Awareness What Now?

So yeah, apparently it was Fibromyalgia Awareness week the other week and it passed me right by. I saw nothing on the internet or in the media and I’m not even someone who needs to be made aware. I’m pretty damn aware.
So I made a video, it’s longer than I would normally do a video but there was a lot to fit in. Even missing out all the emotional stuff that goes along with it.

Anyway, it would be great if you could have a look, let me know what you think and perhaps share it with other people.

Fibromyalgia/MyZombies

Stay happy people!

xxxx

http://bit.ly/1wTQihH

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Be Kinder to yourself (the empathy, not the chocolate egg)

 

kinder-eggs

Although I suppose there is a benefit to unwrapping your outer foil and exposing the fun time childhood wonder within. Wow dude, that was deep.

What I’m actually saying is it’s time to focus on the things that you can do rather than the things that you can’t.
I’m never going to be in a position to do EVERYTHING that I want to do in a week. My health will not have it and if I do that then I will achieve nothing in the next week because I will be collapsed halfway down the stairs watching the iPad because I can’t make it to the television. #first world problems.

But do you know what? The things I CAN do, they are some real achievements.
Sometimes I’m going to have days that largely involve DRC’s dressing gown, Star Trek TNG and crochet.  During that day I may send one email to a potential client or cut up a couple of flyers that I’m going to send out. On those days, I achieve more than I could ever do on the days when I feel fit and healthy. Why? Because I haven’t given up. I have said “Yep, this is a day that I need to look after my health and I am not giving up. If I can do just one thing to move myself forward then I’m doing awesome”. Yes I’m aware of the grammatical issue there, shut up, I’m a cripple.

And I am indeed, awesome.  No power in the ‘verse can stop me.
I’m learning that pain shouldn’t be in your brain.

Yes, I know that rhymes, I’m frakking poet. The rhyming kind.
Today is a good example (not of rhyming). Today I am in pain, rather a lot of pain and I’m finding movement kind of hard. But if you accept that this is the situation today, you can still have a pretty nice time. Just because your body is screaming, doesn’t mean you have to focus your thoughts on bad things that make you unhappy. Yes, I know that is very hard to put in to practice and sometimes I can turn in to an unholy Kaiju megabitch because of pain, but practice makes perfect. So I choose happy. I choose to look at the things that make me smile and to tell myself (yep, out loud) “Well done kid, you nailed that” (yes my inner pep talked is voiced by a 1980’s movie basketball coach).

Next week I know is going to be tough on my health. As well as teaching a couple of classes, I’m covering for DRC’s folks while they are away, I have a session with a private student, rehearsals and performance for Knowing Smirk, a rehearsal and performing with Hard Stairs (great band, check them out) and then it’s my birthday.  It will be a good test of how I deal with relaxing between things. Something tells me there will be the smell of incense and the sound of plinky plonky music coming from my room a hell of a lot!

SMOOSH WARNING

I am extraordinarily lucky to have someone like DRC sharing my house and my life, he gets that when I get tetchy because of pain, it’s not him I’m angry at. He is patient with the fact that I am trying to run my own business but some days I am not as able to work as others. He is supportive of anything I try to do to make me happy or improve my health. That boy is dynamite (tee-hee).

Anyhoo, it’s probably time to get in the bath and do some scrubbing.

Warm and Fluffy Feelings (or in the current heat, maybe cooling and ice-lollied feelings)

Jiggers

xxx

The living dead blog and medieval battles

image Rumours of this blog’s death have been greatly exaggerated.

So I have decided to resurrect this lovely blog. Not that I intended it to die in the first place, time just….. Got away from me.

So at the moment you can find me trying to work for myself. Yep, freelance drama tutor, team building and Ann Summers party planner. Recent experience has taught me that Fibromyzombies is not compatible with a standard job with standard hours and standard folk who just don’t get the “yes, I know I don’t look ill but trust me, I am.”

It’s a bit of a struggle at the moment, getting a business up together from scratch is a lot of work and I’m probably working harder now that I’m self employed and earning nothing than I did in an office. But I’m looking after myself properly, I’m doing my relaxation techniques (everyone cross your legs and go Ommm) and my yoga (downward facing Yorkshire terrier). I’ve even started doing the juicing thing….don’t run away from me! It’s really good for my IBS and I really do think it’s having a positive effect on my energy levels.

