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About Jay

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

Ill or Not, We Are All Misunderstood

Ill or Not, We Are All Misunderstood

Last week I wrote about The Fault in Our Stars but the post was more a rant about how misunderstood people with illness are, not to mention how much we underestimate the intelligence of teenagers. Well, it turns out that I have more to say about the being ill part (shocking, I know). I’ve been thinking about how people with illnesses like ME strive so hard to make it understood that they have a real illness, and yet even when people do grasp that truth, we’re still totally misunderstood.

If you’re an ME sufferer, have you ever had someone ask you about your illness or what you do all day, only for that person to respond with “I would die if I had to live like that”. Yeah, I know, it sounds like an unbelievably inconsiderate thing to say, but it is amazing how many times I have had that response from people, and I’m not the only one.

When I first became ill, I was very angry. Why did people not understand? But the truth is that people cannot understand, and over a decade later, I’m glad they can’t as I wouldn’t wish this hell on anyone. Just about everyone is limited by their own preconceived notions about a given situation. We live in the twenty-first century, and there is a lot of faith in medicines and doctors in general. I can understand that. If someone has not spent vast amounts of time in doctor’s surgeries and hospitals, one can be forgiven for thinking that in this modern era there is a cure or treatment for everything and all illnesses are understood and treated well. So when an ME sufferer shows up with this crazy and mostly invisible illness it can be difficult to understand. I didn’t understand it myself when I first became ill, and I was convinced if I just got a diagnosis, I’d be given a prescription and all would be well again. Oh, how naïve I was.

Then when it’s established that you do actually have an illness, those closest to you start to see how drastically your life has changed. It’s traumatic enough when you’re ill and have to stop working, socialising and in some cases even leaving your bed. Of course a healthy person would recoil from the thought of having to live like that. I can totally see how it is a kind of living death, because…newsflash…that’s exactly how so many ME sufferers feel, at least at the beginning (and maybe some of the middle). However, most ill people that I know establish a new life for themselves within the new parameters that the illness has created.

Before I became ill, I always wanted to write, but I never had the time to do it. I may be foggier and slower now than when I was healthy, but I do write. Among my ill friends I have a published author, a very accomplished knitter, someone who is about to propose to her girlfriend (since I wrote this, she proposed and they’re getting married!) and a woman who runs an internet business from her bed, and that’s just off the top of my head. Ill people don’t spend all day every day lamenting their circumstances. Of course we all have bad days and even weeks, and anger and depression can make an appearance then, but isn’t that true for most healthy people too?

I’ve noticed that when people first get ill, they’re more likely to talk about their illness. I know I did and I even know why I did it. I felt like I had to convince people that I was really ill and how serious the illness really was, because I felt so guilty about not being able to be there for social events or even just a chat, like I used to be. Now, I’ve made my peace with it, and I even understand why people react the way they do, and just about every person with a chronic illness has reached or will reach this same awareness and serenity. I know that at some time or the other, people with an illness feel misunderstood, but we can often misunderstand healthy people too, who are limited in their understanding by the very fact that they have not had a chronic illness.

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First Post of 2015

Plans for a New Year ME

Plans for a New Year

Today I was tempted to just post a piece I had written last week which I didn’t get around to uploading. Yes, I was very tempted, but I didn’t want my first post of the new year to be a leftover from last year. You will be seeing that one tomorrow (c’mon, I’m not going to waste it?!). I hope everyone has had a good start to 2015, but I know that if you’re anything like me, you’re probably struggling after all the over-exertion of the last few weeks. I am so ill at the moment, I can barely see straight, but I can’t say I regret a single minute of all the activity, talking and laughing that has left me totally wrecked. Of course, the longer I’m left feeling this way, the more that feeling of contentment will wane, but for now, I’m good.

I’ve been thinking a lot about what I want to do in 2015. I don’t really make resolutions, but I do assess where I’ve been, what I’m doing right now and where I want to be. I started The ME/CFS Ghost in the hopes of sharing what my life with ME is like. That means writing about how I feel, what I do; the good, the bad and the ugly. So, I’m going to be sticking to that, but I’m sure you’ll see more of a militant side to me because that’s honestly how I’ve been feeling. I’m not angry, I actually feel great inside, but I am much more confident in what I know and passionate about sharing that with others. I’m also in the process of writing a book about living with a chronic illness. I began planning it a while ago, but I haven’t had the time, health or energy to really work on it.

