In today’s post, Meshea Crysup kindly gave her Confessions of a Spoonie!
Meshea Crysup was diagnosed with Fibromyalgia in the late 1990’s but had symptoms as far back as she can remember.
With a background in healthcare, her experience includes Long Term Care consulting and nursing administration, public speaking, adult education and staff development. Meshea blogs and speaks openly about having fibromyalgia. She founded fibroLIFE© over twenty years ago and still writes her blog: LIVING a fibroLIFE©, as well as continuing to update her fibroLIFE Symptom Tracker©.
Meshea Crysup, along with her husband and “furry daughter” moved to Vicksburg in 2014. A life-long history enthusiast, she was excited about this opportunity to further develop that passion.
She founded: Rediscovering Historic Vicksburg (which will soon be launching RHV Books with the release of its first book the beginning of April!) and the Civil War Bloggers, Authors, Photographers, & Speakers Network. She is vice-president of Vicksburg Civil War Roundtable.
Also an author, blogger, and self-taught social media promoter, Meshea donates her time to promoting:
- Vicksburg Civil War Roundtable
- Baer House Inn
- Haunted & Historic Vicksburg
- Vicksburg Pilgrimage
- Vicksburg B&B Association
- Other local history-based businesses, groups, organizations, as well as history-related events and individuals involved in the “business of History”.
Meshea & her husband enjoy traveling, in spite of LIVING a fibroLIFE©, and do so as often as possible.
In keeping with her determination to LIVE her fibroLIFE© to the fullest, Meshea, who was a recording artist/performer/musician/singer/songwriter as a teenager, is also making/taking time for her music in her fibroLIFE©.
What condition/s do you suffer from and when were you diagnosed?
I have Fibromyalgia. Of course, that means I “have” a lot more than that. I have IBS, anxiety, depression, multiple allergies, sleep apnea, Vulvodynia, spastic bladder, amenorrhea, TMJ, Musical Tinnitus, Tinnitus, headaches, mental fogginess, and I’m sure I’m leaving something out!
I was diagnosed around 1997. To be honest, it’s hard to remember exactly now, but that is close.
What are the main symptoms you suffer from?
Chronic pain & soreness, fatigue, anxiety, fibro fog, headaches, allergies, Vulvodynia, spastic bladder, IBS, and TMJ are my worst/most common symptoms or causes of symptoms.
What 3 things have you learned about your condition since being diagnosed?
I have had FMS as far back as I can remember, thus much of my childhood issues make sense now.
FMS management is really all about learning how to LIVE your life in a way that does not cause flares and the ONLY WAY TO DO THIS is with meaningful symptom tracking. You have to identify what is going on with you, what triggers it, what helps or does not help…and FMS is highly individualized thus each must track and learn from their own results!
FMS is not new, nor is it a “simple” problem caused by “just one thing”. Like there is not just one cause for cancer, thus cancer treatment, prevention, etc. is so complicated—so it goes with FMS. It seems to be that one is predisposed to it for various reasons and it may or may not be triggered in an individual, or triggered at varying degrees.
In what way has the NHS supported or not supported you?
What is the hardest part about your illness, in your opinion?
Fibro Fog prevents me from “doing” and I am a die-hard over-achiever! Fatigue follows closely behind the fog, if not neck-and-neck, with interfering in LIVING my fibroLIFE©. The anxiety just stops me in my tracks, especially when I am fogged and/or fatigued, and I just cannot get things done!
The fact that others cannot “see” FMS, along with the extreme variations in symptoms and their severity, has caused me to even question myself at times. The chronic nature of FMS and the lack of understanding of the word “chronic” along with the judging by others took me a long time to learn to cope with.
List 3 phrases you hate hearing off other people about your condition.
“Oh, I have that…” (No, you do not. Not if you can say it like that!)
“Why aren’t you taking that medicine they have for that now? It looks like that is really helping!”
“You just need to exercise, take some weight off, and stop letting everything worry you so much.”
Oh…sorry but I have a 4th that has to be mentioned: “I’ve got the cure for FMS!”
List 3 things you wish people would say/do instead.
