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

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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.

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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

A Quick Shower in Bath and a Newly Painted Shed

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For some reason I’ve been putting this post off.  I’m not entirely sure why but hey and the ho, that’s how my brain works.

So.  On Thursday I finally had my appointment at the National Hospital for Rheumatic Diseases to see the Fibromyalgia specialist.  I’ve been waiting a very long time for tis appointment and was quite happy to travel all the way to sunny Bath to actually see somebody who doesn’t look at me with suspicion when I mumble the words “Fibromyalgia” at them.

I took my Mum.  I’m not ashamed of that, a 30 (nearly 31) year old woman taking her mummy to the doctor with her.  To be frank (I’m not Frank, I’m Joy-Amy), if I’d have had the chops to do it I would have been carrying my teddybear and clutching a sonic screwdriver for support.

The journey was nice, caught up with Mum and found out some interesting info and Interpol and her being banned from Africa, but I was so damn nervous. Why the hell was I nervous?  Because I had the fear. You know the one where you think they will look at you and say “There’s nothing wrong with you, you’re making it all up”. Worse still, I had the hope. You know the one where they look at you and say, “I know how to make you better.” Hope is always the worst.

Consultant was a very nice chap, we had a long conversation about my symptoms and how I deal with them.  He told me that I have a  90% chance of having another serious bout of depression (way to go the chirpy route doc). But screw the system, I know the signs, I know what I have to do and I know I have a million brilliant people who will help to pull me out of it. So that’s okay, I kind of knew that one anyway.

He asked me to strip down to my underwear. Which I did. It didn’t match. I always forget to make it match, am I supposed to do that? Women in films always seem to have matching underwear.  Mine only matches by a happy washing day accident. 

I decided to take my socks off as well. I know it’s not a romantic situation and my underwear (and my socks) don’t match but a girl should have some standards.

Which of course prompted my Mother to start telling the doctor about how I have always had Piggy toes. Brilliant.

Lot’s of poking and prodding later (that’s what she said). And I got to put my togs back on.

He told me he wasn’t going to put me on any of their coping courses because a) I hate group sessions and b)It would be preaching to the converted. I’m already putting in place the things I need to do to keep going, I just need to focus them better. Gentle exercise should be every day if possible and (here’s the tricky one) I need to be doing as much on my Bad days as I do on my good days. Jaw drop.  So on the days when I have energy to do the things I want to do, I have to pace myself, and on the days when I can’t really move or think, I have to force myself to keep going and do something. That means working out a routine, I hate routine, it kills the creative mind. But if that’s the way it has to go then so be it.

The other big thing is that I need to see a psychologist. The Doctor said that I need them to help me develop a healthy coping mechanism and pain management so that I can keep working and keep fighting. So Psych here I come to let you play with my Zombies.  Of course I have to be referred by my GP and I can’t see him until 7th August but that’s the NHS for you.

By the way, the Arthritis UK have an amazing Booklet on Fibromyzombies which explains it so clearly I think I might order a load and hand them out! You can actually download a copy if you fancy it, it’s on the right hand side, halfway down at this site http://bit.ly/JjEqyg.

Now Mum came out with a question I didn’t think of asking when in fact it’s the most important one.

Is this condition progressive?  Will it just get gradually worse over time?

His answer?

No.

He said it goes in cycles, good patches and bad patches. But how you handle the bad patches will dictate how long they last.

This is actually the best news ever.  I am not completely at this thing’s mercy, frak you Time, I’m working in cycles!

Afterwards I, obviously, cried.  I went and cried in the ladies loo and then I went outside and stood in the fresh summer rain in my t-shirt and let it wash my face.

