Showing posts with label achievements. Show all posts
Showing posts with label achievements. 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.


Sunday, 6 November 2016

A Busy October and a Surprisingly Okay Sickmas

Hello my lovely loves!

It's been a little while since I've been able to write a post beyond a few words, and I miss it more than I thought I would!
This last month has been intense, and, to be perfectly honest, I was a bit nervous about how I'd get on, but it's actually gone pretty well!

October's always pretty busy (it's my birthday on the 6th, so there's usually a lot of excitement, and often visits from people), but this year was extra intense. Visits from family, a wedding via Skype (plus the emotions of not being able to go myself), a home visit from one of my many medical professionals, Christmas card making and Halloween Costume Funtimes meant that I had to be very, very careful indeed.
I had to make sure I didn't have my my usual hypnotherapy and counselling sessions for the whole month, just to make it even slightly possible. But, to my surprise, I managed every single thing bar one family visit, and hopefully that'll be happening soon!

I'm not going to discuss the month in too much detail (and you already know at least part of it, as I've already posted about the charity Christmas cards I've made), but the main things were; I turned 30, I had a home visit from my ME specialist nurse, and I had my anniversary of getting sick (which I usually call Sickmas) on the first of November. I feel like those all tie in pretty closely, because they're all things that make me look back on my achievements in the last year or so.

Last year, all of these things made me feel pretty awful. Although I had managed to stop my ME/CFS worsening, that was pretty much all that could be said. I had to cancel creating Christmas cards to sell, which made me very low, and, while I'd won the Midsomer Murders Cluedo competition, that couldn't stop the first anniversary of being housebound, and the 3rd year of being ill, hitting me pretty hard.

This year, I've managed to achieve a lot, lot more, and it feels wonderful. Don't get me wrong, I still had a few rounds of tears; while my friends do amazing things in their careers, visit wonderful places, get married, buy houses, and have children, I'm stuck here unable to leave the house, and on occasion my bed, and that feeling of being left behind hurts like nothing I could possibly explain. 
But comparing this year to last year? (Which, by the way, is otherwise known as comparing my sick self to my sick self instead of to my well self, or other people.) In that case... I'm kind of rocking it.

Mum and I made a list of everything I've achieved this year. It's not been easy, and of course every single thing has had Payback following it, but I've managed it. 
I've had some scary moments where I wasn't sure how I was going to make it through the Payback (after my birthday, which I dressed up for, I had a day where I wasn't sure I was going to be able to wash or not, and that was absolutely terrifying), but... I did get through it. And all without leaving the house.

So... well done me. And thanks to you all, for supporting me. There will be more posts to catch up on most of the individual things, but until then, I hope you enjoy looking through this list.

H


Bounced back from blood drain relapse

Embroidery for Catie and Ben


Making Tiny Hannah 


Making Tiny Hannah introductory video


Sending TH on adventures to Edinburgh, Derby, London, Richmond and Venice (posts to come)

Joining Elevate, the local ME group, via Facebook


Taking part in Millions Missing (blog post to come)


Interviews with newspapers for Midsummer murders Cluedo (fame!)


Taking part (and winning) top vintage competition and therefore... 


Winning my friends a honeymoon to Venice


Managing to create Christmas cards


Writing a poem for my friends wedding (blog post to come)


Writing an article for the Telegraph (fame again!)


Being quoted on BBC radio Scotland (fame some more!)


(Getting a request from the Jeremy Kyle show - and avoiding it)


Being featured on The Mighty (that fame, it just keeps on coming)


Writing a post for the ME Awareness blog, that then got featured on the ME Action website

Creating a Maleficent Halloween costume


Finishing and giving the Dear Ethan project books to Ethan and Kerry


Becoming more positive


Helping to design my mum's studio


Spending one night on my own in the house (bigger deal than it sounds)


Learning to make corn dollies


Successfully having one visit per month from a friend


Skyping my friend's wedding


Watching the whole of How to train your dragon 2 (in stages)


Advised other sufferers of ME


Joined the Chronic Illness Bloggers via Facebook


Did a product review, like a proper blogger


Worked on my blog 


Worked on my calligraphy and lettering skills


Used the sewing machine once (without wearing ear defenders!)