My 3 are just more things I want them to STOP doing, lol! Sorry about that but it’s just the truth: STOPPPING these things will result in thinking differently, thus will help most in the long run!
STOP telling me about “cures”. In fact, do not EVEN use the word “cure” when talking to me about FMS treatment options! Stop asking me if I’ve tried “this or that”.
STOP saying it’s all because of gluten! Diet is NOT the only issue or cause. If going gluten-free “cures you”, you have Celiac Disease, not FMS!
STOP telling me I am just not active enough/rest too much. I KNOW what I can and can’t do, thank you very much!
Do you have any cheats/tricks to get you through the day or to help you complete certain tasks?
WOW…one cannot LIVE a fibroLIFE© without a whole basket of them!
Initially, the system I developed for tracking symptoms.
My main one now I suppose is that I write things I need to do on index cards. ONE THING PER CARD. I put them on a cork board. Then, when I’m trying to THINK so I can actually DO/accomplish something, I can go to the board, pick ONE, and it is not as overwhelming as having a whole list to look at. I even make notes at times on the back so I have a “cheat sheet” on how to do whatever is on the card.
Have you picked up any new hobbies or activities since being diagnosed that you didn’t think you would?
No. I always had TONS of interests, still do! I’m never bored, can spend a LOT of time alone, etc. I’m a reader, writer, thinker, planner, creative-type, musician/singer/songwriter… I don’t have time nor energy for NEW hobbies!
What do you do? Work, study?
I was a Long Term Care Consultant, fixing nursing facilities that were out of compliance with government regulations. Yeah, try doing that with fog and fatigue! Now, I blog and write about FMS but also about Rediscovering Historic Vicksburg. I now promote almost all of Vicksburg’s “History as Industry” related business on social media for FREE. I can’t be consistent and sometimes I’m not the best at it due to the fog, so I can’t begin to justify charging any of them. I LOVE history though, so it is very rewarding!
What are you plans for the future?
I plan to keep on blogging, writing, promoting, and traveling more… I plan to keep on LIVING my fibroLIFE© to the fullest.
Is there anything you would do differently since being diagnosed, and why?
I would have changed my on mind-set MUCH SOONER! How we CHOOSE to react is all we can really control. Choosing to “just react” is a copout and a pet peeve of mine! The whole, “This is just how I am…” thing infuriates me. No, we CHOOSE how we react. I should have chosen more wisely, sooner…
Has your illness taught you anything about life?
Well, number 12 is a biggie! That plus life is too short to NOT LIVE TO THE FULLEST, whatever “the fullest” may be given one’s situation.
What advice/information do you wish you were told when you were first diagnosed?
I wish someone had developed a simple, effective, useful way to track symptoms so I did not have to! I wish doctors had understood making only ONE CHANGE at a time was the only way to know what worked or did not work!
What would be your main piece of advice for people who has just been diagnosed with your condition?
Track your “big 4” symptoms (Pain, Fog, Fatigue, and Mood)
Communicate with your doctors, keeping in mind THEY WORK FOR YOU. Use the info to develop your own individualized treatment plan.
Recognize that YOUR ACTIONS, REACTIONS, and BEHAVIOR are all you control but also essential that you do control them in a POSITIVE manner. This will take you far and help you the most, the quickest.
Do not expect to be “pain free”. If you medicate to that point, you’ll miss LIVING.
Do NOT chase the illusive “magic beans” or “snake oil”.
YES YOU CAN LIVE in spite of having FMS.
Thanks again to Meshea for taking part in this blog series, and if you enjoyed this, remember to go and check out her blog!
- On TUESDAY 11th April, Jodie will be posting the next ‘Confessions of a Spoonie’ from one of our guest posters!
- On THURSDAY 13th April, I will be posting the next ‘Outside Looking In’ posts!
- Don’t forget to check out the posts from the previous week, on Jodie’s blog, and also on my blog!
Remember, if YOU want to get involved, please email me at firstname.lastname@example.org to let me know which series you are interesting in participating in and I will send you the questions!
For more information on the events, click here for Confessions of a Spoonie and here for Outside Looking In.