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About Jay

I've been an ME sufferer since 2001 and now that I am not as ill as I used to be, I share my experiences in the hope that something I say can bring someone else hope or even just so they can learn from my mistakes.

2. If Martine McCutcheon Can Recover from ME…

If Martine McCutcheon Can Recover from ME... ME

…Then Why Can’t You?

If Martine McCutcheon Can Recover from ME...

The ‘Cures’

In Part 1 I talked about how I don’t fully believe Martine McCutcheon had ME, but here I want to talk about the cures that she mentioned. So many ME sufferers try anything to find some relief. I know this, because I have done the same! I even tried Homeopathy which I knew nothing about at the time, but later went on to research and realised what a futile waste of time, money and health that was. I agree with Martine when she talks about how different things can help ME sufferers, because there are so many symptoms and issues that can crop up and I always say put out the fires that you can. So if you’re depressed, get help for that depression. You’re curing your depression, not curing ME. Yes, it can help take the stress off your body, but it’s not a magical cure. First of all, accept that there is no cure so you do not gewt your hopes up with every claim that you hear. Be aware that there are people claiming extraordinary and ridiculous things out there. Educate yourself by knowing what ME is and what it isn’t and this will help you to judge how viable any treatment plan is.

Lightning Process and CBT

I do not agree with any course or treatment plan that works from the premise of ‘Ill-thinking’. ME is a real organic illness. It’s not psychological. No matter what a new age book or quack course tells you, you cannot think yourself better. Would you tell a cancer patient, or someone with MS or Parkinson’s to think themselves better? No you would not (although I guess some people do)! I have a lot of problems with the Lightning Process. Admittedly, there are people that swear the Lightning Process helped them, and I’m really happy for anyone who finds health, but there are just as many, if not more people who found no benefit whatsoever and these people have been taught by LP that it is their fault that it did not work. Cognitive Behaviour Therapy is often put forward as a treatment for ME. It can help you to cope with your symptoms, but it won’t make them disappear.

Graded Exercise Therapy

This is actually a very dangerous one. I wholeheartedly agree that to do too little can be just as bad as doing too much when you have ME, but to force yourself to exercise when you really cannot can be seriously harmful to your health. To be fair to Martine, she did say it depends at what level you are at, and that is very true. Never let yourself be forced into doing more than you can handle. After a while you become an expert at knowing what your body can and cannot handle. Always listen to your body.

Juice Cleanses and Diets

I have tried just about every cleanse and detox program out there. After each one I had a serious relapse. I would tell myself that this was just the effect of my body detoxing and that I would feel better after that. I never did. I remember after one juice cleanse I ended up in bed for 10 days and it took me 8 months to get my energy and health back to level that it was at before I did the cleanse. So when people tell you there is no harm in trying it, let me tell you that there is. My doctor told me that since I had such a serious issue with fatigue and energy anyway, I would be foolish to reduce my calorie intake, and I didn’t listen, but I wish I had. In my experience I have found that making smaller changes to what you eat is easier and more gentle on your body than any radical change, unless you are advised to do so by your doctor.

Finally

I’m sorry I’ve harped on for so long, but really what it comes down to is to question whether these celebrities even have ME if they can make these amazing recoveries. Even if they did, what works for one person may not work for another. I can tell you all this because I had my own amazing recovery back in 2010. It lasted about a year and a half. I thought it was a recovery, but really I had just gotten to the stage where I could manage my symptoms, I was on a combination of medicines that helped with pain and I was eating food that was right for me. Within just a few months of feeling better, I had forgotten all about the rules I had learned when I had ME. I was going out, and I even returned to work after 7 years. By the beginning of 2011 my health was sliding fast! I had to leave my job after 6 months and by the time my sister’s wedding took place in September, I was done in and finished. So, I can relate to these people that want to crow about their recoveries, especially in attempt to get work. But I can honestly tell you that I would never and did never state that my own ‘recovery’ was due to thinking myself better or fad diets and cleanses, because it was not. Not that anyone interviewed me, of course. Always be aware of your illness and the needs of your body, no matter what anyone else does or says. I know I’ve shot down a lot of what Martine said but I don’t want people to think that it is not possible to make a full recovery, some people do, but I can guarantee it won’t be through a fad diet or ‘cure’ program.

