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 🤓
My Dad died in February and I have kept a journal of thoughts, emotions, etc. about him, and how his death has affected me. I wrote the following after noticing that I felt a swell of emotion rise through me from my heart to my throat and being aware of how my mind came in and tried to block the emotion/energy. I then just wrote and this flowed out. I’ve tidied the writing up a little, but it’s basically as I wrote it.
The flow of emotion
that needs release,
a sudden burst that
comes up from the heart.
A wave that can’t be stopped, until
it reaches the head.
Then the mind comes in
swiftly
and stops the energy. Dead.
For longer it is trapped,
adding to the years
of imprisonment.
The trauma of the girl
must be kept
under wraps.
Don’t show it.
Don’t let them see
the pain and the sadness.
Keep strong.
But…
It is getting harder
to keep that control.
It’s taking over,
it’s seeping out, and it wails
and it shouts.
It has a force.
The force is strong,
has a million years
behind it.
Not just the little girl
but all humanity is voiced.
The line that goes back
into history needs to speak.
To be spoken.
The damn has to break,
the tears allowed out.
To cry a river,
a sea,
an ocean.
The force taking with it
long held hurt and
emotion.
‘I want my daddy’
the voice cries.
Speaking
for man, woman
and child.
Snot flowing, tears streaming,
the release at last.
Heart taking place
of the mind
and is part of the healing
and calm that can take place.
Now there’s more room
for clear thinking,
less stickiness,
more true feeling.
A clarity rings out,
and
within the clear vessel
that is the girl, the woman,
the being.
Part of all and part of
nothing.
A space, an energy is here.
Never ending, always flowing,
and it goes on
and on and on…
This piece of writing
can’t be ended
as this energy
never dies.
So
to stop but know
there is no ending
is what my heart now decides.
Still not the end,
it is true, but
something has to stop and
somehow.
Let’s just pause,
and say thanks
to everything and no-thing.
Just be in the now.
Why can’t I end this?
Am I afraid?
Do I think I won’t be here
any more if I can’t write
and keep on?
To end is so difficult,
I don’t want you to go,
but
remember I must,
that you’re with me
and you know
that I loved and love you still.
My heart is content.
I can rest and stop needing
what seemed always out of reach.
I now grasp it but knowing
that it is not true,
somehow.
What I needed was trust,
was being grounded and true.
I did that,
I let go
and then,
at last,
I found you.
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.
Being in a relationship has opened my eyes to a few things. One of them being how I deal with coping with chronic pain, and how I come across to others when the pain goes past the threshold of what I have learned to live with… when am finding it hard to keep going with a smile and the frustration of having to explain over and over that sometimes I can’t focus on anything because I am so focused on dealing with pain.
One of the problems with having chronic pain is that after a few years of it you don’t talk about it any more. Why? Because you feel that as well as boring others with it all, and often feeling like you are not believed, you realise that most of what is coming out of your mouth is negative which does your own head in. What happens is that you end up coping with continual pain but without people knowing that you are dealing with it…dealing with it all the time.
I don’t mean for this to be a ‘poor me’ piece….I am writing it because I read this and it really helped me realise how I am feeling about it all is normal. I also think it is good to share as it’s great for people to read so they get some understanding and have an idea of the frustrations chronic pain sufferers go through every day.
I am starting to learn to communicate when the pain is bad, in a positive manner if possible, and without feeling I have to go into so much negative detail, so that the person I am with knows and understands why I can’t focus on talking or thinking for a while, why I am exhausted, etc. In order to try and explain, I asked my boyfriend the other day if I was frowning. He said no, and I said that in my head it felt like I was frowning. I have no idea if that explains it in any way, but perhaps fellow chronic pain sufferers will understand.
I am sure I could keep on wittering about it but probably best to read the article (link below) as it’s written well!
Phew!
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.
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
I was having a day when I felt so bleak, angry, negative and alone and, from what I remember, I couldn’t really put my finger on why. I wasn’t even able to stop the awful stream of thoughts that were going through my mind so I wrote them down, I let them out. I wrote down the thoughts and how I was feeling without stopping to think about what I was writing. I looked at it today to see how awful it was and, as always happens when I reread some old scribbled outpouring of ‘self absorbed stuff’, I was surprised at what I read. When I say surprised I suppose I mean that I was expecting a jumble of words that didn’t mean anything but this didn’t seem to be the case. When I read it I felt somewhat comforted somehow. When I reread old scribbles I remember when I wrote it but I don’t remember what I wrote at all and it often wonder who that person is who wrote it!. I’ve copied it down here exactly as I wrote it.
So here is what I wrote in the dentist waiting room…
Feeling the dark, the gritty butterflies, the cold, angry, heartless bitch.
Who is she? Is she part of me? Is she the real me? The part who just crawls around my head poking and prodding and scratching. In touch with the dark today, holding hands with the cruel. Creeping around with the bad and the hard and the uncomfortable bits of crap that cling on, that we drag behind, that get forgotten…but not really. They cling and grasp and stick to us in a desperate plea for recognition and attention. Not letting go, staying ‘in touch’, dropping us a line, touching base. Let’s shake hands and compromise, come to an understanding. It can’t continue this way, let’s be friends, let bygones be bygones and move forward into the light together. Can we do that? Can you transform and bloom and change your ways? For good – not going back, no returning to the past, the unnecessary doom, the place that can’t be changed but can be seen differently, can be forgiven.
Goodbye. What more to say…
Feels like a stab but this feeling won’t stay.
So long. What more to say…
Respect’s more important not the coward’s way.
Farewell. What more to say…
My heart will mend, bitterness fade away.
Goodnight. What more to say…
The dark of disappointment will be allayed.
Adios. What more to say…
Saying it in Spanish, does that make it ok?
Goodbye. No more to say…
Except that I feel a little lighter than yesterday.
romskiwrites 