Category: Groups

ME/CFS/SEID Isolation – Be Connected and Get Help

4/25/2017

I was recently in a remote place with no cell service and no access to WiFi. At first it was bliss. No phone ringing. No text messages requiring immediate response. No daily diet of news feed. Just quiet and my own thoughts. But of course, I eventually felt a bit isolated and disconnected. It reminded me of when I was struggling with ME/CFS/SEID and how alone I felt at times.
We are trained in our culture to be independent. To be strong and capable. The old ‘boot strap’ adage comes to mind. We believe that people who are dependent are weak. They are inadequate. We somehow learn not to ask for help. Then we find ourselves in a situation like ME/CFS/SEID where we need to ask for help and we can’t. We don’t want to be a bother or impose. We don’t want to appear weak or needy.

So, we find ourselves struggling with ME/CFS/SEID, which is a cruel disease that leaves us feeling better one day and crashing the next, and we’re fearful of asking for the help – which could be key to our recovery – because we’ll be seen as weak and ‘just depressed’. Doubly cruel.
It’s important to take a good look around and see those in your life who could help. Make an effort to connect. Make an effort to explain what’s happening to you. If you’ve read my book, give it to them and ask them to read it. If people don’t understand what you’re going through, it’s hard to support you.

One lesson I learned after I was fully well again – people who cared, who wanted to be connected and who wanted to help had no idea what to do. They need your help to understand and to know how to help you. Divide up your needs into smaller pieces so it won’t be too much for one person. What are you doing to be connected and to get help? What are your strategies ? What works for you? Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

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

Be Well Again,
Martha

2 Comments

ME/CFS/SEID Support Network - You have to Reach Out

5/10/2016

2 Comments

Recently, the topic of isolation and ME/CFS/SEID has been raised frequently in emails I’ve received. So often when we’re in an unfamiliar place, we tend to be isolated. If it’s geographically unfamiliar, we resist asking for directions and just muddle along without help. If it’s emotionally or psychologically unfamiliar, we don’t want to talk about it for fear of others judgment that we’re weak or crazy. And if it’s physically unfamiliar, we rely on a medical system that for the most part doesn’t have a clue what to do with us. For ME/CFS/SEID sufferers, that creates a triple play of isolation.

In order to break out of isolation, we need to reach out. Unfortunately, the nature of ME/CFS/SEID separates us from many of the daily networks that we used to depend on for connecting and support. Our workplace, neighborhood, community groups and social groups are diminished if not completely unavailable due to the isolation that ME/CFS/SEID can create. But despite our very limited energy levels, we need to reach out in order to create a support network. So how do we do that?

After I was fully well again, one of the important things I learned was that many of the people around me wanted to help but didn’t know how to – friends, family members, neighbors, community members. And even though I thought I had explained to them what was happening to me, many of them had no idea what I was actually going through. At the time, that seemed unbelievable to me. But I realized how true it was when so many people – including a family member whom I spent time with – told me after they read my book that they never understood my illness until now.

So for someone who is already dealing with ME/CFS/SEID each and every day, please understand that MOST of the people around you don’t know what you’re up against. And really, when you think about it, how could they? As ME/CFS/SEID sufferers, we struggle to understand the roller coaster cruelty of ME/CFS/SEID. It’s a nightmare!

OK, so you’re going to reach out. First, people need to know what’s happening to you. If you have a copy of my book, give it to the people close to you and ask them to read it. Or find other pieces written by ME/CFS/SEID sufferers and share them. This will be an eye opener for your family and friends. Then, come up with ways that people around you can help. Even the simplest things can make you and them feel better. Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

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

Be Well Again,
Martha

2 Comments

ME/CFS Support – Talk About What has Happened to You

7/15/2014

8 Comments

I often hear from people struggling with ME/CFS who feel alone and isolated. Their efforts to stay connected are stifled by their limited energy and their inability to explain ME/CFS. We’ve all been there. And for many of us, despite the fact that we deal with ME/CFS every day, we don’t really understand it.

When I was sick, I didn’t know how to tell people what had happened to me. The official definition of ME/CFS didn’t help. It’s a group of vague symptoms that occur for 6 months or more. It’s not even a disease – it’s a syndrome.
And when I was able to be up and around, I didn’t look sick.  People didn’t see me on the days when I was bedridden and unable to function normally.

I did make an effort to explain what was happening to me and thought that I had been successful with a few of those closest to me. I didn’t realize until after I wrote my book how many people never understood despite my efforts to explain. My sister came to me in tears after she read my book, apologizing for not knowing how sick I had been.

