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ME/CFS Reality – Commit to Being A Patient

8/19/2014

14 Comments

 
Picture© 2014 TSM
I recently received an e-mail from a physician who has been struggling with ME/CFS for several years.  Like many of us, he has been given the ‘go home and have hope speech’, has gone to the high priced medical clinic to no avail, and has been treated by compassionate practitioners who haven’t been able to help him either.

Now, he’s as sick as he was at the beginning.  Square One.  SO Frustrating.  And SUCH a familiar story.  So many of us have gone this route of exploring every path we can think of knowing that we have a real physical illness.  And only making small inroads.  Glimmers of hope that eventually fade.  And often, we find ourselves back at Square One.

If you’ve read my book, you know that when I got back to square one that was when we decided to turn me into a lab rat.  I literally spent a year in bed on a fixed schedule no matter how I was feeling.  I allowed myself to increase my activity - in very small increments - only when I had a solid period of time without any problems.  This was in many ways torture for a type A like me.  But I stuck to the plan because everything else had failed.  I stopped looking for the miracle and focused on unraveling the clues to my own version of ME/CFS.

The biggest obstacle I had was allowing me to be sick.  To be a patient.  To commit to giving up functioning for a while in order to get a normal life back down the road.  And I think I needed to waste all the other time on those other paths.  It drove home the point that I wasn't getting anywhere going at this half heartedly.  Those were wasted years anyway so what was one more year if it paid off?  I know that this is not an option for many people because of responsibilities.  But somehow, it’s important to relinquish our need to find the ‘silver bullet’ and get focused on figuring out how to get well.


How do you deal with the struggle between getting well again and also having a life?  What are your strategies?  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.

I’ll be away next week so look for my next posting on Tuesday September 2nd.  And consider being part of the conversation.

Be Well Again,

Martha


14 Comments
Andrea link
8/19/2014 07:34:10 pm

This is a challenge for me right now as I try and come out of a 3 year relapse after being more stable for around 6 years. One of my biggest challenges on being a 'patient' is that many people don't know I'm sick. And of some of those who do, they don't understand and disregard my illness for being real because I always look my best and have a smile on my face! Trying to hide CFS is awful, but telling the truth is often awful too. I find myself in situations where I am making up excuses why I can't do things/show up places. I feel like I need support for a year to get over this and stabilise but can't seem to find the support I need. The one friend I do have who had CFS claims to be cured by the lightning process. Not an avenue I care to venture down myself.

Reply
martha
8/20/2014 02:03:09 am

ME/CFS is a cruel disease on so many levels. To be so sick and yet appear in public as being well is beyond frustrating. I wanted to literally scream at the world. And having to 'cover up' what's really going on is a choice that many make - including me. The misunderstandings and the stigma are all too real. Finding the support you need is a challenge but can be key to recovery. For me, support came from a few people who knew me well before I was sick. They 'knew' that this wasn't me and wanted to help me get back to full health. If you have a person whom you think could give you support, ask them to read my book or any other personal account of ME/CFS that you feel reflects your own experience. This truly helps to communicate your situation and needs. As for the lightning process, I've only read about it and I'm not sure I would try it either. Anyone with first hand experience? Thanks Andrea!

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Donna
8/19/2014 08:00:11 pm

For me, it's been re-defining what a life is. It's taken me a long time to accept this illness and not without processing a myriad of emotions: anger, sadness, frustration, hurt, envy, etc. I decided at one point that I had to find the "balance." Making my life fit my health while consequently improving my health to fit my lifestyle. Unfortunately, it's been much more making my lifestyle fit my condition. That's involved simplifying, prioritizing, delegating, and learning gratefulness. What was most difficult for me was learning to put myself first. Then, it involved deciding what was most important to me. Possessions, activities, and even some people were eliminated gradually. The enthusiastic person who wants to try and do everything still lives inside of me, but I've had to learn to say to myself, "Not for me, not right now," and be okay with that.

Reply
Martha
8/20/2014 02:25:25 am

Compromise is usually a result of give and take with a loved one. ME/CFS is just take, take, take. And trying to 'live' with the cruel, inconsistent demands of ME/CFS was for me a kind of torture. Eventually we all learn to put the brakes on and slow down our lives to accommodate ME/CFS but that can't be the only strategy. We need to pair that with finding the clues to solve our individual versions of this cruel disease. And was I ever OK with that? It was a daily struggle. Thanks Donna!

