Tuesday, 18 February 2014

ME/CFS and SAD

Yesterday I took part in a HuffPost Live segment about Seasonal Affective Disorder (SAD).  I suffer from the Summer Blues, rather than Winter SAD and I wrote an article about this last year (Melting to Death in the Sun – Life as a Reverse SAD Sufferer).  My ME/CFS symptoms have been really bad lately, thanks to a recent cold and with lots happening in my personal life (I will be moving house this year – HELP!) so I have to admit that when I received the invitation from the HuffPost Live segment producer, I really did not want to do it.

On any given day, I feel much more comfortable with the written word rather than the spoken.  But my recent brain fog had me worried that I would not be able to keep up with the conversation let alone reply in a coherent manner.  Also, I look and feel so ill, that I didn’t want to be seen on a video.  So I was all set to say “Thanks, but no thanks” but I thought about the reasons I wrote about SAD and it was for the same reasons I write about ME/CFS; to raise awareness and help sufferers know they are not alone.  So I agreed to do it.

The segment had not been on for long before I realised that I was probably the worst example they could have picked as a Summer SAD sufferer, because I also suffer from ME.  The two complicate each other and I would not have the same options available to me as a standard SAD sufferer.  The doctor who took part in the segment also made some suggestions about what Summer SAD sufferers could do, but the painkillers and meds that I take to help my ME symptoms prevent me from trying these out.

So, in hindsight, I fear I came across as this weird freak that abhors the sun and doesn’t really try to get any help, when honestly the complications come about because of my ME.  You can watch the HuffPost Live segment here 

Do you have ME/CFS and also suffer from SAD?  Do you find that one makes the other worse or that some of the treatment options are not available to you because of other meds and symptoms?


Saturday, 9 November 2013

I Just Don't Care And That Is So Great!

I've just spent the last half hour feeling ridiculously angry over insensitive comments from my partner, but that all changed a few minutes ago to real pride over how much I have changed.  My other half has been on at me to sort out a pile of papers and letters on the dining table.  He tidied and file the worst of the mess, so what is left is mine (or so he claims).  My ire started this morning when he once again pointed out the pile.  Then I received a delivery of clothes and shoes; as I don’t visit shops, I order everything online, try it on then return what I don't like or doesn't fit.  Somehow, in the process of doing all that, he’s either gotten in a bad mood because there was stuff all over the flat (we live in a shoebox) or because I wasn't working on business planning (my idea) as we were meant to be doing.  When he saw the 2 large bags of returns he started to interrogate me on when they would be collected and if I could at least hide them away somewhere.  He is obviously in a shitty mood about something; but I appreciate stupid, insensitive comments about as much as the next person.  Especially as this week has been bad with a visit to the doctor’s, new meds and around 4hrs sleep each night.
The realisation that made me feel so much better was this; not only does the pile of papers on the table not bother me at all, but neither do the dishes in the kitchen or other household chores that are waiting for me to have a good day.  At one time I would have spiraled into deep depression at not being able to tidy up or killed myself trying to do it.  But not now; if I can't do it, I can't do it.  The moody man’s passive aggressive behaviour annoyed me and his insensitivity, but he’s also has a bad week, and we’re all allowed an off day.  He is not ignoring my illness or pretending I'm not ill, which may have been the kinds of thoughts I would have once had as I remembered all the people who actually have done that to me. 
I don't know exactly when I changed these aspects of myself, but I'm glad I have because ultimately it makes life easier for me.  There are plenty of genuine hardships and even tragedies when you have ME, yet in the not so distant past I have been guilty of reacting extremely badly to things that perhaps are not as important or as serious as I have made them.  I've now started to think about the more specific things that did bother me but now do not and I think I may write about those more in depth in the next few posts.

Tuesday, 8 October 2013

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. 

Wednesday, 4 September 2013

BBC Inside Out Programme on Sikh Girls Being Groomed by Muslim Men

On Monday night I watched the BBC Inside Out programme on Sikh girls being groomed by Muslim men.  I don’t watch television, but first one cousin sent me a message to “Watch BBC 1 now”, then another cousin had posted “Check out Inside Out on BBC 1 now!!!” as her Facebook status and then my dad called me to tell me that I should watch it.  The contact from my cousin and father were because they were aware I was concerned about a Sikh friend’s daughter who is a minor and has been involved with a Muslim boy and there is cause for concern.  So, I found a repeat of the show online.

I don’t have any doubts that this type of grooming takes place; whether it is as pervasive as some of the people interviewed in the show believe, I cannot say.  But coming from the Sikh community, I honestly believe there is much that it can do to help their daughters if they experience this type of grooming and from even becoming victims of this in the first place.

