The ME/CFS Ghost » Blog Archives

Author Archives: Jay

About Jay

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

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.

Image Credit and Terms of Use

Published by:

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?

Published by:

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.

Original Image Credit and Terms of Use

Published by:

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.

Published by:

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.

Published by:

That Awful Sunday Feeling

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

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

Today is Monday and the week has started. Even though I do not have a job I need to go to, I do have my work to do and my routine to keep to. I woke up feeling fine and have been getting on with what needs to be done and as the week progresses towards the weekend, I’ll feel more and more hopeful and happy, until I crash again on Sunday. I never get the Monday blues, but Sunday, that is a different story.

Why are Sundays so awful? What is it that makes them so devastating? I’m not just talking about feeling glum or sad, but I feel such devastating disappointment and misery; the week before seems like a waste of time and energy and I wonder why I even bothered, and the week ahead seems devoid of any hope or promise. Is it normal to have a depression that lasts just one day a week? The worst part is that I didn’t even see the pattern until my partner commented on it. Poor guy, he must dread Sundays too now all because of me. Since he mentioned it to me a few weeks ago I have been trying to understand what happens with me on Sundays.

I think that for most of the time I can just keep trying and pushing forward with this illness, but for whatever reason, on Sundays I let all the misery in before starting up the fight again on Monday. I can’t decide if I am insane or a genius. Anyway, what I’m going to plan to do every Sunday from now on is something to distract myself; plan something pleasant for each Sunday to try and make myself like Sundays. I don’t know if it will work, but I sure as heck am going to try!

I’m almost scared to ask, but does anyone have any ideas about this awful Sunday feeling or by any chance, does anyone else feel the same?

Image Credit and Terms of Use

Published by:

Fevre Dream and Sleepless Nights with a Touch of Reverse SAD

Fevre Dream ME

Fevre Dream

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

As if all that wasn’t enough, I’ve barely been sleeping. I think that is to do with the fact that the days are getting longer and spring is almost here. It may sound strange, but I have reverse SAD so my favourite half of the year has just ended. In an attempt to stop myself from totally sinking into depression, I decided to try and lose myself in fiction. I don’t get the chance to read for fun these days; when I do have some free time and energy to read, I tend to read mostly non-fiction books that are guides or manuals.

So far I’ve managed to complete one book Fevre Dream by George R. R. Martin. I love vampire stories, but do not like historical fiction, however I enjoyed this book so much that it inspired me to write a book review, and that helped me to get back into writing again. But after I had written it, it got me wondering, what do other ME sufferers do to prevent spiraling into the ever threatening darkness that accompanies this illness? I was lucky this time, I was able to read, but there were periods in my past where I couldn’t read because the resulting headaches and eye pain was too much even for an avid reader like me. Then I would listen to audio books or watch DVDs of my favourite shows or movies.

If you’re an ME/CFS sufferer, is there something that you do to keep the worst of your illness pulling you down? Are there people that help you? Are there books and movies that bring comfort and distraction or is there something else that you do? I’d really appreciate the extra ideas as I have a feeling I may need to branch out into a few other areas if my health continues the way it is.

Published by:

ME/CFS is NOT Demonic Possession

ME/CFS is NOT Demonic Possession ME

ME/CFS is NOT Demonic Possession

It seems completely unnecessary to have to say “ME/CFS is NOT Demonic Possession” but apparently some people still need to be reminded of this. I haven’t posted for over a week because as much as I loved visiting my family last week, it really took it out of me. I managed to get some basic work done this week, but I’ve been barely functioning and then along came the monthly monster and that did not help at all. But what has spurred me to write today is an e-mail I received from someone. The message is extremely ignorant, bigoted and the sheer arrogance of the man to actually send it to me is astounding, but still I am thankful as it has fired me up, after being a numb blob for most of the week.

I regularly write articles on other sites and I write about a variety of topics including recipes, horror movies, book reviews, product reviews, tarot and divination and of course living with a chronic illness. Every now and then I get someone sending me a message telling me why I have ME/CFS or a chronic illness. These are not from people who are doctors, fellow sufferers or even any kind of therapists. These are people that have seen I have a chronic illness and then they proceed to tell me how one or the other interests I have is causing my illness.

Here are some examples. I wrote an article for Halloween called ‘Ghostly Horror Movies Based On True Events’ which was just a collection of horror movies where the makers have based their movies on actual events. It does not claim that the movies are real or even says that the ‘true events’ have any real validity. Yet, somehow this article has lead people to send me messages telling me about how my illness is caused by evil spirits that I have attracted by watching and writing about horror movies. I really wouldn’t care if these people just left comments on my articles, as controversy is actually good for discussion and I encourage people to tell me what they think. These people though, seek out a way to contact me privately and send me e-mails telling me their wacko theories.

Another example is the message I was sent today, which unfortunately is not the only message of its kind that I have received. It stated that CFS is “correlated with demonic activity” and this person then sent me links to an article and some youtube videos about how reading tarot cards leaves you open to demonic possession. I have to say that the guy that e-mailed me today was very sincere and even said it was sent with the best of intention.

Often, these people have not read or looked at my articles, but have just seen the titles and assume things about me. Just because I write about a topic, it does not mean that I advocate or believe in the subject. Even if I totally ignore the validity of what they believe, why do they feel the need to warn me?

I find it extremely insulting that anyone would contact someone and state that their illness is the result of some superstitious and unfounded idea. I also find that people do it to me more because I have ME/CFS; I’m sure if I had any other ‘real’ (for them) illness, they’d be less likely to do it.

