Sometimes even the sunniest day has a rain-cloud. Having weathered many a storm, I had considered myself fairly immune to those pesky clouds… Well, life doles out surprises when we least expect it and the smallest detail going wrong can be the breaking of us occasionally…
I really don’t mump a lot. But we all need to sometimes, and when you feel the scales of pain or unfairness outweigh your sparkle, it is alright to smudge your freshly swiped eyeliner. People make choices in their communication and perception of others, and twice I recently encountered a drama storm without wearing my rain coat . I have seen that destruction before and witnessed the fallout by hurt people creating more of the same.
I just felt too tired to get through the imminent events about to unfurl.. It was experience and instinct. Having the last word is so rarely a gift you need to keep, and I walked away. The effect was relief and utter exhaustion.
It wasn’t just one thing though, and that is key. Generally we can deal with one or two muppets, disappointments, pain, and grief. But not all at once. Endless circles chasing operations, being told to get a treatment, only to arrive and be turned away on the advice of someone else, having to got to a point where even my lovely physio can’t justify the little he is able to do to help. I felt my hope slipping…..
Now… my glass is usually not only half full, but full of sparkly bubbles..
My path is usually strewn with sparkly stuff
But, here I was in a feeling I didn’t recognise. I had crumpled inside when I least expected it. Trying to be ok lasted two days. I knew I wasn’t ok and so did my lovely tribe.
The wierd thing was, that somewhere right down deep inside myself, I knew I was fine. I scanned the desire to run to Spain (no pun intended) or eat my bodyweight in custard creams, and riding it out seemed the only option. My face just needed to implode.
So without thinking too hard about it, I told my friends on my personal Facebook page. I knew that they knew, it was unusual. It wasn’t awful, but it was a painful, black inky blip and I knew I didn’t want it to spread.
Within a few seconds someone had replied. In fact, someone I know less well than some of my other friends, but her kind words and immediacy were so gratefully received. And the words kept coming, trickling in like a hand squeeze or an extra pillow.. My face leaked, my limbs ached, my head thumped and my eyes went very small . My sofa was delighted and so was were my animals who used my body as extra heating.. And the pain started to ease a bit.. I have suggested to one of my friends, that ordering hugs by courier ( just a hug! ) Might be a new business for them…
Thank you brilliant friends and neighbours for the time taken to give me support that day. The words you gave me were like little precious diamonds. I was asked by someone else why tell Facebook? Aren’t you just telling the world your business? My answer is no. When we can bear to speak about the demons, they start to shrivel away, and already this brief little bleuughhhhh.. became a positive conversation in another forum helping other people. You choose how and what and with who to share and only when you feel it is safe.
Opening up, rather than either taking it out on anyone else or internalizing has to be a good thing. Crawling further inside a body playing tricks on me, analysing and finding emotional pathways which weren’t there in the first place, was not necessary. I quite like my head clear enough to be of some use in the world. I watched as the weather came and the heavens opened……
Once in a while, a day comes along which like a huge gust of wind literally knocks you off your legs… or in my case crutches… The usual techniques which work on cementing the stiff upper lip in place aren’t working, and the floodgates have weirdly not only opened but disappeared entirely… it was literally like drowning in your entire wardrobe..
The mechanical workings you normally see in the mirror safely ticking along, easing each micro movement need oiling and you can hear some vital parts grinding together where once there was an easy flow..
…All you want to do is sleep. Sadness is so heavy …
So let the monsoon come..
Because, after you tell someone it’s outside of you again… you start answering your own questions… it is the start of unbreaking.
I am lucky to have some kind of unwavering determination to stay on this planet to keep being inspired by those amazing and brave souls I come into contact with every day.
For that, I thank whichever Gods are with me…
Today I thank my neighbour for the surprise flask of hot water in the middle of a very long power cut . I literally can’t see without caffeine ! She is worth keeping positive for. And the surprise bunch of flowers from another neighbour who read my post. As he apologised for their store-bought origins, I want to tell him that a bunch of daisies from a grass verge would still mean as much.
We shouldn’t apologise for ourselves. Or our own personal weather patterns. Our big, emotional, colourful, strange, indescribably, wonderful selves… who will have some days sunnier than others.
Create, scream, plant, share, paint, stitch, listen, draw and see which doors begin to open on your path..
Crap days will come.. They just prove how normal the other ones are.
Look for rainbows
If someone you know is having a day like this… just tell them its ok. Don’t judge, question, fix, micro manage, and offer endless avenues of helpful possibilities and comfort, unless they ask you to. You’ll know if they need something. Just be around.
It’s not about you.