Reply
Donna
8/21/2014 09:32:42 pm

My heart goes out to Andrea. (Nice name, by the way, my daughter's name is Andrea too.) For many years I hid behind a mask of wellness. Why? When I did speak of my illness, people's comments, even the well-intentioned ones, were hurtful. The emotional upset only added to my struggles of living with CFS. It's been only in the last year that I have been more open to people about it. Not really to seek understanding for myself, but to educate those who are willing to listen. But, it's taken many years to get to this point, and I don't recommend it to everyone. The feedback is still often painful and frustrating. I hope that you can find the help that you need in your daily life, Andrea. I asked my mother to read Martha's book, and it has given her a better understanding of the challenges that I live with.

Reply
Andrea link
8/23/2014 08:41:23 pm

Hi Donna, what a lovely message from you....thankyou!! I am in a situation this coming week where a lady wants to go on a strenuous walk with me, I could do that when not in a relapse, but not right now. She doesn't know I have CFS. I'm going to give a brief explanation. I thought about excuses, but perhaps I'm getting too old for that ;-) I'm only 40 though! I did surprise myself last year when I shared with a Mum at my daughter's school briefly and ashamedly that I had CFS. I didn't need to be ashamed. She totally understood. Her Mum's had it many years. Meeting someone who gets it is such a liberating feeling.

Reply
Donna link
8/21/2014 10:10:31 pm

Afterthought: I remembered an article, "The Spoon Theory" written by a young woman who lives with lupus, another invisible illness. It does a beautiful job of explaining how it is to live with limited energy. It also might be worth sharing with among your potential support system, Andrea. The link is: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Reply
Martha
8/22/2014 01:23:01 am

I highly recommend 'The Spoon Theory" by Christine Miserandino. It's a wonderful way to communicate the energy limitations that all chronic patients deal with everyday. Thanks Andrea!

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Andrea link
8/23/2014 08:42:48 pm

Thanks so much Martha and Donna. Yes, someone shared the spoon theory with me a few years ago. Incredible! I feel like keeping a copy in my handbag :-)

Tim Boland
8/23/2014 02:53:55 pm

Thank you Donna for the link for The Spoon Theory, a very touching way of speaking about managing energy and one's illness. I was pleasantly surprised to see that it is a pdf file so was able to save it, so I can refer back to it, and perhaps also share with appropriate people.

Reply
Donna
8/24/2014 04:52:34 am

It resonated with me when Andrea said, "I didn't need to be ashamed." But, I was ashamed too for many, many years as though I somehow caused it. Sure, I couldn't have taken better care of myself and stressed less, but lots of people live the lifestyle that I did and are fine. Then, one day during my physical therapy appointment, my PT said, "This happened to you." Those few words were an epiphany!! It happened to me; I didn't cause it. It lifted the guilt and shame that I carried and they blew away with the wind.
And, yes, Andrea, that's what Martha's blog does for me...it's liberating! I never thought of it that way! To be able to share with people who get it and who positively support each other. Thanks so much Martha, Andrea & Tim!

Reply
Martha
8/24/2014 07:28:22 am

Donna, This conversation is all about having positive support as each of us finds the clues for our specific versions of ME/CFS and develops strategies to walk the path back to wellness. And this cruel disease known as ME/CFS happened to ALL of us and unfortunately we ALL get it. We're in this together. Thank you for your heartfelt and honest contributions to the conversation!

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Andrea link
9/23/2014 05:53:46 pm

'Commit to being a patient' is a phrase that's become increasingly reassuring for me...thankyou Martha. If I am finding myself getting stuck in the guilt cycle, or wanting to push my body on a bad day, I catch myself and wholeheartedly remind myself I do have a chronic illness that deserves respect. Just like any other illness. Some other people may not respect it, but for those who do, I am grateful. I recently had to swallow my pride and share with someone who wanted to go on a strenuous walk with me, that I can't at the moment due to CFS. I was so nervous...however I needn't have been. Fortunately a family member of her's had had it for several years so she understood....so liberating.

Reply
Martha
9/24/2014 12:56:11 am

One of my mantras when I was sick, "Have patience and be a patient." Not easy to always follow but the rewards are great. It's always taking a chance to talk about ME/CFS. You never know what reaction you'll get. When someone understands, it's the best! Thanks Andres

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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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