Sunday, May 31, 2015

ME/CFS Mother's Day - Mothers with ME/CFS should pride themselves of being some of the best mothers in the world

Happy Mother's Day!
Today, when it is Mother's Day, You who are mothers with ME/CFS should rejoice, celebrate and give yourselves a big pat on the back - because you are among the best mothers in the world.
You really are!

When you have ME/CFS and the limited amount of energy that comes with it, you know how to value the time you spend with your kids.

As mothers with ME/CFS you are some of the most present, mindful and tentative parents there are, because you know how to make every minute count and you cannot afford to waste a single one.
And believe me, your kids can feel that presence and commitment.

When I asked my eldest son what he thought was a good thing about me having ME/CFS, that perhaps other kids didn't have, he responded: "You are almost always at home" (note: full time stay-at-home mothers are quite a rare thing where we live these days).

You may not be able to play soccer or go bike riding with your kids, but if you are moderately to severely impacted by ME/CFS chances are that you are around a lot more than many other parents. Don't underestimated the positive impact you have on your kids just by the simple fact that you spend a lot of time at home, even if it is mostly spent on the coach or resting in a quiet room.

And just listen to this:

"Happy Mother's Day Mom'.
You are the world's kindest mom'.
You are the world's most understanding mom'.
You are the world's best mom'.
You are the world's most fantastic mom'."

(From 11 year old Elliot to his mother, who has ME/CFS, on Mother's Day)

So there you have it - You mothers who have ME/CFS are great! Acknowledge it, celebrate it - Have a great Mother's Day!

Helena Westin
Author of Managing & Enjoying Christmas - Tools and Ideas for enjoying Christmas when you have ME/CFS (1st book in the series "Empowered Living with me/cfs")
Love and support,

Friday, May 22, 2015

ME/CFS Parenting Challenges - Easing the way through crashes following parenting challenges when having ME/CFS

Life can be challenging. Life as a parent especially so - joyfull, inspirering, educational, fabulous, but also at times challenging. Throw having ME/CFS into the mix and "challenging" takes on a new meaning. But challenges can be met, they can be worked through and you can emerge on the other side.

Some moments in life as a parent are more challenging than others. And it is at those moments you may feel like throwing all those cheerful, encouraging sayings right out the window. Things like "choosing to see the cup as half full rather than half empty", "there is a positive side to every negative side", "ying follows yang", "after rain comes sunshine"... etc.
But the thing is that many of those sayings are things that most of us hold, or at least would like to hold, as "thruths". It's just that in those really challenging moments they get to temporarily be buried under feelings of hurt, pain, frustration and the like.
And that is o.k. It's natural. We are after all human beings. It's allowed not to feel on top all of the time.

When you have ME/CFS your life is a balancing act between activity and rest, both physically and mentally. As a parent you unavoidably face moments you have no possibility of predicting, scheduling or planning for in advance - moments that tip the scales hard and forcefully distrupts that very important balance.
One of the results of course for you with ME/CFS is sometimes a crash of some magnitude, with exacerbation of your symptoms and all the frustration, aches and pains that may follow with that.
At such instances I encoruage you to
1) Take a deep breath
2) Ask yourself: What takes priority - Being a parent or being a person with ME/CFS?
For most parents the answer is a given.
That answer wont take away the aches, pains and other exacerbated symptoms, but reminding yourself of it just might ease a bit of the frustration and make the challenge of working through the crash a little easier to face.
That answer just might help remind you about all the "silver linings" of being a parent.