Make an effort to talk about your ME/CFS struggle. If you have a copy of my book, share it. Ask others to read it. There are many other personal accounts of struggles with ME/CFS.  Share the ones that match your own experience.  Make every effort to communicate what has happened to you.  Have you had any successes?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

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

Be Well Again,

Martha

8 Comments

ME/CFS Support Network - You have to Reach Out

10/1/2013

2 Comments

Recently, the topic of isolation and ME/CFS has been raised frequently in emails I’ve received. So often when we’re in an unfamiliar place, we tend to be isolated. If it’s geographically unfamiliar, we resist asking for directions and just muddle along without help.  If it’s emotionally or psychologically unfamiliar, we don’t want to talk about it for fear of others judgment that we’re weak or crazy.  And if it’s physically unfamiliar, we rely on a medical system that for the most part doesn’t have a clue what to do with us.  For ME/CFS sufferers, that creates a triple play of isolation.ME/CFS sufferers, that creates a triple play of isolation.
In order to break out of isolation, we need to reach out. Unfortunately, the nature of ME/CFS separates us from many of the daily networks that we used to depend on for connecting and support. Our workplace, neighborhood, community groups and social groups are diminished if not completely unavailable due to the isolation that ME/CFS can create. But despite our very limited energy levels, we need to reach out in order to create a support network.  So how do we do that?

After I was fully well again, one of the important things I learned was that many of the people around me wanted to help but didn’t know how to – friends, family members, neighbors, community members.  And even though I thought I had explained to them what was happening to me, many of them had no idea what I was actually going through.  At the time, that seemed unbelievable to me.
But I realized how true it was when so many people – including a family member whom I spent time with – told me after they read my book that they never understood my illness until now.

So for someone who is already dealing with ME/CFS each and every day, please understand that MOST of the people around you don’t know what you’re up against. And really, when you think about it, how could they?  As ME/CFS sufferers, we struggle to understand the roller coaster cruelty of ME/CFS. It’s a nightmare!

OK, so you’re going to reach out. First, people need to know what’s happening to you. If you have a copy of my book, give it to the people close to you and ask them to read it. Or find other pieces written by ME/CFS sufferers and share them.  This will be an eye opener for your family and friends. Then, come up with ways that people around you can help.  Even the simplest things can make you and them feel better.  How are you going to reach out?  Who’s in your support network?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

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

Be Well Again,

Martha

2 Comments

ME/CFS Isolation – Be Connected and Get Help

9/3/2013

2 Comments

Cleome

Last week I didn’t post a blog because I was in a remote place with no cell service and intermittent access to WiFi. At first it was bliss. No phone ringing. No text messages requiring immediate response. No daily diet of news feed. Just quiet and my own thoughts. But of course, I eventually felt a bit isolated and disconnected. It reminded me of when I was struggling with ME/CFS and how alone I felt at times.

We are trained in our culture to be independent. To be strong and capable. The old ‘boot strap’ adage comes to mind. We believe that people who are dependent are weak. They are inadequate. We somehow learn not to ask for help. Then we find ourselves in a situation like ME/CFS where we need to ask for help and we can’t. We don’t want to be a bother or impose. We don’t want to appear weak or needy.

So, we find ourselves struggling with ME/CFS, which is a cruel disease that leaves us feeling better one day and crashing the next, and we’re fearful of asking for the help – which could be key to our recovery – because we’ll be seen as weak and ‘just depressed’. Doubly cruel.

It’s important to take a good look around and see those in your life who could help. Make an effort to connect. Make an effort
to explain what’s happening to you. If you’ve read my book, give it to them and ask them to read it. If people don’t understand what you’re going through, it’s hard to support you.

One lesson I learned after I was fully well again – people who cared, who wanted to be connected and who wanted to help had no idea what to do. They need your help to understand and to know how to help you. Divide up your needs into smaller pieces so it won’t be too much for one person. What are you doing to be connected and to get help? What are your strategies? What works for you? Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

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

Be Well Again,

Martha

2 Comments

ME/CFS Struggle – Many are on Similar Roads to Recovery

4/23/2013

2 Comments

The bombings in Boston have occupied my mind this past week. I’ve been especially thinking about the people whose lives were lost and those whose lives were permanently changed in an instant - so many who will face a long road of recovery with some of them coping with the loss of limbs. My heart goes out to them.

Good health is a gift that is often not appreciated until one loses it. As ME/CFS sufferers, we know the loss of a normal healthy life and not being able to fully function. And although the causes of our loss of functionality are different, the struggle is similar. While we work to unravel the clues to our own versions of ME/CFS, we fight many of the same emotional and psychological demons, the endless hours of being forced to ‘be a patient’ and the loss of parts of our self-identity. It is a long road to recovery for many with dis-ease. The key to getting there is focus, determination and support.

