Showing posts with label big bad tired. Show all posts
Showing posts with label big bad tired. Show all posts

Sunday, 15 May 2022

The Party or What it takes to get outta here

Hello my lovely loves!

This ME Awareness Week I've got a little surprise for you. Part of the reason I've been quiet on my blog over the last couple of years is the extra effort and care I've been putting into improving my health. 

It's slow and frustrating and sometimes makes me want to scream, but... over time I've really started to see the benefits. Perhaps not ones that would seem a great deal to an outsider, but progress nevertheless.

Three weeks ago my parents had an afternoon tea for their 25th Anniversary (although technically 27th now, ta, Covid) and I've been working really hard in order to make an appearance.

And I'm so, so proud I made it. I couldn't stop smiling all day, even once I'd started to feel awful.


I'm currently about 3 weeks afterwards and the Payback is lifting, but I'm still not quite back to how I was pre-party. Still, that's blooming' good going for an ME sufferer! (Also payback is made much more bearable with
ridiculous amounts of leftover cake. Shocker.)

I took the opportunity to make a video showing what goes into making it to an event like this, even for such a short time. If you're a sufferer yourself then feel free to filch any ideas I used to make it happen.

Before I link it, there are two things I forgot to mention in the video:
1. We chose the time I'd arrive at the party very carefully. Too late and I'd already be past my best for the day, and too early and people would be doing their hellos which is very tiring to be involved in. People arrived at half 2 to begin tea at 3, so Tom set off at 3 to pick me up.
2. I mentioned taking snacks because, even with having eaten before leaving and during the party, there was always a chance my blood sugar would suddenly drop. 
While getting used to short trips I've overdone it in the car before and become stuck in the carpark outside our house while Mum ferried in biscuits from the house. Now we always take some as a preventative measure.


Special thanks to Tom, who chopped a chunk out of his afternoon tea experience to come pick me up and drop me off again. I couldn't have done it without you! (I did say thanks on the day, but it bears repeating.)

Mum's on the left and that's my aunt on the right. 
We have the same nose.


Tuesday, 20 October 2015

Anniversaries and Inspirations or How I Keep Upbeat

Hello again my lovely people,

I’m sorry it’s been so long, but phew! It’s been busy here. It’s not completely unexpected though, because this period in the year is always a little hectic for various reasons.
One of those reasons is that I've start planning Christmas. I know, I know! It’s ridiculously early, but I have to do things so slowly that I need to start ahead of the game. 
Plus I just genuinely enjoy buying or making people presents, and, as you can imagine, it’s really important to keep upbeat. 

Remaining positive sounds like a ridiculous thing, but if you're in a positive place emotionally it helps keep your system in a calm and relaxed state; which is exactly what your body needs in order to be able to heal more easily. So that's what I'm going to talk a bit about today.
Because things tend to blur into one another a bit I'll put the things I consider as an item on the Grand List of Upbeat in bold so you have an easy reference point to all the separate things I use.

Keeping upbeat can be difficult at any time, but at this time of year it's especially important to keep myself positive because I have a few difficult anniversaries clustered together.
The end of September marked my first full year being housebound. That’s been a tough one to deal with, I’m not going to lie, and I felt that one looming long before it actually happened.
(In case you're wondering, we don’t count the misguided emergency doctor’s appointment as an outing. That would be rather like considering a trip to A&E to be the same as a mini break to the Costa Del Sol.)
My next anniversary is at the beginning of October, when it’s my birthday and finally, the 1st of November marks the anniversary of when I got sick. 
That’s right, since I was what’s known as a Rapid Onset case of ME/CFS (I woke up one morning horribly ill and didn't get better - Slow Onset is gradual downward spiral taking several weeks or months), I actually get a day to mark down.
This year will mark the third. Hoi.

You may be wondering at this point why I consider birthdays such a stressful time that I lump them in the same category as "Happy Haven’t-you-left-the-house-in-a-year-and-are-essentially-a-hermit Day" and "Merry Sickmas", but, I have my reasons.

Before I got sick, birthdays were always something I’d considered as a chance for a fresh start. 
I feel like someone's birthday is a person’s true New Year; a time when they can look back on their achievements and plan goals for the next year. Preferably while eating their own weight in cake.
(This is partially because I consider actual New Year to be a bit rubbish. I’ve never really liked getting super drunk with people I don’t know very well and I’m not a fan of huge party crowds (unless there is fancy dress involved), so aside from the large amount of fireworks, I’d rather hang out with a smaller number of friends.
The best New Year I’ve ever had remains eating chilli with a couple of mates and playing Trivial Pursuit. Rock and roll.)
Unfortunately since becoming ill, birthdays have become less of something to enjoy and more a reminder that I’m still not better yet.