Let me illustrate with the following excerpt from my personal journal:

"These are the moments that are the hardest. Totally drained of energy, having reached deep down to some well hidden crisis reserve of energy, to ride out a storm with my child. Parenthood, there just isn't any opting out of that. My child was struggling, was holding on hard to taking the easy way out and it was up to me to be the parent, the mother - to be the strong one, the calm one, the insistent one, the loving one, the tough one. It would have been so much easier to just let him have his way, to just let him take the easy way. But it would only have been easy for now. What about next time? And what would it have taught my child?
So now I'm here at one of those really hard moments. My body aches all over, I cannot stand or walk without support, I feel mentally detached from the rest of the world, like I could fall asleep exhausted sitting straight up, hardly aware of the sounds and people around me. I cannot lift my arms. I doubt I could form a coherent sentence if I tried to speak. I'm shaking, I'm aching, I'm dazed, I feel misplaced. In short - I'm suffering, more than usual.
It's not the first time, and it wont be the last time. Because I am a parent, a mother - and that will always come first, before being a person with ME/CFS.
I can take it. I will take it.
And eventually I will stabilize again. Zoom back into the world around me, back to my children and spouse, back to the trials and joys of parenthood, back to one of the greatest reasons I have for getting up in the morning and doing everything I can to live an empowered joyful life even when having ME/CFS - back to motherhood.

I can take it. I will take it...."

Love and support,
Helena Westin
Author of Managing & Enjoying Christmas - Tools and Ideas for enjoying Christmas when you have ME/CFS (1st book in the series "Empowered Living with me/cfs")

Friday, December 12, 2014

ME/CFS memory tools - 3 tools to aid you with me/cfs memory challenges

Do you experience brain fog and other memory challenges?
In this post I will suggest 3 tools to help you manage those challenges.

If you have ME/CFS I am sure you are familiar with what is often referred to as "brain fog". In additon many with ME/CFS experience various additional memory challenges.
It can be things like not remembering what you had for lunch or if you had it at all today, what that one thing on your To Do-list you promised yourself to get done was. It can also be not being able to recall what was said during a conversation you had with someone or not being able to remember what brilliant idea you had a few minutes ago, or that you have already asked the kids to pick up their toys as soon as they are ready with homework.

Most likely you have already adopted some traditional ways of reminding yourself of things you need to remember, like like post-it notes, To Do lists, calenders and the like. And perhaps you have also come up with som new coping strategies of your own (I'd love to hear about them by the way - feel free to send me a note or leave tips as a comment to this article or on our Facebook page).
Here I'd like to introduce you to, or perhaps remind you of is more appropriate, a tool that works great together with the traditional ones - and that is voice recording devices.

You can use them to record just about anything - Your grocery shopping list, gift ideas, conversations, lectures, your kid's new song, messages (or why not whole "letters"), poems, profound reflections, your kid's lap times at the latest junior championship, memorable or smart things you heard someone say or that you read on a billboard... The possibilities are endless.
And today, with modern technical innovation, you have several choices as what kind of voice recording device would work best for you.

3 Kinds of Voice Recording Devices to Help You with ME/CFS brain fog and memory challenges

  1. First there are of course the traditional voice recording devices, or dictaphones.
    They are often used for recordning things that are later to be transcribed or presented in other formats, bu they can be used for so much more. As they are usually digital nowadays they have multiple search options, making it easy to find a recording you made at a certain time or date for instance.
    As with most digital recording devices you can often easily transfer recordings to your computer.
  2. Secondly there are a number of voice recording applications for your smartphone.
    Just browse the appstore for your device and see.
    This has the upside of being very accessable and not requireing you to carry an additional device with you, just your mobile phone (wish I'm guessing is constantly with you anyway).
    I personally have an icon to a voice recording app on the main screen of my smartphone at all times and use it frequently.
  3. Thirdly, and this is my favourit, the innovative use of modern technology in the form of the Livescribe Smartpens.
    These little gems takes voice recording a big step further by incorporating it with text or drawings. Instead of making longer notes you just make a short bullet point (can be as short as a singel word or just a dot if you like) on  Livescribe dot paper and simultaniously voice record what it is you want to take note of. Now, anytime you want you can just tap with the smartpen at the beginning of your written note and it will play back what you voice recorded at the time of making that note..
    You can also prepare in advance. For example, I have used a smartpen at my doctor's appointment. I write down what a want to talk to my doctor about as bullet points, i.e. medications, sleep, symptoms. Then, once at the appointments I activate sound recording by tapping with the smartpen at a certain bullet point as we start to talk about it and then again at the next bullet point as we start to talk about that. Now I can, litteraly with the touch of the smartpen, go back and have it play back for me exactly what was said regarding a specific point.

