Poison in my Veins

I’m often asked how ME/CFS affects me/my life. As I’ve been asked several times recently I thought I’d try and tackle that question. When I get asked I shy away from it. Not because I don’t want to explain but because it’s so much and so difficult to explain. It’s taken me years to even remotely understand it myself so it feels like a huge thing to try and explain to people who don’t have it themselves. It is also so much to explain, as there are so many symptoms. Not everyone with ME has all the symptoms, the symptoms can come and go, get worse or better, suddenly appear out of nowhere a few years down the line, fluctuate, and be amazingly unpredictable. I end up not going to the doctor when I get new symptoms because a) the docs don’t really know about ME and usually can’t help anyway and b) I think it’s probably just another ME symptom so live with it.

I also find it difficult to explain because it feels so overwhelming, there’s so much to explain, and the brain fog and lack of energy can mean to take that time/energy explaining can mean using all my energy and causing pain; basically a flare up of symptoms (known as a crash). So, explaining the illness can make me ill.
Lastly, if I’m not having all the symptoms when I’m explaining I find it hard to recall what they are and how they make me feel. Lastly, lastly – talking about it uses valuable time/energy that I’d really like to use elsewhere, plus talking about it can be quite depressing.

Anyyyyway. I thought I’d tackle trying to explain one of the symptoms today as it’s one of the worst for me when I get it. I’ve got it today so will try and explain how it feels. It’s part of the pain symptoms. I don’t always have it but when I do it’s so difficult to get out of bed and do things. It makes me incredibly grumpy as it’s so painful. It’s all over body pain, feels like there’s poison instead of blood in my vains. It’s so hard to explain. It feels heavy and sharp, achey and dull. My joints feel like fire, my muscles and organs feel like there are needles in them. I just closed my eyes to focus on it to find a description and realise, maybe, that one of the reasons I can’t explain it is because I spend so much time trying to ignore and avoid it, when it’s this bad, as it can feel too much to bear. It’s interesting that when I’ve done guided meditation for pain, they guide you to focus on the pain, that which you are trying to get away from, and that seeing, feeling, perhaps actually accepting the pain can help to dissipate it.

So, that’s good, writing this today has helped remind me to try and lean into it. Accept rather than avoid and fight. And it may pass quicker…pic of me was on a good day 🤓

Here’s a pic of me on a good day 🤓

CAT Studies Crew

Wow! It’s been a very long time since I last posted. A lot has happened…I have been diagnosed with M.E. and an now a mature student on a degree course studying Creative Arts Therapies. I feel I may share some things from time to time on here as I am now being more creative and enjoying the process of creating without worrying about the outcome. It’s very pleasurable and it means that I actually DO end up with finished pieces rather than doing nothing! Win, win.

So, today in Uni I did a presentation (creative presentation, not a powerpoint) about my experience of a module that we have now finished called ‘Self Awareness’. At the end of my presentation I read out this poem which was well received by my peers and tutors.I had a lot to say so it’s rather long (and could have been longer) but hopefully I captured my experience of the module.

Note: CAT = Creative Arts Therapies (so you will understand the reference at the end!)

 

Wow, what a tricky beginning

Fears, anxiety, expectations in the making.

Part mine, part outside, taking on more than enough,

Is it empathy or am I taking on other’s energy and stuff?

Feeling cloudy, confused and dumb,

it just made me want to run.

Staying put, I ought to be proud

taking on the challenge, speaking aloud

Doubts, irritation, frustration and fatigue

Pushing through, trying to take care of my need

Endless discussion, and tangents abound,

being with that, trying to stay rooted to the ground.

Reading theory, forgetting, trying to understand,

head hurting from discussion and continual sound.

Understanding the deluge of emotions that can plague me

don’t have to overwhelm but can be set free.

Perhaps not free but parked for a while

until I can look at them in a calmer style.

These dramatic demons are rearing from my past.

Mine but also from the long history of my family they are cast.

They are valid, they are true and I accept they mean something,

though going deep into them is not a place I always have to delve in.

Creative sessions being a safe place of revealing.

Not only free and clear but also incredibly healing.

More content away from the words and the talk,

my creativity revels in the opportunity to walk.

At peace with the freedom of no finished piece.

Completely open and flowing, a creative feast

Affecting my life outside, not only in class,

writing poems like these in a way to pass

through the overwhelm of emotions and drama that don’t serve

me, or my present, or future reserve.

And what have I learned, what do I know

through exploring and surrender, allowing the flow?

I’ve learned that my voice is valid in this room.

That this place that I’m in is like coming home.

I have known all along that it’s here I belong

That my story, good and bad, has all been part of this sojourn.

I’ve learned I am victim, persecutor and I rescue

Yes, all three, when I thought it was just one that I go into.

Moving in and out of the states with everyone else,

a continual dance at a varying pace.