I wish Martine McCutcheon continued good health and I’m so happy that she is pregnant because now she can talk about that instead of ME. What do you think?

Image used is a screenshot from the interview video.

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1. If Martine McCutcheon Can Recover from ME…

If Martine McCutcheon Can Recover from ME... ME

…Then Why Can’t You?

If Martine McCutcheon Can Recover from ME...

I saw this video on youtube today and it annoyed me so much. It was posted earlier this year so apologies for only commenting on this now, but I don’t watch television and I’ve been very ill for most of this year. The video is of an interview with Martine McCutcheon about her battle with ME, and how she recovered. You may have friends and family members who have heard her story of recovery, especially as there have been stories about her pregnancy in the last few months. It’s more than likely that someone will tell you to do what she did, after all, if Martine McCutcheon can recover from ME than why can’t you? Well, for a number of reasons actually and here I will outline just some of them so you can stave off those kinds of unhelpful suggestions while expending the least amount of your precious energy and health. But first the video…

Anger at Martine McCutcheon

Before I even saw this video, I had read a number of news stories about her struggles with ME. I want to say that I actually like Martine McCutcheon and I can totally relate to how an illness wreaked havoc in her life; so many ME/CFS sufferers have experienced the same thing. But the woman is out there doing so much more harm than good with these interviews she keeps giving about recovering. There has been a lot of anger expressed by people in the ME community at the things Martine has said. But it is not her fault; she has been given a diagnosis by medical professionals and is just relating her experiences. There are so many PWME who are not aware of the complexity of the illness and the way it can be misdiagnosed. Anyone who has defended her has also been met with anger. I’m not defending her, and I wish more than anything that she would just shut up, but she obviously wanted to make some kind of a comeback so she could earn a living. I think we would be better suited directing our anger at the idiots that diagnosed her and those that perpetuate these kinds of misunderstandings. She has done nothing wrong.

Was She Misdiagnosed?

In the video she begins well, yes ME is a misunderstood illness and the symptoms she describes are very ME-ish, and I applaud her for wanting to raise awareness about the illness. But what the hell, Martine! I couldn’t stop cringing as soon as she began talking about the causes and onset and said “sadly a lot of athletes or anybody that pushes themselves beyond their limits, and when I was doing the west end show, you are like an athlete, you have to be on form all the time and I think a lot of heartache a lot of unaddressed issues I hadn’t dealt with, just running to the next role, running to the next job, it kinda manifested in like a dis-ease…”. This statement perpetuates the myth that ME is just a form of exhaustion from over-doing things or that type A personalities are prone to getting it and that takes us straight back to the days of ‘Yuppie flu’. I want to address what she said about athletes and ME because this is something that annoyed me last year when Action for ME posted an article about how Olympic and World Champion canoeist Anna Hemmings was the new Ambassador for Action for ME. Every few years you get an athlete, and even an actor like Martine McCutcheon, who comes out with a story about how they beat ME, and this absolutely gives the wrong impression about ME. It is highly unlikely that most athletes do in fact have ME. There is something called Overtraining Syndrome, which has similar symptoms to ME, but that an athlete can actually recover from with adequate rest. The other thing is that low levels of exercise are beneficial for people suffering from Overtraining Syndrome and can lead to a quicker recovery, but for people with ME that same exercise would make the condition worse. So, can you see how it would be disastrous for an athlete to say they had recovered from ME, when they had in fact recovered from Overtraining Syndrome? I’m not saying Martine had Overtraining Syndrome, but there is a real need for better diagnosis by medical professionals. Check out the below video for a better explanation of ‘What Causes ME?’

