Receiving a diagnosis of an autoimmune disease is overwhelming. There is so much to take in, especially if you have no knowledge about your diagnosed disease and weren’t expecting it.
While there are many resources available to educate us about our symptoms and treatment options, there aren’t many resources for patients to be made aware of the changes that will at some point or another become an issue in their personal lives.
I could have saved myself a lot of heartache and frustration had I been warned about and/or educated in the subject that I am sharing with you today.
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#Fibromyalgia and #psoriaticarthritis are more than physically painful. Without proper support and education these #chronicillnesses destroy lives!Tweet
The Importance of Self-Care
There two forms of self-care. There’s the fun kind that everybody likes and the not so fun kind that feels more like work than a good time.
Today I am sharing the importance of both and why they should be discussed with newly diagnosed patients.
Fun forms of self-care
First up, the fun stuff!
I don’t know anyone who isn’t a fan of treating themselves now and then. Unfortunately, when chronic pain from painful illnesses like fibromyalgia and psoriatic arthritis begin disrupting our lives, we find ourselves feeling as though we do not deserve to treat ourselves.
Some may feel that treating themselves to something nice is a waste of money. Others may think that they didn’t do enough to earn a treat.
Self-care is not earned! #chroniclife #selfcare #fibromyalgia #autoimmunearthritis #PsATweet
If you want to start your day with a cup of Starbucks coffee and can afford to, then do it!
Yes, many “treats” come with a price tag, but that doesn’t mean that you can’t spend a little on yourself now and then. However, there are many FREE things that you can also treat yourself with! Sometimes, just spending time soaking in the bathtub and reading a book is all it takes to bring a little peace and joy into your life.
Our lives do NOT have to be as miserable as our #chronicpain ! #fibromyalgia #psoriaticarthritis #autoimmunedisease #spoonieTweet
Not so fun but just as important
The importance of dietary choices, exercise, and lifestyle were never stressed or even addressed until after my health took a total $h!t.
Had it been discussed in the beginning, I may have never experienced such a devastating blow as to not be able to walk, sit, or stand without excruciating pain. Instead, it was after reaching this point that doctors decided that it was worthy of suggesting.
I could barely move when I was first diagnosed with psoriatic arthritis. When I shared with my rheumatologist how painful it was to exercise, his response was don’t do it.
What he should have said/done was to refer me to a physical therapist who could have taught me how to exercise differently. All I knew was what I was able to do before my body was riddled with crippling pain.
He also should have inquired about the areas that hurt the most during and/or after exercising. That information could have helped him improve my treatment and pain management plan.
I finally figured out how to exercise without increasing my pain levels in 2017. It should not have taken so long.
There is no one #diet that will help every #fibromyalgia and #psoriaticarthritis patient. They all have at least one of my #food #triggersTweet
Working with a dietitian would have also been useful. However, they would have needed to be educated in regards to specific chronic illnesses.
Instead of handing us a printout of a popular diet among those with our illnesses, they need to address our nutritional needs individually. Broad based diets may help the average person, but those of us with autoimmune diseases are far from average and all have varying reactions to food.
As for lifestyle, one thing I wish my doctors would have shared with me is that it was okay to modify my activities. Instead, I felt like a failure for not being able to walk as long or far, to have to sit while washing dishes, and to cut back on social commitments.
What could help a newly diagnosed patient
- Guidance in finding our individual food triggers.
- A referral to or list of physical therapists and dietitians who understand the complexity of autoimmune patients.
- Encouragement to modify existing activities in order to prevent injuries, increased pain, and loss of energy. A pamphlet with examples of modifications that could help.
Thank you for reading part eight of this nine part series covering the topics I wish my doctors would have talked to me about when I was first diagnosed with fibromyalgia and psoriatic arthritis.
- 1 Mental Health
- 2 Therapy is Important
- 3 Intimacy Issues
- 4 What is Health Journaling?
- 5 Pain Relief Options
- 6 Relationship Troubles
- 7 Need for Assistance
- 8 Importance of Self-Care
- 9 Keep Moving with a Mobility Aid
- The Cost of Living with Fibromyalgia
- Invasion of the Brain Snatcher! Tips for Dealing with Fibro Fog
- Four Wearable Pain Relief Devices for Fibromyalgia and Arthritis
- Seven Embarrassing Fibromyalgia Symptoms
- F words that describe what it is like to live with Fibromyalgia
- 5 Ways to Reduce Fibromyalgia Pain