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.

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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! 

Review: Eco Beauty Australia Soothing Clay Pillow

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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.

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Low-GL Diet: 8 Week Update

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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.

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Marathon Bubble Bar from Lush

They have different flags on the top. Picture from the lush website so copyright to them

This is a bit of an unusual post for me, I don’t often do posts about a product before I’ve actually bought it this time but I wanted to do one as the Lush Marathon Bubble Bar is one of the few products I have ever tried that has actually helped with my aches. 

I just wanted to say about it as it’s limited edition in the UK kitchen so I have no idea how long it’ll be available and thought it’s worth checking out for any spoonies out there who enjoy baths.  Continue reading

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.
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Supplements and ME

It seems like every few months there’s a new miracle cure for ME, or there was at one point. They do seem to have calmed down a bit over the past few years or maybe I’ve just given up looking. Anyway, years ago, when I had my original official diagnosis so that’s ten years ago, the ME specialist I was seeing recommended some supplements for me to try. Over the years I’ve tried various versions of them and I think some of them do seem to help, though it may all be psychological if they have a positive effect then I’m happy to keep trying them. This post is going to be about these supplements; the ones I’ve tried and whether they worked or not and why.

Before I start this post properly I feel like I should include the standard disclaimer, that I am in no way a medical expert or professional and these are merely suggestions and things to consider. Also definitely consult your GP or doctor about any supplements you might want to try, especially if you’re on medication as you never know what could clash and cause problems. I know that some of my medication can’t be taken the same the as certain supplements so it’s worth checking. Also I’m not saying that supplements are definitely the way to go but they might be worth considering or asking about.

I’m also including a couple of links for each of them but it’s worth doing your own research if you’re considering trying any of them so you can see if they’re likely to have any benefits. For example if you already eat a lot of oranges vitamin C is unlikely to be something you’d get much from.
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Trying Something New: the Low GL Diet

Sorry if this turned into a bit of a wall of text. I’m always a bit hesitant about posting the things I’ve tried for my M.E. especially when it’s anything diet related but I thought I’d do a bit of a post about a new diet that I’m trying because it’s not something I’d heard of before and see if anyone else has tried it, whether it was a success or not. Before I start I am definitely not a doctor or healthcare professional in any way and if you do decide to give this a go then do research and even check with your GP if you want, I did. 

One thing that I do get, which is apparently fairly common with M.E. patients according to an M.E. specialist I saw a couple of years ago, is post prandial hypoglycaemia (which I hope I spelled right!). Basically it means that a few hours after eating my blood sugar levels dip but, instead of just feeling hungry I actually almost faint. I say almost because I’ve always eaten something sweet when it gets to that point rather than test if I actually would. It’s like the effect diabetic people get but without diabetes (yes I have been tested for it, multiple times). This Low GL diet is aimed at getting your blood sugar levels even rather than a yoyo effect of highs and lows which can make you feel worse energy wise, never a good thing when energy is at a premium like with chronic illness, which has a knock on effect with energy, fat burning and generally feeling healthier.
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Boxing Day Sales Spoonie Style

The time around Christmas in general is really draining, I think that probably goes for most people anyway, so energy is definitely at a premium and after everything leading up to it I don’t have anything left when it comes to the boxing day sales. At the same time I do live sales shopping, and not just for the amazing deals you can find, it’s always been a bit if a tradition to go sales shopping title he nearest city the day after boxing day. Boxing day itself is a stay at home, relax and just watch TV kind of day anyway for my family, the crowds would out me off even if I was healthy unless there was something I really wanted. 

Since having M.E. I have been surprised how much I do miss the sales shopping and have found some ways to still enjoy it so thought I’d post some of these tips, even if it’s a bit late for some since the sales are probably half empty in some places (the Lush sale in the UK seemed to sell out in boxing day itself). Continue reading

ME Myself and I: Making Christmas Cards

I just got a new phone so all photos in this post come from the camera to see how well if works. 

I love making cards it’s one hobby that’s fairly easy to find cheap materials for and it’s low energy as you can make them as simple as you like. It’s also fairly low energy, or can be, as you can spend five minutes in a simple card with precut things and out everything in a tub to go back to later. 

A few of the things in the post I’ve had for years but a lot is from Hobby craft this year if you see something you want to get yourself. I could do a haul post with links and more details if you want to know how to get each one. 

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