Change is Scary

The title image. Behind the text is a photo of the front of a 2019 diary and a book about the Dreamweaver website designing program

Change is scary, it’s unknown and difficult, but a lot of the time it’s inevitable. Some things don’t change, like my love for cheesy 90s pop, Red Dwarf and Crash Bandicoot, but for most things it’s going to happen whether we like it or not. Even the best kind of change can be scary, especially when it’s something big. One of my goals for this year was to try new things, and I have definitely done that, more on that later. But, with my chronic illnesses it means that these changes can have more of an effect than I realised they would.

We all have our comfort zones, whether it’s staying at home reading, burying ourselves in our work or focussing on our friends or family over trying new things. This blog kind of became my comfort zone and I ended up almost relying on it for more than it was. I ended up getting anxious when I couldn’t post on the day I set myself, I’d end up posting a ‘sorry I can’t post’ type post and it wasn’t really fun at times. That’s one of the reasons the changes in my life, or maybe more my way of thinking, started.

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Keep Asking Questions

This is probably another of those posts where I’ve already kind of posted about in the past as part of another topic but I feel like it deserves its own post and it’s something that’s kind of relevant in my life at the moment.

Sometimes it’s easy to fall into the trap of blaming every symptom you have on ME, I know in the past I have been guilty of this and when doctors tell you it’s all a part of your chronic illness this doesn’t help. I know I’ve been very lucky with doctors in general as every one I have seen at the surgery I go to believes in ME and has ideas on the treatments available. One of them said ‘Just because you have ME doesn’t mean you can’t have appendicitis’ which is maybe a bit if an odd statement but I totally agree and think it’s a great way of thinking about it and does stop you from just sticking every new symptom into that diagnosis of ME.

If you have a new symptom or something that doesn’t fit with the ME that you have, let’s face it we all seem to be different and things that are everyday symptoms of ME for one person aren’t for another so it’s no wonder doctors get a bit confused over it sometimes, then be sure to mention it to a doctor, maybe push for tests. Even if they’re the same tests you had done five years ago or even six months ago if it’s a new symptom that’s appeared then it could be something​ that’s developed. I’ve had certain symptoms for years, they even landed me in hospital overnight eighteen months ago, and have had so many ultrasounds and scans done that came back as nothing but I had the same tests repeated and something showed up. I’m not going into too much detail as there’s blood tests and I have no idea what it is yet but it shows that, although every one of these symptoms could fit into my diagnosis of ME and IBS this is something new, at least it’s newly discovered (though saying that feels like it’s a new species or something in a nature programme) andtheres a way of treating it that will hopefully mean I don’t have all of these symptoms. 

Since having ME I have ended up being diagnosed with other things that effect my health, even things as simple as good intolerances, that could have just been dismissed as part of ME so it’s important to push and ask questions if something feels wrong for you. I’m not saying self diagnose with the internet, that can be dangerous, but do ask your GP about things. Here may be something that you didn’t mention that leads them to something new. 

For me know if the most frustrating things about ME is the fact that there is no treatment, or rather not cure, so it’s all a case of trial and error. So if there’s a blood test that can either rule in or out something that could be causing my symptoms then I’ll get it done. Even if, at one time, I was going in for blood tests every month or every couple of weeks. If there’s a possibility some of my symptoms are part of something else that can be treated then that means my body has less to deal with and my ME improves as a knock on effect.

I know it can be hard, I know at times I’ve felt like I’m just wasting my GPs time if I keep going back for the same thing, but it can be worth it. If all the tests come back negative then maybe it is a fun new symptom of ME, they seem to pop up from time to time for me, but at least it ruled out the other options.

Also, try to find a doctor who is prepared to keep pushing. As I said before, I’ve been lucky that all the GPs understand that ME is a physical illness as well as having a mental effect but some have fallen into that ‘it’s probably ME’ trap. If you can then get a second opinion and if you find a doctor who is willing to push for more tests then stick with them. Unluckily for me I seemed to go through a patch where my GP left a few months after i started seeing them so I saw quite a few at one time. I know it’s not always possible but getting into a waiting list for an ME clinic, if there’s one in your area, is something I would definitely recommend. You may have had ME for years and be able to pace yourself and control it, if that’s the right phrase, but ME specialists will have ideas on new trials and ideas that have come out or what symptoms could be, it was only when one near me mentioned POTS and postprandial hypoglycaemia that I knew what they were and that they can be common for people with ME but they were causing some of my problems with energy and since changing things and treating those aspects my ME in general has improved a bit.

Sorry guys, this post got a bit longer than I meant it to and it might be a bit of a wall of text but I hope it helps someone​. Even if it’s just hearing someone else say, or read it, I find it reminds me to do things that I sort of forget so maybe this post might do that. I don’t know.

Anyway, I hope you’re all as well as possible and had a good Easter weekend! 

ME, Myself and I: ME blogs

This is just a short post as I decided that this year I am going to be better prepared for my posts in ME Awareness Week and thought it would be nice to include one of my daily posts with links to other people with blogs about life with ME. This year ME Awareness Week is 12th – 17th May so there’s a while to go and I will be linking to this post in any ME related posts that I do until then too. 

I know I only post once a week about ME so I’m not the most frequent blogger when it comes to this so the blogs don’t have to be exclusively ME related. I just think that,as well as bringing awareness to the actual illness of ME, it would be nice to bring awareness to bloggers with it as well. It also means I won’t be copying exactly the same posts this year as I did last year, though I will do a master post type post at the beginning with links to my old ME blog posts too.

If you want me to include your blog in the post then leave a comment, or if there’s someone you follow who you think should be linked leave a link to them too. If it isn’t your blog make sure they’d be ok with me posting a link but I will probably leave a comment on their blog checking they’re ok with it too. There are some people I follow who blog about ME and related illnesses alongside other things in their blogs so I’ll be trying to message or comment on posts by anyone I follow who I think would be interested in this blog post, but if you’re reading this then it’d make sure I don’t accidentally miss you if you could comment in this post. 

I’ll be posting about this on twitter too, probably nearer the time, so anyone with an ME related twitter account feel free to tweet me @thoughtfulpige1 or, if you have a blog on another platform and no wordpress or twitter account then you can always email me at thoughtfulpigeon@hotmail.com.

Thanks for reading this, it doesn’t matter if you follow me or not for this so don’t feel like you have to if you post with your blog link here. Hope you’re all as well as possible and having a good week.