Continued with a look at Martine’s Cures →

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Coeliac Disease, ME and me

Coeliac Disease and ME ME

Coeliac Disease and ME

Recently I started seeing a new doctor and she wanted to test me for Coeliac Disease in relation to the plethora of symptoms which have been worse lately. This is not the first time a doctor has brought up CD. Back in 2003 when I was in the middle of my journey to get a diagnosis for the bizarre illness that had taken over my life, I was tested for Coeliac Disease. The first part of the test was (and still is) a blood test and then a biopsy of the small intestine. My blood test came back as positive so I also had a gastroscopy and endoscopy; at that time I had so many digestive symptoms and in fact my ME symptoms were triggered by a viral infection. The biopsy showed inflammation but I did not test positive for Coeliac Disease. At that time I was not very medical savvy, meaning, I had complete trust in the doctors and did little to no research myself. It was not until many years later that I realised the tests I had in 2003 were useless because the doctor who had suggested Coeliac Disease had also suggested I go on a gluten free diet. So I had been gluten free for several months when I took the tests.

What is Coeliac Disease?

Before I go back to my CD journey, I just want to take a moment and briefly explain what Coeliac Disease is. Coeliac UK states that possible symptoms may include:

  • severe or occasional diarrhoea, excessive wind and/or constipation
  • persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting
  • recurrent stomach pain, cramping or bloating
  • any combination of iron, vitamin B12 or folic acid deficiency
  • anaemia
  • tiredness and/or headaches
  • sudden or unexpected weight loss (but not in all cases)
  • mouth ulcers
  • hair loss (alopecia)
  • skin rash (dermatitis herpetiformis)
  • tooth enamel problems
  • depression
  • infertility
  • liver abnormalities
  • repeated miscarriages
  • joint and/or bone pain
  • neurological (nerve) problems such as ataxia (poor muscle coordination) and neuropathy (numbness and tingling in the hands and feet)
  • amenorrhoea (lack of periods in women)

I’ve experienced all but a few of these symptoms for many years now. What causes them for people that have Coeliac Disease is a protein called gluten which is found in grains such as wheat, rye and barley. Coeliac Disease is not an allergic reaction, but an autoimmune condition, so gluten causes the immune system to attack healthy tissue, and damage is caused to the small intestine.

Coeliac Disease and ME

If you have been diagnosed with ME, you will notice that many of the symptoms on that list are commonly found with ME sufferers too. I think that too many ME sufferers just have every new symptom that comes up brushed off as being ME related, but just because you have one illness does not mean you cannot have another. In fact, from what I’ve been reading online, there are many people that believe there is a relation between ME and CD. I have also seen that some people have fought so hard to come to terms with ME and to have this illness recognised by friends and family, they themselves are unwilling to add another illness to the list. This may be because it just seems like too much work or because they believe it is an either/or situation; they either have ME or they have CD. I don’t believe it is an either/or situation. Of course, in some cases it may be, but I know for me it is not. I went gluten free back in 2003, and it really helped some of my symptoms, but my ME symptoms continued. In fact my health continued to worsen for the next few years, although I was back on gluten by 2005. I will be writing a separate post at a later date about the gluten-free side of things, but for now I just want to say that I am more than happy to investigate Coeliac.

As ME sufferers, our bodies are under so much stress and we go through so much. It is actually good news when some of the symptoms can be explained by some other illness, especially when there is a treatment for it. I will gladly put out the fires that I can, and hopefully that will also help the ME side of things.

Coeliac Disease and me

A few weeks ago I agreed to have the blood work to test for CD. But for days afterwards I was so anxious. When I feel that way, I try to follow the thread of my emotions and look at what is causing the anxiety. I realised it was the idea of having to go through the gastroscopy again. In fact I even told my doctor that I was extremely traumatised by the last time I had one and she said she could not promise I would not have to have one again. My fear of the procedure stems from a bad experience with a dentist many years ago and that is what caused me to write the post Fear of Dentists.

I thought about what I wanted to do and decided I would no way go through with the gastroscopy, but I would instead just go on a gluten free diet. I wish I had stayed gluten free when I tried it a decade ago, but in 2005 I had to go away to try alternative treatments and it was not possible to eat a diet free from gluten. I know eliminating gluten before has helped with the gastro-symptoms at the very least, and that’s good enough for me.

