP.  It's especially hard when everybody thinks you "look fine" but you definitely don't feel it.  I deal with this stuff too, though to a seemingly lesser degree than what you are going through.

I really dislike the "But you look okay" line many of us who have invisible disabilities hear, sometimes daily.  Sure, we may look fine, but under the surface we're anything but!  OP, I deal with Fibro flare-ups (and sadly other flare-ups as well) and the only thing I put effort into is resting, trying to get comfortable and trying to not overdo it when I am feeling better.  Junk food, crafting and junk TV are all on the menu when flares strike.

I remember I heard that constantly when I was on a high dose of prednisone. "Look at your cheeks! You look great" -> sure, I look like a hamster and I have hot flushes from all the hormones. Even worse were the people who commented on my weight gain, "oh, you're filling out nicely, don't worry, men like a bit of meat on the bones". I had lost some weight before this due to illness, then I gained a lot of weight in a short period of time and the hormones give you rolls of fat in places where you've never had it before. One guy even had the guts to tell me men like curvy women like Marilyn Monroe (who wasn't curvy at all but a size XS).

[ysette9]

Oh prednisone.... I have only been on it while pregnant so hard to tell how much cheek and belly fat were due to the steroid versus pregnancy itself. I definitely feel self conscious though.

Somewhat related: have you experienced fatigue and/or hair loss while tapering off?

[ysette9]

And in my opinion one should only comment on fat cheeks of babies.

[Imma]

Oh prednisone.... I have only been on it while pregnant so hard to tell how much cheek and belly fat were due to the steroid versus pregnancy itself. I definitely feel self conscious though.

Somewhat related: have you experienced fatigue and/or hair loss while tapering off?

I'm not sure about the fatigue, as that's a normal part of my illness as well, so I'm not sure if it was caused by the steroids. But the hair loss, definitely! Every time I brushed or washed my hair I'd be left with a clump of hair in my hand. I have a lot of long, very fine hair so I'm not sure if other people noticed, but I definitely did. The hair loss stopped at some point, but it took me quite some time to feel 'normal' again after the prednisone.

[ysette9]

It is so gratifying to hear that confirmed because when I searched online for side effects that was not one listed. My hair loss the first time was so bad because it was also post-partum (also known for hair loss) and I believe I tapered too quickly. That was over three years ago and I still don’t feel back to normal.