Category Archives: Writing about Illness

Was “Fear of Autism” the Issue?

Or a situation handled poorly by mother and flight attendant?

Was "Fear of Autism" the Issue? Or a situation handled poorly by mother and flight attendant?

A few days ago I saw a video of a family being escorted off a plane by police. The title of the video was ”Fear of Autism” Family Removed from United Airlines Flight. I really felt for the family; it can’t have been nice to be asked to leave and then to have other passengers filming the scene. This is the original video that I watched:

I wanted to know what had happened. Why would people have been scared of an autistic child? So I found this news report with an interview with the mother, Dr Deborah Beegle. She explains that there was an issue with the flight providing a hot meal, which is what Juliette, her daughter needed. After much discussion with the flight crew about purchasing a hot meal from first class, she eventually managed to get one and her daughter was fine after that. But, the flight made an unscheduled stop and the family was asked to leave the flight. I could really feel for the mother and understand her frustration at what she feels is discrimination against her child, however as I was watching the interview, there is a statement that the mother makes which made me think what she said to the flight attendant may have been more of an issue than her child’s autism. Take a look at the video and see what you think, the statement is at around 02:14.

I am an ME sufferer and so I can totally relate to how damaging and hurtful the ignorance of society can be to people with illnesses that are so misunderstood. We get called lazy, like we have a choice not to be so debilitated, and in the same way these poor autistic children get called spoilt brats when they have no choice in the way that they react and respond to situations. I have people within my extended family who are autistic and my sister has also worked extensively with autistic children and their families. These kids are not playing up, but rather some like Juliette, cannot verbalise agitation from hunger and they have specific dietary requirements. I looked through the comments section of online news articles about this incident and I was pretty disgusted by some of the awful comments made about the child and about how she is just a spoilt brat. I totally disagree with those kinds of statements.

However, having said all that, I also don’t think the issue here is the child but rather her mother and the flight attendant. Before everyone jumps down my throat for being unkind, I would like to explain why I think this. The mother has posted her own account of the incident on Facebook and I’m basing the following opinions on her statement.

The Mother’s Mistake

I am an adult with more than one chronic illness and I have special dietary requirements. More embarrassingly, I can also have urgent toilet needs and I need to eat at specific times. Any trip that I make, and I mean any, from a short trip to another part of the city to longer car journeys and flights, has to be carefully planned. The outbound flights are usually easier because I have everything I need at home, so it is easy enough to pack up a meal or two. The inbound flights are much harder because it may not be so easy to get everything that is needed. The Beegle family was on their way back from a Disney vacation, so I can understand it may not have been so easy for them to have everything that Juliette needed. Juliette cannot make the kinds of decisions and choices that I can, but her mother who is responsible for her care sure can. This is what she had to say:

“ My family were on our way home from Disney World. I asked the flight attendant if she had any hot food (Juliette will not eat cold food and had refused her dinner prior to the flight). We had a back pack of snacks but she did not want what we had. The attendant sold me chicken sandwich but it was not hot and Juliette would not eat. The flight attendant said that is all we have. I asked if there was some hot food in First Class. It was a very long flight and I wanted her to get something in her system. The flight attendant went to ask and a male flight attendant in First Class. He came back to tell me that they could not serve the hot food from First Class because we were in economy. I offered to buy the rice they had. He said no. For 40 minutes, I kept trying to think of something that they had that she would eat. He told me no every time. I finally, told him that I am platinum on United thinking he might help. He said No. I again asked if he could make an exception for our daughter who faces autism. He said, no he could not give her the rice from first class. I asked if I could get some chips or something salty for her. He said they had no chips. Juliette was beginning to cry. Frustrated I said, after she has a melt down and tries to scratch in frustration, will you help her then? He said he would see what he could do. He came back scowled at me and gave her a hot meal. I thanked him and offered to pay for it. He did not answer and went back to First Class. i>

I understand that it can’t be easy to always predict how Juliette will react or what she will need, but the mother says herself that her daughter had refused dinner prior to the flight. Surely at that point she would have known that at some point during the flight her daughter was going to feel hungry and would probably need something hot. Also, she has a back pack full of snacks, but not a bag of chips? I swear to you I am not trying to pick on the mother, but I do feel she needs to take some responsibility for not being better prepared. But hey, she’s human, and it happens, especially when you’re rushing about taking care of a child and trying to catch a flight, so she was unable to buy something that she could have asked the cabin crew to warm up for her. Also, I think she was getting frustrated with the lack of assistance from the flight attendant, and that is understandable too as I do think he could have done more to resolve the issue, so I believe she chose the wrong words when she said “after she has a melt down and tries to scratch in frustration, will you help her then?”. Now she probably meant that her daughter would scratch herself rather than scratch anyone around her, but what Dr Beegle effectively did with this statement is let the flight attendant know that her daughter could get violent if she does not get what she needs. The flight attendant may know zero about autism, but he has to trust that this mother knows her daughter.