I would like to say that if you think you have Coeliac Disease, please speak to your doctor before you do what I am doing. I say this because you may have something else entirely. In my case, this is my second time around and I know the effect a gluten free diet will have on me. Also, I see my GP regularly so my health is under constant supervision. If the biopsy of my small intestine had come back as testing positive for Coeliac Disease, I would have gone on a gluten free diet, but even if it did not come back as positive, I probably would have still gone GF, because I would have been working on the idea that at the very least I have a gluten intolerance.

I would be interested to hear from anyone who has both ME/CFS and Coeliac Disease, whether diagnosed, or undiagnosed gluten intolerance.

Image credit and terms of use.

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A Paw to Lead You Through the Darkness

How a pet can be the best friend and the best medicine when you have a chronic illness.

How a pet can be the best friend and the best medicine when you have a chronic illness.

I became ill in August 2001 and I was diagnosed in January 2005. I spent the next nine months after diagnosis trying every alternative therapy known to try and ‘cure’ myself. No way could I be ill! In 2005 I went away for four months to try these therapies and when I came back home in October, my family had adopted a German Shepherd puppy. This is the story of how that little puppy and how he became my saviour during the darkest time of my life.

My family had a German Shepherd dog before. My sisters and I grew up with Jack, who was the best friend any children could have. He passed in 1999 and we’ve all missed him every day since then. After Jack, we often spoke of getting another dog, but with all of us grown up and in and out of the family home, we didn’t think it was a good idea. Also, one never forgets the pain of losing a dog, and that in itself can make you think twice about getting another one. But as I mentioned before, in 2005 while I was away, my sister heard about a German Shepherd puppy that was up for sale. The family that had bought him had had second thoughts about owning a dog, as so often happens. So, my sisters went to visit the family and as soon as they saw the puppy abandoned in the garden without any water, they brought him straight home.

My furry saviourHis first human family had named him Jimmy, but that was not a suitable name for this boisterous puppy. My sister decided Masti (meaning ‘fun’ or ‘mischief’ in hindi) was a much more suitable name. Masti was very different from Jack. Where good old Jack had always been a sensible, giving dog, Masti was a brat. This had a lot to do with the fact that he was very spoiled by the whole family in response to having a dog after so long. So, when I met Masti, I was not impressed and missed Jack more than ever. I was very ill at the time and this crazy puppy just seemed more trouble than he was worth. That soon changed though.

He became my companion, my saviour and at times my reason to live. I may have been confined to the house or even the sofa at times, while everyone else went out to work, but I was no longer alone. I had a new funny friend to keep me company. I’d wake up from naps and there’d be this big furry face hovering over me, while his tail thumped away; an indication of how happy he was that I was awake. Very soon I could have full conversations with Masti, and one of the best things about German Shepherds is their extraordinary intelligence. He knew the names of all his toys (‘Burger’, ‘Piggy’, ‘Tree’, ‘Ball’) and one of his favourite games was one that even I could play with him, even though I was ill. I would hide a toy (usually Piggy) in the room, while Masti was instructed to wait outside and then he’d come running in, when I called “Where’s Piggy?”

Masti kept me sane when I felt I would go insane with the effort of being ill. He was my friend, when I had no others. No matter how little energy I had, even if I could not speak, it was enough for him. Masti was also much more tactile than Jack. In fact, we often thought that Masti did not realise he was a great big German Shepherd, and instead believing himself to be a lap dog with how much he loved cuddles. After the alternative therapies it was a good year before I felt able to deal with being ill. I learned about the illness, started managing my own health and I ended the grieving of the pre-ME me. But it was a dark year full of despair and depression. I think I may have ended my life during that time, had it not been for Masti. He truly saved me in every way a person can be saved.

