There’s a Fine, Fine Line

soapbox

Hello, I’ve got Fibromyalgia.

Why am I telling you? Do you know?

I really hurt today and I getting some bad formication (that is when it feels like your skin is crawling with ants.

Why am I telling you?

Because I’m surfing the fine line that anyone with any kind of illness, whether invisible or otherwise surfs on a daily basis.  That is the fine line between moaning about my lot and raising awareness.

 

Anyone who knows me (or indeed who has met me briefly) will know that I am one of life’s soapboxers. I carry my little box with me wherever I go, I’m the kind of person that lectures children when they use the term “That’s so gay” and has even been heard to yell “I hope your Mother is proud of you!” at people as they walk in to the pop up strip clubs that appear in my town during Gold Cup week.

My illness is as invisible as Harry Potter in his fancy cloak.  You can’t really see it but if you look closely you will notice that something is ‘off’.

When I post things on social media about Fibromyalgia or how it makes me feel, I’m not trying to say “Look at me! I deserve your pity!”, I’m mostly trying to say “Do you feel like this? You’re not alone, this is a thing. Does someone you know feel like this?”.

Yep, there are days when I just need to say that I feel like shite and I could do with some virtual hugs. I think we all do that on facebook and the like.  It’s a pretty useful way of being able to let the world know that today might be a good day for dog memes and words of encouragement.
But I really hope I don’t spill over in to the moaning category. I go through phases of posting either videos, articles and things about Fibro because I get passionate about wanting people to understand. Not necessarily to understand my case in particular but the condition in general.  I sometimes delve in to Fibromyalgia support groups online and I’m saddened by how some of these people are treated, how alone they are.
I am extraordinarily lucky to have a really supportive group of people around me but so many people don’t have that and by spreading awareness of what it means to have an illness like this, perhaps someone might pull their socks up and think “Wow, I was a dick to Simone, she’s really going through something.”

 

 

I guess I shouldn’t worry about what other people think, but I do.  I try so hard not to give up and to just keep swimming and it only takes one person using the word “lazy” to really knock me down.  It shouldn’t really, I should learn to think “Fuck you Susan!” but sometimes it’s hard to do that.

On the flip side though, it only takes a small kind word to make me feel like I’ve successfully moved a mountain.  The moments of kindness that people show might seem tiny to them but to me they are just amazing.

An exceedingly lovely lady said to me the other day “I saw your Fibromyalgia video and I just wanted you to know, I get it.” I get it. On hearing those words I actually felt my shoulders relax a little. I felt a bit like I’d just cuddled a kitten.

This has turned in to a bit of a stream of consciousness, but it’s one of those days where my mind will do whatever the hell it likes!

So in conclusion, if it feels like I’m moaning, I’m sorry about that. If I’m sending information, give it a read and if I’m in pain……..maybe a picture of a cute dog? Or a racoon?

Warm and Fluffy Feelings
Jigwam

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A Fence Makes an Unsurprisingly Uncomfortable Seat

It’s nearly three years since I last wrote on this thing. Good lord. Well last night I couldn’t sleep and this was weighing on my mind so I wrote it down. As far as decisions go, it’s a pretty big one. It goes like this…

fence

I think I’ve been grieving for a long time. Not for a person but for a life that I never got to lead.
I had this plan you see, this dream for myself from such a young age and then Fibromyalgia came along and made it feel like an impossibility.
I’m an actor, I’ve always been one. Regardless of whether it was paid work or prancing around my bedroom with a hobby horse I have always been an actor in my heart.
But now I’m stuck.
I know that realistically this isn’t a thing that can happen because I can barely function on a day to day basis so how in the hell could I cope with doing 8 shows a week, every week? What producer in their right mind would employ a fat, disabled woman in her mid 30s? Scratch that; What producer in their right mind would employ a fat, invisibly disabled woman in her mid 30s? What can you do with that? I don’t even tick  boxes because you can’t see what is wrong with me.

It’s like for the past few years I been frozen to the fence I’ve been sitting on.  Sort of a mixture of partly having given up on myself and partly waiting around for something magical to happen.
I haven’t been prepared to make a move in either direction.  I’ve not been sensible enough to look at myself and say “That’s enough now Joy-Amy, you need a new dream.”, or brave enough to just say “Anything is possible if you push hard enough at it, regardless of your disability.”

So here I sit, endlessly teetering on the edge of the fence and not allowing myself to fall off in either direction.