United Airlines Flight Crew

You have got to believe that there has to have been a better way for the cabin crew to have dealt with this situation. Cabin crew are like people in any line of work; you’ll get some that are helpful and just brilliant at their jobs and others that have become jaded and annoyed with the troublesome customers/passengers. I have needed help with wheelchairs and walking aids due to my limited mobility and in the same trip I was brought to tears by the kindness of cabin crew members as well as the complete callous lack of care I received in the same trip. We don’t know the flight attendant’s side of the encounter as he hasn’t written a Facebook post as far as I can tell. But there has to have been a better way for him to have dealt with the mother of an autistic child. You get the impression (from her statement admittedly) that her request for a first class meal is what got his back up. The pilot’s decision to make the unscheduled stop and offload the family has to have been based on the flight attendant’s account of the incident. Also, the mother says Juliette ate and was watching Pocahontas when we heard the flight attendant say, “We will be making an unexpected landing in Salt Lake due to a passenger in the back having issues.” We were in the front of the plane and wondering what was going on. The plane landed and the flight attendant asked if there was a medical doctor on board. A man came forward two rows in front of us. The man there said, “I am fine. I do not need a doctor.” The door opened and two paramedics came to the man two rows ahead of us. He said again said he was fine. The paramedics left him and came to my row and said, “Everything okay here?” Confused, I said, “yes.” The paramedic asked if Juliette was okay. I said, “she’s fine.” Did she scratch someone? Puzzled I said, “no.” So did someone else need a doctor on the flight? Had there been a report that a passenger had been scratched?

The Need for More Awareness

I agree with Deborah Beegle; there does need to be more awareness among flight attendants on how to deal with families that have members who have special medical requirements. In A Letter to JetBlue From the Mom of a Child With Autism a mother is so grateful for the help and attention they received during a flight. United Airlines may want to pay attention. Someone reading this may wonder why I went to so much effort to point fingers at a mother doing her best to care for her autistic child and a flight attendant. I assure you, that is not my intention. Rather, I feel that while it is important to raise awareness about illnesses and conditions that are so misunderstood and that affect a substantial number of people, cases like this can actual bring negative attention to the cause. The mother may have ten pages of statements saying Juliette was not a threat to anyone, but any lawsuit she brings about may show that it was her own behaviour in the situation that escalated the problem rather than anything her daughter did. When you make the whole thing about autism, rather than about some really bad communication between a passenger and a flight attendant, it may draw at people’s heart strings, but it is not accurate and you actually risk further discrimination and misunderstanding. A quick look at the comments left on reports of this case, even though the press has largely been sympathetic to the mother, illustrates my point, especially in the comments from other parents of autistic children who do not agree with Deborah Beegle’s actions. In fact there are wars being fought in the comments sections of various sites that have reported this story with people disapproving of the mother’s actions and others accusing them of being heartless. Many said they would never fly with United Airlines, while others said they would definitely fly with United now as they take security so seriously.

So what do you think? Whatever your views, please be nice and understand the viewpoints of others.

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Why We Need to Tell Our ME Stories

Why We Need to Tell Our ME Stories...
ME is regarded as an invisible illness. My friends and family can take one look at me and know when I am having a particularly bad day, but the actual symptoms and severity cannot always be seen from the surface. One of the most important things you can do as an ME sufferer is to tell your story. So today I want to tell you why we need to tell our ME stories and to talk about some of the ways you can share your experiences.

On most social media sites, depending on the friends and groups you follow, you’ll often see meme’s doing the rounds which urge ill people to think positively. The whole positive thinking school of thought especially as it used to shame, bully and further isolate ill people is something I feel very strongly about and it is something I plan to talk about in detail at a later date. But for now, I mention these meme’s in relation to the way they encourage ill people not to talk about their experiences. Here are just 2 quotes:

“Never own a disease. Reduce the amount of time that you talk about being ill. Refuse to allow illness a place in your consciousness.”
“Refuse to be ill. Never tell people you are ill; never own it to yourself. Illness is one of those things which a man should resist on principle.”

I can tell you this type of advice (if it can even be called advice) is not at all helpful. I know because I did it for the longest time. Instead, it was only when I accepted I had an illness called ME, began to read other people’s experiences and eventually began to share my own experiences with sufferers and non-sufferers alike was I able to free myself and begin to rebuild a life. If every sufferer followed the advice to resist their illness and not own it, there would not be anyone campaigning for more research into the illness nor would there be any charity organisations helping to raise awareness and support the ill. All ME sufferers would be locked alone within their illness without blogs, social media friends or forums in which to connect with others and to take solace from the fact that there are others in this same, rickety old boat. We would truly be invisible and while that would be great for everyone else, not so much for us. Pretending we’re not ill or that we’re happy with our lot is not going to achieve anything.

When I first became ill it was a struggle to deal with the all the symptoms my usually healthy body was exhibiting. But I can tell you one thing for sure, as hard as it was to deal with the fatigue and pain, there were other things that were so much harder to come to terms with. No-one around me understood how I felt. I was so ill, but my friends and family couldn’t grasp exactly how ill I was. A lot of this was to do with the fact that I hadn’t come to terms with my illness myself, and I didn’t have the health or the energy to help others understand that which I did not understand myself.

Even when I did come to terms with the fact that my body was riddled with an illness, I had such a horrendous time dealing with changes such as the loss of work and the state of my finances, but even worse was the social isolation. I felt so alone and some days I even questioned my sanity; could I really feel so ill and yet no-one could see it? I received little to no help from the medical sector.

What saved me was a book I read called ‘Verity Red’s Diary’ by Maria Mann. As the name suggests the story is a diary. It is a fictionalised account but draws on the authors own experiences with ME. I suddenly realised that there were other sufferers out there and to this day I thank Maria Mann for writing that book. I read the stories of other ME sufferers online, I corresponded with them and suddenly I was not so alone and misunderstood. That was the turning point for me. I felt more comfortable about talking about my illness with other people in my life and suddenly they began to get it. OK, so not everyone got it, but because I felt so much more centred within myself, those people who judged or were plain mean didn’t affect me anymore. Over the next few years I began to feel more comfortable about writing articles online about my life as a ME sufferer. After I realised the importance of sharing our experiences, I began this blog. It was scary at first, but two and a half years on, the blog has helped me so much and I’d like to think others too.