A Furry Paw to Lead You Through the Darkness

In 2010, my health improved enough to allow me to move out into my own place. The hardest part was being without Masti and he did not make it easy when I went back to visit. He always seemed to know when it was coming up to time for me to leave. He followed me around and watched me with a sad questioning look “Leaving again? But you just got here.”

As you can probably tell by the past tense, this story does not have a happy ending. On Monday we had to make the awful decision that every pet owner dreads, and call the vet to have Masti euthanized. A month ago he became very unwell and the vets told us that he had tumours growing and there was nothing that could be done and they gave us a ball park figure of two months. The news was devastating. I think I cried for 24hrs straight when I found out and I went to see him. What really hurt me was that he had helped me so much when I was ill and had even been a reason for me to live at times, yet there was nothing that I could do for him now that he was ill. But this past weekend he stopped eating and just stopped being the Masti we knew. I saw him on Wednesday last week and he was extra sweet and gave me more cuddles than he ever had and I think I knew then that he was saying goodbye. Masti was nine years old, but he never lost that boisterousness he’d had as a puppy, so it was heartbreaking to see him so fatigued and lifeless on Monday. The vet came to the house and we were all with him at the end. He was brave and beautiful right until the end and I will never forget him. He was a true angel that came into my life when I needed him most.

Have you had a furry angel help you during the dark times of chronic illness?

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Fear of Dentists

Fear of Dentists

I have a devastating fear of dentists. I happen to live with someone who not only goes for the recommended check-up every six months, oh no, he CHOOSES to go every three months. This is not because there is anything wrong with his teeth, but because he likes to have his teeth checked and cleaned regularly. That is such an alien concept to me; I can’t even imagine it because I am absolutely terrified of dentists. I know most people do not like to visit the dentist, but it is much more than that for me. Even writing this is making me feel extremely uneasy. I love looking for and adapting suitable images for articles, but I could not even bring myself to look for images of anything to do with dentists, hence the safer option of a cartoony tooth and a quote. I can’t watch anyone having any kind of dental experience on TV and the sound of the drill is agonising.

My fear is in response to an experience I had when I was 15 years old. Before that, my visits to the dentist were just mildly uncomfortable and a little painful (my dentist did not believe in anaesthetics to numb the area of the mouth being worked on). Then my dentist told me that one of my incisors had not grown out, but was lying across the top of my mouth and indeed, there was a bump in the roof of my mouth. He said he could remove it under local anaesthetic or I could have it done under general anaesthetic in a hospital. I absolutely did not like the idea of having my mouth cut open while I was awake, and neither did my mother. My mother knew a dental nurse, whom she consulted about the procedure. She advised my mum that it was probably best for me to have it done under general anaesthetic as it may be quite traumatic due to the amount of time it would take. My dentist owned his practice, and the nurse advised that this kind of procedure would be a big earner for him, so it was little surprise he would want to do it in house.

The dentist was not at all pleased to learn this and he tried to dissuade us, saying that he could book me in and have everything done within the next fortnight, whereas it could take up to a year to get seen by the hospital. We stuck by our decision, despite his forceful protests. I went into hospital and had my procedure within a few weeks. When I went to see the dentist the next time, he laughed and said “Still waiting for that hospital appointment?” as soon as I walked in. I took great satisfaction in telling him that I had already had the procedure, and I am sure that what ensued was punishment for this flippant comment. I needed a filling and when I was in the chair, he began drilling my tooth, but it really hurt, more than usual. I began to moan in pain and he told the nurse to hold me down, which she did (she was his wife) and he continued drilling saying “What? So now you want a general anaesthetic for a filling?”

I was in complete shock when I left that day and a complete mess. That one incident has affected me very badly and I wish it hadn’t. I have this horrible fear of anything going near my mouth; I had to have a gastroscopy in 2003 and when they were explaining the procedure to me, I completely freaked out and had a full on panic attack because I couldn’t handle the thought that something would be put down my throat. Now there is the chance that I have to go for another gastroscopy, so I find myself thinking back to where this all began.