    Using recording devices, instead of writing with pen and paper, has the added bonus of being easy to do even when you are in great pain and perhaps also have significant stiffness of your hands.

    Try it out for yourself and see if it can be of help to you.

Love and support,

Helena Westin
Author of Managing & Enjoying Christmas - Tools and Ideas for enjoying Christmas when you have ME/CFS (1st book in the series "Empowered Living with me/cfs")

Thursday, December 11, 2014

ME/CFS Managing Christmas - A book with Tools and Ideas for Enjoying Christmas when you have ME/CFS

 Are you truly looking forward to the Christmas holidays or are you, like so many with ME/CFS, somewhat apprehensive, unsure of how you are going to cope with it all or even if you will be able to participate?
With the Kindle ebook Managing & Enjoying Christmas - Tools and Ideas for Enjoying Christmas when you have ME/CFS, I want to empower you to feel that you really can look forward to Christmas and feel confident that you will be able to enjoy the holiday traditions.

Christmas is a truly special time of year and you deserve to join in and experience it's magic. So I decided to do what I can to help you find ways of making the Christmas holidays a joyful time, even if you do have ME/CFS and all the symtoms, sensitivites and energy limitations that come with the illness.

I've put it together for you in what is intended to be the 1st in a series of ebooks on Empowered Living with ME/CFS.
So today I am "kicking off" what I am sure will be several blog posts on the subject of Christmas and ME/CFS with an excerpt from one of the chapters in the book Managing & Enjoying Christmas - Tools and Ideas for Enjoying Christmas when you have ME/CFS now available at Amazon worldwide.

"... If the smell of pine is a definite must for you around Christmas, I'm guessing going out choosing the perfect Christmas tree is quite a big deal too.

This might however be something you don't have enough energy for right now, or perhaps it simply involves spending time among more people, sounds and lights (not to many of us can walk into winter quiet woods and chop down our own tree nowadays) than you can handle for the time being.
Should this be the case I suggest you make use of modern technology the way we talk about in the chapter on "Christmas Shopping". Let your family members or friends go off without you but make sure they bring a smartphone. That way they can video call you and let you join in from home. Alternatively they can send you pictures of trees to consider allowing you to weigh in on the decision..."
(from the chapter The Christmas Tree in
Managing & Enjoying Christmas - Tools and Ideas for Enjoying Christmas when you have ME/CFS)

Love and support,

Helena Westin
Author of Managing & Enjoying Christmas - Tools and Ideas for enjoying Christmas when you have ME/CFS (1st book in the series "Empowered Living with me/cfs")

p.s. You can now sign up for my email list to keep up to date with new blog posts, book releases and other resources on the subject of Empowered living with ME/CFS. There is a sign up form on the Facebook page and the Blog.

Thursday, December 4, 2014

Welcome to Empowered Living with me/cfs

Ever since I got the diagnosis of ME/CFS and started reading up on it I've realized that I am actually privileged.

I'm privileged to have had a family doctor who was open to the diagnosis and honest enough to admit to not knowing much about it, as well as make a true effort to find a specialist clinic to refer me to.

I'm privileged to have a supportive family around me, to assist me, to keep me company, to remind me of all the joys in life, to inspire me to face the challenges ME/CFS gives me and find ways over, under, around and through them.

I'm privileged to be well trained in searching for information and applying theoretical knowledge in actionable forms adjusted to my own circumstances.

(I know, there is a lot of "I" here. Bare with me, I'm just trying to make a point and will get to what all of my "I's" mean for "You")

I'm privileged to be a professional coach and thereby trained to find or create aids and tools to ease my everyday life, as well as view life from different perspectives.

I'm privileged to have met understanding case officers who have taken the time to understand the implications of ME/CFS to my every day life as well as my ability to work.