So let me break it down, here are the 4 main reasons you must tell your story:

  1. It will help you to make sense of what you are going through. Naturally we shy away from anything that has the potential to hurt us, so it feels like talking about an illness will hurt us more. But one of the things I have learned by sharing my experiences with others is that as ill as I am, as hard as my life is, I achieve a lot and am stronger than I ever imagined possible. This is true for just about every ME sufferer I have ever come across and I am sure it is true about you too.
  2. You will help non-sufferers to understand the illness. This is an important one because if you have even moderate ME your life will change and it is important that the people around you understand this. If you never talk about being ill or how your illness affects you, how will the people closest to you understand? When you’re not well enough to attend that family christening, or can’t do your share of household chores, how will others react if they don’t know the extent of your illness? Or worse, you’ll push yourself to do more than you can and end up making yourself more ill.
  3. Your story may help someone else. At the very least you’re letting someone else know that there are others in the same boat. The way you have dealt with your illness could help some else deal with theirs; even if you think you’ve been struggling. Even those struggles can give another person solace. You’d be amazed at how often when I’ve been with a group of ME sufferers talking about our shared experiences, more often than not we laugh at the stupid treatments we’ve tried or the silly things people have said. It’s not about spreading the misery.
  4. Yesterday I wrote about how the Conservative government has been targeting the ill for welfare and NHS cuts. ME sufferers are at the top of the list of people who are declared ‘fit for work’ or denied medical help. We have to show the world that we are very ill, but receive little to no help. Our very survival depends on this.

So how can you tell your ME story?

  • One of the basic ways is to feel more comfortable in mentioning your illness to friends and family. You don’t need to talk about it constantly, but next time a loved one asks how you are, tell the truth. It can be something as simple as “I’m on new meds for my muscle spasms which aren’t fun, and it means I’m have to rest more than usual.”
  • Share a comment about your experience on an ME sufferer’s blog post, video upload or social media status. This is easier because a fellow sufferer will not only understand where you’re coming from but will often appreciate the support.
  • Write a blog post yourself about your story or a single experience. You can set up a blog for free. If this seems too daunting or you don’t feel you’ll have the energy to maintain a blog, ask another ME sufferer who has an existing blog to publish your story. I would be more than happy to publish anyone’s story on my blog. Here’s an example that I just saw this morning ‘MerelyExisting is ME’ wrote a lovely guest post called We Are Warriors .
  • Make a video. You don’t need expensive equipment to do this as just about every phone has a camera or voice recording function these days. Again, if you’re not comfortable being in front of the camera or don’t have a camera you can just record a voiceover or even just use text to convey your story. If you’re too ill to even do this, ask a family member to record you for 10 minutes when you’re feeling particularly ill and upload it to YouTube with a line or 2 about ME, or make a compilation of before and after becoming ill with ME pics. Here’s a video that Tom has made to raise awareness about ME. Tom is not a ME sufferer, but his sister is, and he will be running in the Edinburgh Marathon to raise money for ME research.

So if you are able to, please try and tell your story. If you don’t feel able to tell your story at this time, help other people share theirs by reading their posts or watching their videos and sharing these on social media sites or with friends and family. I understand it’s not easy because some days just sitting up is a struggle let alone telling your story online, but take your time and do what you can. If I can help you, let me know and I will try. You don’t know who you can help with just a few paragraphs; you may even save the life of someone who feels very alone. You can be serious and honest, or talk about some of the sillier things that have happened. Just be true to yourself; there’s no right or wrong way to do it.

Do you have any other ideas of how ME sufferers can share their stories? What have you learned from hearing other people’s stories? Let me know in the comments section.

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What Can We Expect and Do to Fight Tory Persecution?

What Can We Expect and Do to Fight Tory Persecution

Last week on election night when I saw the results of the exit polls I felt such despair and grief I cried and cried. The darkness was so profound that I could not even bring myself to talk about it. What made it worse was the fact that I was not alone and when I looked at the tweets of other ME sufferers, they too were feeling exactly the same, in fact some people even feared for their lives. That may seem like some extreme hyperbole but I can assure you, they have good reason to feel that way. So here, finally, are my thoughts on the election results. We are ME sufferers, what can we expect and do to fight Tory persecution? I’m going to tell you.

I don’t really get involved in politics. What I mean by this is that while I have firm political beliefs and ideologies, it’s not something I choose to write about. So I didn’t discuss anything relating to the elections in my various posts and maybe I should have. In fact, in the run up to the election, I was more interested in May being ME Awareness month and I had planned to release a series of videos and articles to raise awareness of this illness. Despite my planning, I had to deal with a bout of food poisoning and then full blown flu in April, which I am still recovering from, so everything got delayed. But I made sure I had registered for my postal vote and I filled out the ballot paper and sent it off. It was a wasted vote because the Conservatives (whom I did not vote for) were assured a win in my area. Yet I still voted. I don’t want to discuss the reasons people should or should not vote or even the electoral system and the pros and cons of ‘First Past the Post’ or how this travesty was allowed to happen. These are things that are being discussed everywhere at the moment. I am more concerned with how the results of this election affect us as very ill people.

Why We’re Afraid

One of the very first things the coalition government did when it came into power 5yrs ago was to wage a war on the ill and disabled on benefits. We were all portrayed as lazy, scroungers and it was implied it was our fault that the country was in such economic dire straits. “We’re all in this together” we were told, while it was the most poor and most ill in society that were attacked. I don’t deny that economic reform is needed, but why start at the bottom? Why not start at the top? What kind of a government points the finger at the ill and poor instead of at the real culprits of the financial crash? I’m not naïve enough to say that things would have been much different under a Labour government, but the fact is that it was the previous coalition that came after us with a vengeance.