Going forward, I’ll still be attempting to post every week day, health allowing of course. Tomorrow you’ll see the post which is almost a part two of the mini rant I had in The Fault in Our Stars. On Wednesday I’m hoping to talk about ME adrenaline surges, because that’s what landed me in my current mess, but it all depends on if I can get my brain to engage. Thank you all for joining me in 2015, let’s make it the best one that we can.

In the past I’ve talked about how I have certain songs that get me through the day. Today’s song is Lynyrd Skynyrd’s Free Bird – guitar solo all the way! Enjoy and I’ll see you tomorrow!

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Last Post of 2014

The last post of 2014

I had a different post written for today, however I wanted my last post of 2014 to be something different. The end of the year usually results in us feeling anticipation and hope for the coming year. I also always find myself reflecting on the twelve months that have just passed by. It’s been quite a ride, but then again, I feel like I say that every year. 2014 was very difficult in a lot of respects, as I had to deal with increasingly bad health, as did many of those I love. I began the year making plans to move into a home with much needed more space, but that did not transpire. Even while dealing with my own physical limitations, I attempted to expand my writing and to take on more and more work. Then in September I lost my furry saviour Masti, even though he was only nine years old, which is not very old for a German Shepherd. Losing him has been a blow of epic proportions and even though he is not the first dog I have lost, I still find myself dealing with the sadness of him not being here anymore.

It has undoubtedly been a year of more lows than highs, and yet I still find myself thinking 2014 was a good one. Nope, I didn’t turn into some masochist, pain and sorrow loving crazy person. I feel like I’ve found a stability and serenity inside that was not there in previous years. I’ve stopped questioning the ‘whys’ of everything and instead find myself looking for solutions. When one thing after another seems to go wrong, it can be so easy to get stuck in the “Why me?” or “I can’t deal with this!” zones. Maybe it’s just getting older or perhaps it’s when you’ve had so much shit thrown at you, you reach a point where no more can stick. I don’t know, all I know is that I find myself dealing with everything better and just feeling happier and better within myself.

I’m also so much more grateful for the good things and great people in my life. What this means is that for the first time ever I have real hope for the coming year. Not the kind where I’m wishing that things will go my way, because let’s face it, that’s not likely to happen. Instead I feel the real, solid variety of hope, where I feel confident that no matter what happens at the very least I can deal with it and at the most, I’ll be able to find a positive (you know I hate that word, and I’m not talking about silver linings here) and take advantage of the situation. I’ve stopped fighting myself I guess and so my fervent desire for 2015 is to continue to stay out of my own way.

Tomorrow a new year starts and I can tell you one thing, I am rearing to get going! But I will tell you more about those plans next time.

Until then, I wish you strength, happiness and peace in 2015! Stay warm, stay safe and I hope you have a fabulous last night of 2014.

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The Fault in Our Stars

What it’s like to live with an illness

The Fault in Our Stars and misconceptions about people living with a chronic illness.While I was enjoying my time off last week, I decided to treat myself to some of the books and movies I haven’t had the time to read/watch. One book that I have had on my list for quite some time is The Fault in Our Stars by John Green. Apart from being an author of young adult fiction, John Green also has a YouTube channel with his brother Hank, and I love their videos. They’re both such intelligent and proud nerds. They also promote and raise awareness about a variety of causes from political situations in the world, to environmental issues and do so with humour and kindness. I happened to already have TFiOS, so I decided I would give it a go and I was not disappointed.

The story is told from the perspective of Hazel, a teenage cancer patient and begins when she is urged by her mother to attend a cancer support group. I have to admit that I am not a huge fan of young adult novels because…well…the stupid teenagers annoy me. There, I said it. I have been a teenager and I was never that idiotic, and even if my memory fails me, I know plenty of teenagers who are so much more than their literary counterparts. I found the characters in this book to be a complete breath of fresh air. They’re witty, intelligent, while still retaining the innocence and naivety of teenagers. The fact that they’re also dealing with cancer, adds complexity and depth. I fell in love with the characters, was totally drawn into their adventure and was heartbroken for them too.

