Category Archives: Living with an Illness

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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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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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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Have You Been Cruel to An Ill Person?

Have You Been Cruel to An Ill Person?

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

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

I’ll give you an example; say you were standing on a crowded train and you saw a heavily pregnant woman get on the train, but no-one got up to give that woman a seat. So, feeling outraged you quite forcefully asked the nearest seated person if they could get up and allow the pregnant woman to sit. Seems like the correct thing to do, right? After all you are helping the pregnant woman. Well, that person seated was me. I didn’t even notice the pregnant woman who got on, because I was riddled with pain that was causing severe nausea. I had returned to work after seven years and while I was at work I had experienced a total relapse. I actually got up for the pregnant lady, but only because I was so confused, I didn’t even know what I was doing. Luckily I did not have to stand for too long, but the fact that I did caused me extra pain in my legs, back and arms for the rest of the week. But what if I had said “No”? If you asked someone who was well-dressed, healthy looking, with immaculate make-up, who was obviously coming back from a corporate job to give up their seat for an elderly or pregnant person and they said “Sorry I’m ill” and even gave you the name of an illness that you had not heard of, would you believe them?

It’s easy to say “Who cares what others think” or “You should’ve just stayed seated” but I know so many people who have problems dealing with others in social settings as years of illness have broken down their ability to even communicate effectively. Also, especially with an illness like ME where stressful situations can cause the adrenal gland to go into overdrive causing further and more serious symptoms, sufferers are hard-wired to take the path of least resistance. I have a friend who is forced to take a walking stick with her when she travels to and from work just to avoid the kinds of situations I described.

Before we all start wallowing in guilt over all the people we may have inadvertently hurt, it is worth remembering that it is not our fault. We subconsciously take others at face value and make up our minds about them within seconds. Unless we see a physical sign of disability or illness, we are not going to consider it. Also, we have in mind that sick people look sick; they’re pale and thin, or use a walking stick or wheelchair, right? If they aren’t or don’t, how ill can they really be?

The most we can do is to not take people at face value and understand that not all illnesses are visible. I once saw a young woman vomiting outside the train station exit. It was rush hour, but people were just walking past her. It was a week or two before Christmas, a time when many people are out at parties and social gatherings and I guess people just assumed that she had been drinking too much alcohol. I went to her and asked her if she needed any help, and I waited with her until she was able to phone someone to come and get her. She had not been drinking, and when her husband arrived, he said he was taking her straight to the hospital. She may have had appendicitis, or food poisoning or anything, but no-one helped her.

I think us ill people are to blame too. We don’t talk about our illness and the way it affects us enough. It took me over ten years to be able to talk about my experiences because, like most people, I don’t want to be ill. I don’t want to be ‘negative’, or to admit that I’m ill, which is often perceived as a weakness. I don’t want to have to talk about symptoms or how much my life sucks. The sad fact is that the only time society wants to hear about illness is when it is a positive story about how someone beat their illness and carried on as usual. Unfortunately, for most ill people, life is not like that. So it is hard, but we have to try and educate people.

I’m grateful for all comments on this topic as it is not an easy one for me to write about.

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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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Life As An ME Sufferer

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

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

On 26th August 2001 my life changed forever. The next few days I was ill with what I assumed was food poisoning, even though I was the only one that was effected out of all the diners. The next few months I did not seem able to shake the extreme fatigue and pain. It felt like I had really bad flu all the time and my muscles ached and my joints were swollen and inflamed. I had never been ill and I did not believe in slowing down for illness. I had always believed in soldiering on; mind over matter and all that. It was six months before I saw a doctor and by then I could barely grasp anything, my arms were so weak.

I still continued to work until I was physically unable to and in 2003 I left my job. I planned to take a few months out to rest; little did I realise that it would be 7 years before I would be well enough to even consider working again. In 2005, after 3 years of tests, I was finally diagnosed with ME. It was good to finally have a name for the illness, but once I learned more about the illness, it was quite disheartening. Still, I tried any alternative treatment that I could, unable to accept that I was ill and I became more and more ill.

I spent 7 years housebound and even bedbound at times. I lost all my friends, my life, and even myself. But slowly, I found a way. I found a new me and I met some great new friends. I got better and I met someone and I got a job again. Of course, then I went and made the mistake of thinking I had ME, rather than remembering that I still have ME and I pushed my health too far and became ill again, but it is OK. I am working on my health and I am still working with others to raise awareness of it. ME is ME but it is not me.

*: This post was originally published on Bubblews in April 2013.

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

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

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

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

Today my sister contacted me to tell me about a book she was reading that had a chapter on Pain, Chronic Fatigue and ME in it. I know my sister loves me and she genuinely believes that what she is suggesting is helpful to me and that it will help me to get better. However, from previous experience, I know that my sister is very much into mind over matter and we choose illness and pain etc. I used to be exactly the same as her, if not worse, so I can’t blame her. But when I read through the chapter she suggested, I felt slap after slap. There were stories and testimonies from people who managed to cure or even alleviate their suffering from ME/CFS by visualisation and positive thinking. The implied message here is that people with ME or any other illness are ill because we are just not positive enough.

Then this morning I saw Liz Crow and Bedding Out and it made me feel so much better. It reminded me of my initial belief; the importance of getting our story out there. The Positivity Police no doubt see any kind of spotlight on illness as negativity and the reason for our continued illness. In a world where you are being advised to visualise beauty and light instead of saying “Hey, I’m in pain” or “This is how I spend time in bed, recovering” that which is our reality is seen as nothing but negativity.

Right now I may be feeling like I have taken a kick in the stomach, but I won’t stop. I will keep writing and our stories will be heard.

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

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

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

Well, I had a surprisingly good day; and best of all, I got to do something normal with my other half! It was just as well the day got me on such a high because by that night, I was already crippled with pain and walking has been a problem for me all week.

I’ve had this numb sensation all week, because I’ve been so ill and fatigued, I’ve sort of been in my own little bubble and I haven’t been stressed about anything. I have to say that is one of the only good things about feeling so ill; the numbness.

Then today the proverbial hit the fan! I was feeling so crappy all morning that I was barely conscious until early afternoon. It seemed silly to get so happy about going to the match when I couldn’t even stay awake or upright for a conversation or lunch with my partner. Still, we spent some time together in the afternoon and I was just coming out of the slump when I received a text from my sister who suffers from BPD (Borderline Personality Disorder). I won’t go into the illness too much here, but suffice to say that she has some extremely bad episodes where she can lash out at people or feel hurt and upset because of some slight she feels you have inflicted. Things had been going really well between us recently and I was feeling happier about our relationship. But today she messaged me because she feels I am trying to cut her out of my life, that I back off from her and that I’ve been making passive aggressive comments. It was shocking and upsetting. The things is, I know it is not her fault and that it is her illness, but she is unable to see that it is my illness that makes me the way I am too. I have been so ill the last few months that I am very detached and I don’t even get stressed out over anything anymore because I just can’t do it. But this comes across as me being fake or insincere. I know there’s nothing that can be done and I’m not angry, but unknowingly, she picked the worst day for her emotional drive by.

I can feel the stress of the day clawing at me from the inside. My stomach feels tight and my body feels tense. I tried some breathing exercises to release it and that helped a little. My partner keeps asking me what is wrong as he has sensed the shift in my mood, but I don’t really want to spend our whole evening discussing my sister. I feel better after just writing it out here and perhaps now I can relax a little get into bed and maybe even concentrate enough to watch a movie.

I hope so anyway.

At least I don’t regret the football match now.

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