Four years ago, I decided to do something about it; I wanted to confront my fears. I went to see a dentist after eighteen years and it was nightmarish, but the dentist was lovely. I was referred to a specialist and I was sedated for the check up and cleaning etc. I’m not scared of dentists, I guess but I’m still terrified of anything going near my mouth. It’s a kind of claustrophobia; like I can’t breathe and will suffocate. Also, it makes me feel so vulnerable. My biggest fear is that something will happen and I will need emergency dental treatment. So far though, my teeth have not let me down. I just hope it stays that way. But I have no idea how I will cope with another gastroscopy.

How do you feel about dentists? Have you ever had a similar experience?

Original image credit – used under creative commons agreement.

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Haunting Renewed: ME/CFS Ghost Update

ME/CFS Ghost Blog UpdateThere have been so many changes lately and some related to The ME/CFS Ghost. Do you ever feel that even though you’re ill and nothing really happens in your life, time goes so fast and you’re always ‘busy’? I feel like that even when I’ve spent more time in bed than out. It is the same with these changes; physically and practically, I guess they’re nothing major. But for me, they’re very much all consuming! I guess that is the way when health and energy are in short supply.

Of the changes affecting The ME/CFS Ghost (I’ve got to find a shorter way to convey that! TMCG?) the main one is that it now has a new home! Yep, it is all set up on its very own site and no longer on Blogspot. I did this because I realised that I had been neglecting TMCG and not really treating it as a real blog, like I do with the other sites I write on. Yet the subjects I write about here are perhaps more important than the others put together! Also, it felt right to head out on my own and try something a little differently.

As I mentioned the other sites I write for, I would like to say that I now no longer write for any sites but my own. If you’ve followed my previous posts, you’ll know that I sometimes wrote on sites like Squidoo. I had less and less time and energy to write on those sites and had begun to concentrate more on my own sites anyway. However, the drastic changes made on some of these other sites, and the fact that from October 2014, Squidoo will no longer exist, I’ve decided to delete all my content from them and go it alone.

What this will also hopefully mean is that I will be writing more often on here, health allowing of course. But the worst of the summer symptoms seem to be abating, so I am hopeful that I’ll be getting more done. I hope you like the ‘new’ site. Today marks the beginning of a new The ME/CFS Ghost.

Image Credit

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ME Sufferers are Judged Unfairly

ME Sufferers are Judged UnfairlyYou may have noticed that I have been in the slow lane the last couple of months. OK, so to be more accurate, I’ve been on the hard shoulder. When I get like that, ideas can be hard to come by, and that is a serious problem when you making a living writing, as I do. At times like this I rely on the wise words of others to help me. There are so many websites online dedicated to quotes and I love to trawl these and look for some inspiring ones.

When I’m not in the mood to write or just not able to, I’ll take a quote like this and jazz it up using Photoshop. I then share it on one of my website or social media accounts. So the quote that got me thinking today is one of my favourites and I do tend to come back to it time and time again.

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

I love this, because I think it is so true; as a society we have such a narrow way of judging what is skill or talent or success, and they don’t apply to everyone. This quote often makes me think of different things, but today it made me think of my grandmother who passed in 1995. My grandmother never had a job, couldn’t speak English and never went to school. But she could run a home on the tightest budget and managed to look after a dozen children, all under the age of twelve, without a single tantrum. She raised a family on next to nothing and then helped her children raise their own children.

I also feel it relates so much to ME sufferers in so many ways. ME sufferers are judged unfairly by people, be it those gatekeepers of state benefits, our friends and family or people in the street (if we make it as far as the street). It is our job as sufferers not to let these judgements have us believing that we are stupid or inadequate. There were days when just managing to wash my hair was as worthy of applause as winning a new contract at work. Or like today, just getting this written makes me feel a real sense of accomplishment, even though I have had little sleep, I’m recovering from an infection and am not even sure I am making any sense (sorry!).

So I’ll leave you to ponder: in which ways are you a genius even though you have ME?