Not today anyway. They will be back. And that’s the thing I have learnt, that the folk who help each other are the ones that just let you play it out, without always having to bring their stuff to the table. Because the real you just needed a break to let rip for a bit… you can’t get through understanding your stuff whilst simultaneously explaining it to someone else.
Your brain, like your energy can only cope with so much…
The next day they/you/we will be back in step again…
Sometimes we wonder why our children are acting out and riding unimaginably bumpy emotional rollercoasters . All this drama and frustration and anger at the world not quite being as they think it should be..
How can our funny, loving and confident young person, having coped with a lot already and thriving regardless be so utterly woebegone and angry?
Because they are human. And its a hard hard thing to be, Some find it much harder than others and actually the ones that shout loudest are usually the ones who need most comfort. However, as a very wise friend told me, sadly showing scars on his back from his own childhood, keeping it all in is worse. Inverting the pain and not letting someone show their feelings will only ever end up backfiring.
We can’t go back to childhood but we can be inspired by it and its lack of emotional rules.
My first feeling as an adult when I felt a bit rubbish, was guilt. What if I let someone down? What if I couldn’t fulfill all my roles that day? What if not doing what I usually did and losing my brave face melted the world and everyone in it? What if .. what if…???
Do you know what happened?.. Nothing. Today’s power cut was a bit like that. All the electricity and noise went off. There was very little I could do, no way of communicating, no internet and not many jobs I could do but basic ones and some drawing. Bliss.
Every now and again a meltdown is just a appetizer to a better version of peace. and will free you. Your real mates will get it.
We all have an enormous bag of gifts to offer. I lived a long time with my best ones under wrap, like brightly coloured parcels. Art, music, being allowed to dance and perform and the honest joyous conversations you can only have when you live without fear.
What I know now is that, I may have lost dancing (for now) but the Rocky Mountains climbed over to claim back all the other wonders were not hopeless. It took my inner tiger to get here and she’s still purring. I wear my heart openly in all weathers because these stories aren’t just mine. They are in all of us. In our Art group we share stories and we trust. Seeing other’s fall and not smash ourselves wide open without a safety net. If you feel safe to talk to someone when you are tumbling down, they won’t judge you. Saying it outwardly stops your thoughts turning to negative self spiralling spaghetti.. and worse.
I wish I could turn back the clock and put my arm around the young woman coping, patching over the cracks, and slowly vanishing.
She deserved to feel like a whole person. She might have run a long time sooner!
A friend of mine told me she thinks we are all a bit flakey. We are. We have our coping methods and the right people in your life will understand them. Be sad, but be joyous too. “God mum you are so embarrassing” mini tells me last night as I hugged the car mechanic who delivered my car home.
Quite right..! She didn’t know why. So I told her.
My car is my lifeline. Without it I can’t go anywhere. Disabled spaces are like jigsaw pieces around cities and map out our adventures together.. My car was making a dreadful crunching noise. The man in the garage I nipped into for advice, told me he couldn’t fix it. He has cancer. But his son was up from England, helping with the business and could look at the car later. On a day when the lad was already snowed under, probably worried about his poor Dad, he ordered the parts, drove us home, did the work and delivered the car back, getting a lift from someone else so we didn’t have to go back out. That kind of kindness should be shouted from the rooftops.
It is ok to feel . Sometimes when life gives you lemons, a bit of juice gets in your eye and stings like hell.. All the cold grey mornings, art that won’t work, flopped cakes, screaming children, sore bodies, hurtful comments or worrying thoughts…..Most of us, like another good friend said, hold the wound until a clot forms.
Being strong is admirable…
But it’s always better in company…
For the days when you feel bleuuuuuugh………………………………..
For the moments when you feel like you are leaking……….
For the rude people who should know better…
and for everything else….
Stay Dry. Love and Hugs
For anyone you know, care about, or look after with a pain related illness, a widespread arthritic condition, fibromyalgia, M.E. or similar long term “chronic” symptoms.
Most of us would probably agree on one or two things.
The term chronic is an unhelpful and misleading phrase, which lumps people together who simply have had an illness a long time. Chronic reads tragic, a bit sad and not quite figured out. The n.h.s, due to its inability to treat the whole person, fragments their parts to far flung departments, the more parts going wrong, the more departments acquainting themselves with a version of the person they treat for 30 seconds.
Nobody ever seeing the whole picture and joining up the dots.
When your body doesn’t work it leaves you frustrated, and struggling to know where you slot into a world you could previously easily move about in.
You either sink or swim. And frankly some days the tide is against you.
