Ill But Still Trying for ME Awareness

It has been over a month since I last posted here and that's because I have been very ill but I've still been trying to write, especially as May was ME Awareness month.  I wrote a number of posts on Bubblews about ME and living with this illness, and you can find a list of these below.  I'd be lying if I said it has been easy; my worsening symptoms have not helped with my mood, but we can but try.  

I think the most important article I wrote was the one about Karina Hansen and I would urge you to read her story and to sign at least one of the online petitions.  You could help to save her life.

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.

Make Money with Bubblews for Doing No More Than You Would on Facebook or a Blog

EDITED 31 August 2013: Please note I have written an update to my experience with Bubblews.  Please read: The Bubblews Warning Label: Problems With Payments

I want to share here a way that I have been making extra money and that I think any ill person who is able to use their computer can also do.  I haven't been posting as frequently recently as health has been on a bit of a downer and I've also been posting (or bubbling as they call it) more often on Bubblews.  I've been writing online for a few years now and my main writing has been on Squidoo and I've made some money, but it has been tough going, especially as they made a lot of changes recently.  I was not directly affected by those changes but it made me realise that if you're going to write online, you can't put all your eggs in one basket, so to speak.

Someone recommended Bubblews and said they were making more money writing there than on any other website.  So I decided to check it out.  I was extremely sceptical about the site at first because it honestly sounds too good to be true.  Also I read some articles about how they have not received payment for their posts.

Here are the rules and Bubblews says that they have the right to remove (and not pay out) any account that partakes in the conduct listed below:

An Ill Person's Reality is Seen as Negativity by the Positivity Police

After almost twelve years of ME/CFS I thought I could handle anything.  I know my body better, I know the illness better and I am able to do so much more by managing my symptoms.  I can even advise others on what I know and where I was once unable to share my experiences, I find it easier to do so these days.  This blog was the first step and now I have even started to write about my experiences with ME on Bubblews [EDIT: 30th April 2014 I no longer write for Bubblews so all posts have no been moved to this blog].  I started off with an introductory piece on the illness called 'Myalgic Encephalomyelitis' which was a first for me as I had never actually tried to explain it in writing before.  I followed that with a post about my ME story called Life as an ME Sufferer but I think my drive kind of fizzled out at the end there and I was forced to make a half-baked attempt at being positive.

But yesterday I wrote Have You Been Cruel to an Ill Person? which was my most difficult post so far.  I wrote about the cruelty we face as people who suffer from an invisible illness.  I know it is important for us to write about the ugly reality of illness, but it is not easy.  I would love to only write about all the wonderful things in my life, and don't get me wrong, there are plenty of parts of my life that I am so grateful for.  I write about them too, from the horror movies that I like to watch, to local places and attractions that I love to visit when I am able to get out.  But the truth is that people who suffer from invisible illnesses, who are afflicted with these awful chronic illnesses are so misunderstood and I can't help but feel that the more we get our stories out there, the more we can lift the veil and show our side of things.

Life As An ME Sufferer

Yesterday* I wrote about an illness called Myalgic Encephalomyelitis (ME) which is an organic neurological illness. The reason I know so much about ME and try to raise awareness of it is because I have been a sufferer since 2001.

Imagine waking up one day, excited and happy; you're going away for the August bank holiday weekend with friends. You sit down to a meal one evening, and over a glass of wine, have a lovely chat with friends. That, right there, is the last time you will ever feel healthy again. Can you imagine that? 

Football Match and a BPD Emotional Drive-By: Just Another Week For This ME Sufferer

I've had a zombified, slow-mo week but I didn't really mind as it was payment for a great day out with my partner.  On Bank Holiday Monday my partner and I went to see Chelsea v Manchester United.  He had managed to get the tickets from some guy at work that was unable to make it and the stadium is close to where we live.  My partner is Italian, so he does not support either team (he’s an Inter Milan fan) but he enjoys going to see live matches.  I wasn't really looking forward to going as I’m not really a football fan but I was adamant that I would go.  We hardly ever do anything as a couple anymore, what with me always being ill and he really wanted us to go.

That Awful Sunday Feeling

Ever since I was old enough to form an opinion I've hated Sundays. I guess that is normal when Sundays signify the end of the weekend and the start of the school/work week the next day, but not so normal when you don't work and everyday involves around the same routine.  What are even worse are bank holiday weekends - as I get that awful Sunday feeling twice.

Right up until I became ill with ME I think I just had that normal sense of "Oh, the weekend's over - bloody school/work again tomorrow." Now, there is nothing normal about the depth of sadness I feel every Sunday.  It was less so during the autumn and winter months but as we creep towards longer days, it is definitely getting worse. 

National Puppy Day 2013

This is just a very quick post about a day that is very close to my heart - National Puppy Day!  On 23rd March 2013, it will be the 8th anniversary of this day which not only encourages us to appreciate puppies and the joy and magic they bring to our lives, but also tries to educate and raise awareness about adopting puppies and stopping the evil and horrific practices of Puppy Farming.

I found out about National Puppy Day last year and try to do what I can to educate others as my dogs have meant the world to me and were the only things that kept me going through this illness.  No animal deserves to be used and abused by humans just for profit.  

Please, please, please can you read the posts I have written about National Puppy Day and Puppy Mills and forward them to as many people as possible.

Thank you so much!

Read National Puppy Day to Stop Puppy Farms and 

National Puppy Day Against Puppy Mills

Being Positive Can Be Dangerous For Your Health

Yesterday I posted an article on Bubblews called 5 Reasons Being Positive Is Wrong, but it got so long that I had to leave so much out especially the part about how being positive can be dangerous for your health.  For anyone that has read my previous posts, you’ll know that in August 2001 I became extremely ill after what I thought was just a case of food poisoning; constant flu symptoms, aching muscles, cognitive problems, joint pain and so much more.  You know how it goes.  I had been trained to consider giving into illness as a weakness, as something that is negative.  As I explain in 5 Reasons Being Positive Is Wrong, trying to be positive just made me more and more ill, but it was only when I was real and honest that I not only felt emotionally better, but my physical symptoms also improved.

Why is it that as a society we are hell bent on forcing ill people to endure with a smile?  I won’t repeat the reasons I give in my Bubblews article, but I just want to say that this ‘being positive’ malarkey is totally ridiculous and puts more stress on an ill person rather than helping.  If you’re ill and you’re honestly happy and positive about it, then more power to you!  Embrace your truth and live like that.  But for the rest of us, it may take tears, chocolate or duvet diving to help us to get through the worst of our symptoms.  

Fevre Dream and Sleepless Nights with a Touch of Reverse SAD

It's been a couple of weeks since I last posted and what a couple of weeks it has been!  I wish that was because the fortnight had been so wonderfully busy, but actually the opposite is true.  My recent exertions really took their toll on me; since I posted My German Shepherd Carer the day before I went to visit my family, I had to make another trip because one of my sisters had an announcement to make to the whole family (I'm going to be an aunt!).  Both trips were great, but the effects have been too much to bear.  I've been so exhausted and in pain; the slightest activity is having a profound affect on my health and taking a ridiculous amount of time to recover from.  More than anything, this has left me feeling so down; can't I do anything fun without having to pay for it and when the hell did my health get so bad again?