#aliceella

When you want something so freakin’ much and it’s not in your control, what do you do?

Do you accept it? Or do you keep fighting?

But what if fighting it made it worse? The harder you push the worse you get and the further away you become from your goals, your dreams and your life.

That’s what M.E. does to us and for now there’s not much we can do.

When the illness you’ve been diagnosed with has no test for it you’re left constantly wondering if you even have it. You feel so damn ill that you keep wondering if you have an illness that the doctors have never found. If you have been misdiagnosed all these years.

M.E. is a diagnosis of elimination which means that they basically test you for EVERYTHING - from blood tests to cameras up your ass, from eating sherbet and being scanned upside down, to cameras down your throat into your stomach. Name a test, I’ve had it. 

Then when all the tests come back negative, and you’re left distraught, you feel desperate to be diagnosed with just about ANYTHING!

Following that you then ended up seeing a bunch of psychiatrists who also find nothing wrong with you and say stupid shit like ‘ have you tried taking a dog for a walk?’ - no, no i have not because I’m in a fucking wheelchair you dick. (Yes that really was said to me by a doctor) - It just doesn’t make sense to me that all us healthy happy people suddenly find themselves bed-bound and people think we fake it?!? WHYYYY!!?? And hey, if M.E. is all in our heads then why cant we donate blood?! 

But I was diagnosed with M.E. at 14, and 15 years later there is STILL no test, no cure, and sure as hell no help.

A friend of mine recently received some comments on her blog saying that she was being too negative, and that really made me think.

How dare they add more to what she is already struggling so hard to cope with- how dare they comment on something they so obviously have no experience of and no knowledge about.

It made me realise that we have every right to feel how we feel and to speak out about it.

In my case it makes me want to ask the question ‘could you live with a chronic illness for over 15 years and not mention it? Not feel the need to vent? Could you be positive all the time?’ I don’t think you’d really manage to just ’try yoga babe’ or ‘drink more water’ - I’m not strong enough to do bloody yoga and I drink plenty…

I mean, imagine being healthy, and then your life suddenly being taken away from you at the age of 14, and now all these years later you are still fighting a constant battle. Every single day. And the fact I’m not exaggerating kinda sucks right!!?

Yes I used to be in a wheelchair and unable to speak / move / watch tv for several years, but that doesn’t make it any easier to cope now. In fact I personally find it even harder now, because when I do get moments of relief it makes me want to be able to live a full life even more.

There are days when I can actually feel a little bit of energy in my body and because of the nature of M.E. I have to hold back or I’ll get worse- and let’s be honest if I do have enough energy to do a little something I’m gonna end up doing it and then suffer the consequences. OOPS!!!!

Fuck sake it’s bloody ridiculous. So no, I won’t be positive every day, but I will try my best to be as often as I feel strong enough to. That’s all we can do.

I’ve even noticed that some of my friends have have stopped asking me how I am - I think that they don’t want to broach that subject with me any more and that hurts a bit. But one thing this illness definitely does is show you who your true friends are- if they ain’t there when you truly need that support then they ain’t gonna be there for the good times I can tell ya!! And the friends that do care, they are beyond amazing , so thank fuck for that, thank fuck for them.

I know I haven’t written my blog in a little while and to be honest over all I have been coping a little better recently! (Not that you’d think it reading all that! But I have been working SO DAMN HARD on acceptance and have found that to be the key to keeping my sanity.

I find that the more I fight and the more I want for my life, the worse I get.

I have to keep learning to accept that I have an illness that not many people understand, and that some people don’t even believe exists - fuck them though. 

I know what I live with and I know how I feel on a daily basis- I know that when I am smiling in a photo I was probably crying myself to sleep the night before. I know that when I film a video for youtube I have to rest for days before and afterwards and each cover takes me at least a month or two to actually record and edit.

For that reason I know I won’t make it in this industry. How frustrating is that.

I can’t do what the other singers and writers can do.

I can’t go to the networking events and for over a year- since my last relapse- I haven’t been able to do any writing sessions or be in a studio. The things I have absolutely pushed myself to be able to do (for example my new music video) have always set me back for weeks or months after…sometimes worth it, sometimes not!

Over the past 6 years since I really started writing, recording and putting out music I’ve only been able to release 3 singles. - Yes I am proud of that and only I know what a struggle it’s been but it also makes me realise just how unrealistic it is to want to be a singer… I can’t even gig!! LOL #awkward

BUT I have been managing little things recently however small, but it does seem like every time I get above water and start to book things in and feel like I CAN DO THIS, something drags me back down again.

Frustration frustration frustration. That’s what I feel 24/7.

I am trapped, trapped inside a body that won’t let me live.

I want to socialise! I want to see friends, I want to go on dates and have some sort of love life, and above all else I want to sing. I want to work my fucking ass off and release my music. I want to write songs and push myself hard.

But I can’t. So I have to deal with that- and no-one else can help me deal with that. It’s down to me.

Recently I have been trying (again!!!!!) with the lightning process - a neurolinguistic approach and have genuinely found it very helpful, but it hasn’t ‘cured’ me by any means.

I did 7 months solid of graded exercise therapy and by keeping a chart every day MAN I’M COOL I soon realised that I didn’t actually make any solid progress. Since then I have been keeping a chart with the lightning process and have seen some improvement. 

I did the LP course around 10 years ago now so I have made the decision to retake it, but was scheduled to go on it lat week and wasn’t well enough!! OH THE IRONY!!!

BUT - There IS hope, and maybe it’ll be just what I need to conquer this mother fucker. But then again maybe it won’t! Who knows!! But I won’t give up and I’ll keep trying whatever I can!

Time will tell and I am going  to go there with no expectations other than to give it my all.

I will blog again maybe a few weeks after and let y’all know whats a gwarning!! But for now, love and strength to my fellow spoonies xx remember,  acceptance is key when you have a chronic illness, but that doesn’t mean you should ever give up.