I’ve learned to feel things by moving my body,

to feel how it feels whilst watching somebody

who is doing the same, allowing to be seen,

and the honour that comes when let into their scene.

I’ve learned that we ALL come from a good place.

That everyone deserves some time and space.

I’ve learned that I’m doing this to share with other souls

the benefits of creating, to prevent falling into the dark hole.

I’ve learned I don’t have to do feel everything all of the time,

that I can stop the spiralling, sit down, write a poem or a line.

If things are overwhelming I can create, and be saved

from the monsters, past and future, wipe them out in a wave.

Of present, of here and now, of basically just being

and not being scared like before when I’d go into hiding.

I know that I hate that, for this course, I have to explain in words

That nameless thing which is not really seen or heard.

But this is the whole point, what we’re showing, what is true.

Art, dance, music, writing, movement and drama – make way for the CAT Studies crew!

Smiles from the Heart

My cat waiting for me at the gate,
my niece presenting me with a drawing just for me,
walking along the pavement and pausing under a tree
which seems to have a hundred birds tweeting happily…
All these happenings have brought from me a smile.

Not any ordinary smile,
but a smile from the heart.
Do you know the type?
It’s not a huge wide smile, it’s quite small physically.
You feel it in your body, in your heart actually.

One thing today, and has been for a while,
I can’t smile from the heart without tears coming.
It’s so bitter-sweet or, maybe,  sweet-bitter…
Every time I smile from the heart I feel love,
I’m aware of my heart and it’s aches, so I feel sad and I weep.

What does it mean?
Perhaps joy is love, and love is sadness, and sadness is love.
Perhaps my idea of love was pain…and so is again.
Do I really need to know? I don’t think so.
I am just allowing it to be, and trying not to question, and to just see.

‘Chasing Pain’ pastel drawing by RomsArt

 

Society is sick, not me…

Whilst I support the idea of let’s talk about mental health, get it out in the open, not be afraid to admit our ‘problems’ I feel that this continuing trend  in what is, in fact, labelling people (or people labelling themselves) with anxiety, depression, OCD and any number of ‘disorders’, is dangerous.

I absolutely agree that it is important to not hide away, to pretend all is fine. It’s not ok to feel unable to voice our truth (important point: when I say our I mean absolutely everybody on this earth) when we are finding life difficult.

I know there have been people along the way that have found it difficult that I don’t actually label myself. I don’t label myself*. I don’t say I’m a depressive. I don’t say I have mental illness. This isn’t because I am ashamed. This doesn’t mean that the people who do get labelled/label themselves/say they are a depressive/have a whole host of other ‘mental illnesses/disorders’ are braver than me. Ironically, some of the people who don’t like that I don’t allow the labels for myself, have told me that they admire the fact that I stand up and say so when I think something is wrong rather than going with the crowd, and that they wish they could be like that.

I see being labelled as a negative. I am labelled. I can then be placed in a box and ‘helped’ by treatment (always medication but sometimes with other types of therapy) that apparently makes people with ‘mental health issues’ better.

What about this type of labelling, rather than labelling in a black and white way?  I am a positive person, I always respect and help other people, I do voluntary work as it seems natural to me. What about…. I create personal drawings, paintings, poems for my friends and family which bring smiles to their faces, I am prone to very positive periods in my life. How about a label for the times when I am just living quite simply, not doing very much? Am I labelled by any one of those things? NOPE!

Let’s take a different view that, actually, society is sick… not me. I think I maybe understand why some people take solace in labelling themselves with a ‘mental condition’. Perhaps they feel that if they know what’s wrong with them they can do something about it…yes, I get that. However, what I am asking is that those people don’t look at me as though I am in some sort of denial. I can, in fact, see very, very clearly. Sometimes too clearly, which is why I can find life in this society particularly difficult at times…increasingly more often. Don’t judge me. You who looks at me with your ‘depression’, anxiety’, etc are people just like me, who absolutely hate to be judged but have become judges yourselves.

So, I will NEVER be labelled or label myself. Being labelled is just like being in a box; it has it’s limits, it shuts you off, it can be dark and perhaps a bit boring? Many know, from experience of survival through difficult times, that it is easy and, to a certain degree helpful to build up an imaginary wall around ourselves to ‘protect’, to ‘be safe’. I see labelling as having another wall forced upon you. ‘Getting better’ is surely about unpicking, breaking down the walls around us in a safe way not adding another limiting wall/box (label) tightly around us.

That’s how I feel anyway. We all have different opinions and experiences. That is the point isn’t it…

*Just as an aside, I don’t label myself in any other part of my life either.

Celebrating a Wonderful Woman

I wrote a blog a short while ago with a poem I wrote after my wonderful friend Claire died suddenly. I would like to post the poem again as I have made a few small changes (please see the end of this blog).