My last birthday I was horrendously ill, and I had just come to the realisation that I was getting worse rather than better and that I desperately needed help.
It was one of my darkest times, and I’m so grateful to my family and friends to helping me to find the strength to fight and find a new way at looking at my illness.

This last year has been so hard, but through all the hard work I’ve put into my resting regime, and diet, and the appointments with my psychologist and hypnotherapist, I really feel like I’m more in control of my ME than I ever have been. Before, I was just being dragged along for the ride, now I’m actually in the saddle.

Perhaps that’s why this year my birthday wasn’t as upsetting as usual. Don’t get me wrong, I still had my “Oh god this is not how I want to be spending my life” moment, but for the most part I was just so glad for the last year to be over.
I also have such lovely friends and that always keeps me feeling bright. This year several of them even created a wonderful Happy Birthday video to send me best wishes and to make me laugh.

My friends play such a big part in keeping me upbeat, and even though I miss seeing them so much, I’m so grateful that they have stuck by me, when so many others would’ve given up on someone who can’t join in anymore.
They send me post, or jokes, or silly cat gifs, and chat online or by text, and they always, always make me feel like I've not been forgotten.
(This relates to another item I've briefly mentioned earlier is that I like to buy/make things for my friends. They're so ace, who wouldn't want to make them feel awesome?)
Having such supportive people in my life makes such a difference to my state of mind (and therefore health) and I truly couldn’t do this without you, my wonderful, wonderful friends, so thank you for always being there for me.

I'll give you a second to recover from that truly soppy moment before moving on to my next way of keeping inspired and upbeat; The Wall of Joy.

Okay? Good.

The Wall of Joy is something I've had ever since I moved away to uni. It changed every time I moved, but usually comprised of a mix of my favourite cards and post from friends, photos of them and my family, and artwork I liked. The longer I spent in one place the bigger and bigger the wall would get.
My current Wall is a lot smaller, and really more of a corner, just because I’m not able to stand that many different things to look at in a relatively small place anymore. But it too has grown over time to include different objects as well as artwork, photos and quotes.
Here it is.



The “IF THAT’S WHAT IT TAKES” paper was the first thing to go up, not long after I started my resting regime. It might seem a little depressing, but the truth is, sometimes you have to do things you don’t really want to in the short term to improve in the long term, and this has always helped to remind me of that, so that I don’t throw away my progress for a short-term victory.
Plus on the inside of the paper it says “You can do it”.
(It actually is a good indicator of my level at the time. I couldn’t manage to look at more than one relatively blank piece of paper without feeling overwhelmed. Kind of horrifying, but other things have slowly joined it and that I’m not at that stage anymore.)

The next thing to go up was, “STOP. TAP. CHOOSE.”
This refers to several of the psychological tools I’ve been taught by the Optimum Health Clinic. 
(I would consider them a separate tool to the Wall of Joy in my never ending quest to keep upbeat, but the Wall is where I'm most reminded of them.)
I’m not sure how far I can go into the exact details of this, but “Stop” refers to their Stop Technique, “Tap” to Tapping or as it’s sometimes called EFT, and “Choose” to the final stage of EFT, where you choose a positive thought.
The idea is to use the Stop Technique to halt negative thought patterns and shift onto something more positive, to use EFT/Tapping to release negative emotions around the subject, and then to choose how you would rather feel at the end of said Tapping.
These are my most used tools and I find them very effective. 
As I’ve said before, Tapping looks and sounds mental, but when you’re doing it it just feels like releasing all your worries whilst still being positive about it.
There is more information on Tapping here
The Stop Technique is the Optimum Health Clinics own invention taking parts of other things like CBT and the Lightning Process.

Next on the Wall there’s my “Certificate of Awesome”, given to me by my mum, and my favourite photos of her and my step-dad, David. This collection of photos, taken at a family friend’s wedding, shows how truly mental they can be. It is one of the reasons we get on so well.
Even more than my friends (sorry guys, they pipped you to the post!), I could not get through this without my amazing parents. They have been so incredibly understanding and supportive and are always looking for ways to make my situation more bearable. 
They’ve even given up going on holidays together to make sure I’m properly looked after.
(Again, my parents are their own category in keeping me positive, but the Wall is there to celebrate those things as much as provide them, so that's where I'll list them.)