Here are just some facts about harmful changes that government has made:

  • The Under Occupancy Charge, also known as the ‘Bedroom Tax’, affects 660,000 families 63% of which have a disabled family member.
  • 33% of NHS Walk Ins, 66% A&E/Maternity Wards and 16% of all other types of A&Es have either been downgraded or closed. The Tories have overseen the worst A&E crisis in 11 years. Not since January 2004 have breaches of the A&E 4 hour target been as bad.
  • There are 477 fewer GP Surgeries, and a 4 fold increase in unfilled GP vacancies since 2010, partly caused by the £987mn real terms cut in GP funding. England’s GP to patient ratio has worsened by 3-4% as population increases. Of 27 EU Countries, the UK is ranked 24th for the number of working doctors it has per head of population (just 2.71 per 1,000 people).
  • They forced through a reorganisation of the NHS which has accelerated privatisation. Private Firms have been invited to bid for £18billion of NHS Contracts. Of contracts decided upon, private health have won 33%, 56% or 70% of those contracts depending on which statistic you place most stock in.
  • According to the UK Statistics Authority the government broke page 45 of their 2010 Manifesto to increase NHS Spending in real terms every year. According to the IFS, NHS Spending is falling 9.1% per patient from 2010 until 2018. The King’s Fund says the NHS is facing its tightest budget squeeze since 1979. And the Nuffield Trust said that NHS spending is falling steeply as a proportion of UK GDP.
  • Despite inheriting an NHS that enjoyed record satisfaction ratings, the coalition, by 2012, had delivered the largest every fall in patient satisfaction with the NHS.
  • A highly efficient NHS Direct has been shut down and replaced by a for-profit NHS111 service that botched its initial launch. 78% of the NHS111 staff who process 111 calls have no clinical expertise. This has caused all sorts of pressures, including additional admissions at A&E. It has been reported that there have been 22 deaths or serious injuries which were caused by failures in the launch of NHS 111.
  • S75 regulations, TTIP, and forced closures of A&Es take power away from the people and place it in the hands of unelected corporations. The government have insisted that healthcare will not be exempt from TTIP. They passed clauses to allow Jeremy Hunt to force NHS closures against the say of the local public, and diminish the court’s role in holding him accountable. He has also passed regulations to push commercial competition in the NHS much more forcefully. Needless to say, all of this is anti-democratic.
  • 9,746 Hospital Beds have been axed under the Tories. The UK now has one of the worst hospital bed to patient ratios in the world. 1,876 Mental Health NHS Beds have been cut and up to 4,000 Psychiatric Nurses have lost their job, and overall mental health provision has been cut by 25%.
  • The coalition ignored National Audit Office warnings that the Work Programme (which has twice been declared unlawful in a court of law) would fail and it failed to deliver jobs for 85%-91%% of participants according to the UK Statistics Authority. The Government’s £200 million Back to Work Scheme helps just 3% of the people it targeted said the National Audit Office.
  • After the coalition ordered private firms to toughen up the Work Capability Assessments, 158,000 were wrongly found fit to work , and had their decision overturned on appeal. 1,300 claimants died whilst being placed in the category to ready themselves for work. 68 claimants died while their appeal against the assessment finding them fit to work was still ongoing.

As I said, these are just some of the changes made by the coalition government; I detailed them here, because they have such an impact on ill people like us. I got these figures from ‘100 biggest failures of David Cameron’s Tories, May 2010 to Present’ and I would urge you to read the full list which gives so many details on detrimental changes to every aspect of our society along with links to evidence of where that information was attained.

Going Forward

David Cameron and his Conservative party now has a majority win and we know, for a fact that things are going to get worse. They have promised to make £12bn of welfare cuts. If they go ahead and do that, many people, not just the ill, will be hit hard. Things have gotten so bad for us in the last 5yrs and we are only assured that they will get worse. But we cannot give up; we have to keep fighting because for many of us it is a matter of survival. The most heart-breaking tweets that I read on Friday and over the weekend were written by ME sufferers who actually feared for their lives; they were not sure they would be able to survive another 5yrs. I have to admit that I am one of the lucky ones as I am not dependent on ESA or any disability benefits. I am well enough to be able to work on my writing, but my earnings are meagre and I survive on the generosity of family and friends. Not everyone has that luxury. I’ve been on Incapacity Benefit when I was truly too ill to work at all. The first sign that my symptoms let up, I went back to work and I had a major relapse which has resulted in me being unable to go out and get a ‘proper job’. I know dozens of ME sufferers and not a single one of them would take a penny from the state unless they really had no other option. More worrying are the changes to the NHS. The medical attention we require is not optional.

What Can We Do?

As ME sufferers we know all too well how our illness is regarded. We fight just to have ME recognised as a legitimate illness with doctors, let alone with those responsible for authorising benefits. People with more recognisable illnesses than ours are facing discrimination, and it doesn’t help that we’re expected to fight when most of us have our hands full just getting through the daily acts of feeding, washing and clothing ourselves. But we have no choice, we cannot allow anymore persecution. There are things that even the most ill sufferers can do.

Get and Provide Support

One of the worst aspects of this illness is the fact that we all feel extremely isolated as we do spend so much time in our homes alone. There is support available online. I have connected with hundreds of other sufferers on Twitter alone. This is important because it shows us that we are not alone. Personally, the anger I feel on my own, turns to complete outrage when I see so many people suffering. This might sound like a bad thing, but that outrage drives me to want to make a change. It shows me that I am part of a community of people and that with so many of us, there is something we can do. On my bad days, I really need that sense of community and understanding and I talk about what I am feeling and going through in large part in order to let others know that I understand what they are going through. So get and provide that sense of community and support by interacting with others as much as you can with other sufferers.

Get Your Story Out There

The media is very quick to make a huge show of the very small minority of benefit cheats and in How The Sun and Daily Mail Lie About CFS Cure Claims I looked at specific examples of how CFS was falsely portrayed in the press. We have to make our voices heard. We have to show the way that we are affected by our illness and the persecution of the state. We have to put faces to the horrors being I know, I know, we’re all ill and struggling, some of us so much more than others. But there are lots of ways that we can put a face to the horror and it is extremely important that we do. In fact tomorrow I am going to be publishing a more detailed list of things we can do to get our stories out there and the different actions we can take no matter what level the severity of symptoms.

Get Involved

Most of us can’t march through the streets with placards; we’re just not well enough! But there are others way to protest and fight for the things we want and need. You can sign up to organisations like ‘38 Degrees’ who are fighting to make the changes that we need. I have been a member for a while now and they have made significant changes. One campaign that I am particularly interested in is the Save Our NHS Campaign. You can choose to just sign petitions online, you can make phone calls for them if you feel well enough to do that, or if you or are a family member are more able, you can take part in organised protest marches. They also have details of local groups in your area that will be fighting to save your local NHS services. The e-mails they send out detail what needs doing where and even if you’re just able to send an e-mail to your MP, or share a story or campaign on social media to help get more people involved, you’re helping, as their past campaigns have shown.

Ask For Help

If you’re facing problems applying for benefits there are organisations that can help. I have friends who have successfully applied for or appealed unfair decisions for ESA and DLA using the guides and advice from Benefits and Work. It is not a free service (I have not used them personally, I do not work for them nor do I get paid for mentioning them here) and costs around £20 for a year’s subscription, but they do have a 7 day money back guarantee, so you can check them out and see if they can help. They’re an independent organisation and funded only by the subscriptions from their members. In their own words: “This complete independence means that Benefits and Work is free to publish information that makes it deeply unpopular with the Department for Work and Pensions, multinationals with an interest in benefits – such as Atos Healthcare, Unum Provident and Capita – and even other advice providers whose dependence on state and corporate funding may have made them reluctant to tell the whole truth.”

You don’t need to use this organisation, ask around online for what you need – there will definitely be at least one ME sufferer somewhere who has been through what you are going through and that will be able to offer a suggestion or advice.

It’s Not Over…

Yes, the election results were an awful blow and many of us have been licking our wounds these past few days. It would have been nice to even have a glimmer of hope that things would change but at least we know the beast we have to fight. We will fight because we really have no choice as the alternative is to die alone, poor, cold, ill and hungry. The elections may be over, but the fight to survive continues. I am the first person to admit that with our health struggles, even blinking hurts some days. We’re ME sufferers and we fight and struggle every day; we now have to translate that into some kind of positive change and we definitely will.

Can you think of anything else we can do to fight for our rights? Let us know in the comments below. Tomorrow I have a special post planned as it is ME Awareness Day, where I will tell you how you can help in the easiest and least taxing ways.

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Is There Something Easier Than Writing?

Is there something easier than writing when feeling more ill than usual?

This is just going to be a quick and most likely short one today because my energy levels are really low. I woke up feeling like I had been hit by a truck. I should have had a bed day today, but I didn’t. Instead I started thinking that there has to be something easier that I can do on days like this than writing. After yesterday’s post I was thinking about ill people who can’t even get up the energy to read a post and that combined with my own fatigue and sick feeling and I thought “I know, I should vlog on days like this!”

Yeah, well you know what I discovered? Vlogging is even more time, energy and health consuming than writing a post. First you need an idea of what you want to talk about, and I found that I was too tired to even remember what I wanted to say, so I had to make a few notes to keep me on track when I was recording. Then you have to edit the bloody thing. So no, vlogging is not easier than writing. I think my videos will have to wait. I realise that on those days where I have to wonder if there is something easier than writing, I need to take the day off and just rest.

Before I go I just want to share a piece of music with you! It’s what I have playing while I write this – I often find that an uplifting or energetic song will give me a nudge when I’m really feeling too knackered to get the job done. This did it for me today! I found it while I was looking for some royalty free music for any future videos I decide to make. It sounds like something else, but I can’t figure out what. Any ideas? Ciao for now!

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Daily ME/CFS Ghost

I’ve decided that I’m going to try and post every single day on The ME/CFS Ghost. Now, those of you that also have a chronic illness will fully realise that some days it’s all you can do to turn over in bed, and I know that too. The thing is I started this site two years ago and I’ve really not known what to do with it. Do I try to write informational pieces about ME? Well, there are plenty of websites that can do a much better and thorough job of explaining symptoms than I can, so that’s not really the direction I want to go in. Do I try to make people feel better about being ill? I think that is totally unrealistic as a goal as well as being rather high-minded. We’re ill people and how many times have we wanted to deck people that have tried to jolly us into feeling better?! So, I’ve been writing the odd realistic piece about my thoughts and experiences, but as singular pieces without any kind of context, they can come across as totally negative and bleak.

Today I was looking through the site and reading through older posts and I realised that the site was meant to be about my life with ME. I remember when I first got ill, not only was it an alien concept to me that anyone else in the world could be feeling as I did, but when I realised there were others out there, I wanted to know how they lived day to day. This is meant to be my life with ME, so let me try to show you a piece of that.

So, let me stop here, and get started on the first post! I swear, I’m so used to making empty promises and goals, but I really hope this one sticks!