Unbelievably, as I have been typing this post, I received another message from someone on an article titled ‘How to Explain Your Chronic Illness to Friends and Family’ which states that there is no such thing as chronic illness and the person who wrote it claims to have had a “close call” with the symptoms and issues I write about. Not surprisingly this person is the owner of an empath website, so I’m sure he or she believes I am just an empath that is not controlling it properly.

This second kind of comment is actually more worrying than the first because its author does not believe there is any kind of illness at all, and to write about it or acknowledge it is seen as negative, and to give in to illness. I don’t agree with that at all and it is very similar to the awful ‘ill-thinking’ rubbish people who believe ME/CFS is psychosomatic come out with. The former types of comments remind me of those times when people suffering from schizophrenia would be accused of demonic possession. People stopped believing that, but it seems ME/CFS sufferers are still fair game when it comes to these types of ideas. The fact is that ME/CFS sufferers come from all walks of life and are of all ages. We have different beliefs, different lifestyles and some of us only have this awful illness in common. So even if tarot has opened me up to demonic possession, how do they explain the ME/CFS sufferer who has been ill since childhood and has never had the chance to do anything to allow demons in?

It is ridiculous and their reasoning falls apart with very little probing, but the arrogance of these people to contact ill people with their drivel is shocking. It is insulting and an awful thing to say to someone, no matter how good people believe their intentions to be. Do you think I’m over-reacting or do these people have a point?

Original Image Credit and Terms of Use

Published by:

The Issue of Weight and ME/CFS

The Issue of Weight and ME/CFS ME

The Issue of Weight and ME/CFS

I’m having an awful day after sleeping very little. I woke up several times because I developed a headache during the night. (How the hell does one do that while asleep?!!!) I woke up with such a painful thigh and hip that it took me a while to get up and moving this morning. So I’m feeling down and not really able to think much and get any writing done. But it seems my mental paralysis does not cover obsessing about my weight today.

I’ve never been a skinny girl and before I became ill, I didn’t even know how much I weighed. I was very comfortable in my body; I used to workout when I wanted to and eat what I wanted to. I was healthy and happy and I had never been on a diet in my life. Then I became ill and I piled on the pounds and that was when my weight became an issue. If I loved to eat and put on weight because of that I wouldn’t have cared; if my weight had changed because of any single thing that I had done, I wouldn’t have cared. But if anything I was eating less and in the first six months of being ill I had stomach bugs and flu symptoms almost continuously. My ballooning body was just another example of how my body was becoming alien to me.

As I didn’t know my weight before I became ill, I’m guessing I put on five or six stones, most of that in the first few years. It was actually more insulting to be so fat because ill people are usually frail and lose weight, so it seemed like just another reason for people to not believe I was ill. It seemed so unfair; if I was going to be ill, I could have at least had the added perk of losing weight!

But I didn’t constantly worry about my weight; when you have ME/CFS there are plenty of things to think and feel. It’s just on days like to day, the weight seems like an added insult.

When I began to feel better four years ago, the weight dropped off just as quickly. I lost 50lbs without exercising or dieting, or even increasing my activity. When I started being able to leave the house and did increase my activity levels, I lost weight even faster. I lost six and a half stones in one year. Of course much of that has been creeping back now that I’m ill again.

It is horrible and most of the time I try not to think of it as there’s not much I can do. But it does hurt. It seems and shallow and stupid, but my weight bothers me. My body feels alien, like it’s not my own. Plus I met my partner when I was going through a healthy phase; now he’s stuck with an ill fat woman. He never says anything and is so sweet, and normally I am grateful for that, but on days like today I wonder how much more he will take. It doesn’t help when my own father stated clearly that I was ill because I was fat, not fat because I was ill.

As with most ME/CFS worries, I can only hope that tomorrow is a better day.

Original Image Credit and Terms of Use

Published by:

How Chronic Illness Makes Us More Positive and Not Negative

How Chronic Illness Makes Us More Positive and Not NegativeAs hard as it is living with ME, the truth is that chronic illness makes us more positive and not negative. I’ve just finished writing a post on my other website about How to Stay Up in a World that is Spiralling Down. In it I outline my tips and advice on how to stay positive even when the world around us is increasingly negative. The fact is that everything I outline in that post has been learned from having ME.

As ME/CFS sufferers, we have more than our fair share of hardship and stress. Our lives are tough and yet we live. No matter how limited our lives may seem, we endure them and in most instances we do so with a smile. We live lives of pain and fatigue, we lose friends and social lives, some of us live severely restricted lives stuck in our homes or even beds, we lose financial security as our ability to work is affected and while all this and so much more is happening to us, we often receive little or no support from the medical world and even from friends and family. But the fact is that stress exacerbates our symptoms and just makes us so much more ill. Yet, we do it.

Some of the best friends I have are ME/CFS sufferers. They make me laugh, and lift me up no matter how bad things get. Even when those with a chronic illness have faced years of neglect and even abuse, they still hope and try every day, never giving up and fighting in any way they can.

There is this ridiculous notion that being positive means slapping on a fake smile and pretending you feel great when you feel anything but. The truth is that any hopeful action, any act to continue is a sign of immense strength and positivity, whether it is done with a smile or with tears.

So I have a message for every ME/CFS sufferer out there who can still smile and be kind, who gets out of bed, or even attempts to sit up or open his or her eyes. Yes, to you fellow sufferer, who fights for this illness to be recognised, who lends an ear to a friend, to you who writes about your experiences in a blog, or posts a photo expressing your existence I have something to say. Also for you, who is trying to raise a family, or raising funds for charity, I want to say this: every ME/CFS sufferer who struggles and dares to hope that tomorrow will be better than today, know that you are an example to the rest of the world and the simplistic terms of positive and negative can never sum up the life that you live!

Published by: