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.
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 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.
I’ve always been creative, went to Art College after school, but stopped painting and drawing for a long time.
I have recently unearthed my college portfolio which I had hidden away and, although I enjoyed going through it and seeing some of the work I’d produced, it was also quite upsetting as I got insight into why I stopped and what a difficult time it was for me in the second and third year in college. I had already had several traumatic events in my past and more happened whilst I was at college. At the end of my first year, just before my end of year show, I was raped by knife point by one man whilst another man watched. This triggered a whole catalogue of trauma and difficulties. Although I didn’t really acknowledge it at the time, my work became rather dark and reflected the difficult time I was having.
The tutors expected us to talk about our art in college but I could never do it and so was made to feel that I wasn’t a proper artist. I thought I didn’t know what my art was about then but see now that I couldn’t face what it was about as it was too painful. Now I look at it it is very obvious to me what it was about and probably helped me get through some of the trauma in some way, I just couldn’t talk about it though….I guess this was art therapy for me. I got through those two years and somehow passed the course but I didn’t feel that I had passed as ‘an artist’ and afterwards I didn’t continue in a creative career or even do very much art in my personal time.
I am so glad I have started painting and drawing again and rediscovered why creating art is so important to me….. I am enjoying it in a more confident and relaxed way….I’ve realised I don’t HAVE to talk about what my art is about but funnily enough I wouldn’t mind taking about it now. And, although I have been creative in other ways over the years, I wonder how I managed to exist so long without regular painting and drawing in my life.
We all have our baggage. Especially at this age. Do we keep spiralling in our cycle or try a new angle? Am I doing my usual or assuming and not pursuing something that could be beneficial? The confusion, it consumes and yet the plumes of clarity puff through the fog of doubt. Blowing the wisps of past and our stories away…with the fairies and I come back to earth….
With a bump and a trip and get up, start walking through woods and clearings. No, not the straight even path but a lane full of twists and bumps, beauty and laughs, ditches and stiles, danger, clarity and shadowy light….
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.
I have so much to say but am not in the mood for words at the moment. Sooooo….I have recently taken up art again (I went to art college 89-92) and thought I’d share some images instead of writing today.
Being creative…….it makes me more balanced. Like meditation, when I am not doing it, when I stop, when I am not living creatively, when I suppress the natural flow, I don’t feel too great… I need to remember this.
I’ll tell you how I feel these days and how I have felt for quite a while…I feel like my whole being, what I stand for, what everyone else stands for, why,what, when and whom….basically everything….is being challenged. It’s very contradictory… it’s exciting, difficult, lonely yet not lonely, tiring, yet quite empowering and it seems that only good things can come of it (though I am aware that life will still be a series of ups and downs) and that there is absobloodylutely no looking back!
romskiwrites 