I’ve just been on a five week course on Living with Fibromyalgia and CFS run by fisher price…..I mean the NHS Let’s Talk program. If you get a chance to do it pickle, go for it. Honestly, this stuff is so helpful and I feel like top of the class because I did the pilot phone scheme. They took my moaning about the fisher price guide not being appropriate and turned it in to something that can actually help folks like little old me.

I am a bit zombied up at the moment but I’m trying not to let it get me down. Had an awesome time walking round the Tewksbury Medieval Festival, although the leggys were rather complainy, I just told them to be happy they weren’t having to walk around in full armour in the scorching heat.
There was a reenactor who was obviously suffering from heat exhaustion and the paramedics were trying to sort him out when one of them declared “Ahh! I don’t know how to take off armour!” At which point a peasant handed his dog to the person next to him and got stuck in. I’m not being insulting by the way, he was actually dressed as a medieval peasant.
I hope that paramedic now knows the appropriate way to dis-amour a medieval knight, just in case he finds himself in some sexy games of thrones type situation.

I could have spent sooooooo much money if I’d had any.
I also kept bumping in to lovely people that I know, and even a couple of people who seemed to know who I was but I hadn’t the foggiest who they were. They were very nice though. I was going to blame my lack of knowledge on fibro fog but the fact that I still haven’t worked it out probably means that I am just a bit rubbish at recognising people when they aren’t wearing the clothes they normally wear.
Did you know that Brad Pitt is face blind? I shit ye not, go forth and google.

Quivers and bracers
Jiggers
X

Doom can Do One. In fact, it can suck it.

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We are going to be okay.

That is the thing that I’m humming around my head at the moment. It seems like everything is going no-where at the moment, the cloud of doom that follows this pixie is turning in to a full time stalker.

However, frak that for a game of soldiers.  I came to breaking point yesterday, I’ve had enough of gloom and despair and hopelessness. I want sparkles and skipping and singing the wrong words loudly.  So I’m not going to do it, I’ve decided doom can naff off and bother David Cameron instead (let’s face it, the dickweed deserves it).  Instead I am going to move forward in tiny, dolly steps, spreading random bits of glitter as I go, but at least it will be FORWARD.

I’ve started Yoga *pause for effect* NO really, I’ve started yoga. *pause for gafawing* It’s a 6 minute routine, which probably sounds like nothing but with the zombies I’m just happy I can exercise without my legs falling off.  So every morning I get up ten minutes early and say hellooooooo to the sun (minor Black Books Reference there). I’m shit at it of course, I have the flexibility and range of one of those twig dolls from The Blair Witch Project. In fact my downward facing dog looks like Wee Jimmy Krankie fell over in a park. But the point is I’m trying, maybe six minutes will turn in to ten someday, who knows or can dare to dream? But it’s helping with the pain stuff so screw it, yoghurt munching yoga freak it is.

Soooooooooo my brain farts (fibro fog if you have to be that way) have been really bad the past few weeks, to the point where I’ve spent half an hour trying to remember what my boyfriend’s name is, or my pin, or where the car is.  Other times I just blank out altogether or it drops out for a second (like when you fall asleep on the bus and the motion jolts you back awake instantly). So I went to see the Roger, the nice Mr Doctor Man. We like Roger, he sings bits of Avenue Q when I walk in. Roger has giving me some anti-depressants. Not because I’m depressed but because of the way this particular one releases serotonin and helps improve concentration.  I’m never keen on taking too many pills but I’m not in a position to be fussy right now so we’ll see how they go. I’m must rattle when I walk these days! Shake it baby! The rattle certainly isn’t money, the prescriptions have nicked all my cash!

I was supposed to have an appointment with my Fisher Price Mental Health Guide yesterday morning, he didn’t call, he said he left a message, there isn’t one on my voicemail.  Then this morning, he called and said we’d have to move it to tomorrow. Now I’m going to have to call and say no because I have tests tomorrow morning. All to talk me through a booklet that has nothing to do with what I need.  He is a sweetie, but I get the impression he’s clutching a teddy bear for support whenever he phones.  I was referred to psychiatric to help me cope with pain management better. And what they’ve done is sent me the Fisher Price Guide to Mental Health (thanks to Anne for the picture) for people suffering with depression for the first time.  Now firstly, this is not my first rodeo by a long shot, me and the D word go waaaaay back *waves at Brian from a safe distance*.  Secondly, I’m not depressed right now, I’m struggling with managing my condition in a manner which doesn’t corrode my mental health and relationships with others. So telling me that making myself look nice will make me feel better doesn’t quite cut it. 

