Change is Scary

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.

Searching for a Job with M.E.

I realise I have been a bit quieter in the world of blogging recently and so I thought I’d do a post that sort of explains that (at least one of the reasons for it) and may actually be a little bit useful for someone out there… maybe. I have been trying to find a job, which may sound like a bit of a lame excuse but it’s taking so much energy that it’s pretty much taking a lot of my online time away from the blogosphere (if I’m using that right).

Also I should probably say that I am in no way qualified when it comes to job searching. I just wanted to share some things I’ve found useful and thought it could be a good way to start a discussion that might help some people. I always get paranoid and feel like I have to include these disclaimers!

It’s M.E. Awareness Day Tomorrow

I feel like every year I manage to miss M.E. awareness day, or week depending on which you choose to do, and this year I only realised today that it is in fact tomorrow. I haven’t really done many posts on M.E. recently, I felt a bit like I was repeating myself at times and the new post ideas I’ve had I just can’t really get started on, they are coming at some point though!

I’ve done quite a few posts on M.E. in the past, especially around M.E.A.W., so this is a link to previous ME Awareness Week ones  (and some tagged M.E. Awareness Week too because apparently I did two tags). I’d say if you’re interested in my story then this post is a good place to start and the spoon theory is always useful as a way to introduce the idea of M.E. and how it affects us every day.

As I’ve covered a lot of M.E. topics I thought this year I’d mainly post about ways people are raising awareness and ideas on what you could do, most of these are very easy as they’re aimed at people who may be severely affected by the chronic illness as well as those who aren’t.

Looking Back at 2017

I feel I should start this post with a bit of an apology for the lack of posts the past week. I planned on doing daily posts for the Twelve Days of Christmas Ciate Calendar but it felt a bit forced and they’d be so short but I’m going to be doing them on my Instagram for the rest of the twelve days if you’re interested and then a final post on everything as a round up. Christmas always takes up more energy than I think it will so there’s been a lot of resting and a trip out to the Lush sales, the haul will be coming soon.

Everyone seems to be looking back at the highlights of 2017 and it got me thinking about the year. I have to say it definitely wasn’t the best year, a couple of the things that happened weren’t great at the time but did have positive longer term effects and I think I’ve ended 2017 more motivated than I started the year. I think that probably happens for everyone every year so maybe it’s me remembering differently.

So let’s begin the look back at 2017. I feel like there should be some wobbly effect on the screen and some kind of music like in TV series saying that.

M.E. Myself and I: What Do You Do at Home?

It’s been a while since I wrote anything M.E. related but after a trip to relatives I thought this would be a good time. This question, along with ‘do you go out much?’ and ‘do you have any friends you go out with?’ are innocent enough questions, at least in this case they were, but they’re some of those that are so hard to answer when you’ve got a chronic illness. It doesn’t help that elderly relatives can forget they’ve asked so I’ve been asked repeatedly on the same day which doesn’t exactly help to just brush it off.

I guess that’s the thing, it’s harder to brush these off when you don’t actually so much. In everyday life I tend to think I’ve achieved quite a bit if I’ve managed to get my blog posts up for the week, gone for walks, done some volunteering and maybe get some jewellery making done. Looking at each day individually most of the time is spent what would probably be classed as ‘not doing much’ which translates to resting in chronic illness terms. It’s harder to feel like you’re acheiving something when you look at it like that and easy to forget how much improvement there has been over the past few years, even the last year or six months.

A bit of an update

Hey guys, I thought I’d do a bit of an update as posts may be a bit off schedule the next couple of weeks. Two weeks ago I had an operation to remove a big cyst and so these past two weeks posts have been scheduled and I hoped to be better by now so I could do my posts like I was before. Sorry if I’ve taken a while to reply to comments and I know I am way behind on reading blog posts but my concentration is getting better again. I think it’s more my ME knock on effect rather than the operation that’s getting in the way now as I was feeling so much better a couple of days after the operation than I have for years so hopefully this means I’ll actually have more energy and be able to spend more time on the blog. I might even get back to the five posts a week and more of a schedule for the different types of posts with five a week like I did the beginning of last year. That’s the goal anyway.

