Tag Archives: fibromyalgia

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Rest is Vital

Over the past few weeks, a number of my more able-bodied friends have discovered just how vital rest is when the body feels under attack.

The Covid-19 shots have given many a small glimpse at what it is like to live with conditions like fibromyalgia, chronic fatigue, and the wide array of auto-immune disorders that are too many to list. Living with debilitating fatigue, and the feeling one is ill even when they are not, even for a few days can be so frustrating. Doing so without allowing your body the rest it is demanding can not only delay recovery, but it can be emotionally demoralizing.

I was fortunate to get the one-dose shot, and was very relieved. My body seems to overreact to any shot, and I was nervous that this shot would be no different. Interestingly, the shot itself only produced mild side effects. However, it triggered one of the worst fibromyalgia flare-ups I have experienced in years.

I prepared myself for the complications I suspected the shot might produce. It is not very often I get to prepare ahead of time for a fibromyalgia flare-up, so that was a nice way to start this experience. Yet, I did not calculate into my preparations the reality of having spent a year in a pandemic world.

My body simply said, “Enough is enough!”

I have been riding the rollercoaster of feel good one day, feel horrid the next.

With a bit more time, a lot more rest, and the knowledge that I have traveled this path before, I should regain the balance I had before I was knocked of kilter.

Living with chronic pain, fatigue, and other health issues is not what any of us wish for ourselves or others, but it has taught me that rest is vital for a joy-filled life. Regardless of our situation, Rest is Vital.

In between naps, I was able to fit in another short video.

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Challenges of YouTubing

Each week presents new challenges, and with the challenges, new things to learn.

This week, after becoming fatigued during the many attempts to sound coherent on camera, I realized that the chair I purchased so that I could more comfortably work at my sewing-room worktable, would work really well at my quilt display wall. Sitting rather than standing reduced the fatigue and reduced my anxiety.

It is amazing how much more productive one can be when fatigue and anxiety are scaled back.

The second challenge I faced in getting this video posted was one of an emotional nature. I have become hyper-aware of how fatigue affects my speech and speech pattern. I sometimes struggle with words. Even when the thoughts are there, the words can remain just out of reach. This is one of the reasons I have always preferred writing over speaking – much easier to edit or to find the right word when there the pressure of an audience is absent.

When I went back to school back in 2012, I had to overcome a good deal of foggy brain. I was quite relieved to see that I could regain what I had worried might have been lost. I regained, and I improved my ability to communicate through writing. Now I am attempting to do something similar through the use of vlogging. Of course my confidence with writing was always greater than with speaking, so this challenge already causes a bit more anxiety for me.

Yet with this challenge there is even a greater reward than the degree I earned when I returned to the classroom. This challenge is helping me better accept the person I am – and that is something which has often proven to be an elusive prize.

Self-awareness is very good. Self-acceptance is even better.

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Milestones – Big and Small

For many years, I have wanted to set aside time, and more importantly energy, for making doll clothing. Since 2020 seems to be a year of change, I thought I would add positive change to the sea of crazy changes this year has brought.

Inspired by a group of costumers on YouTube and Instagram (#historicalhalloween2020) but not wanting to make a costume for myself, I decided to use this inspiration to make a doll costume.

All of this was well and good, but then I decided to take the big plunge and actually talk on video.

Anyone who understands how anxiety complicates regular daily life will understand what a huge challenge I undertook. A keyboard is my friend, but a camera causes all kinds of stress.

Years ago, actually two decades ago this year, I began to understand why I shied away from the idea of being photographed. I had not had issues with the process while in my youth, but things began to change for me as I neared my 30th birthday. Aging was not what concerned me – pain, or more to the point, the photographic record of my pain, concerned me. Despite reassurances from my family, by the time I reached my 40th birthday, I really struggled with sharing any photographs taken of me.

Now as I move past the mid-century mark of my life, I want to do more than just hide the pain. I want to push back against what pain can steal away. I have been doing much better managing life and pain these last 10 years. Management is the important concept since I can manage my health, but I cannot regain the health of my youth (a youth where I was unaware that my pain was not a common thing).

So with my goal of regaining what can be regained, I took the plunge and made a video with me speaking to the camera.

Anxiety was a thick cloud as I filmed myself and then worked with the footage. Even as I regained steady ground, the underlying energy that anxiety causes me would not dissipate. Fortunately the learning curve of video editing with voice-over commentary was steep and I had many, many, hours of work to keep my mind busy. When I was able to finally take to my bed, I was able to sleep.