I'm privileged to have been part of a research project that allowed for me to undergo tests that clearly demonstrated the physiological impairments brougth on by ME/CFS, both cognitively and in the performance of common every day tasks (i.e. showing both myself and others that I'm not just "imagining things").

I'm privileged to have been shown methods to be able to exercise.

I'm privileged to have met others with the same diagnosis who can relate to the challenges ME/CFS faces me with.

Hell, I'm even privileged to have gotten properly diagnosed with ME/CFS at all!

But should any of the above really be a privilege?
Shouldn't it all be the right for every single one of the estimated more than one million americans, the estimated quarter of a million in the UK as well as all other people with ME/CFS ?

In addition to the above I am extremely privileged to have a husband who is both supportive and understanding, as well as helps me stay within the boundaries ME/CFS sets for me. I'm also privileged to have two wonderful children who put a smile on my face every day.

So now, finally (hey, better late than never), I'm going to do my best to share with all of you what my privileged circumstances has enabled me to learn and use - things that make me feel I can live an empowered life even though I have ME/CFS (which means so can you).
To start with, that means a Facebookpage:
and this blog: .
Coming up is a book series on "Empowered Living with me/cfs".
But, as all of you familiar with me/cfs know, how often and when will depend on available energy level and health status in general ;-)

Love and support,

Helena Westin
Author of the upcoming book series "Empowered Living with me/cfs"


Wednesday, December 3, 2014

ME/CFS Empowering Tool – Tip About A Simple Tool Empowering You with ME/CFS to Dare To Walk Further

If you have me/cfs chances are that, at one time or another, you have found yourself out and about when your body suddenly “shut down”, leaving you stranded and unable to take a single step further?
That is why a walking cane can be an empowering tool that can actually feel like a life saver next time you leave your house.

Regardless of having me/cfs, it is of great health benefit for most of us to get out of the house now and then. Some of you might also, like me, sometimes have to attend to practical matters like picking up the kids from school, go grocery shopping or simply get yourself to a doctor’s appointment.
The fear of finding yourself away from home when your body suddenly feels like a totally drained out battery (not to mention the hours, or even days, you know you will need to recover afterwards) can be a very real and significant challenge for a person with me/cfs. And it is no wonder that many of us hesitate to take more than a few steps away from our front door.
The rather simple tool of a walking cane can actually allow you to dare to walk a little bit further.

Believe it or not, but something as simple as using a walking cane can actually benefit you in several ways if you have me/cfs.

 1. When walking with a cane you automatically slow down your walking pace, and so you use up less energy and prevent your heart rate from increasing too much (which in turn prevents you from experiencing those severe post exertion malaise crashes).

 2. The walking cane gives added support to lean on. This can be extremely useful either when going uphill or up the stairs, again allowing you to use up less energy and preventing your heart rate from increasing too much, or at those times when you appear to have run out of energy and somehow need to get yourself to a spot where you can rest, get back to your car or back to and in your front door.

 3. Must obviously a walking cane can help you adjust the weight of your body from one side to another which in turn can help when your me/cfs brings about aches and pains that otherwise would make it difficult for you to move about.

 4. Perhaps less obvious is that a walking cane also helps make the invisible illness of me/cfs visible, i.e. walking with a cane shows the people around you that you have some impairment and often grants you more consideration (people opening doors for you, offering you a seat in the waiting room etc.).

For me personally using a walking cane has proven invaluable. I am usually no longer limited to going outside only before noon and I can handle stair cases also on my bad days. And knowing that I have my cane to lean on if my energy runs low gives me confidence to dare walking further than I otherwise would.
I encourage you to try it out and see what using a walking cane can do for you in terms of easing some of the limitations you might experience if you have me/cfs.

 As always, I have the greatest respect for the fact that me/cfs can vary greatly from person to person,from day to day, in both severity as well as symptoms and sensitivities. Whether this tool is suitable and of benefit to you personally is for you to decide and try out for yourself (and where appropriate after consulting your doctor).

Helena Westin
Author of the upcoming book series "Empowered Living with me/cfs"