One night last week, a few nights before I was to attend the celebration of her life, I was feeling so restless. I don’t know where it came from (well I actually I think I do know….it came from Claire) but I suddenly had a compulsion to draw one of her cats. I chose a picture and got the paper, charcoal, white chalk and eraser out. Not long later (it seemed not long but, as it such a meditative state, I have no idea how much time passes when creating) there in front of me was a drawing of her cat Darcey.

I am so grateful that I can now recognise the moments when I need to be creating. I have picked up a pen, pencil, piece of charcoal, paintbrush several times over the last few months rather than wallow in sadness, anger or whatever emotion is taking over at that moment in time.

I feel that the creating of the poem and the picture is a fitting tribute to an amazing woman but, more than that, it somehow made me feel close to her even though she is physically not here any more and that has given me some sort of comfort. It has been a therapeutic part of the grieving process. I shared the poem and picture with those that loved her and it felt that it brought some sort of comfort to them too.

Here is the slightly amended poem:

Feeling Feline

So lean…
What do you mean?
Well…you know, lithe and clean?
But, what do you mean?
You are elegant and soft, holding that intelligent head aloft.
Oh, I see….I think…
With your silver sheen
you stretch and preen.
You can be quite a match for those not quite clever enough
to know what you really mean.
I still don’t understand.
Ahhhh, but you are far too special you see, not like them or me.
You are, in fact, so matter of fact…
and yet an enigma, you are cryptic, mysterious and,
let’s face it, you are…
JUST LIKE A CAT.
Now do you see?
With those impossible blue eyes you are
cool as a cucumber, warm as can be.
You live to be free, yet you hold those special ones close.
You give your heart to all those you love,
especially to your dark beauty…
The one who stayed true, the one who really knew you,
Knew you the most…the one that
you knew, you loved.
You love us all…we know and we absolutely without any doubt…
LOVE YOU
Meow…
Meow.

For Claire and all who knew her by RS
5 March 2016

The Grip of Despair (or the alternative title ‘Am I Really Sharing This?’)

This is what I wrote last night, word for word, in the grip of despair:

I looked at myself in the mirror and thought about pills tonight.

I cried like my heart was ripped out and torn into pieces.

I hated myself more than I could hate my worst enemy.

I nearly phoned the man who is the last person I should call.

I felt more alone than I ever have before.

I felt like a spear was in my chest and it was being screwed in and around and around…scratching, scraping, boring, cutting, ripping…

I felt like I haven’t felt anything like love from anyone for me for ever and ever……….

I felt like death was the only opportunity for release.

I felt like no one really wants to be around me.

I felt like even if I was the only one of two people left on earth the other would look for someone else to talk to.

I felt depleted.

I felt cheated.

I felt abandoned.

I felt like a pointless speck of nothing.

I felt like if someone did decide to give me a go I would only fuck things right up.

I felt like no one believes me.

I felt like no one understands.

I felt like no one cares.

I felt like closing. Bringing up the barrier.
Pulling down the shutter.
Leaving here forever.
Not bothering with ‘goodbye’….or…’I love you’ or….’see you again’…or…’please notice me’ or…
or…or
Nothing.

I felt like a cliché when I read over these words.

I felt like a twat, a wanker, someone who should just shut up.

I’ve noticed people shifting away from me. I’ve noticed me shifting away from others. I feel that people can’t stay near me for long. I must be draining them. The thought of this makes me sick. This is the last thing I want to be. I would rather be dead.

I’d rather be dead than bore people, than make people want to get away from me, than draining people’s energy.

It’s ok, I am now retreating.

I feel patronised.

I feel like people have just been pretending but they can’t pretend any more.

I feel sick, dead, dying, choking, gagging, blackened, dirty, worthless, not good enough.

So – that’s what I wrote in the midst of it last night. What was the trigger for all of this? Someone, who knows me and my insecurities, said this to me today:

‘You’re quite intense aren’t you? Maybe men can’t handle that and that’s why they run away’.

They said it after I told them about something, because they asked me about it, that had been very difficult and upsetting for me and had left me feeling very vulnerable and abandoned.

My answer to them now (I was driving in heavy traffic at the time and was also quite stunned by this ‘out of the blue’ statement so didn’t get to answer them there and then): Perhaps think before you speak. You don’t know how fragile and vulnerable someone is and how your judging words can cut like a knife.

It’s not this person’s fault the way I reacted when I got home last night but why did they feel the need to tell me who or what they think I am and apparently what I should or shouldn’t do? Why do they ask so many personal questions and then wince or frown and look confused when I answer them? Sometimes I feel like the freak….no one understands but they want to have a look and poke around …and when I tell a truth they react in a rage and make me out to be a bad person so that I end up apologising for being real. For being me. Last night and today have been really difficult.