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What I Found Out in a Day on Twitter

I have had a Twitter account for a while, but have not seriously used it. However, yesterday I spent my first full day checking my account and monitoring tweets and this is what I discovered:

Platitudes Really Annoy Me.

One of the accounts I follow posts platitudes about how great things are, positive quotes and is all about the silver lining. I’d seen them before, but to see her send a new one every few minutes, I was impressed. Well, by the end of the day I was impressed. I started off the morning thinking “Awww, that’s nice”. By lunchtime I was a bit fed up of having my feed jammed with so many uninteresting tweets. By late afternoon I was sick of the fluffy, well-intentioned nonsense and even went to the person’s profile with every intention of unfollowing them. But then I remembered why I had started to follow her in the first place and so I didn’t hit the button. Now, it is evening and all cynicism aside, I am seriously impressed. That account tweets every few minutes all day, every day; impressive. Even more impressive? Who knew there were that many platitudes in the world and so far I haven’t seen a single one repeated. Also, every now and then they’re broken up by a beautiful calming image of a waterfall or some other peaceful landscape or a message of gratitude and thankfulness. This really isn’t my kind of thing, but as there are 55,000 people following that account, there sure are a lot of people who enjoy it, so more power to them.

How Quickly You Learn Breaking News.

I found out Bob Hoskins had died even before any of the news sites, like the BBC had a chance to tweet about it or before any one of my Facebook friends had time to post one of those typical ‘Bob Hoskins Dead. So sad. RIP’ messages. This is truly astonishing for someone like me (the finding out so soon part…although Hoskins’ death was very sad news). When Nelson Mandela died I found out when I visited my sister and found a newspaper with a front page article about his funeral. The newspaper was four days old. If my sister had had her recycling pick up before that visit, I may be oblivious to that news even now.

How Amusing and Bewildering the Topics which Trend Can Be

As the news about Bob Hoskins broke, of course his name shot to the top of the ‘Trends’ list, but it was closely followed by ‘Who Framed Roger Rabbit’. Seriously? It was a good hour before ‘The Long Good Friday’ showed up and I’m still waiting for ‘Mona Lisa’. I love Bob Hoskins but can’t say I ever thought much of that bloody Roger Rabbit movie! Anyway, I always preferred his normal accent than to a put on American one.

People Will Keep Tweeting About Nigel Farage and UKIP…

…even when they’re complaining about how much attention and coverage these two topics are garnering. I believe that is a little thing we call irony out these ways.

It Can Be Quite Fun and Easy To Do!

I don’t know if I have it in me to be on Twitter all the time, not even just observing others, but I did enjoy it and found it is much easier to do than I had ever anticipated. But I also realised that I am not ready to use Twitter via my phone. I used the app for a few seconds before I had a full on panic attack because I was getting notifications and couldn’t figure out how to sign out of it. I calmed down and did manage to do just that and I think it may be a while before I venture back to Twitter via my phone.

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More ME Soldiers Down, But We Keep Fighting

Having ME takes a special kind of courage.

Yesterday was a bad day…a very bad day. It started off quite well, but by the time I got into bed yesterday evening I was physically, mentally and emotionally exhausted. I just felt like I had been through the washing machine of life and had come out limp and wrung out. So why was it so bad? In a nutshell, I think I overdosed on ME and ME’ers yesterday.

I’ve been absent from the ME scene for much of the past few months, but I have been writing a book (ME related and more about that in the future) and as May is almost upon us, I wanted to write more articles online about ME. Every May I try to write as many posts as possible to help raise awareness of this illness. I logged into my Twitter account and had a look around at what my fellow ME’ers were up to and what they were talking about. That’s when I heard the horrendous news that Irene Romano, a very sweet and lovely lady had died in February. I knew Irene because I had started following her on Twitter after I discovered her blog Laughing from My Sick Bed. She had not posted since the end of January, and in that post she had mentioned she had a chest infection, so I just assumed she was too ill to write. After all, I’ve been known to take extended breaks from writing when my symptoms flare up or I get an infection. Alas, that was not the case. There was such abject sorrow in the tweets responding to the dreadful news of her death. I went back and read her last post again, and it affected me in a way I could not have imagined. I felt blow after blow as I read about how she and her movie-obsessed family were looking forward to the Oscars, and her joy at the birth of her grandson. He loved the sound of her voice and it made him stop crying. He’ll never hear that voice again and she never got to have the simple pleasure of enjoying the award ceremony show with her family. It is just so sad.