After I read the book, I went to Goodreads to rate it and to browse through the comments and reviews. I’m never interested in why people feel the same way about a book as I do, I want to know why people feel differently about a book. I came across a very long rambling rant about how The Fault in Our Stars was the worst book the reviewer had ever read and she had a number of people who agreed with her. Just because a book is popular, it does not mean that everyone will like it. For example, I loathe and detest the extremely popular Fifty Shades of Crap Grey and Hamlet, Romeo and Katniss Everdeen are just some of the characters that annoy me. We won’t all connect with or even understand the characters in different stories, but what I found remarkable in this girl’s rant was that she accused the author of having no idea what teenagers with cancer would feel like and she didn’t think teenagers would be that witty or intelligent. This is what she had to say: “One thing I don’t buy is that teens with cancer suddenly become magically wise. They become terrified, confused, depressed and angry. They DON’T magically gain great insight in life and go around puking long monologues about the meaning of life.” The author, John Green, did actually work with cancer patients and their families as a chaplain, but even if I did not know that, I do know plenty of teenagers who have ME, and they do not spend their time terrified, confused, depressed and angry. My friend Peter has had ME since he was 14 years old, and he is one of the most well-read people I know because of all the time he had to read so many books, much like Hazel in TFiOS. Also, when you’re faced with a situation not only where you could die, but where you are dealing with a massive disruption to what people perceive as a normal life, you find meaning in your own life. I not only found that to be totally plausible, but know it to be so. I’ve been ill for over 13 years and I can assure you that I find meaning in so many things that other people just take for granted.

I find it ridiculous that we think so little of teenagers and this is what John Green had to say on his website: “Teenagers are plenty smart. I don’t sit around and worry whether teenagers are smart. I mean, most of the people currently reading ‘The Scarlet Letter’ and ‘The Great Gatsby’…are teenagers.” This was evident when I last met up with my cousin and her 15 year old son. He’s a teenager, and loves computer games and has a new trendy hairstyle, BUT just in those few hours I spent with him, he discussed the art in the National Gallery in a very thoughtful and intelligent manner and talked about The Tale of Two Cities which he was reading.

The Fault in Our Stars is a wonderful, touching story and I would recommend it as suitable for everyone. Check out some teens talking about the trailer for the movie and what they thought of the book below.

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Paying For Christmas

Post Exertional Malaise (PEM) or Postexertional Neuroimmune Exhaustion (PENE)

When you mention paying for Christmas, most people will immediately think of the credit card bills that are soon to show up. However, for people suffering from ME, there is an entirely different payment due. When a person with ME partakes in any kind of activity, they suffer from something called Post Exertional Malaise (PEM) or Postexertional Neuroimmune Exhaustion (PENE). Some people end up paying weeks later, as the exertion credits accumulate, but for me I usually pay the price 24-72hrs later. In that time frame, I just feel worse and worse, and find myself being able to do very little if anything.

PEM or PENE is probably one of the hardest things for non-ME sufferers to understand. You may have seen your ME sufferer friend or loved one look fine on Christmas day, but when you ask to pop around the next day, or invite them out for lunch the day after that, not only do they refuse, but you can’t even get them on the phone to speak to them.

This is because most ME sufferers spend each day performing a careful balancing act of not exceeding their physical limits and making sure they get adequate rest. Spending Christmas day with family members blows that balancing act out of the water. The exertion is not just the physical activity, although that in itself can have a huge effect, here’s a list of other factors that may have overloaded the ME sufferer:

  • Speaking: Maintaining a conversation or even multiple conversations can take a lot out of an ME sufferer, and it is one of the reasons I rarely, if ever, speak on the phone. It’s just not worth the effort it takes.
  • Thinking: Continuing on the conversation path, when you speak to someone, you also have to think of what you want to say, and this takes up energy. ME sufferers often experience cognitive problems, so our brains can get a little foggy when called upon to even do something as simple as talking.
  • Noise: I spent one Christmas with only four adults, one child and a dog and I was so overwhelmed by the noise. I just couldn’t relax and for most of the day I felt like all my muscles were clenched as if I was in a real state of stress. They were not particularly loud by normal standards, but I found the noise extremely jarring.

The video below is a vlog entry by documentingme in the midst of a post exertional period. As she explains, she did not go out or even do anything physically, but had a friend come and visit for a few hours with her dog while she rested on the sofa.

After a period of activity it is really important for the ME sufferer to get adequate rest. This means proper rest. Here’s what Dr Myhill says about proper rest: ”By resting, I mean complete rest from exercise, visitors, telephone calls, reading, computers, talking, child minding, noise and TV. All these count as activities which have to be carefully rationed through the day.”

