When you have an invisible illness you hide it from others maybe for the fear of being judged or that people won’t understand.
Thankfully I’m getting better at being open about my CFS/Fibro. I’ve often been told how well I look or that I must have a great exercise routine but the truth is I’m just lucky to have a slim frame and have a good understanding of the importance of a balanced diet. In reality I often have to choose between getting a 20 minute walk or cooking the dinner because if I do one I certainly have to forfeit the other.
I’ve felt unwell since Easter but kept pushing myself to the limit to remain in the classroom with my students up to the summer holidays hoping I could recoup my energy then. I also rose to the challenge of an exciting new experience because I wanted some adventure, some fun and some new learning in my life, by attending ICASSI BONN 2017
While Bonn was wonderful it’s now apparent that I drained down an already low battery and as a result I’ve exacerbated a heart complaint. Now I’ve hit the wall. I’ve had no choice but to stop. I’m unable to function at home let alone work.
But the hardest part is I’m really missing the social interaction. I live in the countryside and I feel the isolation. I miss my colleagues and the daily conversations we had. I miss my students. I miss being a part of their lives because they helped me take the focus off my own struggle with chronic pain. Their eagerness to contribute to our classes encouraged me to overcome some of my fatigue. They let me into their lives and being focused on their goals got me through many days where I thought I would surely crumble under the stress that bullying was having on both our teenage children.
I soaked up my students’ warmth and inclusion. We were partners in a learning space. On a daily basis I let my students see my difficulty with spellings…how crazy is that I hear you say, a literacy tutor who struggles with spellings? Initially my students thought I should be an expert in spellings but my struggle showed them that it’s ok to make spelling errors and that spellings are something you can continue to improve throughout your lifetime. Soon they relaxed and worried less about spellings.
I have learned that I am not responsible for my students’ learning but I am responsible for my own teaching. However the fibro fog, pain and exhaustion prevents me giving the level of service I want to give. It makes the endless bureaucracy involved in the preparation of class materials and assessment requirements insurmountable.
Now I have to listen to my body and practice self-care. I have to accept the exhaustion and isolation and that takes strength. I have to recharge my own battery first and my one fear is can I ever sufficiently recharge a battery that is chronically drained?
Much love,
Marie xx
September 22, 2018 at 5:00 am
Hi Marie,
I have had FM/CFS now for 13 years…learning to listen to our different FM/CFS body battery is the learning curve.
Differences;
Wellness has 100% full battery with
30% being used for autonomic activities (breathing, heart, body functionality etc…)
+30% for workloads
+ 30% for emotions/socialization,
+10% residue = 100%
Illness has 100% full battery too but with the following major differences:
75 -85% is used in autonomic activities majorly impacted by chronic pain & fatigue
Leaving only 15 – 25% for workloads, emotions & socialization = 100%
No residue left!
This is why we find it so difficult to continue working, socialize & why we become emotionally depleted so very quickly.
Learning to pace ourselves within the 15-25% is the major challenge 🙂 … prioritizing is the key I have found.
Gentle hug,
Jennifer
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September 22, 2018 at 7:38 am
Wow, Jennifer this is news to me and really puts a lot of my struggle into perspective. I wish I had known this years ago. I was always pacing and prioritising but had got to the stage where I was just existing to meet the demands of work and nothing left but scraps for everything and everyone else. Thank you so much for reading and taking the time to add such a detailed response. Do you know the source of this information? I would like to share it in a post and of course I will add a link to your blog. If you have a specific post you’d like linked just let me know. Much appreciation for your time & gentle hug! Marie x
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September 23, 2018 at 1:05 am
Marie,
This comes from my own twist on the “spoon analogy” of Chronic illness through counseling Chronically ill patients for pain management & coping strategies….& in my own personal experience with chronic illness through the eyes of a professional health worker. 😀
As I found the “spoon & phone/laptop battery analogies” (which others have given) don’t explain how our body systems work in their autonomic functioning from a physiological, as well as, a psychological perspective.
I’ll post an article up this week on it for you 😀
Jennifer
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September 23, 2018 at 7:04 am
Hi Marie,
Just posted “Knowing your body’s capacity”
https://teawithjennifer.blog/2018/09/23/knowing-your-bodys-capacity/
😀 Jennifer
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September 23, 2018 at 11:12 am
Thank you so much Jennifer I’m rather unresearched on the whole fibro/cfs area despite having it almost 20 years. I was only referred to one consultant by my gp after about 7 years and that was a very negative experience as he said “what can I tell you that the last 100 doctors haven’t told you” and wanted to trial me on some new parkinson medication, which my gp thought was a definite no-no and which made my mind up to just do it myself one day at a time. I’ve just looked up the “spoon theory” and so much of it is like me. I’ll look forward to learning more from your upcoming article! Xx
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September 24, 2018 at 12:37 am
You’re welcome Marie, I’m glad you found clarity & understanding through my article for what you are experiencing. 20 years is a long time to do it alone with a chronic illness 😦 .
