...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Mask – Reveal Yourself

1/13/2015

9 Comments

 
Picture© 2015 TSM
I awoke this morning to a fresh covering of sparkling powdery snow.  It clung to every branch of each tree and hung in clumps on the evergreens.  The snowy carpet was a brilliant white when the sun shone and it disguised every little blemish which had been visible the day before.  It reminded me of when I was struggling with ME/CFS and I would bravely wear my mask of ‘I’m doing ok’ even though I was hard pressed to hold it together.  I had been taught by others that they were not interested in my illness or didn’t understand it or didn’t believe that I had a real physical illness.

It drove me to not talk about it.  I had come to flinch at ‘the looks’ whether they were disinterest, confusion or pity.  Unfortunately, I began to only see those people and under value the people closest to me who cared and who understood.  I would sometimes hide my true situation from them as well.

It’s hard to stay the course with ME/CFS and work your way back to health by watching your patterns and conserving your energy.  You need a few people to be there with you.  Not a crowd – just a few.  When I finally revealed my true situation to a few close friends, the response was supportive and unburdening for me.  I realized how hard it had been to wear the mask of ‘I’m doing ok’.

Take a risk with a trusted friend and let them know how you are truly doing.  Or reach out to someone who already knows and check in.  For a selective few, their support and caring can make a huge difference.  Do you have support from a few friends or family?  How do you let them know how important they are as you find your path back to health?   Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.


Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha



9 Comments
Tim Boland
1/14/2015 01:58:14 pm

Truly lovely description of the wonders of snow, I see this too when we get some fog here, that the simplest of landscapes can be turned into something wondrous.

I am 'taking a page from your book' tonight, as I am tired and giving myself the gift of rest, settling in with the boob tube, as it requires no effort, often I'll just coast off to sleep, sometimes I will awake in my chair gently snoring. The goal of wellness is never far from my mind.

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Martha
1/15/2015 05:43:56 am

I like your focus on wellness Tim! :)

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Andrea link
1/14/2015 04:28:51 pm

This is so beautifully written, and I'm sure anyone who has/had CFS can completely identify with every single word. Sometimes I've taken a risk to tell someone the truth about my health, and of course get the 'looks' etc you describe, but it's been rewarding lately to have a few people who say "oh yes, I know someone with that" and phew...they get it. No more explanations needed. My best support member at the moment is an in-law who has a friend with fybromyalgia. She totally understands my patterns of up and down by watching the same in her friend. It's great to be understood.

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Martha
1/15/2015 05:46:11 am

It's wondefful to have someone who 'gets it'! We only need a few... Thanks Andrea

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Donna
1/14/2015 10:04:40 pm

Once again, Martha, you have hit close to home. I do have one close friend who is also chronically ill. A different illness, but the emotional experience is very much the same. With her I can be totally honest, and we support each other. My husband is also very supportive and tries to understand. But, through a series of circumstances over the last few years: my husband developed an anxiety disorder that played a part in estrangement from most of his family, I am left feeling raw and hypersensitive. My experiences have changed my view of the world and its people. I realize that my outlook is probably skewed, but it is leading me further and further into isolation, and I don't know how to change it. Most people would probably call it, "depression," but I have suffered with depression twice in my life, and this is not the same. There's no hopelessness, just a need to shield myself from more hurt. It's fear.

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Martha
1/15/2015 05:52:24 am

Like turtles we need our tough shells for protection. But then we need to take a chance and poke our heads out. Otherwise we'll never get anywhere... Sometimes the possible hurt of rejection can be worth the finding of a wonderful supporter. We just have to stick our necks out a bit. Thanks Donna for reminding us...

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Andrea link
1/15/2015 07:06:48 am

Hi Donna, my heart goes out to you. I totally have been there with the fear and isolation. Its ongoing and sometimes I have to force myself to be amongst other people, but sometimes tire of listening to people's lives who aren't ravaged by an illness like our's. I also understand what you mean by depression not being the same as fear and hopelessness. Sometimes I prick my conscience by telling myself that in order for CFS sufferers to do better, they need to be around other people. So if I am feeling like I want to lock myself away, sometimes I tell myself that by doing that, I could feel sicker and that inspires me to go out and make contact. And it doesn't need to be a huge amount of contact. Often just conversation with an aquaintance is very uplifting. Take care.

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Tim Boland
1/16/2015 03:51:06 am

Donna, I understand well the withdrawal from other people. In the beginning, I was confused and bewildered, not knowing what the illness was and wondering how I would ever get better. I opened up to some people who had a real knack of being so insensitive and saying hurtful things. One neighbor more or less said that he had always taken care of himself, therefore not becoming ill, the implication being of course that I hadn't taken care of myself. Later I found that as a younger man he had his own health issues. I have found myself feeling better and safer when I tell only a select few people about my illness, and with those I started slowly with only a little information given, rather than really opening up, testing the waters to see if that person was safe. With others I will say something like 'I have some health issues' or my back bothers me at times, both true. I also put out vibes that for the most part, I don't want to talk about it. This has helped me a great deal.

Reply
Donna
1/16/2015 10:06:36 am

Thank you Martha, Andrea, and Tim for your kind comments and advice. Your support means a lot to me. I'm hoping in time that this, well, giant pity party that I'm having will pass, better sooner than later, and I'll embrace my gratefulness again.

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    Hello,  I'm
    Martha Kilcoyne

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    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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