Dropped down my antidepressants by one quarter


Had one shower (they became extra difficult after the Blood Drain for some reason, so it was sink washes and weekly/biweekly baths for some time)


Dressed up for my birthday


Carved my first pumpkin since 2013!


Read an actual book


Learnt to say "no"


Learnt to say when I'd had enough and trusted that my friends would be happy with this. (Thanks, guys.)



Wednesday, 26 October 2016

Achievement Unlocked! Christmas cards

Hello my lovely loves,

I'm very proud to say that this year I've managed to make some Christmas cards to sell. 

Even though I had drawn out designs last year, I just wasn't well enough to to go through with the level of work that's needed to actually needed to get it done. 
But this year? I did it! And I can't tell you how much it means to me to be creating and publishing art again. 
I'm still not ready for commissions, but if having a chronic illness has taught me anything, it's that there are ways to do what you want without jeopardising your health, and you should bask in them.

I've been working on my two designs all year (slow and steady!) and I created an angel themed one, based around the hymn "Hark the herald angel sing" with a quirky, musical change to the lyric (and a guest appearance from a cute Elvis-styled Baby Jesus), and a Home Alone one, with items from the first two films incorporated into the design.

Both designs are wraparound pieces, so they cover both the back and the front of the card, and there is a printed message inside each as well.

10% of the profits will be going to the homeless charity, Crisis. I always give to them at Christmas anyway, but this year I hoped I'd be able to add onto my normal donation.


The cards are now on sale on my Etsy shop.

In fact, I've not had time to write this post because they're been selling so fast! I'm afraid all the packs of 10 have sold out already, as the angel-only packs of 6.
There are still plenty of 6 packs of mixed designs, and Home Alone-only packs in 6 and 10. 
Single cards are available in both designs. Head on over to snap some up before they go!

There's also a separate listing for those who wish to give an added donate to Crisis on top of the 10% of the profits I'll be giving.















Wednesday, 7 September 2016

That time I was in The Telegraph

Hello again,

Just a brief note to, firstly, say that I wrote an article that was in the Telegraph this week. Link here. It's entirely possible you already know, either because that's what led you here, or, more likely, because I told everyone I know.
It's a bit strange trying to pare down your situation to 700 words, but I'm pretty pleased with the results, even if the editing took out my favourite line!
I do feel I need to say, however, that I originally made sure to say outright that mental illnesses are real illnesses. It's just that my illness is physical.
The final edit still implied that view, but I think it's important to reiterate that.
I didn't have space to go into the importance of psychological tools in managing physical illness, or the psychological symptoms/tag-alongs of the illness (anxiety etc), and, honestly, I was worried it might muddy the waters on my views about ME/CFS.
ME/CFS is physical, we know that and we have proof, but having a chronic illness plays merry hell with your emotional and mental state, and it's important to make sure that side of your recovery or management is supported. I Skype regularly with both a psychologist and a hypnotherapist and I find both of those things immensely helpful. (Plus they're both really nice.)

Secondly, I'd just like to say thank you to all the responses I've had from people. It's been a little overwhelming and I'm not sure I'm going to be able to respond to everyone (I will try, but no promises!), but please believe that it's very much appreciated.
I will also definitely take the medical suggestions under advisement, but I am currently with the Optimum Health Clinic, getting advice from a nutritionist, and under the care of the local NHS ME/CFS clinic, so worry not, I'm not languishing in the way you might think!
The article was the bare bones of my situation, and yes, my situation is worse than others... but better than some! I'm doing well and I have been slowly improving since I first became housebound.