I cried out of frustration that there was no little pink pill to make me better, that they had no course for me to take. I cried because I know I have to change my whole outlook on my day to day life which is no small feat.  I cried because my Mum had to hear the truth about how my life is when I try to shield her from it.  But mostly I cried out of relief.  I cried because finally, after ten years of knowing I have this thing, I got to talk to a professional, who knows what they are talking about, who took me seriously, who didn’t think I was making a fuss, who didn’t say I was making it up, who took the time to check me over, answer my questions. Pretty much I cried out of joy for the validation.

Mum killed my fibro diet for the day by buying me a cup of tea and a Cornish pasty so I could calm down a bit and then we went for a wander around the shops for half an hour before the train home.

I’m still feeling a bit emotional about the whole thing but I’m starting to put in to practice the things that he said (not all of which I’ve put on here because it’s only relevant to my case I think).

This weekend, DRC (My long suffering but always smiling boyfriend) and I took all the crap in the garden (sorry, dump) to the tip, then on Sunday, with some happy helpers, we turned that damn dump in to a garden. I’m so happy to have that space outside and even better, I took the Doctors Advice to heart and though I worked hard I didn’t overstretch things.  Do you know what? I feel okay today, a little achey but not completely drained because I didn’t go nuts yesterday.

Hopefully it’s a sign of what’s to come.

Sorry for such a serious post, Sometimes you just need to spout the brain curd. I just thought it needed to be written.

Keep on keeping on kids,

Jiggers

xxx

A Quick Rant then by No Means Defying Gravity

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I just can’t read Fibro websites anymore. I’d like to but I can’t.  Do you know why?  They are written by people with Fibromyalgia, for people with Fibromyalgia. It doesn’t help me, all it does it make me think “It’s this what I’ve got to look forward to? Will I be compiling poorly thought out websites and newsletters with pink edges and pictures of skinny people holding their foreheads?”

Nope, not doing it. 

What I want is probably impossible.  I want to talk to somebody who doesn’t have fibromyalgia but understands it properly.  I don’t want to have to feel guilty about talking about something because somebody else has it worse than me. I don’t want to feel like I have to apologise for being of the opinion that if I can drag my sorry (but very pert) backside to work then I frakking well will do.  I don’t want “Yeah, I get that, I put moss on it and nature heals me.” I want someone to just listen and know I’m not exaggerating, or making it up or trying to “out sick” somebody else.  I don’t want to sit in a group of people who are all like me because what will I do? I’ll try and look after them, and not hurt their feelings and be all “Yep, you’ve definitely got things worse than me”.

This week I’m being made very aware of my limits.  I’m putting everything I can in to working on Avenue Q and it shows in the rest of my life. I’m having to say no to something that I really want to do because I just don’t have the spoons to do it. I’m getting really frusted.  The more I do Avenue Q, the more angry I am that if Cameron damn MacIntosh walked in to a rehearsal and said “Joy-Amy, I need you to come and be Elphaba in Wicked”. I would have to say no. Or if I said Yes it would be in the knowledge that any other aspect of my life would be over and I would just be a puddle on the floor when not on stage. And probably being housed by the NHS in two months.

Do you know what is a horrible thing to admit?  How insulted I get when people say “you’re naturally talented.”. Yep, I sound like a bitch, right? But look at it this way, I am in no way naturally talented.  I started to sing when I was little and I was kind of sweet and I thought, I want to be good at this.  And I wasn’t.  I made myself good.  I worked at it, I took choir sheets home and I taught myself to read music and how to breathe and I pushed for it.  Quick at learning lines?  That’s because I spent years and years working out the best way to put them in my head. I am not just good at things, I work at them.

So when somebody asks me if I pop along and sing a few songs for them, I really really want to.  But behind that for me is hours of work getting it right, I never just rock up and see what happens. And for me, hours of getting it right is too much for me to handle.

So learning my limits is stinging me right now. Because right now what I want to do is curl up in bed beside DRC and sleep whilst also wanting to leap about and dance and feel refreshed and hell, even cook a meal without feeling exhausted afterwards.

 

A bitty post, I know.  But I feel bitty today.

xxx