Lessons I’ve Learned From Having A Chronic Illness

It would be easy to think there is only loss when it comes to chronic illness. At first the losses are all you can focus on actually, but after some time it becomes possible to see what you have gained. I wanted to share my list of things I’ve learned from having a chronic illness.

Acceptance

When it comes to chronic illness, you don’t get to do much choosing. You don’t choose your illness. Your illness chooses your symptoms and severity. Many times you don’t even get to choose your doctor or treatment, your insurance (or lack of) does.

There usually isn’t anything you can do about this lack of choice. In such a case, the best thing you can do is acknowledge there is no choice and accept your situation.

"Acceptance doesn't mean resignation. It means understanding that something is what it is and there's got to be a way through it." Michael J. Fox (Lessons learned from having a chronic illness)

I can’t change the fact I have fibromyalgia and my other illnesses. In accepting that, it relieves stress and helps me through the grieving for my old life. Accepting my old life is gone leaves me able to make new plans and not dwelling on what I can’t do.

Even bigger, I’ve found self-acceptance since becoming chronically ill. I’d like to think I still would have if I hadn’t become sick, but I’m not so sure. I’m pretty sure I would have kept being viciously critical of myself for not measuring up to ridiculous arbitrary standards. High standards are great, but you need to be able to love yourself where you are also. I think this is a lesson I only could have learned from having a chronic illness.

How to slow down

First, painful joints and muscles, and later the effects of my dysautonomia, made me slow down. My whole adult life I’ve walked one speed, and it wasn’t a stroll. This is indicative of how I’ve functioned in general. If I’m going to be doing something, I want to get to it and get it done. Now I have to make a concentrated effort to pace myself and go slowly. I’m not a dawdler, so this has been a hard lesson.

Having to take multiple breaks and plan less in a day was also not something I wanted to do, but it was a lesson I learned from having a chronic illness. Not listening to my body, not slowing down, meant an increase in symptoms and missing out on doing even more than if I had just adjusted my plans to begin with. So, I’ve accepted this lesson too and made myself slow down. A side benefit I greatly appreciate is the fact that I injure myself much less often now.

Patience

All that slowing down made me work on my patience too. No longer can I just push through and hurry up. I must take my time.

It took months to learn to be patient with myself. I’ve never been very good at it, and there was so much irritation with not being able to do my usual routine. Many tears were shed in anger and frustration, but I finally found the self-compassion and understanding I needed to be patient.

Another way patience has become important is that I’ve needed to give more chores over to my kids rather than do it all myself. Anyone who deals with children knows that is its own unique drain on your level of patience. I can’t just decide to take over and get it done my way. Careful instruction and calm correction is needed to teach them what needs to be done. Deep breathing comes in handy.

Self-Care

For 16 years I was the type of mother likely to put my kids before myself. It is not healthy to always do this. You deserve to be taken care of just like anyone else. While I had people telling me this, guilt always got in the way of any self-care I might try to practice.  After I got sick, I had to learn to prioritize my self-care.

Now I make sure being a mother does not come before caring for my health. My kids come first as often as possible, but when I have a need that has to become a priority, I make sure it happens. Children are able to be wonderfully understanding, and it’s a good lesson for them too. For one, they are learning compassion, empathy, and how to care about someone. Also, I am teaching my kids that self-care is very important, and they should not short change themselves. Loving someone does not mean you need to sacrifice yourself.

Other things I’ve learned from having a chronic illness

These aren’t life lessons, but they are things I really don’t think I would have learned otherwise. Being sick, having to slow down, and finding more patience gave me the time and ability to learn loom knitting, crochet, journaling, and blogging, and that’s just so far. I’m sure I will keep learning things, because:

  • I love to learn.
  • Learning new things is important for your brain (your mental health and brain activity).
  • There is so much going on in the world and I don’t want to be left behind.
  • Learning new things just flat makes life more interesting.

I love taking a good look at my life and seeing where things are overall. Being able to see that I have gained so much, even as chronic illness has taken other things from me, is huge, and I’m glad I get to share that with you all here.

How about you? Are you able to see that you gained something positive from a negative event in your life? Please share in the comments below, or feel free to email me.

The author's name, Leigh, in red script, to the left with a coffee cup to the right.

 

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7 Favorite Spoonie Products I Can’t Live Without

Having a chronic illness (or many) gives you some unique needs. Over the past few years, I’ve figured out solutions for some of mine. I decided to share my 7 favorite spoonie products with you here.

Mobisyl

Mobisyl Pain Relieving Creme
I like to buy the larger tub. It’s 8oz (vs. this 3.5 oz) and lasts me a full year.