As fate would have it, yesterday was also the day that I came across an article about Jonathan Hales who, after suffering with Severe ME for 30 years, had committed suicide. I don’t like the Daily Mail (understatement of the century), and never expect them to do news stories any justice; needless to say they did not disappoint in that regard with this article either. I wish the story had covered more about the horrors of the illness that lead to this man feeling he had no option but to take his life. Instead, it leaves the reader with more of a notion that he had mental problems, and that he had been offered psychiatric help, but had refused it. Indeed, the article which gives details of the inquest into this death states that the mental health authorities had tried to help him and had even showed up at his house, but he did not let them in. “‘Jonathan continued to report his view that mental health services were of no help to his situation and physical suffering,’ said the report.” Can you blame him? Sophia Mirza anyone? Karina Hansen? I did agree with the final part where his mother talks about the need for residential centres for people like Jonathan and other Severe ME’ers, as there are for people who suffer from other severe illnesses. The point that this article seemed to almost totally miss is that this man was desperately ill, and in pain and totally isolated. He had suffered for 30 years and it sounds like he had an understanding doctor, but there was no relief in sight for him. How can we allow people like him to suffer in this way?

By the time I had finished reading about Jonathan Hales, the ache in my chest from Irene’s news was beginning to morph into something with more heat and bite, as I felt my anger and outrage begin to stir. I should have just stopped there; called it a day and got on with something else. But I didn’t, of course I didn’t. I saw a tweet from someone enquiring about people’s experiences with Homeopathy. I responded briefly and was proud of myself for keeping the venom out of my tweet (I will rant about Homeopathy another time) but I noticed that the tweeter also had an ME blog so I took a peek. I won’t mention the blog, because it is not fair to attack how this person wants to deal with her illness. It is a nightmare getting from day to day at times, and if sufferers can find solace and peace in whatever way, that is their right. But the blog offended me. The blogger has been ill since 2011, so I know the stage she is at. I became ill in 2001 and didn’t get my shit together until 5 years after that, so I can understand, but still, the types of things she is writing do not help ME sufferers. In just the few articles I read, she perpetuates the myth that GET (Graded Exercise Therapy) is helpful, that people can fully recover from ME and that the Gupta Programme is even remotely helpful. I admire the fact that she has started a blog, but rather than making absolute proclamations about things she knows so very little about and that help no-one, I would hope that she would instead use her blog as a record of her own journey and growth.

How can we lament the wounds inflicted on sufferers with the things that people say about ME, when we have the very people who suffer from ME adding salt to those very wounds? If sufferers like that blogger think what they have can be improved with CBT, NLP and exercise, then how can they possibly have ME? She is quite vitriolic in her response to people criticising her for just this and wonders at how people can waste their limited energy and health on arguing. We fight against these types of fallacies because our very lives depend on it. If we do not raise our voices against the insane labelling and ridiculous notions, by declaring that we have a real illness, who will do it for us?

So that was the final nail in my coffin yesterday and I felt defeated and even wondered why we bother. We have lost soldiers and we have turncoats within our very ranks, and I was overwhelmed with the sense of hopelessness. But that was yesterday. This is today. I may be criticised for my references to this being a war. But at its very core, that is what it is and we fight. Every day we fight. Instead of a trench in a battlefield, we may be confined to our beds, and the weapons we use are not of the bullet and gun variety, but our laptops make us powerful enough.

My respect and admiration for all those ME warriors who keep fighting the injustices we face in whatever way they can.

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I Just Don’t Care and That Is So Great!

Housework no priority when ill

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 filed 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 only 4hrs of 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. I just don’t care! 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 had 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 future posts.

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