My sensible friends would likely tell me to focus on one of the other aspects of my life that I’m good at and work on that.  They could be right, but the thought of letting myself fall backwards off the fence and letting the dream slip away all together feels like having to numb a part of myself that has always felt like home.

But the idea of falling forward off the fence and launching myself fully in to trying to gain a career that I always wanted is terrifying.  It’s not just that I’m terrible with rejection (which I am) but the admin is really daunting for me.  My brain is a huge mess of misfiring neurons and fibro-fog and setting myself a task like selling myself (which is what an actor has to do)makes me quake in my boots.
“Well get an agent and let them do it!” You might say. But how do you do that?  Things are very different now to when I was in drama school. My C.V probably doesn’t even make any sense any more.

Then there is the issue of money. I can’t get away with working a 9-5 job because of the unpredictability of Fatigue and Pain (capital letters), so freelance is the only option in order to deal with that really.  At least when I’m performing I can rest in bed for the majority of the day, then pull everything I have together, tie it up with string and red bull and get that shit done.

It’s a dream that hurts. So much. I’m well aware of how unlikely people are to succeed when they are fully at their healthiest, let alone falling asleep in doorways (and being a size 16 doesn’t do you any favours either).

Shakespeare wrote –

“This above all; to thine own self be true,
And it must follow,as the night the day,
Thou canst not then be false to any man.”

Hamlet Act 1 Sc3

And that’s the kicker isn’t it? The longer I sit on the fence, the more I find myself leaning backwards towards a more sensible goal and dreams that are actually attainable and may (shock horror) pay my bills.
But would I even be Joy-Amy? Could I ever say that I was being true to myself?
All I know is this, if I don’t pick one of the sides soon then I am going to spend the rest of my life trying to balance on a very uncomfortable fence with a very sore backside and an increasingly sore heart.

15 Minutes. Hell to the YES!

Bike race

Today……today I win. Because today I rode for 15 minutes on a proper bike.

Not in a gym, on a PROPER bike, in a proper park. So I frakking WIN.

Now, some people they might think, “So what? I go for hours on my bike! 15 minutes is like a trip to the shops and back, that’s nothing.” Ah, but that is for you. 15 minutes for me is a massive milestone.

I have not been able to ride a ride (or rather, I have been too scared to ride a bike) for, ooo, getting on for 10 years now.  But a while back my friend Rob was kind enough to give me a very good bike that he was no longer using so that I could possibly, maybe if I was feeling brave enough, give it a go.

AND TODAY I DID IT!

Now although I say 15 minutes, that doesn’t include the 40 minutes it took me to find my bike helmet. That means I had to search through our Harry Potter cupboard which contains everything under the sun (I truly am my Gandfather’s Granddaughter) and then another 20 minutes trying to work out how to adjust said helmet, work out I’ve got it on backwards and then readjust it again.

Then the 20 minutes I had to wait because the sky decided it hadn’t taken a whiz in a long while and pissed down like crazy. I could practically hear the clouds making that satisfied “ahhhhhhhh” sound.

Then the 10 minute walk to the park. Yes of course I walked to the park! If I haven’t ridden a bike in 10 years and I’m not sure my legs are going to do the thing they are supposed to be doing then driving on the road would not have been the brightest of ideas.

But I did it. I did it I did it I did it and I am so proud of myself.

And do you know what? I can’t wait to go and try it again.  I’ve been trying to do this thing for such a long time and I think the thing that finally gave me that push was my Grandad’s funeral on Thursday. It’s okay’s this isn’t going to get morbid, my Grandad was a fantastic man who liked to hoard things (as already mentioned) but he was also the man who finally let go of my bike after I’d had the stabilisers removed. Yep, I fell off when I realised he’d let go, everybody falls off and yes, he let go even though he said that he wouldn’t but somehow I still trusted him to hold on to that bike one more time and help me start riding.

I think it was talking about that on Thursday that made me finally get off my arse and on to my bike.

It’s a good job the park wasn’t too full, there weren’t too many people to see me cycling round and round in a sports helmet (Which was the only one they had a Tesco and I wanted to use my clubcard points) looking like a right numpty.

So achievement unlocked! *air punch*

Okay, so my limbs hurt and I’m kind of shaking all over but it’s a great step.

Warm and slightly sweaty feelings

Jigwam

x

Purgatory

What is the point of Joy-Amy?
It’s been a hard couple of weeks and I have another hard few weeks coming with the changing over of medication.
But to be honest, it’s been a hard six months or so.
I have no goals anymore.  I have no career aspirations, no pipe dreams and no romantic leanings. I currently just exist in my space. I wake up and think “I should get up.” And a voice replies “Why?”