Many Gp’s & Rheumatologists have greater understanding & are more compassionate of FM & CFS sufferers today…♥ & gentle hug dear friend,
Jennifer
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September 24, 2018 at 6:35 am
Yes I can see now with the benefit of hindsight, I guess, until now, I put my children and everything else first and second and myself third…not a wise practice! Soaking up and feeling reassured by your lovely virtual hug Jennifer! Xx
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September 22, 2018 at 10:48 am
Oh Marie, I’m so sorry you’ve had to stop, but I think you should be proud for saying all of this here on your blog because it’s not easy. Admitting I was struggling, then that I’d been let go from my job because of surgeries, then how I worry so much about the future because I can barely manage my life at home let alone with a job because of exhaustion, pain, fibro… It’s a hard thing to talk about, but it takes courage to do so and to take a step back from work to focus on yourself. I think the battery will probably never be entirely full and it’ll drain pretty quickly (sounds very much like the iPhone already..!) but all we can do is try to keep it above the 50% mark more often than not if possible. In the mean time, away from work, focus on you, on pacing, nourishing your soul, writing, enjoyment… I’m sorry I can’t really help here but I just wanted you to know my heart aches for you and that I hope you’re okay. Sending hugs,
Caz xxxx
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September 22, 2018 at 12:33 pm
Caz you say you’re “sorry you can’t really help here” well the opposite it true, you can never know how much your comment, your time and sharing your story has meant to me! Thank you for giving me an insight into your story, I have read and tried to follow you previously. Your story gives me courage as I also wonder what’s ahead. But I have been fooling myself for a long time trying to be all things to everyone but my battery is very low now and I just have to listen to my body. I’m enjoying the virtual hugs and sending warm Irish hugs back! Marie xx
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September 22, 2018 at 1:11 pm
While it may not see like it at the time, you really have a lot going for you.. ““When one suddenly finds oneself in a swamp up to one’s armpits in alligators, it is difficult to remember the objective was to drain the swamp”..
One can be alone and isolated in a crowd… we have the option of taking a walk or cooking dinner, folks like Stephen Hawking don’t have that option… 🙂 Perhaps a compromise can be made and you can do both a walk and dinner after… you can still accomplish a great deal in life, just have to make an adjustment or two while steering your ship… “The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.” William Arthur Ward
Perhaps now would be a good time to connect with your inner self (I use meditation) and rebuild from the inside out… in either case, there is a great deal of living you can do, you can still follow your dreams!… “If you think you can, you can. And if you think you can’t, you’re right”. Mary Kay Ash
Have a wonderful weekend and may every day be filled with happiness!… 🙂
“When you are truly inspired by some great purpose, some extraordinary project… your mind transcends its limitations, your consciousness expands in every direction, and you find yourself in a new, great and wonderful world! Then those dormant forces, faculties and talents inside you become alive, and you discover yourself to be a greater person by far than you ever dreamed yourself to be.” Patanjali “
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September 22, 2018 at 5:08 pm
Wow Dutch I’m speechless and that must be a first! Thank you for giving so much of your time to read and give your detailed reply. It’s very true that you can be surrounded by people and still feel lonely. I am always trying to see the best in every situation, sometimes pain fogs the lens and I’m aware that a lot of people have it a whole lot worse and as you point out at least I have choices! I think bureaucracy is the stumbling block for me as it takes a lot of time and energy I don’t have. I know things will work out exactly as they are meant to! Have an enjoyable weekend also!
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September 24, 2018 at 12:02 pm
Marie,
I am so sorry you feel so drained and want you to know that if there is anything I can do please let me know. You are not alone my friend.
There is no advice I can give in your current situations as it is not something I have experience of – my own exhaustion last year was for purely psychological reasons. I do know how you feel about bureaucracy – it is the last thing one can cope with when exhausted.
Hope things improve for you soon 🙂 Hugs, x
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September 24, 2018 at 8:21 pm
Knowing that you care enough to write such a thoughtful comment is more than enough Darren and made me smile! I am blessed to have my blog and to have met such supportive friends. It is a strange illness as when it eases you feel ready to take on the world and almost deny that you were sick at all but then the good patch can pass just as quickly and you are not fit for anything. It has physical & psychological aspects. I was diagnosed almost 20 years ago but as you can see from some of the comments above after a bad experience with one consultant I chose to handle it myself so I am not well read around it. I just take it one day at a time! Thanks again Darren. Xx
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January 26, 2019 at 12:00 am
I just found your blog, Marie! I’m Kim and am 20+ years into my fibro diagnosis and all that comes with it. This was a heartfelt post. You are very honest. I am excited to read more posts by you! Be kind to yourself. ~k.
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January 26, 2019 at 12:32 am
Hi Kim, I’ve read lots of your comments and feel I know you from Terri’s blog. Thank you for reading and for your kind and encouraging comment. Blogging has helped me admit my fibro/fatigue (20 years after diagnosis).
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January 26, 2019 at 12:41 am
Yes! Terri’s blog! That’s how I know you. It’s been driving me crazy trying to figure out why I know “Create Space.” Blogging can be very cathartic. It has allowed me to grow. Hands down, the best blogging community. 😊 You are 20 years in, as well! I think we are close in age, too. Experiences to share! ~K.
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January 26, 2019 at 8:58 am
Yes that’s me and maybe on Mer’s blog also. We are a community of learners and it is most definitely cathartic! I’m looking forward to moving forward together! Le grà, Marie xx
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