But it’s coming up to Christmas now, my favourite time of year with the Christmas tree and decs up. Plus I don’t have a telly box ( I live on Netflix and iplayer) so no one can subject me to soaps over the Christmas period or endless tesco adverts.  Adversely of course this means I have to wait until boxing day for Doctor Who…..

*Ponders*

Maybe I’ll nip out and get freeview…..

(extra) Warm and (glittery) fluffy feelings

Jigwam

xxx

VWRORP, Oods and Wibbly Wobbly Brains

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Yep, it’s been a while again hasn’t it. *slaps wrists*

I’ve been busy. Yes I can hear the groan of “So what else is new” coming from the back, so stop it, I know I’m a glutton for punishment!

 

Actually, this weekend I’ve been playing the wonderful Donna Noble in OFSTAGE THEATRE’s Doctor Who parody at the Avoncroft museum Doctor Who day.

BEST.DAY.EVER.

You can probably tell from the picture with the Ood. I bloody love an Ood, they are immensely cuddlable. Shh, yes that is a word.

Image

 

I wish that could be my job, pretending to be somebody else and making people smile, what a lovely job that would be. Maybe with a slightly less itchy wig, although with the wig comes the accent. It’s like I put on the wig and it injects my poor brain with the hint of a bossy, Chiswick accent. Oi Spaceman!

It looks like we’ll get to do the play again at the Cheltenham Brewery on Saturday! Not only is it the switching on of the Christmas lights, but it’s also the day of the 50th anniversary episode! Woo hoo!

Anyhoo, I’ve been feeling rather painful lately, but it’s having an odd effect (rather than an ood effect).  Because I’ve been doing this NLP (Neuro Liguisting Programming) course I’ve been trying to apply some of the exercises to myself. This has resulted in several days of being in pain, but being HAPPY. *blinks* The idea that pain doesn’t have to be the be all and end all of my day is a really great one. It’s something that needs work I know, I have been pushing myself a little too hard because of it, but I think it’s a great step forward.

Did you know that you’re brain doesn’t process a negative? So for example, saying “Don’t drop that tray!” Is going to put the idea of droppage in to the person’s head, but if you say “Keep hold of that tray!” They think about holding it. See?

So I’m trying to get rid of the word DON’T in my head. Instead of saying “I don’t want to hurt anymore, I don’t want to be so tired all the time.”  I’m thinking “I want to be well, I want to feel awake.”

It’s quite taxing on the brain at the moment, but I think once it’s programmed in properly, it’s really going to make a difference.

Unfortunately today my brain just cannot stay focused.  It keeps slipping away from me, someone removes my ability to see the words on the screen and to grasp the thoughts I’m looking for.

You know that feeling you get when you stand up too quickly and you brain offers you the opening sequence to any 1970’s sci fi show? It’s that.

If I could go home and close my eyes, that would be amazing. My kingdom for enough cash to have a part time job….. 

Warm and Fluffies to you all, and have a great Doctor Who Day

 

Jigwam

xxx

Blips – National Mental Health Day

It’s been Mental Health Day this past week, so I thought an honest little post like this would be appropriate.

Today seems to be full of I can’t. Do you ever wake up like that? I think that bad dreams have made me this way today. Although my mental health seems a little dodgy at the moment.  I threw a blinding wobbly tantrum when I got a tiny bit of white paint on a newly painted purple wall and once I’d calmed down I wasn’t really the same for the rest of the day. And then I crashed heavily, I lay down on the floor and slept, having visions more vivid than dreams (can you hallucinate with your eyes closed?). Although part of the visions were of a version of myself, looking down at me. A prettier, thinner, more confident, meaner version of me. Laughing at me and making fun, telling me to stop being so pathetic.  She was at the top of a stairwell, the kind you get in schools  or blocks of flats that go up and up and she was with someone else who I could quite see but I could see the dark, lank hair, long hair. I’m guessing it’s Brian.  Brian used to be the little voice (or in my case, LOUD voice) that would tell me I wasn’t worth anything.  I don’t listen to him anymore, I seem to remember setting him on fire and locking him in a box a number of years ago (sounds drastic, I know, but the imagination is a powerful tool and if it works for you, use it). But yes, I guess it might have been Brian.