Next the objects started to be phased in. My star lamp from my friend Caroline, and my handmade one-of-a-kind felt BMO (the little turquoise dude) from my friend Nick. BMO is my favourite character from the TV show Adventure Time, and one of my prize possessions.
To match BMO I added two more characters from Adventure Time, Fionna (rabbit hat girl) and Cake (big squishy cat). 

The last thing to be added to the Wall is the Phoenix card, sent to me by my friend, and honorary sister, Catie.
This card has, rather unexpectedly, had a massive effect on me. 
As well as being the nickname of my grandfather, I’ve seen phoenixes adopted as symbols of those with chronic illnesses several times, and within the tail feathers of this particular phoenix is a beautiful quote by the poet Rumi. 
It reads: “You have seen my descent. Now watch my rising.”
Those words have become something of a mantra to me, which segues, rather neatly, to my next way of keeping upbeat.

For my birthday I had two silver mantra bracelets made. One I ordered myself, and one was a gift from my mother.



The first is made of old art deco spoon handles (to reference the Spoon Theory) with the engraving “trust” on it. It’s to remind me to trust that things will get better.
(I’m pretty sure my friend Josh will tell me I should have the words “no one” added after “trust”. Unfortunately for Josh, as funny as that would be, I don’t think that would be as uplifting.)

The second is a silver bangle stamped with the Rumi quote I mentioned above. 
It may be trite, but the reminder that life is a cycle and that ups and downs happen is incredibly important to me. I've been through a lot, and having something on my wrist that, despite it’s elegant wording, essentially shouts, "F*** YOU BIG BAD TIRED, I'M TOTALLY GOING TO BEAT YOU!", makes me feel a lot stronger.

Fewer things give me more examples of ups and downs in life, than my next item on the list; my cat, Jessicat Fletcher. She swings between adorable fluffball and evil genius faster than you can say, “it’s only a flesh wound”.
The vet called Jess “a character cat”. I think that’s diplomatic speak for a vicious hellbeast.
She does, however, make me laugh every single day, whether it’s because she's falling off something, having a yowl-talk with my mum, or just generally being a sassy little miss. (Her cuddles are also excellent, when she deigns to give them.)



Also, getting Jess was a big surprise. A massive surprise. Because to say my stepdad is not an animal person is a colossal understatement.
Me and mum had tried for years to convince David that getting a cat was a good idea, to no avail. 
However, after I’d been sick for a while, David took one for the team, and suggested we have one of my cousin’s cat’s kittens to help cheer me up.
Thanks, David. 
Best present ever.

Similar to the Wall of Joy, is the Happy Thought Jar; a jar full of lovely memories written on little bits of paper.
When I feel low, I fish around in the jar and pull out a Happy Thought.



These can be compliments I've received, trips me and my friends have made or memories of the things they've done to make me happy. The birthday video is definitely going in the jar.

The final way I keep upbeat is by focusing on achievements. I like to think of that as a more positive way to count my blessings. 
Counting your blessings usually involves comparing your situations to other people’s much worse situations, and going, “Phew, at least I’m not them!” 
Unless you really enjoy a bit of schadenfreude, it is thoroughly depressing. It also often makes you feel anxious that your situation may get that bad, and guilty that you felt bad in the first place. 
Those feelings are all extremely unhelpful.
So instead you focus on achievements. We’ve already done it in this post. I used to be able to only look at one piece of paper on my Wall of Joy, but now I have several and some photos and other objects too! Awesome!

It can be hard, especially when it’s a natural habit to want to compare it to how things were before you got sick. It takes practise not to do it, and I still struggle with it, but I am getting better. The psychological tools I mentioned before are a major part of the training for this.
One thing I have recently achieved is being able to draw again. 
I can’t tell you how much of a relief it is to be able to do that again. Drawing is such a massive part of who I am, that when I couldn’t do it it felt like a limb was missing. 
I didn’t talk about it at the time, because I found it too upsetting, but getting that back was like coming home.