If you’re an ME sufferer who is paying for your Christmas activities, firstly I hope you had the best time, if you didn’t, don’t worry, just spend time resting now. I know it’s not always easy to do, especially if you have children or have family staying over. But take advantage of whatever time you can and REST! If you have a complete relapse it can take you weeks, months or even years to recover from that. I had my last big crash in 2011, when, after over-doing it at work, I then REALLY over did it with my sister’s wedding. I should have rested but I didn’t. Here, at the tail end of 2014, I have yet to get back to my pre-crash level of energy and health.

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Letting Life Get in the Way

Letting life get in the way when you have a chronic illness...

I’ve had to take a break this week from my pledge to post every day. I’m going to be alone for two weeks, so I’ve needed to prepare for that time, in case I’m not well enough to go out and buy food or run errands. I love writing and I spend much of my time working on my sites, but I’ve decided to use my meagre energy reserves on spending time with loved ones. I hardly get to see friends and family, and at this time of the year, as people have time off work, there are more opportunities to socialise.

So this weekend I’ve planned to meet my cousin and her teenage son. They’ve invited me to go to a gallery with them. I’m not so great with the walking about, but I am still looking forward to it. I may have to pull out my trusty walking stick. Then I have time to rest before Christmas Eve, when I will be joining my whole family for the day as that will be our Christmas. In the week after Christmas I hope to be well enough to visit extended family. Another cousin had a baby back in September and I’ve wanted to go and see her for a while now. My two dearest friends also want to meet me at some point, but I have yet to work that in.

I’ve hit my stride now with gluten free food at home, so I hope that eating out won’t present much of a challenge. My family are aware of my restrictions and my dad, who will be cooking, even called me to discuss what I could and could not eat. The problem will be with restaurants. The cousin I am seeing this weekend also has things that she can’t eat, so it’ll be interesting finding somewhere that suits both of us! But this is London, if we can’t find something here, then we won’t find it anywhere.

Anyway, I just wanted to let you know that I’m OK, and have not had a huge relapse, I’m just letting life get in the way for once! In case I don’t post again before Christmas – I hope you all have a great one, no matter what you end up doing. Please remember to rest when you can and don’t over-schedule! I will also practice what I preach…promise!

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Christmas Shopping Aftermath

Christmas Shopping Aftermath

This weekend I proved that even when we know something will be bad for us, we go ahead and do it anyway. Two weeks ago I wrote a series of posts about how to get through Christmas planning and buying. The advice in them was sound, except I didn’t practice what I had preached. On Saturday I ventured out to do some Christmas shopping. In my own defence, I needed some items that I really couldn’t order as the store I visited doesn’t have an online store, also the reason I chose to go on Saturday (a day I usually avoid the shops) is because it was the only day I could get someone to go with me to carry my shopping.

I was really lucky because I went out early and it wasn’t as busy as I was expecting it to be. But the post-exertional malaise has kicked in full force. Yesterday I was achy and fatigued, but as is usual, today I feel even worse. So as soon as I have this written and posted I’ll be heading back to bed.

The lesson of this story is that no matter how good your intentions are, this is the time of the year where you may be forced to do more than your body can handle. Try to get as much help as you can and leave yourself some time for rest and recuperation afterwards. I would be feeling much worse if I hadn’t had someone help me with my shopping trip and I rested all day yesterday and I plan to do the same for the rest of today.

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My Dirty Little YouTube Secret

My Dirty Little YouTube Secret

OK, so this is probably going to be one of those posts that people may put down to drunk-writing, but I can assure you I’ve not been drinking. Still, it’s probably one of those things that one should not admit out loud let alone publish on a blog. But I’m going to anyway. So here goes…”Hi everyone, my name’s Jay and I’m addicted to YouTube Rewind videos”. Well, not exactly all Rewind videos, as I don’t care much for 2011 and 2012 (sorry Rebecca Black and Psy) but I loved, loved, loved the 2013 one. That has over 103 million views, and I’m pretty sure I’m responsible for a good number of those! At this time of the year most people may be excited about Christmas or New Year’s Eve, well, I’ve been waiting for Rewind 2014 and I finally watched it last night. A YouTube Rewind video is where they showcase the most popular video and music trends of the year.