This pain relieving cream is my go-to. I love that there is no menthol in it, so it is safe to use on my hands with no worry about it getting into my eyes. Mobisyl works really well on most of my pains, reducing the amount of pain killers I need to use. This may not work for everyone as I’m sure many people have more severe pain than I do. To give you an idea though, when I was waiting on my surgery for the torn meniscus in my left knee, Mobisyl made a big difference in my comfort.

Dr. Teal’s Pure Epsom Salt Body Lotion

Dr. Teals Pure Epsom Salt Body Lotion
I usually buy the Lavender since I use it mainly at night, but there are other scents available.

I rely on this lotion to help me with the leg cramps and muscle twitches caused by my fibromyalgia at night. After running out I decided I can never let that happen again. A few sleepless nights made that decision for me. I’m really glad it is available on Amazon Prime (a whole other favorite of mine).

Shower Chair

White Shower Chair
This is the chair I bought. It is very sturdy, and has never made me feel unsteady.

I never want to be without my shower chair. It saves me so much energy that I need elsewhere. Thinking about getting one but hesitating? Stop putting it off, and just get one. I promise a shower chair is well worth it. Between the energy saved, and the security of not worrying about your balance, it is money well spent.

Bath Cloth

Purple gentle bath cloth from Body Benefits
I had a hard time finding the exact one I use to show you, but I think this is very close. When it is time to replace my current one, I’ll be buying this one.

My hands don’t always grip very well, and sometimes my shoulders get stiff. This can make washing up a challenge. I bought quite a few different products before finally finding this one that I love. It is thin and easy to rinse, so I don’t need hand strength to rinse and squeeze it out. It is long and narrow (as you can see in the picture) so it makes it easier to wash my back. I can also either fold/wad it in my hand to make it easy to hold, or wrap it around my hand if I have no grip that day. There is an exfoliating version, but I bought this gentle style, so I can use it even when my skin is feeling extra sensitive.

Knorks

4 matt knorks
We bought ours from a local shop about 10 years ago.

These work like a fork and knife together. I love these because they are slightly thicker, so they are easier for me to hold. Knorks also make it possible for me to use one utensil to cut food when other forks would hurt my hand or make a knife necessary. You will still need a steak knife for steak maybe, but we regularly use only a knork on chicken, pork chops, etc.

The reviews on Amazon mention rusting. Ours have never rusted over the years, but they are around 10 years old so there is a chance the quality has changed. Personally, I’m thrilled with ours and hope to buy four more some day.

Healthy Back Bag

eggplant colored "Healthy Back Bag"
This is the exact bag I bought myself.

I bought this to use as a purse a couple years ago. From the moment I opened the package, I fell in love, and I haven’t changed my mind since. The adjustable strap design allows me to throw the bag over my shoulder, or across my chest depending on what is more comfortable that day.

These bags have a wonderful assortment of pockets, both open and zippered, for organizing your stuff. After a ton of deliberation, I decided on the small size. I need plenty of space, but I didn’t want to be able to overload it and make it too heavy either. Extra small would likely have been fine, since I do tend to accumulate enough in mine to get a bit heavy on my shoulder. It’s really nice having that space available just in case I end up out and about for a longer day.

As you can see, it carries a good amount. Here is the inside of the main compartment.

Two pictures. One of the inside of my purse. One shows my love eyes emoji hand sanitizer holder.
At the top of the zipper, there is a place to hook stuff. I keep my memberships cards here. I also have some hand sanitizer attached to the zipper for easy use.

And here is everything that fits in each of those pockets.

A picture of a lot of junk from my purse. Includes my wallet, pens, two mini notebooks for blogging and medical notes, wrist warmers, nylon shopping bags, pill boxes and more.
Each pile is from a separate compartment.

This shows the outer zippered pocket and it’s contents.

Picture shows inside the outer pocket and the contents. Those include eye drops, travel hand cream, pill box, ear plugs and some mints.
That is one deep pocket.

The picture of the bag up top shows this zippered pocket. It’s large.

On the other side of the bag, there is another pocket that is just open with no closure. I usually stick my grocery list and phone in here. Sometimes my keys go in here, and other times I clip them on with my membership cards.

Finally, there is this nifty narrow, side zipped pocket on the opposite side from the main compartment zipper.

"Secret" pocket with my disability parking card and house key. House key is purple with butterflies and attached to a felt camper keychain that hides the key.
Like my camper key ring? It’s so cute! The key is attached to a leather cord that pulls the key into the camper pocket.

As you can see, my disability parking card and my key ring tuck way down into this pocket. You can hardly see it in there. I rarely need these things, but don’t want to be without them, so I keep them in this really cool compartment.

If I need to, I can still fit a water bottle and a couple of snacks into this bag. It will feel heavy, but it won’t be overstuffed for space. I seriously love this bag.

