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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:


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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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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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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