I still struggle with the fact I can’t do as much as I used to, but that’s okay. This whole process is a massive learning curve, and I’ve come a really long way. 
All I want to do at the moment is draw and bask in it (that’s why this post has been so long coming), but I know I have to go slowly and lay down some rules about how I work now. 
I’ll get there. 

I just need to keep upbeat.


Tuesday, 17 February 2015

The Big Bad Tired

Hello!

My name is Hannah and I have ME/CFS.

The main idea of this blog is to give me an easy way to keep my friends and family informed about my road to recovery, and to help them understand my illness. 
This is primarily because whenever I have to talk to someone about my situation, I suddenly become Monty Python's black knight, cheerfully insisting I'm fine no matter how much I'm bleeding all over the forest floor.


That’s not necessarily a bad thing; I don’t want to be one of those people that whinges about their life every moment of the day, I don’t always want to burden my friends with what can be some pretty heavy stuff, and, slightly more selfishly, it’s really depressing talking about it ALL THE TIME.
The only problem is that is if I continue to act like I’m fine then people get pretty confused when I say I not up to seeing or talking to them. 
And if it’s a choice between my friends thinking the reason I don’t always see or talk to them is because I don’t want to (which is most definitely Not The Case) or being thought of as a moaner, then I’ll take moaner any day.

So, if you don’t know what ME/CFS is you can take a little look to your right where there is a (very) brief explanation. As you might've guessed from the title of the blog (you clever thing, you!) it means I'm exhausted. All. The. Time. 
Basically, somehow (and no one really knows how), my body seems to have forgotten how to store energy, so everything I do wears me out, and sleeping doesn't make me feel any better. 
It's a bit like being in a Duracell advert, but everyone else has the good batteries and I have the rubbish ones that someone got at a dodgy looking corner shop that smells a bit weird and stocks things like "Nezcafe" and "Androx".

It’s a condition that’s called a lot of things (ME or Myalgic Encephalomyelitis, CFS or Chronic Fatigue Syndrome), but, when I’m not calling it a string of expletives, I like to call it The Big Bad Tired. 

There are varying degrees of the condition, usually measured by a percentage. Some people are only marginally affected and can carry on pretty much as normal, with some minor adjustments to make sure they don’t overdo it (they’re the 90-100 percenters) and some people are completely bed bound (0-5%).
I currently level off at around 15%. 
I wasn't always, for the first year or so of my illness I went from zero to 40% fairly quickly, but unfortunately it's an unpredictable little sod, and now I'm back at 15%.
I’m housebound, and have been for a few months now, but I get up out of bed every day, and I can sit in the garden for short periods provided I wear as many layers as I can fit under my BMO onesie (I'm a classy bird).

My current rest ratio is 2:1, so any activity I do (and I rarely do more than half an hour at any one time) is followed by twice the amount of rest. And by resting I mean lying down, with my eyes shut, in silence, while I meditate or focus on my breathing (but not sleeping, as that would mess around with my sleep patterns). It's fair to say that that is about as much fun as it sounds.

Activity counts as anything that takes any effort, be it physical, mental or emotional. Whatever you can do consistently without making your symptoms worse is called your baseline.
I can normally manage about three small non-strenuous tasks in a day (not counting getting up and dressed, having my hair washed for me, brushing my teeth etc). This is normally things like ordering something I need from Amazon (more on how I'm certain my postman is judging me another time), writing emails, reading, writing blog posts etc. Any more than that and (somehow) my mind gets overstimulated and I can't sleep, and, as you can imagine, sleep is pretty important.
I can manage about half an hour in the company of one person (who is not one of my parents) and then I get tired. It's roughly the same with video calling (although video calling is slightly easier). 
I'm still trying to work out how often I can do this. I tried twice a week but I could feel the warning signals start, the harbingers of doom that promise retribution if I don't stop what I'm doing immediately, so once I stabilise again I'll try once a week.

Essentially my life is like a very boring version of Groundhog Day. Which probably sounds really depressing to you, but I'm kind of used to it by now.
It still sucks, don't get me wrong, particularly as there's not a cure. You can improve and manage the symptoms given time, and sometimes it just leaves of its own accord (please, please, please!), but there are no guarantees.
But it's my life now, and as much as I miss that person I was (so, so much), there's no point wishing it had never happened. I just have to grit my teeth and try and work my way back up to 16%, 17%, 18%...

And hey, if all else fails, I could always try Bill Murray's way: kidnap Andie MacDowell and get a groundhog to fall in love with me... Wait...