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Ill But Still Trying for ME Awareness

Karina Hansen has been held prisoner since February 2013.

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. 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 had considered taking a break from writing about ME, but I know that it is too important to stop entirely, so I am going to continue as much as I can. I just hope I have the energy to visit my peaceful, calm places to recharge.

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. Here is that article:

Help Save Karina Hansen

I’m going to ask, no, beg that you read this article in its entirety. A young woman’s life depends on it and the health of so many others too, so please just spare a few minutes. I’m going to try and cram as much information into as few words as possible. Karina Hansen, the 24 year old pictured here, is being held in a hospital against her will and the will of her family. ME is a neuro-immune illness and you can see links below to articles describing the symptoms; Karina suffers from severe ME and has been bedbound since 2009.

In February with the help of police and social workers, Karina was forcibly removed from her home by doctors. She called her family members for help, but they were not allowed to help. Imagine that Karina is your daughter or your sister and people break into your home and remove her as she calls for help. No-one tells you where she is being taken, or why, and you are not given any paperwork or a warrant. All you receive is a phone call telling you that Karina is at Hammel Neurocenter and that someone will call daily with an update but that no-one can see her for 14 days. It has now been over 3 months despite her family going to the center to see her, her parents were not allowed to visit. Her sister was permitted a short supervised visit, and she reported that Karina was non-responsive and did not appear to recognise her. Karina’s sister is a nurse and one of her carers and in her opinion Karina’s health has deteriorated significantly since she has been taken.

There is a much longer, more detailed account of this story and you can read it here: here but the fact is that this has not happened in some out of the way country, but right here in Europe, in Denmark. Even though the World Health Organisation classifies ME as a real biological illness, the Danish medical establishment ignore this and work on the basis that ME is a functional disorder, which basically means if you are in Denmark and have ME it is all in your head. The center that Karina has been taken to has never treated a person with severe ME and prescribes Graded Exercise Therapy and Cognitive Behaviour Therapy as a treatment plan. Quite frankly these could kill Karina Hansen, as happened in the UK with Sophia Mirza.

This girl’s parents are begging for help and ME organisations around the world are trying to bring attention to Karina’s plight. Her parents have tried to get legal guardianship of their daughter, but this is being ignored and they have been in contact with a member of the Danish parliament, but so far they have received no help. If you are a journalist, don’t take my work for it or the words of the other campaigners check this situation out for yourself. The situation is becoming increasingly dire every day because even though they receive phone call updates from the staff where Karina is being held the reports often conflict so no-one knows what state she is really in.

There is an online petition and a letter writing campaign asking the Danish government to stop holding Karina a prisoner and to ensure the medical staff in that country receive proper training on how to treat ME sufferers. Even if you cannot write a letter, I would really appreciate if you could sign the online petition. It can be found here.

I know I have left out so much information, but I don’t want to put people off by making this too long. If you have any questions please ask me below and I will try to answer them.

Can you believe this is happening in modern Europe?

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Interview with Maria Mann Author of ‘Verity Red’s Diary’

Maria Mann: Writer, M.E. Survivor, Hero, Inspiration and Wonder Witch

Writer and ME Sufferer Maria Mann InterviewMaria Mann is a ME sufferer and even though she has this awful and often severely debilitating illness, she is the author of the popular Verity Red’s Diary: A Story of Surviving M.E. and Love & Best Witches. One would expect the books to be extremely depressing, given the daily plight of people afflicted with this illness, but the stories are wonderful. Yes, they show the awful reality of living with this chronic illness but with humour, magic, fantasy and light, which make them a great read for both people suffering from a chronic illness and for those that are not.

I was extremely lucky to have been granted an interview with Maria Mann who is something of an idol to me. If you would like to read more about why I am such a fan, read Why ‘Verity Red’s Diary’ is a Must-Read Book.

What follows are the words of Maria Mann in response to my questions and some of her beautiful artwork.

Did you always know you wanted to write?

Maria Mann Artwork 01“My first memory of enjoying writing is when I was about seven years old. I wrote short little stories about witches living in the woods, and illustrated them. I think I must have been inspired by the first film I ever saw at the cinema; ‘Snow White and the Seven Dwarves’. We didn’t have a TV.

When I was 13 I started writing and illustrating poetry for my school’s magazine. I thought I’d like to write a book one day, but fancied being a songwriter, poet or artist. At the age of 16 I decided to go to Art College and get my diploma in illustration and graphic design. I thought about writing a book and illustrating it, but nothing inspired me at the time.

Soon after leaving college I got married and worked as a freelance artist for a while. Then I found a job in a drawing office, working for a national energy supplier. In my spare time I wrote and performed my songs, or played percussion with bands. I almost got a recording contract with an Indie label, but it didn’t work out.

I always felt depressed working in an office and used to daydream about writing a book about how awful office life can be. Thirteen years later I became ill with ME and had to leave my job. After a year of lying in bed and staring at the ceiling, I wanted to help others with my illness; so I decided to write a book, describing what it’s like, day after day, to have ME. It had to be a diary.”

Can you tell us a little about your health?

“Well, I’ve had ME for 19 years. I was severely ill and bedridden for the first 4, then I started seeing a wonderful healer, Seka Nikolic, who magically helped me to be able to sit upright again. Slowly over the years, the pain of fatigue in my muscles lessened, though I easily went downhill if I overdid it. I could only work a little on my writing every day and all the illustrations in my book gave me migraines. I recall lying on the floor dictating what I’d written to my partner, (on days that I could talk) because I couldn’t type. Although this was very tiring, it was wonderful to have something to do.”

