Have You Been Cruel to An Ill Person?

Most people would immediately answer “Never!” when asked if they have been cruel to an ill person, but the truth is that we have probably all done so at one time or another and we didn't even know it.  I've been ill for almost twelve years and it was only when I ended up on the receiving end, did I even stop to think about all the times I may have said and done something inadvertently cruel to other ill people.

Most chronic illnesses are invisible.  If you look at my pic, or even look at me, you can't tell that I am ill.  This is not just true for ME sufferers as the same goes for people with Alzheimer's, Cancer, Fibromyalgia, Lupus and dozens upon dozens of other illnesses.  This may seem like a good thing, but it actually makes life harder for people with an invisible illness or disability because they not only have to deal with the symptoms of their illness but with the way people treat them. 

My Handsfree Samsung Tablet Lifesaver

Recently my partner got a Samsung Galaxy Note 10.1 and while I was interested in his new toy, I didn't actually think I would personally get any use out of it.  How wrong I was!  For starters it is easier and lighter to use when I am lying down, as I found out while I was horizontal with my latest ear infection.  But now he has bought an even better treat that has made things even better for me!

What he bought is this flexible arm thing which clips onto the back of the bed (the picture below actually doesn't do it much justice) What you can do is clip this onto the back of the bed (or a bed side table) and bend the arm so the tablet hangs above your head.  This means that my arms and hands do not ache after a little while, as I no longer need to use them.  I can watch videos online and I even played a game like this.  Also, because the arm is flexible, I can move to a comfortable position and adjust the position of the tablet to match.

The clamp that attaches to the back of the bed is adjustable and extends up to 5cms, and the part that attaches to the tablet is also adjustable and I even used it with the Samsung Galaxy Note in it's tablet case.

I wouldn't recommend this if you intend to actually be tapping away at your tablet for an extended time, because your tablet will bob about due to the flexible arm it is attached to.  Also, once it is attached to your bed, I would suggest that you leave it attached there, rather than repeated removing and reattaching.  But if you're anything like me, this shouldn't be a problem. 

This is one of those things that is just so simple and inexpensive but makes a world of difference to an ME sufferer like me.

When You Have A Chronic Illness Do You Ignore a New Symptom or Consult Your Doctor?

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When you have a chronic illness one of the major decisions you have to make is whether you ignore a new symptom or consult your doctor.  This may not sound so huge, but actually it is.  It is physically and psychologically exhausting to always be aware of every ache and pain in ones body.  Yes, we're ill, but we have to also try to live as normal and full lives as possible and that is not going to be possible if we're always looking at the physical state of our bodies.

The Importance of Routine

It's very early on a Sunday morning and I lie in bed tapping out this post on my BB, thinking about wasted time and hoping I don't wake Daniele who is still asleep. I spend all week looking forward to the weekend when I get to spend quality time with him. We used to go out exploring but recently because of my health we can sometimes manage a short walk but not much more. Daniele suggested a short walk up to Knightsbridge yesterday as he needed to get some coffee pods for his Nespresso machine but I was not up to it. In fact I spent the whole day in bed, sleeping on and off. Saturday's are so precious that I can't help feeling the crushing disappointment of having wasted a whole one.

Refuse To Be Ill?

Today I'm so ill and beyond exhausted - I don't just need someone to make me something to eat, but they also need to chew and swallow it for me too.  I posted something similar to that as my status message on Facebook (first mistake, I know) and my friend who will be visiting London next week responded with "Try to shape up for next Wednesday sweetie!!"  I know he means well and I get the sentiment, but it's just too much today and this comment and his subsequent comments have really upset me.

There's a quote by Edward G. Bulwer-Lytton:

ME/CFS and Deeper Shades of Birthday Blues

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For as long as I can remember I've never really cared for my birthday, and that sentiment has only become worse since I became ill.  That dreaded annual event rolled around again two days ago and I felt so down for weeks prior to it.  I’m 37 years old and I’m ill again and I just felt so tired, old and useless.  I rarely feel that way, but something about my birthday brings out the most dispirited side of me.

