The following was written two years ago near the start of the pandemic. Interesting to now think about whether anything has changed significantly. What do you think?
Written March 2020…
I’ve had a few conversations recently with people, not just friends and family, but strangers – all sorts of people, young and old, from different walks of life – about how this has had to happen, it’s not easy or nice, in fact there’s a lot of darkness, but it’s actually like some sort of mass awakening. My musings tonight are that it’s like with reiki – once you’ve opened to reiki and accept and understand when the universal energy is giving you signs, that’s it, there’s no shutting it off. Signs that are at first gently nudging you to alert you to the fact that changes are required, that you need to become aware, that facing the truth and acting according to the/your truth is the only thing to do. When you ignore those nudges the sign gets bigger next time, then the next time it’s more dramatic, until one day its so in your face and rattling and screaming at you that you can no longer ignore it. Then, there is no choice, then change just happens and all you can do is ride the wave. And trust. This is the big one, this one’s for all of us, for the whole world.
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 🤓
I originally wrote this as a post on my Facebook profile as I feel it’s important to educate people I know about ME symptoms and how it’s actually not straight forward or easy to understand, even for people who have ME. I also want to try and explain the way symptoms suddenly appear, fluctuate or sometimes don’t even seem related to ME, but then you find out other ME patients experience the same symptoms.
Since covid19 there are also, seemingly, reports of a similarity between the long term symptoms some people are experiencing after having the covid virus and ME symptoms. So it feels apt to share even more now, as more and more people are likely to suffer with the same, if not similar, illness.
I’m slowly, slowly starting to understand the weird symptoms of ME, some of which I didn’t realise were symptoms of ME in particular. When people ask me about ME symptoms I go blank or feel panicky…there’s just too much and it’s too overwhelming to start to try and explain. That then creates anxiety because I can’t think, I can’t use my brain to think or recall or retrieve information, it actually hurts to try, and it all feels too difficult and too negative – hearing myself try to explain stresses and depresses me.
It’s taking a while, years and years, but now I’m starting to understand ME more. Within this time I’ve lost friends along the way, which people on ME groups talk about but I’d not taken notice of as thought it wouldn’t happen to me, that they were just being negative. But it’s true; the friendship group, and even family group, diminishes.
One of the barriers to understanding is that doctors don’t even know what causes ME, aren’t educated about what is known about ME, and don’t even realise the extent of the symptoms. Some are better at others at trying to educate themselves more but generally medical professionals really don’t know much. This is why being in ME groups, although it can get really depressing because of the negativity (I’ve often had to stay away from them for long periods of time to take care of my mental health) can be helpful. You start realising that strange things you feel/experience are being felt by others who have ME. Another issue about informing others about ME symptoms is being too exhausted and not having the cognitive function to recall the information and explain things to people, often having to repeat it every time you see them.
I thought I’d share some of my discoverings so people can have more of an understanding. So, here is tonight’s symptom explanation:
A little known symptom of ME is Delayed Sleep Phase Syndrome which is a shift of several hours in the sleep phase. Mine has shifted to 3-4am until 11am-12pm (sometimes later depending on other ME symptoms). It’s not insomnia. When I go to bed, I listen to a guided meditation, which I never hear the end of, and go straight to sleep. Once I’m asleep I sleep straight through. If I try to go to bed earlier I just won’t go to sleep, it’s just not time to go to sleep. When I awake in the late morning/afternoon I feel like I haven’t slept (this is every single day).
I used to try and change it, I researched it, and was told by the ME clinic, that it could be changed by getting up earlier, but unfortunately this advice just highlights to me the issue of how ME is often wrongly viewed. ‘You just have to try harder’ seems to be what is implied but perhaps not in those exact words. The ME clinic staff just don’t get it. It’s not possible. If it was possible I would have managed it by now. I’m a determined person. If I put my mind to something I can do it. I did try, so many times, and I used to get frustrated (and sometimes still do) that I couldn’t change it. However, now I just try and go with it, otherwise the frustration just makes me feel worse.
So I feel crap all day; no energy, pain, brain not working, then BING! my mind is wide awake late at night even though my body is exhausted. I feel wired and exhausted at the same time.
It’s a very disruptive, unsociable, symptom and pretty much not accepted by society, especially if you’re doing a 9 to 5 job, you’re in education, etc. It’s one of the reasons I had to become self employed.
I hope this helps people understand ME a bit more and could maybe help those with ME know they are not alone and they aren’t lesser because they can’t get up in the morning. I still struggle with my mind telling me I am lazy and have the thoughts that people think that about me. The difference now is that I quickly shake that thought, let it go, and just try and do what I can do…and try to do that small amount (or nothing if things are that bad) without shame or guilt.
Yes, this. Haven’t shared much about having ME for a while but saw this and it struck a chord. One of things that is so difficult to deal with is what she says about the fluctuation between just about bearable and awful…it’s utterly exhausting.
“It can still blow my mind; the fluctuation between utterly dreadful and just about bearable. It swings like a pendulum from ‘my good’ to ‘my awful’. There will always be a consequence for activity, for that is the very nature of the beast that is M.E..”
When I feel down and depressed because I can’t do anything when I am so ill, it becomes more and more difficult to find the will to keep going. I can tell myself when I feel that bad that I won’t always feel so unwell, and unable to cope, that I’ll soon feel better for a while, but knowing that feeling so ill, which brings with it the isolation and loneliness because I can’t get out and about, is undoubtedly going to happen again and again and again can just feel too much. The last time I felt like that was the closest I have been to giving up (there are so many people who had ME who have ended their own lives), even though I am so happy with what I am doing with my life at the moment (or perhaps because of that?).
Somehow I start feeling better and feel positive again, but the balance of trying to make the most of things whilst trying to keep the being wary of the next crash at bay can be a tricky tightrope. The constant up and down is so exhausting and so bloody boring, like ground hog day. We have to be so resilient to keep going through it.
Just thought I’d share. There is still such a misunderstanding of and not enough support for people with ME.
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.
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!)
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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!
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, Â 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.
romskiwrites 