I’m not saying that I get no enjoyment from life because I do. Well, not so much at the moment but that’s a medication thing and that will hopefully be sorted in a few weeks.  But I just seem to have no…….. point. No direction.

I’m not suicidal either. I have had moments of that in the past but it’s not that I don’t want to be alive. It’s that I do want to be alive and at the moment I don’t feel like I am.

I’m not sure how to find a goal.
Want to be an actress? You can barely cope with working part time.
What about doing voice over stuff? I have no money for soundreels or membership for the websites you need to be part of and no knowledge of how to get an agent. I’ve done so many voiceover things and short films with the promise of a copy for my showreel that has never actually turned up.
Look for someone to love? I don’t believe romantic love actually exists outside of films anymore.
Find a job that makes you feel like you make a difference? I’m a broken woman with Chronic Fatigue, my work options are really limited.
Find a way to make yourself healthier? Maybe this should go under the “Pipe dream” heading. I did actually buy a book about eating in a way that would help my condition. It was so complicated it was clearly written by somebody who either a) had the energy in the evening to cook this stuff or b) had somebody coking it for them.

I feel so damn lonely all the time.  I’m sure other people would love to be sat in bed at 10.30am writing blogs. All I feel is alone.

I know I try to make my blogs upbeat as much as I can. I’m afraid I have no beat to get up to right now.

I think I’ll go back to sleep now.

It Sucks be a Grown Up

Sometimes it is okay to not be okay. It’s okay to just have a massive tantrum and cry because sometimes, just sometimes, that is exactly what you need. My old therapist used to say that the things that have affected us in the past are like a poison that needs to be drawn out of a wound. It hurts like hell when you stick the needle in, but once it’s out you eventually forget it ever hurt that much.

I’m often terrified that people will realised I am not what I seem.  How the hell do I have a flat? Pay the bills? Interact with other people? What do you mean I run my own business? Are you CRAZY? I’m still a 12 year old playing scrabble with myself whilst listening to audio tapes of Fawlty Towers on an ex-school BBC tape player, with my hamster nestled under my chin.

I am not a grown up.

Now, normally I find this to be a good thing. I enjoy life much more and see fun and beauty in things that a lot of people ignore. If I’m in a maze then I going to be humming the Mission Impossible theme and jumping out at people with my finger gun or shouting “I must find the Tri-wizard Cup!”.  Most days this is great.

But then there are days like today. The days when it occurs to be that I am entirely responsible for my financial and medical wellbeing.  The days when you have to fight with HMRC and end up crying even though you were right and they have accepted that. The days when you think “Actually, I don’t know if insert any family member’s name here is okay. Oh, God, what if something truly terrible has happened?” and you can’t do a damn thing about it.

Weirdly, these aren’t the days when my Fibromyzombies are really bad. I think my concern for the fire going on in my body and brain distract from the everyday worries of a grown up.  Annoyingly this seems to occur on some of the precious few days when it seems like my body is kind of listening to me.

I find discussing finance and dates over the phone very difficult indeed. It’s like the Zombies kick in and I go completely blank. I’m fine if I have someone in front of me and I can explain nicely that they need to be patient because sometimes it takes a little while to access the correct drawer in my brain. This doesn’t seem to work on the phone. They seem determined to talk over the top of you and give you a barrage of questions before you’ve managed to answer the first.

Anyway, this was kind of my way of “drawing out the poison from the wound”. Hopefully now that I’ve done it, my brain can move on.

Love and Letters (Not the ones from the tax office)

Anyone Fancy a Coffee? *waggles eyebrows*

IMG_6608

Ouch. The guy in the café I’m currently writing in is so good looking it hurts. Or is that just the Fibro? It’s hard to tell, right now I’m a raging ball of zombies so I could be giving him more credit than he deserves. He is bloody yummy though. Oh God, I’m objectifying again, I’m such a hypocrite *rolls eyes*

I was having some really weird stuff happening to me (yes I’m well aware that my entire life consists of “weird stuff” but shhh you I’m trying to talk. Type. Whatever) that was beyond my usual Fibromyzombies boundaries. Like, nausea for example, not the kind you get where you throw up but the kind you get all the time whether you are eating or not.  Then there was disorientation, which yes, I do get with Fibro but not to the extent where almost every day I was having a moment of “Where am I again?”. You know when you stay the night at someone else’s house and when you wake up in the morning you get the “Where in the smeg am I? Oh. Yeah, Dennis’s house, shit.” Kind of thing? It was just like that. Couple that up with intense pain and movement issues, lack of sleep and a general feeling that if it didn’t stop soon I may have to ask someone lovely to just knock me out with a hammer it was rather………interesting.