Maria Mann Artwork 02

How are you able to retain a sense of humour even with the ME related health problems? As one of the most striking elements of your books is the humour contained within the stories.

“I’m not sure! I think humour has always been my way of coping with life. Before I became ill, I would write and perform funny songs. I think I’m like Victoria Wood, because if I didn’t write humour, I would sink into deep depression. I guess writing must be my therapy, if I didn’t write I would constantly dwell on the sad things in my past. Oh, and I love to make people laugh, because laughter is so healing.”

What inspired you to write ‘Verity Red’s Diary’ & did you realise what an impact it would have? Much of it must be autobiographical, but as a fellow sufferer, I know it is not always easy to write down ones experiences with ME.

Maria Mann Artwork 03“I’m delighted and amazed my book has become a companion and comfort for people with chronic illness. I’ve received so many wonderful e-mails of thanks from people all over the UK, America and Australia, I still find it hard to believe. I reply to everyone; I love them all. And yes, much of my first book is autobiographical, and no way did I realise that it would make any impact. There were no humourous books about coping with chronic illness (that I knew of) and I was so unsure, feeling that I may be barking up the wrong tree. I worried constantly. Also the book turned out bigger, heavier and costing more than I had planned. I honestly thought no-one would buy it.

You ask what inspired me. Well, I think I may have answered that after your first question. Just lying in bed day after day, knowing there were thousands of others just like me, not being believed or understood, made me want to do something to help. Scientists were not taking ME seriously, and I thought, well, I’m no scientist but I can write, and I’ll have a go at a book.”

How long did it take you to write ‘Verity Red’s Diary’?

“It took 8 years. I did what I call a J.K.Rowling. I spent 2 years writing the first draft, then I put it away in a cupboard for 3 years because I didn’t feel anyone would want to read it; just like Ms Rowling. I was clearing out my cupboards and about to throw the manuscript away, but showed it to my partner’s brother. He’s a writerly sort, and thought it was worth another re-write. I spent the next 3 years doing 2 re-writes and drawing the illustrations, when I felt well enough. Though to be perfectly honest I never felt really well enough, but it was something I just had to do.”

Maria Mann Artwork 04

Did it take you long to find a publisher for ‘Verity Red’s Diary’?

Maria Mann Artwork 05“I spent 2 years contacting various publishers. They all said the same thing, ‘We don’t publish medical books’. I tried to find an agent. One chap said my website (with extracts from the book) and the book were rubbish, and I shouldn’t have written a funny book about a serious illness, and no-one would take me seriously. That was encouraging wasn’t it?!

I eventually decided to pay to have the book published with all my savings. The process took 2 years because, although the editor said it was the best manuscript he’d ever seen, when he left his job and a young chap converted it onto a computer, he made so many mistakes, I had to correct the whole book. I decided to make the most of this by adding new ideas! Then there were problems with their computers and again I had to check through the whole book, correcting mistakes on most pages. Again, I made the most of this by adding the odd new bit. When eventually it was published, I was really unhappy that many of the drawings were so small. I wanted them full page, so the reader could rest his or her eyes. After this followed, how can I say this, not very complimentary reviews in this country. Luckily a review in America was wonderful, they understood what I was trying to do. Unfortunately, when it came out, my publisher hadn’t got it together to make the book available in the country. At this point I wanted to give up, I was ill with exhaustion and disappointment.

A few months later I received a lovely e-mail of thanks from a woman who’d suffered ME for 4 years, and wonderful reader’s reviews started to appear on the Amazon books website. I continued to advertise my book in ME magazines, and eventually I received more e-mails of thanks. I’ve sold over 2000 books now, and every penny has gone into ME research, because I still put costly adverts into magazines. Although I haven’t made any money for myself, every single letter, e-mail and customer review on Amazon makes me feel like a millionaire.”

Your latest book ‘Love & Best Witches’ is a magical and fantastical tale. What inspired you to write it?

“My beautiful niece Louise was my inspiration, she was nine years old at the time. She would visit me when I was well enough and we’d dress up as witches to do healing spells with herbs and candles. It was great fun! Mostly Louise would write to me though.

When I told her about my first book, she was disappointed that it was a book for grown-ups, so I said I’d write a book for her about our witchy spell making. The following Halloween she wrote ‘Love and Best Witches’ at the end of her letter, and I knew this had to be the title for my book.

I’ve been interested in healing witchcraft for many years, so I had a few books for reference. The book was going to be very short, about fifty pages, with a few sketches, but it sort of magically grew. After the experience with my first book, I decided I was capable of editing, proof reading, and putting the illustrations into the text myself. Epic Press sorted out the printing and distribution, without any problems at all – this was magical too!”

Which writers are your inspirations?

“There are so many I’m not sure where to begin. My first loves were C.S. Lewis, A.A. Milne, Charles Dickens, John Wyndam and Douglas Adams. In my twenties I discovered wonderful funny women writers like Sue Townsend, Jilly Cooper, Isobel Wolff and Helen Fielding. Then in my thirties I fell in love with Terry Pratchett. His books, not the man! Though I met him once at a book signing and he was very sweet. He makes me laugh more than any other writer (apart from Victoria Wood’s songs) his Discworld book series are such amazing fantasy, especially the ones with lots of witches and wizards. His funny witches Granny Weatherwax, Nanny Ogg, and Magrat Garlic, in the ‘Wyrd Sisters’ and ‘Witches Abroad’ were an inspiration for ‘Love & Best Witches’.”

Are you working on any new projects that we should look out for?