I’m so scared of this kind of stuff pushing other people away, especially DRC (although he doesn’t seem very pushable and on this occasion he wrapped me up in blankets and brought me my teddy bear). Not when I talk about it, which I’m happy to do because you never know who is going through the same kind of thing and would feel less alone by hearing it. People should talk about these things, it makes them less scary. It’s just when things actually happen and they are there to see it, that’s when I’m afraid I’ll push them away.  I’m lucky enough to have some amazing friends who are awesomely supportive when I get days like this.  And it is just days like this now, little blips. It used to be unfathomable, constant, daily.  But now I can hold on to the fact that when it happens, chances are it’s just a blip and I will come out of it.  There is a feeling of shame afterwards, which I shouldn’t feel. Do you feel ashamed when you’ve broken your leg? (unless you did it fall off a mechanical bull at a party) No. Then I shouldn’t feel ashamed by a chemical imbalance. But somehow I still do and feel the need to say sorry. I’m sorry I was crazy, I’m sorry I shouted, I’m sorry I slept at you when I should have been helping.

I’ve had an amazing weekend and at times I’ve felt so happy I could burst.

I’ve just been punched in the face by bio-chemistry.

 

Stay healthy and eat Jelly Babies,

Joy-Amy

x

Everything in Life is Only For Now

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Well hello there! It’s been a little while hasn’t it!

I have been a busy little thing what with going on holiday (If you’re really lucky then one day I might tell you about our 12 and a half hour delay getting home, lucky you!) , getting regular person sick in the form of a lovely Tunisian bug (No, he did not pay his air fare) and then doing Avenue Q (Your friends do too!) and the last Off The Cuff (The lift reached maximum capacity and we all died).

Yes. BUSY. 

But HAPPY.

 You see, I often get a lot of schtick from people who tell me that I shouldn’t be doing shows with my Fibromyagia because it makes me worse. Hmmmmm. Well actually, (excluding the Tunisian bug thing the week before the show, which was Lord VILE) I felt more alive than I have in a long time. I was Tim Robbins crawling out of that sewage pipe and basking in the glory of the rain. Was it tiring? Yes, of course it was, I had my hand up a puppet’s jacksy trying to emote, sing, dance, climb over scaffolding and attempt to be funny yet fluffy.  ANYONE would find that tiring and indeed they did. But do you know what? It’s like a sudden rush of adrenaline and energy that keeps me awake beyond my usual 10pm slump, my brain felt switched on and alive, I felt like I could be witty in conversations again and actually *whispers* join in….

It was my awesome friend Draco who put it best, he said “It’s like I’ve got my old Moony back.” And indeed he had. I felt like myself again. Confident and willing to try things that the Fibrozombies try to stop me doing.

I had only one minor Fibro issue on the final Saturday, I’d had a stressful morning and we had a matinee and an evening show to do and I was late to the theatre (I like to be early so I can do my “I’m in my twenties, honestly I am” make-up and faff with my microphone).  After I’d finished the first Act of the matinee performance with Fine Fine Line, everything went a bit funny in the backstage corridor (not a euphemism so stop laughing you naughty things) and I sank to my knees (again, stop laughing, you are just rude). Pretty much instantly there was a member of the cast sat next to me, holding my hand and saying very calmly “You’re okay”. I don’t think I’ve thanked him properly for that, he was amazing and so calming. Actually, the whole damn cast have been amazing about the whole issue. Helping me when I need help or just leaving me to get on with it when I need to do that.  But I got over it pretty quickly and off we went with the rest of the show.

I just…..I want to be doing this for a living. This show was incredible, it’s a sin that these chaps aren’t being paid to do it because they are incredible.

I miss them terribly, my little furry family. 

I would give anything for that to be my life. Performing makes me feel like Joy-Amy and it makes me feel so much less……zombied. *sighs*

Of course it hurts, that’s the nature of the beast, but so does working in an office, that hurts too and if something is going to hurt why not make sure the thing that you are doing is worthwhile?

Maybe, someday I will make it happen.

Love to my muppets and humans, 
x