There are many in our communities who are on similar paths to recovery. Our hearts go out to those in Boston. Do you reach out? Are you connecting? 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

2 Comments

ME/CFS/Fibro Isolation - Stay Connected

10/9/2012

0 Comments

I spent the last week and a half in Florida taking care of my mother after her heart procedure. I am pleased to report that she is doing well and feeling much improved. Thanks for all your good wishes.

Since my mother isn’t internet savvy, there was no web connection in her home. After a couple of days, I was feeling isolated. After I week, it seemed like I was in Antarctica except for the sweltering heat and humidity outside. Of course I began to think about my struggle with ME/CFS/Fibro and how isolating it was especially in the mid nineties when personal daily use of the internet was in its infancy. Now it’s a blessing to have so much information and community available without requiring a huge expenditure of energy. Even half an hour or an hour a day can give a housebound ME/CFS/Fibro sufferer a link to family, friends, work and the greater ME/CFS/Fibro community. If you’re not reaching out to stay connected, start today. When you’re sick, an important part of your support network is encouragement and knowing that people who care are thinking of you. And the resources on the web about ME/CFS/Fibro can be transformational as well as informative.

After spending time with my mother, she has determined that it’s time for her to come north again where she has more support. We’re both back in New England now. She will be staying with me for a few months and then my sister as we figure out a plan for her going forward. She knows she’ll do better where she has less isolation and a built in support group. We’re pleased that she recognized this on her own.

And as our family takes on this new living arrangement with two generations under the same roof, I’m making sure that I’m connected to my friends and community for support. How are you staying connected with family, friends and the ME/CFS/Fibro resources on the Web? What strategies keep you connected? 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

0 Comments

ME/CFS Actions – Sign The Petition

5/1/2012

2 Comments

When I was bedridden with ME/CFS, I was struggling just to do what I could to help myself. The amount of energy I had to reach out to other ME/CFS patients was limited. And at the time, the internet was in it’s infancy in terms of organizational communication. For ME/CFS sufferers today, the World Wide Web is a blessing. Even if you’re house bound, there is a wide selection of organizations working to solve the puzzle of ME/CFS and to support patients and their caregivers.

Someone recently sent me a link to a petition hosted on Change.org which sends a message to the CDC to reevaluate their ME/CFS research and to step up their efforts. It is supported by many regional ME/CFS groups as well as individual researchers. Please check it out and sign it today. And send the link along to your other ME/CFS groups as well as friends and family. This is something we can all DO.

Will a petition change anything? There are no guarantees. But we’ve all witnessed what can happen when people combine their efforts for a cause. Do you know of other petitions or ME/CFS efforts that we can lend our support to? 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

2 Comments

Isolation – Who imposes it?

8/30/2011

0 Comments

For the last few days, we have been without power courtesy of Hurricane Irene. At first, we focused on the basics – light and food – thankfully it was August and not a cold January. Once we had adjusted to the necessary and realized that it would be many days before the power was restored, we started to piece together a bare bones existence. It was quickly clear to me that my lack of internet access had shut down most of my work. So I sought out public wifi places only to find them crowded with others in the same situation. The servers at my library were periodically paralyzed under the load.

The internet has become a world where many of us live a good part of each day. I was thinking back on when I was sick and feeling so isolated in my home at a time when the internet and its networks were in their infancy. For those who are sick now, the internet is a lifeline of information, organizations and people – there to support and assist on the long road back to health.

And yet, I talk to many patients who don’t participate in online opportunities to share ideas, strategies, etc. Yes, some of the websites are more focused on venting frustrations or well meaning empathy. And that can be just what a patient needs some days. But a steady stream of it is not helpful. So you visit a few times and then lose interest. And then you self impose isolation.

I’m hopeful that this website, now in its infancy, will be a place for active participation and the sharing of approaches to this cruel disease. A way to take positive advantage of the access you have to other patients, caregivers, providers and graduates of the disease. We all have wisdom – hard earned. What have you learned about dealing with ME/CFS? What can you share? 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

0 Comments

ME/CFS/SEID Isolation – Be Connected and Get Help

ME/CFS/SEID Support Network - You have to Reach Out

ME/CFS Support – Talk About What has Happened to You

ME/CFS Support Network - You have to Reach Out

ME/CFS Isolation – Be Connected and Get Help

ME/CFS Struggle – Many are on Similar Roads to Recovery

ME/CFS/Fibro Isolation - Stay Connected

ME/CFS Actions – Sign The Petition

Isolation – Who imposes it?

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