With fresh eyes, and a bit of rest, I have now uploaded my first “talkie”*

As I was reviewing this before posting it, I was rendered speechless when I comprehended that September is now upon us. In just a few days time, I will pass the 20 year mark on the spine injury that derailed me from the life I thought I would have, and set me on the course to the life I would come to appreciate as being the better one. I did not set out to mark this milestone with a video about making doll clothing, but as I reflect on the last 20 years, it seems rather fitting.

Life gives us challenges, it is up to use to make them into milestones rather than barriers.

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*In the days when silent films reigned supreme, the first talking films were known as talkies.

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Emoji Fruit Ornaments

I have found that basic patterns are sometimes the hardest to find, especially for free. This can make teaching a skill troublesome when simple and basic are required. Young and old, there are times when a bit more step-by-step help is needed in order to gain success. I know that on my fibro fog days, I require an easy-to-follow pattern, one that can act as a check list to cross off as I go.

Years ago I worked up a few dozen quilting patterns that I could use when I was giving tutorials on basic quilting for beginners. Now I find I am doing the same thing in crochet. So here is my first pattern and I hope a few more will arrive in the next weeks and months.

Emoji Fruit Ornaments pdf download

The pattern has instruction for the fruit, but the bat wings and cat ears can easily be made from craft felt or free form crochet.

 

 

Emoji Fruit Ornaments - pattern pic

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I also made a lemon by adding an extra round of single crochet at the beginning and the end to make the ends pointed.

 

I hope my efforts help others, and that more skilled pattern writers and crochet artisans forgive me for any bobbles and flubs this pattern may contain.

 

 

A final note: In case anyone wonders, the white one is a snowball. Not a fruit, but he was lonely all by himself.

 

 

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Saith Me… Seek Solutions

Seek solutions before settling for excuses.

solutions

Solutions may not always be cure-alls, but they often are just enough to make a rough situation more bearable.

In my house, the common solution comes from simple advice.

  • Get up and move…
  • Drink a glass of water…
  • Drink a glass of juice…
  • Do something creative…
  • Get some fresh air…

Certainly the ills and woes of life are not eradicated by such simple suggestions, but they are often lessened.

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Saith Me… Exhaustion

First I laughed so hard it hurt,

Then later I cried the tears of healing,

Finally, I slept.

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Saith Me… Lumps and Bumps and Even Patches

Handspun yarn is much like life. The beauty is found in the lumps and bumps as well as in the smooth sections.

 

Spinning and knitting in small scale can be a fun way to try out new ideas. Working with small gauge needles when the hands no longer cooperate all the time can be a challenge, but I am learning to embrace that challenge. The speed and dexterity of my youth may be long gone, but patience and determination have become my companions.

Baby Sweater - Hooded02

Doll Sweaters 02

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Life With Fibromyalgia: Finding a Reason to Smile

Living with a disability like fibromyalgia is a never ending lesson in adjusting and making the best out of a tough situation. Take this morning for example. I woke up feeling rather good, a bit of shoulder stiffness, but otherwise bright-eyed and chipper. I prepared for church and found that the fatigue that often hits just prior to leaving the house at 9:15 AM was absent. I was really quite pleased because last week the fatigue hit just as church was starting. I find hiding a bout of pain is relatively easy compared to hiding a bout of fatigue. While it may be acceptable for small children and old men to doze during the congregational meeting, it is usually frowned upon for middle-aged ladies to do the same. So by comparison, shoulder-joint pain was manageable and I was looking forward to enjoying the meeting.

Alas, to my great dismay, I found myself becoming queasy and lightheaded not more than 10 minutes into the meeting. Sure I had arrived 10 minutes early to get a good seat, but 20 minutes sitting in a pew should not have been enough to have cause discomfort-induced nausea, regardless of the fact that my shoulder pain had been joined by a stiff neck and sore back. By the time the sacrament had been passed and the bishop was thanking the deacons for their efforts, I knew that I had to leave. I asked my husband to carry my overly large purse as a precaution, and I proceeded to leave the chapel. Upon reaching the foyer, I discovered I was struggling to breath much like I was having an asthma attack, but upon stepping outside, my breathing began to ease. Oh and the gooey eyes that I had been doing my best to ignore, cleared almost immediately.

It would appear that I was having an allergy attack. Since I am not terribly susceptible to airborne allergies and perfumes usually only give me headaches, today’s strange reaction left me flustered and a bit frustrated. It is when the unusual, unanticipated, and odd physical symptoms hit that I find myself most severely struggling emotionally with my health issues. It during those moments that I want to weep. It is during those moments that I do my best to find a reason to smile. Today’s reason to smile – fresh baked cookies.

I am now sore and tired, but I am not frustrated or emotionally weary. If I do get weepy by the end of the day, at least I now can dry my eyes with one hand while I eat a cookie with the other.

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