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Worst Things to Say to a Person Living with a Chronic Illness

One of the most difficult aspects of living with an invisible chronic illness like ME is the fact that people don’t understand exactly how ill you really are or they do and give the most unhelpful advice. This is something I have experienced myself and I’ve heard other sufferers say so many times.

But most of us don’t complain about it or even pull up those people even when they’re saying the most outrageous things. This is for a number of reasons from being too ill to muster the energy to do so, or just not feeling brave enough to say anything.

So I was thinking about Christmas and the holidays and how many of us must have had to interact with friends and family who just don’t understand. How many of us must have heard judgemental comments or advice all well-meaning and given in a helpful spirit, but which have left us feeling even worse?

Yes, we sound whiney and ungrateful when we complain about these comments, but that’s only because healthy people don’t understand how devastating their words can be. So to try and explain this I made this the subject of my latest video titled ‘Worst Things to Say to a Person Living with a Chronic Illness’. Please be sure to like the video and subscribe to my YouTube channel. I will be uploading every week now and I am taking requests, so if there is an aspect of living with a chronic illness that you want me to cover or even rant about, let me know and I will be happy to oblige.

Let me know in the comments below or even better on the comments section of the video, what are the worst things people have said to you. How did it make you feel to hear such things? As always thanks for all the support and encouragement – it’s what keeps me going and making these videos.

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What Do You Want in 2016?

The months seem to have rushed by since August. In almost a decade and a half of chronic illness I’ve found that even though each day will often seem to crawl by, with me crawling right behind it, the weeks, months and years tend to fly. Luckily (or is that unluckily? I have yet to figure that out) I have been extremely busy since August and so much, too much even, has been happening in my life. One thing hasn’t changed though; I still seem to be crawling behind. As I’ve not been around much I just wanted to let you know what is happening, and what you can expect. Also, I want to know what you want to read and see from me! Are there any topics you would like me to cover? Maybe there’s an issue that needs explaining, or perhaps you’d just like me to vent about something that probably bugs a lot of us, or there might even be something wonderful that you’ve found for which you are grateful. Let me know and I will do my best to cover that topic.

So where have I been and what have I been doing? I had some major changes take place in my life over summer and I’ve been adjusting to these. I was prepared for anything to happen. I didn’t want to feel stressed out about any problems that could arise nor did I want to create issues where there weren’t any, so I took on an attitude of “Just let it come; whatever happens now, I will deal with it.” I am thrilled to report that health has actually been better than it has been for a while and I’ve been happy. I think a major reason for this is that even though I had an initial panic to get moving and to do something…anything even, I actually slowed right down and gave myself the time and space to get my bearings and to make sure I was OK. I looked after myself in a way I probably hadn’t for a very long time.

I’ve loved relating to myself as an individual again. I’ve always been very independent, but I guess when you’re in a relationship and especially when you’re living with someone, you inevitably will define yourself in the terms of that relationship. There’s nothing wrong with that. But sometimes it is nice to just get to know who we are and where we are in the whole scheme of things and I have definitely been doing that.

Ah, the YouTube channel. Yes, I know I put up one video and then disappeared. This was precisely what I did not want to do. I had been so organised and prepared to create videos in advance so no matter what happened with my health, there would definitely be a video out each week. Well it would appear that life had other plans for me! First I was without internet and then I had an awful chest infection. I also have had much upheaval and change. So by the time I was ready to begin uploading again, the Holiday madness had begun. I decided I would keep working on the videos and start posting them in the New Year and that is exactly what I will do. I created a short channel update video explain this:

THANK YOU FOR ALL THE LOVE AND SUPPORT!

The videos really do take up a lot of time and effort BUT they are worth it because of the response I have had from other sufferers. The way things are in my life at the moment I have to juggle a lot of balls just to survive and my life is far from certain. But one thing is certain, I will continue to make these videos for as long as possible and furthermore, I look forward to your suggestions and requests on the types of topics you would like me to cover.

Happy New Year!!

OK that’s all for now my lovelies! We survived 2015, now let’s go deal with 2016! We can do it together and even from the sanctuary of our beds.

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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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