On the plus side I’ve had to relax and not do anything much and the weather has been nice so I have been catching up on my reading and the list of to read books outside. Though I highly doubt I’ll actually manage a book a week and have read 52 by the end of the year, maybe I should stop setting it as a goal but I do want o read more and it’s one way of doing that for me.

It has also taught me that I can actually do more scheduled posts, I’m just never organised to do this and forget after a few weeks but I’ll try to get into the habit more. I always used to worry that if I did them too​ far in advance they’d get out of date or I’d have new things arrive and mess the schedules up.

Also I do have some ideas for more health related posts but not sure how many people would be interested in them. I just is I’ve answered questions in the past about geberal anaesthetic and ME so might post about that as I’ve had a couple of experiences that were very different and I know before the surgery I was searching for information on the internet about things I’d need to take and remember so might do posts on that. I don’t know. Would any of you guys enjoy interested in those sorts of posts? I feel like I haven’t done many ME and health related posts recently.

Anyway, this isn’t much of a post but I wanted to do a bit of an update and explain why if I don’t post for a bit. Hope you’re all well and that the weather’s good wherever you are. Our early summer seems to have disappeared again here in the UK.

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! 

Review: Eco Beauty Australia Soothing Clay Pillow

I guess this is part 1 of this review really as this Clay Soothing Pillow from Eco Beauty Australia is designed for both heating and cooling and I’ve only used the heat part, I’ll definitely be trying the cooling side of it in the summer though. These normally cost £12.99 but it’s on TK Maxx for £6.99 at the moment so it’s not overly expensive anyway but worth getting it from there as it’s almost half off.

I got this from my parents for my birthday as I had a reusable owl heat pad thing with little ceramic (I think) balls inside it and the seems were going so it was being held together by plasters which is never the best thing when something is being microwaved daily. I find heat pads help so much with my muscle pain, which is why this post is in a Wednesday as it’s kind of an ME post in a way, definitely worth getting some kind of reusable heat heat pad thing and this is an option I didn’t know even existed.

Low-GL Diet: 8 Week Update

Not sure this picture has anything to do with the post but I like it, and what do you put as a picture for these?

I started the Low-GL (Glycaemic Load) diet eight weeks ago, there’s a post with a bit more about it here if you want more information on what it actually is. I have to say that when I hear the word diet I automatically think of not being able to eat much, feeling hungry or avoiding carbs but I have not found that I missed anything in this diet.

The main idea is to have the right proportions of a more carb heavy food, protein and a lot of low carb veg so it turns the carb into a more slow release sugar rather than having the peaks and lows that I was having before.

I started this as it’s a bit of a different version of the Low-GI (Glycaemic Index) diet that was recommended by an ME specialist a couple of years ago. I tried Low GI and I just couldn’t work it out so ended up giving up as it didn’t seem to work but it may be more to do with me failing to get it right. With my ME one of the symptoms I have is post prandial hypoglycaemia, though I don’t have diabetes my blood sugar drops low a few hours after eating so this diet was recommended to even that out.

M.E., Myself and I: Sometimes You Just Have to Give In

Image from Honey Mellow Handmade so copyright to them, found on Google. I quite like this sign, I’ll link it at the bottom of the post, I’m tempted to get one!

 

That title sounds a bit depressing doesn’t it? I think it’s something that we’re taught from when we’re little, or maybe it’s a cultural thing, but we tend to keep going beyond when we should, push too far and not really know how to listen to our own bodies when they’re giving us the warning signs. I’m mainly writing this from a spoonie point of view but I think it’s something that people without a chronic illness need to learn, or remember, so this post is a bit of a friendly reminder as sometimes it takes someone else saying something for you to really acknowledge it. At least it took someone saying it to me for me to stop feeling guilty about it.

As spoonies, people with a chronic illness, we tend to be forced to learn this lesson. A lot of us either don’t realise what we have or don’t get an official diagnosis until we’ve got to the point where we’re stuck in bed all the time. This means we often have already done the pushing beyond what we should as we didn’t realise that we should have stopped days, weeks or months ago and rested rather than pushing on and trying to do what we had always done.