Pain and immobile joints are exhausting. Being tired and feeling like you have flu, without the runny nose is common feeling, some days rendering you unable to lift limbs or keep awake until teatime. You know it will be different tomorrow, and you hold onto a fluttery butterfly of hope that the pain volume will be back down a bit. Those days are the toughest and might make your person sad. It is also really hard to describe the level of intense pain you have, to anyone who hasn’t felt it themselves. Similarly, if you look relatively ok, being believed and understood can be tricky. If your person has mental health or social anxieties as well, they might struggle to articulate the circle of needs they have and how people around them might help.
Feeling you can’t mange physically can be very isolating. Seldom is there support for the feelings this can create. Whilst we try to create that in a practical way, it is different behind closed doors. Your partner and your children know you so well that they might not notice your day to day changing needs, or have the ability to understand them. Some friends might not see you in six months or a year and can’t be blamed for not knowing your deterioration and escalating needs. Check with your poorly person exactly what they are going through. It is a sure thing they haven’t wanted to bother you with the details.
You can guarantee your person doesn’t tell you a fraction of the times they are in pain. Not even close. So when they do, the Gods just turned the switch to mega-high and now, they need you to listen.
If they have a you to listen/help/share and support, then they are really really lucky.
It is incredibly hard for your once independent loved one to ask for help. Nobody likes to feel they can’t be superhuman. But being human can sometimes feel like an enormous struggle too. If they ask you to help it might have taken a lot of biting back of their dignity and sense of self. Be kind and don’t stick an arrow over their heads reminding them of what a big favour you’re doing.
Please don’t make your person feel guilty if they can’t make an arrangement, climb a hill, drive to a venue, stay awake past eight pm, or in my case sometimes even get from my car to the school door. Some days our bodies are letting us down badly, and to feel we somehow let down other people because of it, is a load too heavy to carry. ( Especially on crutches!)
Hands, hips, knees, spine.. Every day can be a lottery, especially when it gets cold and damp. I am time limited with painting, to the sunny days and months.
If your loved one uses a wheelchair, it can be a whole other set of issues. Being looked down on can feel like you are being ignored or bypassed when decisions are made. In crowds it is really hard to be pushed slowly like you have lost your va-va-voom and watch life zoom past you. Be aware of your friend or partner if they sometimes need help to get around, it can make them feel less than the person they used to be and humiliated to ask for support.
Having to ask repeatedly for help is really tough. You kind of need someone to know, and not to dramatise it. If you can help someone, just be a subtle superhero.
Without good support, I have seen people stop asking for help, creep slowly into their shells and stay there. In winter, when pain gets worse and bodies play hard ball, this can lead to people becoming terribly isolated and introverted. Then depression hits and you know how hard this can then be, impacting on health even more.
If the person has a carer, especially if it is a younger person, they are connected in a way you might find hard to understand. Little things are big things to a person who can’t bend/walk/stand for long/use their grip or put their own shoes on. Quite rightly that carer needs support and their own space, but your friend will have a gap in their abilities to achieve certain things that they are used to getting help with, if that carer is away for a while. It might take much longer for example to get dressed, get the pets walked and fed or clean their shared home. The carer too has massively mixed feelings about their charge. Whilst carers can get a break, the guilt/co-dependence and shared care people have in their micro universe is tricky to unpick.
Your friend will simply be grateful you still see them as them, without the chipped away bits, the essence of who they were before disease or illness struck.
For someone in pain, everyday activities they used to take for granted are like mountains and therefore it is incredibly important to respect how they still keep themselves tidy/organised and want to do normal stuff. And achieve their creativity or work.
For example. It will be painful and arduous to Hoover carpets, get to the back of a bath or under toilets, under kids beds to clean out the mouldy plates. It will be very hard to carry laundry, sometimes carrying food to dinner tables, making beds or doing up buttons and opening jars. Any help is good help, as long as the assistant doesn’t make their mate feel guilty or that they need to ask. My best friend just grabs things off me and organises my fridge. Another put my entire post barbecue leftovers in Tupperware, housed all the cushions in the bunker, folded the chairs and stashed the wine bottles in the recycling. All tasks which would have taken the most part of a day to unpick.. She did it in twenty minutes whilst ordering me to drink tea.
Your person is probably over compensating in some ways, because they can’t do other things. Let them. It’s their way. And their gift. Sometimes they might not say the thing they wanted to, or ‘be’ the person they hoped they would be that day. All a person in pain and illness wants, is to be treated with respect and to be quietly supported. If and when they can show their love back, it is almost certainly with utter gratitude and a deep deep relief that they have you in their life.
To my friends now and in the future, thank you. I am very lucky to have you, and (most days!) my small person is my absolute rock. Creating an environment which welcomes folk in need of a bit colourful distraction is the start of our journey. I wanted to share this as I am in the position of both being and supporting disability in different ways. In the act of helping in whatever way we can helps us too, and makes us choose gratitude over giving in.
See you soon. Look after yourself and each other xxx