Wrist Warmers

I bought a couple different types, and used my loom to knit up another pair. The set I linked to here are the softer of the two I bought. I really love this brand and definitely recommend them.

Picture shows long purple wrist warmers with shiny black buttons edged in gold. They are lying on a shiny silver nylon mesh drawstring bag they came in. Next to them are the teal/gray short wrist warmers I knit.
I bought the purple wrist warmers, and made the teal/gray ones.

This is the pattern I used to loom knit my other faves. These are the ones I wear at night when my hands get cold. I also used this pattern to make Christmas gifts for many of the women in my life a couple of years ago. They are quick and easy to make. I almost forgot I knit a red set for my youngest. He uses them as gauntlets, and tells me they shoot fire. 😉

I actually have some more favorite spoonie products I could add to this list, but the post is pretty darn long already. So, I’ll end this here, and follow-up with another like it if you all are interested. 🙂

The author's name, Leigh, in red script, to the left with a coffee cup to the right.

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Brain Fog, Fatigue, and Pain: Confessions of a Chronically Ill Blogger

I’ve decided to start a monthly series here on Flawed, Messy Life. It’s called Confessions of a Chronically Ill Blogger, and I’ll share some of the challenges I face and how I deal with them. I’d like the share my journey of making my dream come true with all of you.

 

I’ve mentioned before that I have fibromyalgia, inflammatory arthritis, dysautonomia, depression and anxiety (generalized and social). Today I want to discuss how these affect me as a blogger. Since they have many overlapping symptoms that are the main issues, I decided to cover it by symptom rather than by condition.

Brain Fog

This is my most common problem. Even when everything else is behaving, brain fog is a frequent issue. Brain fog is a symptom of quite a few different conditions, and it goes along with all of mine. It really is foggy thinking or mental cloudiness as these pictures describe.

What is brain fog? It's trouble with concentraion, being easily distracted, word recall, and more.Brain Fog: Mental Cloudiness: confused, distracted

Brain fog for me is seeing the word or thought in my head and not having the capacity to verbalize or decipher it. I know it's there. I know what it is. I just can't reach it...Chronic "on the tip of my tongue" -Stephanie Becker-Wright
This quote on brain fog is fantastic. I’d describe it the same way.

You need ideas and words put together somewhat intelligently to compose a blog post. That isn’t an easy task with brain fog. Finding the right word for common objects is a challenge some days. I’ve lost the word for potholder, tea, cup, notebook, and many other simple objects before. I will again. Now imagine trying to get more complex ideas out of your head and onto paper. It just isn’t going to happen some days.

This is a huge hurdle when writing a blog. Of course I would rather be prepared for the times my brain fog drags out for days. To do so, I do as much writing as I can on my good days. I might manage to get 2-3 weeks of posts done in one week. This can help so I either don’t miss posting, or only miss one day if things get pretty bad. I also keep ideas ready that take minimal planning and brain power. Thankfully, I have awesome readers who understand when those tricks aren’t quite enough.

Fatigue

This is the next largest problem. Being able to think clear isn’t much good if you can’t stay awake. Fatigue is not the same as being tired. It is feeling like you are moving through cement. When you suffer from fatigue, you feel weighed down, like gravity is higher in your vicinity.

Defining Fatigue: Pathological and Psychological fatigue: The North American Nursing Diagnosis Association definition of fatigue is: "The self-recognized state in which an individual experiences an overwhelming sustained sense of exhaustion and decreased capacity for physical and mental work that is not relieved by rest."
A good definition of fatigue.
Fatigue Scale
This shows how fatigue and the resulting brain fog can vary.

Fatigue means I will suddenly not be able to stay awake. I have no choice in the matter. A nap will happen.

Nap Attack: They Can Happen at Any ZZZZZZZZZZZZZZZ

I’ll still manage some writing if this is my only problem. It might not be something new, but I can type up a draft already written up in my notebook, or I’ll proofread and add on to a first draft saved on the computer. I try to manage at least a little progress on these days.

Pain

While pain can bring on fatigue and brain fog, on its own pain is actually the easiest symptom for me to deal with. Brain fog and fatigue are all-consuming and demand your attention. Pain, I can distract myself from.

With some pain pills, music, or just writing a blog post I can many times find some tactics, or a combination of them, to distract myself and accomplish something. Again, the only works if the pain hasn’t worn me out already and caused the fatigue and brain fog to set in.

So, those are the three main obstacles I have as a chronically ill blogger. My posting schedule has to work around my brain fog, fatigue, and pain. It’s an extra challenge, but I feel it is worth it. My anxiety and depression are different animals, and I’ll address them in another post in this series.

Much love to you all and thank you for being a part of this.

The author's name, Leigh, in red script, to the left with a coffee cup to the right.

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