Category Archives: Personal Blog

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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Adventures with Nettie

How Imagination and Friendship Helps Chronic Illness

The joys of an imagination when you have chronic illness

My friend Nettie is struggling with her health at the moment so I don’t really hear from her as often as I used to. She’s the friend who sent me the Christmas card I mentioned the other day. Although her partner keeps me updated on how she is doing, I miss her a lot as she seems to have always been there these last few years. Nettie is also an ME sufferer and has been an amazing friend to me, even though we have never met or even spoken. Nettie and I began our friendship after I was so moved by something she wrote that I e-mailed her to express how her words had made me feel. That was almost 8 years ago and I’m very proud to say that we’ve been friends ever since.

Most of our chatting has been done over text and for a considerable length of time I was unable to make it out of bed for much of the day. But Nettie and I would go on amazing adventures together. We are both Harry Potter fans, and like me, she’d listen to the audio books on repeat. Stephen Fry has a very soothing voice. From there our imaginations would take off and we’d message each other asking if the other would like to meet up at the Leaky Cauldron for a butterbeer. Or we’d head over to Hogwarts to join the students for dinner. Whichever one of us had extended the invitation would go and pick up the other one. So we’d make our way on the back of Hagrid’s bike, or riding a dragon. Even if we had to go on our own broomsticks, a baby dragon perched on the back was a great way to stay warm.

Some people reading this might be thinking “These two are insane!”, and yes, maybe we are a little, but in the best possible way! In fact, this insanity is what helped to keep me sane. It’s very difficult to imagine the effects an extended period of immobility and illness can have on a person, especially when you’ve always been healthy. When your head hurts too much to read or to watch a movie, you don’t have the energy to sit up and go online, and you can’t sustain a conversation to be able to physically talk to another person, it can get very depressing. I was able to stave off the worst by exploring a rich imaginary world (thank you Ms Rowling) with my friend Nettie, the wonder witch.

We would also send each other music we liked, and on the rare occasions one of us managed to make it out of the house, we’d take the other with us via text. So today, when I’m thinking about Nettie, I’m remembering all the adventures we had together and I want her to know I’m still always ready to go for a butterbeer! I miss my witchy friend and I hope she’s feeling better soon.

Before you readers ask, no, Nettie is not a figment of my imagination. I could never have imagined someone as fabulously quirky and wonderful as her.

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My First Gluten Free Christmas

Gluten Free Christmas

I went gluten free back in October and you can read about my reasons for doing that in Coeliac Disease, ME and me. I have actually had gluten free Christmases in the past, but I don’t remember anything about them and this is probably because I was cooking and able to make the changes very easily. This year however, I may be spending Christmas where others will be cooking and there are certain problems that arise with that scenario.

Early on, when I first became ill, I experienced a lot of guilt associated with being a burden on others or not being there for others and this is something I’ve mostly dealt with and come to terms with. But then today I felt a twinge of that guilt again, and it really took me by surprise. I know what a huge job cooking a lavish meal for a group of people is, and I realise it is because I don’t want to be ‘that person’ who makes the cook’s job even more difficult. This is totally ridiculous, of course. I can’t help that I have to eat gluten free, and if people still invite me when they know about my dietary requirements, then obviously they’re more than prepared to cook for me. Also, I’m known for always ending up in the kitchen wherever I go, so I can also help rustle up some gluten free alternatives.

I’ve been thinking about the different components of Christmas dinner and my main problems will be with sauces and if they’ve coated things like the roast potatoes in flour. It’ll also be a good idea to take some brand new wooden spoons and maybe a cutting board along, to avoid contamination.

The worst case scenario will be if they tell me something is gluten free, but it isn’t. It sounds like a mean thing to do, but the motivation for such a lie is usually the opposite. They want to avoid any awkwardness about the fact that you can’t eat something everyone else is. Seriously though, if someone just told me to avoid certain dishes, I wouldn’t feel bad and appreciate being told so much. There are a few people who don’t believe you have a real allergy, intolerance or dietary need and will just serve you something you specifically can’t eat. That is just not cool and can actually be very dangerous with people ending up in hospital.

Do you have any tips or advice for people like me facing their first gluten free Christmas?

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Scaring Myself Stupid!


I love horror – movies, books, ghost stories, personal anecdotes. If it scares, I love it and I’ve been like that for most of my life. I’ve really wanted to have a writing outlet for that online but I’ve not had the energy or time to pursue it. Earlier this year, I decided that rather than wasting my precious health on writing projects I really had little passion for, I would focus on only those topics I was enthusiastic about. I started developing an idea for my own spooky website and I bought the domain name and started organising my collection of horror articles to publish on there. But as is inevitable with an illness like ME, I became ill over summer, and then my dog got ill and passed away in September. I had been hoping to launch the new site long before Halloween, but it soon became apparent that even a Halloween live date was not going to be at all practical.

Well, the last few weeks I’ve been working on building my new site, and it’s been really fun and I don’t think I’ve enjoyed myself in my writing in so long. But there has also been a really unexpected side effect – I’ve been scaring myself stupid! After years and years of watching, reading, listening to and even telling scary stories I really did not believe it was even remotely possible for me to be this spooked. At first I found myself thinking “Well, excellent, if I’m this spooked, hopefully others will be too” but then it changed to me actually feeling uncomfortable and worrying about if I could do the horror thing long term!

The thing is that I am really very good at totally suspending my disbelief. So when I’m researching ghost stories or the true events behind certain horror movies, my over-active imagination gets the better of me. This has always served me well when watching an hour and a half movie, or reading a book, but working long days every day for weeks like this has left me in an irrational state. This weekend was the absolute worst, because I was researching a really horrible story that was the basis of a 2012 horror movie. It actually serves me right for working over the weekend – I should know better than that. So I guess the answer is, yes I can do the horror thing, I’ve just got to make sure I remember to include non-horror activities!

Today I scurried back to the safety of the ME/CFS Ghost and you know what, I’ve had a brilliant day. It was more relaxed and I just read some of my old posts and planned how I want to progress into the future…but that’s a story for tomorrow!

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Daily ME/CFS Ghost

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

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

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

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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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Haunting Renewed: ME/CFS Ghost Update

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

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

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

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

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