I’ve always been one of those people who love to watch any recap or ‘best of’ video. The only part of the Oscars I watch is that video that shows all the people that died in the last year, even though it always makes me cry and I’ve never heard of the majority of the people. I love looking back at the year and I guess I tend to do an internal ‘Jay’s Past Year Rewind’ at the end of every year. I even made a Rewind video for my nephew’s first birthday about the first year of his life.

I haven’t watched television for about 5 years now. I still watched shows, but in their entirety at the end of each season. For the last year and a half, I haven’t even done that. (Miss you Sam and Dean – hope you’re still fighting the good fight!) However, I have watched a lot of YouTube videos. I mean A LOT. So when I came across Rewind 2013 on an episode of Teens React, I loved it! So many of my favourite YouTubers were in it and while I have to admit that at first I only knew one or two of the songs they used in their mashup, I know the whole thing very well now!

My first reaction to the 2014 one was that it wasn’t as good as the 2013 one! But after watching it several times today (yeah, that would be the addiction part) I think it did sum up the year very well and you’ll find just about everything in there. What is remarkable is that as I watch it, in my nostalgia I find just about everything that annoyed me all year wonderfully amusing. Even the ice bucket challenges and the devil baby prank. The only exceptions were the ‘Selfie’ song and that bloody song from ‘Frozen’ still annoys me like crazy…let it go already people! It was nice to see that this year’s video had a much more international feel and it was good to see London!

I’ve been told I’m mad by people who just don’t see why I love the Rewind videos, but then again, they don’t spend most of their time at home alone. There are loads of shows and series on YouTube that I love better than so much of what I’ve seen broadcast on traditional television channels. It’s nice to see all that celebrated in one video along with all the other viral madness of the year.

So check it out and see what you think! Oh and just in case you didn’t know, I write my posts at the end of the day and then they get posted the next morning. I know that there is sometimes a discrepancy between the timings I write about and the time the post is published. Sorry about that.

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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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The Joy of Audio Books

Grateful That My Ears Still Work!

The joy of audio books when you have a chronic illness

This morning I chatted with my friend LJ after months. We had a great conversation as usual, but amongst all that, she asked me if I had heard of a podcast series called ‘Serial‘. I had not, but after looking at the site I was intrigued. It may sound depressing to some people, but I do love true crime stories and this series is an audible documentary investigation, rather than a visual one. LJ said she was interested in listening to the series but had heard it was really addictive so she would wait until she had some free time. I figured I’d listen to the first one while I did some work, as I always have an audio book playing in the background. A little can’t hurt, can it? Famous last words! The first one was 54 minutes long and I swear I sat there just listening doing absolutely no work. It is just so good! I sent LJ a message telling her I didn’t know whether to kick her or hug her for telling me about the series. But it’s really not her fault; I just couldn’t resist.

I’ve been a voracious reader ever since I first picked up a book and discovered that the words on those pages could take me into different worlds. Even Roger Red Hat and Co really impressed me. One of the hardest things to handle when I became ill was that I had to curb my reading habits. Eye strain, migraines and not being able to focus on the page I was looking at didn’t exactly make for a great reading experience. Then someone gave me an audio book, and that opened up the world of stories for me once again. At first I only listened to audio versions of books I had already read. This was mostly because I didn’t have to concentrate too much because I already knew the story. But it wasn’t long before I started buying new audio books. I went back to reading when my symptoms got better, because no narrator, no matter how talented, can beat that inner voice in my head. This past year or so I’ve had to go back to listening, and my library of books has grown and grown!

If anyone out there is wondering what to get an ill friend for Christmas I would really recommend an audio book or if you don’t know what book they want, maybe a gift voucher so they can buy their own books. I used to have an Audible membership so I could download the books directly to my laptop, but they’re now part of Amazon, so it’s even easier to get audio books. I have so many health problems, but I can tell you one thing for sure, I am so grateful that my ears still work! I spend a lot of time alone but not really because I have my audio books. Some of them I listen to again and again, which may sound strange to some people, but I love them! If you can’t afford to buy audio books, then there are some great podcasts that you can listen to for free.

Oh and it’s the evening of the 9th and I’m just adding this to the site to go live in the morning and I’ve almost completed ‘Serial‘! I’ll add a full review on Spooky Fangs in the next couple of days.

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