The lovely doctor with the fabulous German accent thinks I’m getting side effects from my medication. Baring in mind I’ve been on these meds for quite a long time it seemed kind of odd that they would start having a mega-freak out jamboree all of a sudden but when he showed me the list of side effects it really made sense.  They may as well have been a picture of my grinning face pointing directly at the camera and captioned “Dance off Bitch”.
The Doctor wasn’t the one I usually see but he did something wonderfully reassuring. At the start of our appointment when I mentioned Fibromyalgia he shook his head and said “There is just no way of explaining to someone else just how much pain you are in and how tired you are is there.” And smiled at me sympathetically. I knew immediately that this guy was an absolute dude and I didn’t feel ashamed for being there. Let’s give a big Woo Hoo for Dr Karlbaum. You better have Woo Hooed, I have ways of knowing if you didn’t.

So we are going to fiddle with the meds a bit, a reduced dosage of one and a split dosage of the other.  It seems to be working slowly, although over the weekend I had to deal with a) the side effects I was already going through and b) withdrawal from the meds that had been reduced. Luckily I was visiting my Mum and my brother and they came up trumps with Take-Away Food, computer games and a care package of food so that I wouldn’t have to go shopping on my own whilst feeling like the great plagues had hit me all at once. My folks are awesome.

One of the other upsides of reducing one of my meds is that I seem to be getting some of my sex drive back. My mojo has been a little non-existent of late but it seems to be seeping back in. Baristas of Cheltenham beware, I have a type and they make good coffee.

I am starting to feel a little more like a human being now although I’m still in a lot of pain. Keeping my chin up as per usual is the order of the day plus some lovely yoga in the morning complete with candles, incense and plinky plonky music.

Hopefully in a week or so I’ll feel less like a muggle and more like the Gryffindor that I know I can be.

Warm and Fluffy Feelings

Jigwam

x

Break Ups plus Disability, Hmmmmm…..

robot

If anything makes a break up even more complicated and painful than it already is, it’s an incurable condition.

As you may or may not know, three weeks ago my partner ended our relationship of 2 years and 9 months. Don’t worry, I’m not going to give details or dissect what happened on here. I certainly don’t intend to blub on my keyboard as I can’t afford to replace it if it breaks due to water damage. What I am going to do is talk a little about something that had never even occurred to me before.

So what happens when you stop having a relationship with someone who has essentially taken on the role or your carer?

You have to hand it to him; the man researched my condition as soon as he found out that I had it and learnt all of my idiosyncrasies and oddities.  He knew which of the “simple” everyday tasks I found it hard to do and just automatically did them for me. He knew what to do when I crashed and how to handle my brain fogs and made me feel safe when I was with him. He did all of this selflessly and without judgement.

So (leaving the slushy, drippy love stuff aside because I don’t want you to vomit in to your hat) what now?  I’m having to re-learn how to take care of myself. I’ve had two years of someone understanding what was going on and now I’m on my own again. I can hear plenty of people saying “Tell us, ask us for help!” which is lovely, but if I did that all the time it would come out as a constant string of whining  “I can’t do that it hurts, can you pick that up, my legs aren’t working at the moment..” etc. etc. ad infinitum, ad nauseum, ad me drowning in a bucket of self loathing.

Having to do all those things by myself again means that not only is the break up taking its toll on me emotionally, but it’s taking rather a physical toll as well. I’m not saying I’m helpless, because I’m not, but I did get in to a role where I was able to not worry about not doing certain things right away, if at all because there was somebody who understood. This means I’m so much more exhausted.

I’ve gone back to having the fear of being in social situations because I don’t know if I’m strong enough or if I have enough spoons to deal with both the emotional and physical toll on my own and I don’t want to cause “a scene”. I know people must get bored of having to deal with my shit. Quite frankly, no one is more bored of it than I am. The only person I felt that I could be honest with about how I felt and didn’t think I could scare off or bore with it was him.

The idea of forging that kind of relationship with someone else is just too daunting.

So at the moment, Fibromyalgia wise, I feel a little like the stone around peoples’ necks.  I know that’s partly the depression talking, but really I would like to have the zombies piss off for a while. At least give me the chance to get over the break up like a normal human being, maybe even go out dancing.

It’s time for them to invent a robot with the voice of Tom Hiddleston to come and help me get out of bed in the morning. See to it please Apple.