Category: Support

ME/CFS Support - Words of Appreciation

2/11/2020

It’s almost Valentine’s Day. One of those loosely historical, made up days to sell stuff. OK that was cynical. But we seem to have developed an entire year of these almost monthly events which push us to do or buy something. Or feel out of it if we don’t.

For me, today is an exception. When I was struggling with ME/CFS, I wasn’t very good at recognizing all the kind and thoughtful things people did for me - Family, friends and strangers too. Unfortunately, for a good part of my struggle, I was seeing everything through a veil of angst – anxiety about my situation tinged with hope for resolution. This sometimes kept me from seeing the people around me who cared and wanted to support me. I often forgot, caught up in my own wrestling match of emotions and physical malfunctions, that those around me were feeling some of the same helplessness – not sure of what to say, what to do or when to just be present for me.

For some reason, on the first Valentine’s Day after I was beginning to feel strong again, I felt the desire to express my ‘love’ and appreciation to those who were supporting me. It started a tradition that I still follow. Today has become a reminder day for me to stop for a moment and make sure that I let the people in my life know how much they mean to me and how much I appreciate them. Yes, that’s hokey. But I prefer it to cynicism.

Are you making time to let people know how much you appreciate them? 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

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ME/CFS Attitude – Find Thankfulness

11/26/2019

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When I sat down to blog about Thanksgiving, I looked at what I had written last year. I can’t do a better job of expressing how I feel about this holiday and struggling with ME/CFS at the same time. So here it is again:

Thanksgiving traditionally generates clichés about thankfulness. The mantra basically goes like this: Be thankful for what you DO have, not what is missing. Most of us would agree with this outlook. It is better to focus on the positive. But it isn’t easy to do especially when you’ve been struggling with ME/CFS for a year or for 20 years.

When I was sick, I would allow myself to indulge in some self pity around this time of year but I knew that was totally unproductive and a waste of what little energy I had. I would then get irritated with myself for my self-centered attitude and so just added more negativity to my load. But it can be unfair to expect a person who is struggling with a body that can’t handle normal activity to be upbeat, positive and ultimately thankful.

So as the rest of the world around me went about their daily routines, I would look at my life and try to find something to be thankful for. Mostly, I focused on the few people around me who understood what I was going through and supported me in large and small ways. I made a point to tell them how much I appreciated what they did.

And after I let go of the negativity toward myself, I realized that I needed to appreciate the work I did all year long. The work of getting well again. Sticking to the snails pace recovery, following the protocol when I didn’t want to and being present in my life in whatever way I could realistically handle.

Are you finding things to be thankful for? 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.

And for you and all of your loved ones,
I wish you a warm and Bountiful Thanksgiving,
Be Well Again,
Martha

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ME/CFS Holidays – The Gift of Helping

12/4/2018

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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 Support Network - You have to Reach Out

7/24/2018

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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.

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. 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 Attitude – What Others Say

4/17/2018

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When you’re struggling with ME/CFS, it can be a daily challenge to keep your own negative attitudes in check. It’s all too easy to fall into the trap of wasting precious energy grinding about the things you can’t do, the thoughts you can’t keep straight and the important people in your life for whom you can’t be present.

It becomes even more challenging when you have to deal with the negative attitudes and insensitive comments of others. One group says ‘you look OK to me’. Then there are the ‘doubters’ who look at you as if you’re either physically lazy or mentally weak. And then you face the curious crowd who seem interested in your illness only to the extent that they want to tell you about themselves or their sick friend. It’s hard to know what to say without being irritated (only to confirm their assessment of your mental weakness) or rude which can alienate people whom you otherwise value in your life.

Fortunately for most, there are a few steadfast supporters, family members or friends, who get it and want to support your path back to health in whatever way they can. And even these caring people can say the most insensitive things at times. When I heard these comments, I donned my writer’s thick skin which I acquired as the result of many tough critiques.

What do you say when people make insensitive comments? Do you react at all? 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/SEID Support – Talk About What has Happened to You

8/1/2017

2 Comments

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 Doctors - Guest Blog by Tim Boland

5/16/2017

2 Comments

As so often in your blogs, Martha, I see references to self-care, how discipline and staying with it consistently are of such vital importance.

I had a very distressing time at my doctors, and without going into details, it prompted me to Google something like 'what to do when your doctor does not listen'. I gained much insight by the experience of others, reading in one article that on average, if a patient speaks up he/she is interrupted by the doctor after only 17 seconds!

Mine is especially bad at listening, to the point where even the thought of going to see him is stressful, and as many of us know, more stress leads to tightening of our muscles, and that tightening increases our pain levels.

I share these links as they speak directly to what to do if you physician is not listening, if you do not feel respected, and some possibilities.

http://www.thewebelongproject.com/blog/advocating-for-yourself

http://www.webmd.com/a-to-z-guides/features/be-heard#1

Tim Boland

Thanks Tim! Unfortunately, it is a challenge to find a doctor who is knowledgeable about ME/CFS/SEID. Or even simply one who believes that we are physically ill and who works with us and listens to help us unravel our version of it. What have your experiences been? 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

2 Comments

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

4/25/2017

2 Comments

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 - Words of Appreciation

2/14/2017

2 Comments

It’s Valentine’s Day. One of those loosely historical, made up days to sell stuff. OK that was cynical. But we seem to have developed an entire year of these almost monthly events which push us to do or buy something. Or feel out of it if we don’t.

For me, today is an exception. When I was struggling with ME/CFS/SEID, I wasn’t very good at recognizing all the kind and thoughtful things people did for me - Family, friends and strangers too. Unfortunately, for a good part of my struggle, I was seeing everything through a veil of angst – anxiety about my situation tinged with hope for resolution. This sometimes kept me from seeing the people around me who cared and wanted to support me. I often forgot, caught up in my own wrestling match of emotions and physical malfunctions, that those around me were feeling some of the same helplessness – not sure of what to say, what to do or when to just be present for me.

For some reason, on the first Valentine’s Day after I was beginning to feel strong again, I felt the desire to express my ‘love’ and appreciation to those who were supporting me. It started a tradition that I still follow. Today has become a reminder day for me to stop for a moment and make sure that I let the people in my life know how much they mean to me and how much I appreciate them. Yes, that’s hokey. But I prefer it to cynicism.

Are you making time to let people know how much you appreciate them? 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

2 Comments

<<Previous

ME/CFS Support - Words of Appreciation

ME/CFS Attitude – Find Thankfulness

ME/CFS Holidays – The Gift of Helping

ME/CFS Support Network - You have to Reach Out

ME/CFS Attitude – What Others Say

ME/CFS Solitary Struggles – Asking For Help

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

ME/CFS/SEID Doctors - Guest Blog by Tim Boland

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

ME/CFS/SEID Support - Words of Appreciation

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