CFS Blog - ...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it

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

4/27/2021

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. One friend 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 or others about ME/CFS, share it. Ask others to read it. There are many online 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

ME/CFS Choices - The Holiday Bustle

12/8/2020

We are all struggling with the pandemic caused by Covid-19. For many, the virus has touched them directly, either through illness of loved ones, even death, or being at daily risk in an essential job. For many, the economic hardships are threatening the survival of their families. For many, the separation from loved ones is causing emotional and mental health problems, especially for our isolated elderly. We are all trying to make sense of the conditions of the pandemic which have become the new normal.

And now, we are in the midst of the holidays which are usually a blur of activities in addition to the normal work and family commitments. But this year, we are being asked to forgo much of it. To stay in our limited circles in order to stop the spread of the virus. To ease up the burden on our hospitals, to even save lives.

For those of us who have spent many holiday seasons struggling with ME/CFS, this request isn’t as hard to accept. We get the pace that necessitates staying home. We understand the sadness of isolation. We have lived with forgoing much of the holidays.

This year, everyone is in a similar place for a completely different reason. And although Zoom is getting old, it is a way to connect that we didn’t have in the past.

How are you planning to spend the holidays? What are you paring back? What will you happily forego from the holiday hustle and bustle list? 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

ME/CFS Familiar Territory – Stay-At-Home

4/21/2020

In the struggle to deal with ME/CFS, we often feel as if the whole world is moving along and we’re forced to cut back and rest. We feel constricted in our energy to function and participate in life. Meanwhile, everyone else can go and do without a thought about their health.

Covid-19 has changed all of that. Everyone else is now thinking about their health. Worldwide. And those of us who are blessed to have safe homes and enough food, are quarantining and are restricted in our movements outside of our homes.

Over the years that we’ve spent sick with ME/CFS, we’ve struggled to explain to others what we’re going through in terms of isolation. The separation from others, the long periods of time by ourselves, the depression that creeps in. The endless “I’m sorry I can’t be with you todays”. The feeling that we’ll be stuck like this for months and possibly years. And the helplessness that goes with it.

I don’t think that anyone reading this blog is happy to have company in this isolation due to the pandemic. But I don’t think that we’ll need to explain this part of our struggle with ME/CFS anymore.

To all of you, please, stay safe. Stay home. And don’t hesitate to call on friends and neighbors to bring you what you need. ME/CFS is an under lying condition that further compromises our risk of contracting the virus. Please COMMENT 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

ME/CFS Isolation – Be Connected and Get Help

10/8/2019

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 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

ME/CFS Attitudes – Rainy Days Made Me Happy

4/16/2019

It’s a cold rainy day in New England after several warm spring days. For the middle of April one might expect something different. But I’ve lived here my whole life and one can always count on the weather to change moment to moment. So today, as I settled in for a less active indoor day, I started thinking about my struggle with ME/CFS and those rainy days. One might think that like some people, rainy days would have seemed dreary and sad back then. But the opposite was true. Rainy days made me very happy.

Why? When I was struggling with ME/CFS, sunny warm days made me miserable. I wanted so much to be out and going about my life. And lovely days were a tough reminder that I was too ill to participate in my own life – in anyone’s life. Those days seemed twice as long as normal. They dragged and dragged and dragged on some more. Those days were depressing.

I must admit, somewhat ashamed, that cold rainy days made me feel like other people might have their days limited as mine were. Not with the physical symptoms of ME/CFS but the limitations on mobility. The restriction of activity and possibly some of the isolation. I felt like other people were stuck in it with me. A sort of warped sense of misery loves company. And this made me happy. OK, not one of my best moments.

As I began to understand that I needed to get off the ME/CFS roller coaster and focus on a real recovery plan, this weather influenced attitude began to change. My daily approach to healing became a matter of choice as I was no longer a victim of ME/CFS but rather someone who was on an intentional recovery path. Nowadays when I’m trapped indoors on cold rainy days, I like to make the best of it and imagine I have lots of company. And a nap is nice too. How do you relate to cold rainy days? 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

ME/CFS Mask – Reveal Yourself

3/12/2019

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. 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. And Guest Blogs are most welcome!

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

Be Well Again,
Martha

ME/CFS Invisibility – You Are Not Crazy

3/20/2018

I was standing at a deli counter waiting to order and there were no numbers to take. So I tried to politely keep track of whose turn it was to be served. Predictably, a few of the people just didn’t want to see me. And of course, it reminded me of how invisible I was when I was struggling with ME/CFS.

Most of us have suffered not only with the frustration and illness of ME/CFS but with the non recognition of this disease by the medical community and the people around us. According to them, we don't look that sick and we don't test sick so we aren't physically sick... And when we’re treated that way, we tend to withdraw. Combine that with the physical and mental disability of ME/CFS and it’s a combination that leaves us isolated and ultimately invisible.

And in that isolation, we begin to question our own mental capacity. Do not listen to those negative, degrading messages! You are not alone in this and you are not crazy! Many people are in this ME/CFS boat struggling to be seen and to be well again.

For me, I was able to find a few people who would listen and help. It made me feel visible again. How do you deal with the invisibility of ME/CFS? 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

ME/CFS Solitary Struggles – Asking For Help

2/13/2018

Recently I was trying to juggle several things that really required two pairs of hands. Of course I wrestled with it for a while before I admitted that I needed help. And it reminded me of all the time I spent struggling with ME/CFS in solitude. Some of it was pride – the type A ‘I can do it all’ scenario. Some of it was reluctance – not knowing if I would get a supportive response. And some of it was not wanting to share all the painful, frustrating details of ME/CFS. We tend to be private people and revealing ourselves can make us feel vulnerable and exposed.

For me, I finally had to admit that I needed help as I struggled with ME/CFS. And that required not only a willing and compassionate helper, but it also required that I get off my ‘I can do it’ pedestal and be willing to reveal a Martha who was not in control and on top of things. I needed to be ready to show weakness and not be ashamed or feel belittled. It’s a huge step for some of us.

But I couldn’t avoid the reality that I needed help. So I had to accept the need to reveal myself – and all my blemishes – and get up my courage to ask for help. It resulted in some half hearted maybes which never materialized, several uncomfortable nos, and blessedly a few compassionate yeses. And that was all I needed.

Do you have trouble asking for help? How do you set aside your pride and privacy in order to get help? 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

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

8/1/2017

I often hear from people struggling with ME/CFS/SEID who feel alone and isolated. Their efforts to stay connected are stifled by their limited energy and their inability to explain ME/CFS/SEID. We’ve all been there. And for many of us, despite the fact that we deal with ME/CFS/SEID 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/SEID 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/SEID 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/SEID. 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

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