I was 25 when ME/CFS hit; I had love, laughter, friendship, a career in a brilliant company and plans, lots and lots of plans.  All of that went away for 10 years, so I was in my mid-thirties by the time I next resurfaced.  I managed to catch up a little but then I drowned again and now it seems the closer I get to 40, the more I feel the loss of that time.

A Positive ME/CFS Sufferer or a Negative One

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I’ve been asking myself a lot recently if I’m a positive ME/CFS sufferer or a negative one.  What do I mean by this?  The whole purpose of writing this blog and my other articles is that I’ve wanted to be able to provide a relatable account for other sufferers.  When I first became ill, talking to and reading about other sufferers is what helped me the most.  I’ve always felt it was my duty to put my story out there.  Before I come across as too much of a martyr, it has also helped me immensely to write about my experiences.  Actually, at first it was really painful to write about ME/CFS, but now it is easier and helps, especially when things aren’t so good.  Recently they haven’t been so good and that is what brings me back to wondering if I’m a positive ME/CFS sufferer or negative one.

Christmas Alone

This is my very first Christmas alone.  The common idea of Christmas is one of families getting together, of spending time with loved ones, not of being alone.  But for whatever reason, there are plenty of people that spend Christmas alone.  I actually chose not to attend the family gathering this year, and at the time that I made that decision, I was really happy about it.  I believe my exact words were "After 36yrs, I deserve a Christmas off".

However, as I sit here late on Christmas Eve writing this, I do miss the fact that I won't have my family around me this Christmas.  They're crazy and the ensuing family dramas are way too much for my fragile health this year; I know all that, but it doesn't change the longing for Christmas.

A New Lesson in Loneliness For a ME/CFS Sufferer

My partner, Daniele, flew back to Italy yesterday to spend Christmas with his parents as he usually does, but for some reason this year it has left me feeling extremely lonely.  I love him and miss him as always, but this Christmas it is so much more than that.  My health has not been the best this year, with many relapses hampering my efforts to get my energy levels up and to keep my symptoms at bay, and more than just missing my boyfriend, I'm sure it is the isolation of ME/CFS that is causing me to feel so down.

I initially became ill in 2001, and by 2003 I was so ill I had to leave work.  For the next 7yrs I was mostly housebound and even bedbound at times.  But after working on getting a set routine, balancing effort with rest, finding some meds that helped with symptoms and a diet that also helped, I started to get better.  I met my lovely Italian, moved in with him, got a job, but over did it and relapsed in a bad way.  

ME/CFS Book Review: 'Love and Best Witches' By Maria Mann

If you or someone you know, suffer from ME, another chronic illness or even just love a fantastical and funny yarn, than this book is for you. I finished this book yesterday and still feel warm and happy after taking a magical journey with 9yr old Louise and her Auntie Nettie who is teaching her niece all about being a witch in her unique, magically funny way, despite suffering from M.E.

I am a huge fan of Maria Mann's first book 'Verity Red's Diary: A Story of Surviving M.E.', so I was thrilled when I found out she had published another book. The author is a fellow sufferer of ME, and what I love about her stories is that even though the illness peer's out at you, it is the humour and magic of her writing that strikes you the most. This is a great gift for those who suffer from the illness, but also a fabulous treat for any reader.

Why Am I Writing About ME/CFS?

“A man's illness is his private territory and, no matter how much he loves you and how close you are, you stay an outsider. You are healthy.”

Lauren Bacall

When ME/CFS bulldozed its way into my life over a decade ago, I was totally unprepared for the changes it forced on all areas of my life.  There were times when I coped better than at other times, but whether I was feeling Denial or Anger, whether I was Bargaining or Depressed and even when I finally Accepted, I always had the constant desire to speak to someone who understood (even when I couldn’t actually speak!).