If you want to continue to follow the discussion on the recent research that shows similarities been sufferers' blood and hibernating animals, there's a radio piece on today on BBC Radio Scotland on the Kaye Adams programme. I think it's around 11am but I'm not positive.
They did ask me to join in via phone, but unfortunately the excitement of the article being published (and the payback from writing it in the first place) have meant that I can't be involved. They might quote my article though, so that's pretty exciting.
As far as I'm aware, Dr Shepherd, the medical advisor for the ME Association will be talking, so it's likely to be good.

Until next time, I'm sending you lots of love.

H

Wednesday, 27 July 2016

A finished Birthday present (includes a GIF)

Hello my lovely loves!

Just a short one today, as I'm recovering from my latest friend visit. This time from my lovely, honorary sis, Catie.
You may remember that Catie is getting married this year, and I won her and her hubby, Ben, a trip to Venice for their honeymoon (hooray!).
Before I knew about that, however, I started making them a cross stitch to commemorate their wedding day, and potentially display on the day if they wished.
Since we can safely say that I now have their wedding present covered, this cross stitch became Catie's birthday present, and I gave it to her during her visit.
It took my just under a year, but I'm really pleased with how it came out (and the neatness of the back!!). If anyone's interested, the pattern was from an excellent etsy shop called Stitchrovia.

Enjoy.

H



Look at how neat this bad boy is!


Tuesday, 26 April 2016

Weddings and Winning

Hello my lovelies!

Sorry for my absence, the top secret project I mentioned before is in it's final stages now, so that should make things a bit easier. I've also been drawing a bit more, which has just been FANTASTIC.
I can't tell you how wonderful it is to feel able to do that.
After a bit of a splurge where I got very excited about the whole thing (and its corresponding payback), I've limited myself to half an hour a day, and that's meant that I'm able to do some fairly regularly, without overtiring or overstimulating myself.
This small but meaningful victory has meant that I felt able to enter another competition.

Like many of my wonderful friends, my friend, Catie, has been incredibly supportive throughout my illness. She and her fiancé are raising money for ME Research UK this year for me in the Leed's Gung Ho event (5k of inflatable obstacles, and decidedly not for the faint of heart).
There was also that time I freaked them both out good and proper by having an emergency shutdown at their house that was so severe my parents had to drive to London from Norfolk to come and get me. Oops.
Unlike many of my friends she's also getting married this year, and, if I was well, wild horses couldn't keep me away.
Unfortunately, I'm not well, and even though I'm due to be a bridesmaid, we've had to slowly let go of the dream that I'd be able to make it in person, unless there's some kind of minor miracle between now and October. There are video calling based back up plans, of course, but it's been pretty hard for both of us.

When I saw a competition on Top Vintage's website to win a vintage style swimsuit and a holiday I was all for it. I couldn't go on holiday (although I'd happily take the swimsuit!) but Catie and her hubby Ben could.
So I did a bit of surreptitious digging to find out where they fancied going and created the following image...


A few days later, to my absolute astonishment, I found out that I'd won and that I'd be sending Catie and Ben to Venice for a week for their honeymoon!!!

Telling your friend that you've won them a honeymoon is pretty much the best feeling ever.
I (somehow) managed to keep it a secret for the five days it took for the win to be confirmed and for Catie and Ben to be free for a video call at the same time.
(I say I kept it secret, I compromised and told several of my other friends in the hope that it would stop me exploding with excitement. Fortunately, it worked.)

Their reactions were fantastic. I'd tried to record it, but had technical difficulties, so you'll just have to believe when I say I've never seen two people more blindsided. Once it sunk in, they were ecstatic, and now they're really looking forward to it.
I can't tell you how much it means that I've been able to give them this, especially as its so unlikely I'll be able to make it in person on the day of the wedding, so a heartfelt thank you to Top Vintage for making this possible.

Not having to look for a wedding present is pretty fantastic too.

If you want to support Catie and Ben's Gung Ho adventures (because why wouldn't you want to support people raising money for a good cause in the style of It's A Knockout?) then this is the link.

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.