Grateful. I am grateful for so many things. Nothing like poor health to help a person focus on what they are grateful for. So here are some pics of what I feel grateful for:
From the mayoclinic.com:
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
AND IT SUCKS.
Here is a pic of “tender points”:
These are specific locations on the body of most fibro patients that, when pressed, can elicit excruciating pain. If a patient has pain in a specific amount of these locations with a specific amount of pressure applied, it is indicative of fibro. I didn’t know I had these tender points until a rheumatologist came to visit me while I was hospitalized with c.diff and they were trying to figure out my other mysterious symptoms…fatigue, muscle weakness, insomnia.
The doc walked up to my bedside followed by a few “fleas” (doctors in training), he asked a few questions and then pressed the inside of my elbow. I jumped out of my skin. The pain was excruciating. Electric. Stabbing. Burning. And it lingered long after he stopped pressing on the spot. And that was the last piece of how I was diagnosed with fibro.
Pain and fatigue are the big fibro symptoms. And they are usually without merit…meaning that just everyday activities is enough to cause pain. But fibro causes some weird things too.
Sometimes when I itch my skin, it causes severe, lingering pain. Insomnia is a big deal as well. You would think that someone with major fatigue problems would be able to sleep…but NOPE!! I also occasionally get IBS like symptoms and nausea. I am also VERY chemically sensitive. Especially to smells. Febreeze is my enemy.
The good things about fibro? After half a decade with this illness, you can see some silver linings. I have learned to slow down. I appreciate the little things in life. The basics. If I have a roof over my head, food in my belly, a safe environment, and people that love me, I’m pretty good. I don’t need a new purse, an expensive vacation, new clothes, the newest phone/gadget/etc.
I may complain a lot on this blog, but I do try to see the positive.
Yes, exercise is good for me. But I pretty much hate it. I am not one of these fitness nuts. I have never been athletic. I have always been a klutz. But I do know that it helps what is wrong with me, and that sitting on the couch isn’t good for anyone.
But through experience, I have learned that going hard is not good for my body. I have to start low and go slow. I have to do low impact. Even when I’m feeling better I have to watch that I don’t overdo it because I will feel worse. Because then I won’t walk for days.
Yoga is good for fibro and autoimmune. Walking is good. Swimming is good. Boxing is not good. Neither is running. Even the elliptical at the gym is way too high impact for me. I have learned this from experience. Painful experience.
I do have a goal of learning krav maga one day, but that is far off. I know that I have to build up my body before I can even entertain that idea.
But it is spring. It is a time of renewal. And hopefully after the winter that never ended I will be back to yoga.
It’s not just a river in Egypt.
As a nurse, I still struggle with this. Even nearly 8 years later.
When I was told that I had a nebulous, incurable, chronic illness at age 23, my brain struggled to comprehend. I scoured the internet trying to find anything else that it could be. Anything temporary. But the thing with fibromyalgia is that the nature of getting that diagnosis usually means that everything else has been ruled out.
As the symptoms persisted without any kind of respite, even after pregnancy, and especially after one of the only meds to treat fibro helped my symptoms (Lyrica), I grew to accept this diagnosis.
And then the autoimmune hit. And I was faced with another wave of denial.
What if it was autoimmune all this time?
But nearly two years in, I’m back to the acceptance of the fibro diagnosis. But with every new discovery, every new drug, every new issue with my health, denial rears it’s ugly head:
What if the doctors were wrong?
Corticosteroids: IMHO are the fucking devil. But according to MedlinePlus —
You may have heard of anabolic steroids, which can have harmful effects. But there’s another type of steroid – sometimes called a corticosteroid – that treats a variety of problems. These steroids are similar to hormones that your adrenal glands make to fight stress associated with illnesses and injuries. They reduce inflammation and affect the immune system.
You may need to take corticosteroids to treat
Steroids are strong medicines, and they can have side effects, including weakened bones and cataracts. Because of this, you usually take them for as short a time as possible.
That definition barely scratches the surface. Most people who have autoimmune disease are put on steroids at some point. The side effects are awful and the above definition doesn’t do them justice. Think of the Hulk, if he was weakened from fatigue, doughy from weight gain, and probably cried all the time from the mood swings. No SMASH, more EAT!!
I was on high dose steroids for over a year. I even had steroids injected into both of my eyes. It sucked. I gained 60lbs, I now have cataracts in both eyes, my stomach lining is permanently irritated and I will forever have nasty reflux. Not sure about my bone density. I will do everything in my power to stay off of these meds.
They taste awful too.
Balance is something I struggle with…as a mom, as a nurse, as a wife. I guess most people struggle with this, but it is harder when your body doesn’t listen very well. I have had chronic illness for nearly 9 years, and I still struggle.
But I have learned some valuable lessons:
Take care of your body. Learn what your limits are. Right now, my tolerance for shopping is about an hour in the grocery store at ultimate health (think 100% life on video games), probably 30 minutes when I’m flaring or stressed. I’m at about two to three stores (for about 20-30 minutes) if clothes or Christmas shopping. I have to adhere to these rules or I run the risk of outpacing my energy sources and crashing.
Rest means REST!!! I don’t have to sleep, although sometimes that is helpful, but keeping my body quiet, in a peaceful and quiet location for at least an hour is optimal. That means no interruptions, no getting up constantly to serve a certain seven year old, no putting out petty fires that other adults can’t seem to solve on their own.
Understand that your body is different. Your body doesn’t function the way it once did before. It no longer has the endurance, the ability, the properties to hike all day, to go on a 12 hour shopping spree, to do the things it once did. You may be physically able to withstand these activities, but the payment in terms of recovery is often more than the enjoyable activity in the first place.
Learn your body, learn your limits. Strive for balance so you don’t spend your new life miserable, in pain and in bed.
Autoimmune disorders: as per MedlinePlus — An autoimmune disorder is a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue. There are more than 80 different types of autoimmune disorders.
Explained a little bit more:
Normally the immune system’s white blood cells help protect the body from harmful substances, called antigens. Examples of antigens include bacteria, viruses, toxins, cancer cells, and blood or tissues from another person or species. The immune system produces antibodies that destroy these harmful substances.
In patients with an autoimmune disorder, the immune system can’t tell the difference between healthy body tissue and antigens. The result is an immune response that destroys normal body tissues. This response is a hypersensitivity response similar to the response in allergic conditions.
In allergies, the immune system reacts to an outside substance that it normally would ignore. With autoimmune disorders, the immune system reacts to normal body tissues that it would normally ignore.
What causes the immune system to no longer tell the difference between healthy body tissues and antigens is unknown. One theory is that some microorganisms (such as bacteria or viruses) or drugs may trigger some of these changes, especially in people who have genes that make them more likely to get autoimmune disorders.
An autoimmune disorder may result in:
LUCKY ME!! I have won the genetic lottery!! And as of today, they still have no clue which of the many autoimmune disorders I have…
My next blogging challenge? The A to Z Blog Challenge for the month of April. Basically, you will see a post every day (except Sunday) that will correspond to a letter of the alphabet. I’m going to try to keep it informative about chronic illness and autoimmune disease, but something random may slip in there. I just want to challenge myself and write more. I hope you enjoy!!