Category: Connect

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

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ME/CFS Solitary Struggles – Asking For Help

2/13/2018

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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

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ME/CFS Holidays – The Gift of Helping

12/5/2017

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Someone asked me what I’d like for the Holidays and honestly I couldn’t think of a thing I needed or wanted. Maybe a technology upgrade but not the typical holiday gift items that one would search for while wandering the mall among the frenzied herds. When I was struggling with ME/CFS, and someone asked what I wanted for the holidays, all I could think of was my health. And of course they couldn’t give me that.

At the time, I don’t remember having the clear thought process to be able to articulate the kinds of ‘gifts’ that would have been truly helpful in supporting my recovery. With hindsight, now I can think of many that would have been much appreciated. In my younger days when I was short on cash, one of my favorite ‘go to’ gifts was the personal gift certificate. I would think of something I could do for the recipient and create a certificate that could be presented to me when the service was needed.

Imagine all the helpful things that people could do for you as you struggle with ME/CFS. Driving to appointment, cooking a meal, mowing, shoveling and walking the dog come to mind. What would you value in a personal gift certificate? What do you wish was in your helping gift? Tell us and then tell those who want to 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

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

8/1/2017

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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

2 Comments

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

4/25/2017

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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 Perception – The Crazy Stigma

3/7/2017

4 Comments

Over the weekend I was talking with someone about how people change when they go through personal struggles that challenge them to their core. By comparison, other difficulties in everyday life are less stressful and seem easier to handle. And of course I began to think about my ME/CFS/SEID days and how much I have changed – maybe even gained – in my more robust ability to weather the tribulations of a healthy life.

This person didn’t know me when I was sick and I was about to mention my ME/CFS/SEID struggle but I hesitated. The stigma of ‘mental weakness’ or crazy has always been attached to ME/CFS/SEID. Whenever I had told someone that I was once sick with ME/CFS/SEID, I would see that association flash across a persons face. Suddenly, even though they had only seen me healthy, I was dropped down a few notches in their estimation. I became less then whole. Damaged with the potential to be weak or needy. Maybe even a burden. So I hesitated.

Then I thickened my skin and plunged forward, knowing that the more we talk about ME/CFS/SEID, and the more we engage with the main stream, the better the odds of getting to the answers for this cruel disease. And as I voiced that I had once been bedridden with ME/CFS/SEID, the response was OK. Better than I expected but it was still tinged with a bit of stigma. And it renewed my determination to be part of the conversation because so many of those who are struggling with ME/CFS/SEID frequently disappear from view.

Are you getting the crazy stigma when you talk about ME/CFS/SEID? How are you dealing with it? 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

4 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

SEID/CFS Mask – Reveal Yourself

1/19/2016

2 Comments

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 SEID/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 SEID/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

2 Comments

SEID/CFS Loneliness – Don’t Get Left Out

7/7/2015

5 Comments

I recently missed out on a family gathering due to miscommunication and was feeling left out. It brought back some of the loneliness I used to feel due to isolation and incapacity when I was struggling with SEID/CFS. My energy levels then were severely limited and I had to be so careful about what I could handle without a setback. In the beginning, it really ate at me. It only served to put an exclamation point on all that I had to give up due to SEID/CFS.

I allowed it to bother me for an unhealthy period of time. And loneliness can beget more loneliness and feeling sorry for yourself. It can turn into a dark hole. Admittedly, I did some time there. It did not serve me well.

Eventually I realized that I had not been communicating clearly about how much I wanted to participate and how much I could handle. I was making a lot of assumptions about what others meant when they said something and about what they were thinking. A critical mistake that healthy people make every day. So I started to let my family and friends know that I missed spending time with them. And when there was a gathering I was careful to communicate how or if I could participate. Escorted cameo appearances started to become the norm. Sometimes I would save up my energy for a few days just to be there. The smiles, hugs and well wishes were uplifting and a balm to my isolation.

So if you’re feeling left out, up your communication game. How are you managing your ability to visit with family and friends? 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

5 Comments

ME/CFS Mask – Reveal Yourself

1/13/2015

9 Comments

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

<<Previous

ME/CFS Invisibility – You Are Not Crazy

ME/CFS Solitary Struggles – Asking For Help

ME/CFS Holidays – The Gift of Helping

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

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

ME/CFS/SEID Perception – The Crazy Stigma

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

SEID/CFS Mask – Reveal Yourself

SEID/CFS Loneliness – Don’t Get Left Out

ME/CFS Mask – Reveal Yourself

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