Saturday, 31 August 2013

The Bubblews Warning Label: Problems With Payments

Back in April I wrote a post titled Make Money with Bubblews for Doing No More Than You Would on Facebook or a Blog in which I was raving about Bubblews as a way to make money online.  I had been a member for one month then and all seemed great.  In fact, things were great there until a few weeks ago.  I had made about $200 dollars up until that date and not experienced any problems at all with payments.  Then, on 5th August I saw that I had reached the minimum needed to redeem payment so I sent my request through.  it is now 31st August and I still have not received payment nor have I received any communication from Bubblews.  I had heard that they had delayed payments, so I waited, but today I e-mailed them to enquire about the payment.  From what I've heard, I'll be lucky to get a response, but I thought I would go through the motions at least.  Here I plan to write what I believe the problems are with Bubblews.  It may be that you just write me off as a disgruntled user, complaining after not receiving one payment, but I honestly believe there are bigger problems than that.

Wednesday, 14 August 2013

Are Juries More Likely to Find People Guilty Just Because They Are On Trial?

I guess I should start by explaining why at gone 1am I am wondering if juries are more likely to find people guilty just because they are on trial.  If you follow my blog, you’ll notice that I've not been posting much for several months and that’s because I have been extremely ill.  I've been more ill than I have been in many, many years and even when I was able to write, I didn't feel up to writing about my depressing symptoms.  So, I’m going to write about what I've been doing during that time.  I usually pick a DVD box set and watch some of my favourite TV series.  But after a while, even that wasn't quite hitting the spot, especially as my sleeping pattern has been totally out of whack.  I've recently found a new pass time and that is watching episodes of Dateline NBC on youtube. 

For those that don’t know of it, it's an American true crime show and has the same formula; through interviews and narration we’re shown the background on a shiny happy family, one of them dies, and then the legal investigation against a suspect is carried out and finally the court case.  I've watched so many episodes this past week, but I have to say, I'm seriously starting to wonder if the jury just finds every single person guilty, whether there is the evidence for it or not.

I studied Law for 3 years at college, have been a witness in a customs sting case and have sat on a jury, so the law has always interested me.  In fact, I wanted to be a legal journalist once upon a time, until studying the law made me realise that the practice of law has very little to do with guilt or innocence and a lot to do with who can put on the best show in court.

Although I'm not legally allowed to talk about the case I was asked to serve on as a juror, I will say that after that experience, I would have been more inclined to state that jurors are more likely to, initially at least, go for not guilty.  I justified this by assuming that people didn't want the burden of finding someone guilty.  But my case was nothing like the ones they show on NBC Dateline.

Now I’m wondering if perhaps people think “Murder is a serious crime; they wouldn't charge someone and bring a case against them if they weren't sure.”  After all, it’s always so easy on CSI and all the other shows like it.  Dexter has almost been caught so many times and that’s even with him covering up from within the legal system.  But I watched a couple of Dateline NBC shows today, where even the victim’s families were shocked by the guilty verdicts, and one of them even said “I didn't think they would convict on such little evidence.”  Have the legal and crime drama shows that can be found airing all day every day given the average person an unreasonable level of confidence in the police and legal services?  Do they think a person must be guilty of something to have come under suspicion in the first place?


If any case shows how wrong this kind of thinking is, it's the murder case of Angie Dodge and the fact that Christopher Tapp, in 1998, was found guilty of that crime and sentenced to 25 years to life in prison.  You can actually watch that episode (see the bottom of the page) and see the whole travesty yourself.  But the fact is that Christopher Tapp, who was little more than a kid back then, was harassed and cajoled and fed information until he finally confessed to a crime he did not commit and even ended up implicating another man.  I could write the whole sordid tale here, but I will let you watch it, all I will say is that this is such a disgusting miscarriage of justice and I wish I could do more to help get him out, as the victim's mother is currently fighting to do.

I have signed a petition and if you also feel so moved after watching the show, or doing some online investigation, please click on the link below.

Christopher C Tapp New Trial Petition | GoPetition



If you've seen this, or know of this case, let me know what you think below!  Also, do you think juries are more likely to find people guilty just because they are on trial?

Monday, 3 June 2013

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.

Saturday, 27 April 2013

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.

Tuesday, 23 April 2013

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:

Thursday, 11 April 2013

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.  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, just read The Joy and Drama of Living with My Italian Man where I crow about my wonderful partner or I write about 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.