Maria Mann Artwork 06“Oh yes! I’ve written a sequel to ‘Verity Red’s Diary’ called ‘Verity Writes Again’. It’s another diary, but just the last four months of the year, because Verity has been busy writing ‘Love and Best Witches’. I thought, just four months would make it another small book, but like my last book, it has magically grown. It won’t be as big and heavy as the first though.

I’ve never suffered from writer’s block, I get what I call writer’s diary-ah. I constantly get ideas, or I hear or see something funny and think “oh, I must put that in chapter 1 or chapter 2.” It’s a bit like eating crisps or chips, I find it hard to stop!”

Have you any idea when the book will be out? Have you found a publisher?

“My partner and I have decided to set up our own publishing company. I’ve got a great witchy name to register under, but that’s a secret for now. I’m in the process of editing and proof reading the first four chapters, and I’ve started work on the cover. I’ve completed 150 illustrations, and really looking forward to putting them into the text. That’s the best part, when all the graft is done. Though I’ve got a ‘thing’ about, how can I say it, the drawing being on the right page, to match the text. This can be difficult, so I’ll probably write a new bit on some pages, like I did with ‘Love and Best Witches’, so it all fits perfectly.

My partner has his own musical projects to work on, so he only has limited time at the weekends to do the ‘computer stuff’ for me. But hopefully the book will be completed in time for Xmas 2014 reviews.”

When you are not writing or drawing, do you have any hobbies or interests, health allowing, of course?

Maria Mann Artwork 07“Well, I’ve already mentioned witchcraft. I love to keep lots of cats, and curl up with them listening to audio books – mostly Terry Pratchett and J.K. Rowling. I used to write songs and play percussion (which I think I’ve already mentioned as well) but I’m too tired to perform these days; though when my partner is composing, I do like to shake the gravy granules if I’m in the kitchen.

Recently he liked what I was playing to a Cuban rhythm, so he called the tune ‘Gravy Granules’! I’m going to record my playing for the track (just a few bars and he’ll repeat it). I can’t really say I’m recording again, but it’s something!”

If you could say anything to your fans and other people suffering from a chronic illness, what would you say?

Fireworks-in-window“Well, the first words that pop into my head are “I LOVE YOU”. I’ve always felt this great love for everyone in the world who has ME and any chronic illness, since I became ill. Like Verity in my first book (in the final chapter, December) I want to stand on the top of the mountain and scream, “I love you and I believe you” to everyone who has ME; they hear me and have a happy Christmas.

To my fans I’d like to say; thank you, thank you, thank you, to everyone who has sent me e-mails and letters of gratitude – so much appreciated! The first e-mail I received really did feel like the best day of my life. I reply to every e-mail and letter, but I can’t keep in touch with everyone, I’d never get another book completed!

I also like to say, try to never give up hope. Though after years of illness, I know how terribly hard it can be to do this. And try not to let what I call, insensitive-comment-type-people, get you down. Their ignorance is THEIR problem. There are so many people who have made a reasonable recovery from ME after 5, 10, or even 20 years. We’re all different. I think the support you get from your family, friends and doctor helps considerably. If you’re like me and didn’t have this in your early years, hopefully like me you’ll gain support from charities like Action for ME or the ME Association. If you can find friends on the internet who have ME, even better!

There are so many people who have gained a huge positive, and ended up doing their heart’s desire (often creative work) after years of coping with ME. But even if you don’t do this, I’ve read that lots of people have made the best friends they’ve ever had, since contacting others with ME. I just hope that as many of you as possible are as fortunate as me, and have been able to do both.”

Love and best witches, Maria Mann


Read why I believe ‘Verity Red’s Diary’ is a Must-Read Book

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Google AdSense FAIL!

Yesterday I was browsing through my blog, making sure all was fine when I saw an advert displayed at the bottom of my last post which was a total Google AdSense FAIL! Here’s the ad:

What an awful place to put a Funeral Planner Ad

Yep, there’s a honking great advert for a Funeral Planner. You may think I am silly, but it really took me by surprise. In one sense, it’s quite ironic because ME sufferers are always fighting for greater understanding and recognition of this illness, which can be fatal, although in the majority of cases is not. I know we complain that no-one takes ME seriously but that’s taking it a little too far, don’t you think? The advert seemed to be saying “You’ve got ME? Here, organise your funeral!”

I really felt like my ME/CFS blog was absolutely the wrong place for a Funeral Planner’s advert, but then I wondered, where would the right place be? Seriously, it is true that we are all going to die, but nobody likes to think about it. So, if you owned a Funeral home, would you advertise your funeral planning services? After all, that too is a business like any other. If you were to advertise, where would you put the advert? Which types of websites would you aim for? Do you think targeting (not that I’m saying this was specifically targeted) a blog about a specific illness is a little too on the nose, or just good business sense?

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A Positive ME Sufferer or a Negative One

A Positive ME Sufferer or a Negative One

I’ve been asking myself a lot recently if I’m a positive ME 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, but now it is easier and helps, especially when things aren’t so good. Recently things haven’t been so good and that is what brings me back to wondering if I’m a positive ME sufferer or negative one.

Ideally, I’d love to think of myself as writing hopeful posts which have a positive effect on readers, but the truth is my experiences are not always positive and I’m not always emotionally or mentally in a place to be able to put that kind of a spin on them. Sometimes – more so recently – it seems all I have to write about is the darker side of being an ME sufferer. So, I find myself going to and fro between wondering how awful it is to dwell on the bad so much and thinking that negative or positive, it is an honest account of my experiences.

The truth of the matter is that there is no such thing as a positive or negative ME sufferer, not really, we just have good days and bad days. Also, being ill and spending too much time alone drives us to think too much and to question aspects of our lives.

Like I’m doing now.

Image Credit and Terms of Use

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