My ‘wobble’ day

Written by our lovely Muddy, Claire Thompson

 

Wow...last year, 2020, flew by like no other! I heard a lot of people ‘complain’ about it, but if they did to me, I would simply say, “Would you of wanted such a difficult year to go slower?”

People who know me tend to say that I am bubbly and positive. Generally, I am. I was shown how to appreciate the small things in life and to be grateful for everything by my wonderful parents. I am a ‘glass pretty full’ type of girl. Also, I was taught to see that when there are tough times/situations, good will always come of it, even if you do not see it for a while. I can never be grateful enough for these crucial life skills. They have been tested many times!

My amazing dad devastatingly passed away out of the blue nearly six years ago and I began my journey with Chronic Illness, Ulcerative Colitis from that day. On recently telling mum over the phone, how grateful I was to them for these skills, she said “Love, please do not underestimate what comes from you.”

I always try to think of two positive thoughts for every negative one and it really helps! I also make sure that I do things that make me feel good, like listening to upbeat music, going for a stomp in the countryside, gardening, listening to comedy, chatting to mum or a good friend.

Today though, I feel anxious, worried, down, confused and frustrated… my first real ‘wobble’ day in nearly a year of the Covid 19 pandemic!

The reason being that we have had a recent local sharp spike in ‘positive’ Covid cases. I found out during a cleaning shift at the Supermarket, that a lot were through people mixing when they should not have been! Also, some of their family members who lived with them, were still ‘out and about’, when they should have been isolating at home.

“Selfish, stupid, idiots,” I thought crossly.

To make me feel worse, I had just been told that three staff members were off work waiting for test results! I tried some of my usual ‘pick me up’ tactics, but they were not working. I went outside to empty the bins and litter pick, gratefully and deeply sucking in the cool fresh air. Then the ‘traffic light’ main shop door system said in a robotic lady's voice, “It is now safe to enter the store.” (I had better not write my reply to that!).

My ‘wobble’ was, unfortunately, turning into a ‘topple’...

I aired my feelings to a colleague who it turns out, felt the same. Always good to share these things when possible, but we sadly felt no better. I had recently read that up to 60% of illness was related to stress. I tried hard to not get stressed and deal with it as well as possible. I was very aware that it could cause my illness to ‘flare’. I so did not want that to happen again. (Been there and got too many unwanted ‘t-shirts’!).

Continually going out to work during the pandemic was not always easy and worry levels varied in myself and others. So, so much harder for thousands of other people though. I often thought of them.

On leaving work and on the brink of tears, I messaged my second employer, where I was due to go shortly. I explained how worried I was about possibly picking up the virus and unknowingly passing it on to someone there. Especially the vulnerable adults I work with. He was so understanding and suggested I did some work from home. This felt like such a relief. After a calming shower, healthy breakfast and another coffee, I had my first appraisal in that job, via Zoom. It went very well and I started to feel more positive again. Later on I found out that all three staff members from my other job, had had negative test results. Phew!

The following day, I felt a lot better and after my early morning cleaning again, I decided to have a clear out of unwanted items at home. I made 3 piles;

1) to sell.

2) for the local Homeless charity.

3) for charity shops.

A good de-clutter always makes me feel good!

On reflection of 2020 positives, I am so grateful to still have all my wonderful family and friends. In fact, a couple of my colleagues and I have become firm friends, because we opened up to each other during this difficult time.

Also, very surprisingly, was the first year in over 5, that I have not been on loads of medication, sometimes including steroids. Astonishingly, my base medication (for life), had actually been halved in the summer of 2020 too, for the first time ever! I have learned to rest and learned to listen to my body's ‘whispers’, like mouth ulcers, fatigue, abdominal pain, blepharitis etc. I have my ‘muddy’ friends from Muddy Care to thank for a lot! Through their support, advice and friendship, from bravely sharing their own varying Chronic Illness experiences. Love you all and cannot wait until we are ‘allowed’ to meet up again!

So, I will continue to sing and hum along to the Supermarket radio, saying ‘Good morning’ and ‘Hello’ to people, having a laugh with colleagues and smiling at strangers. (You never know whose day you might make by simple gestures!).

Muddy Jukebox - February 2021

Ashes

By CEO Muddy Care

 
 

I have included the lyrics of this song below as I think they speak so clearly of how millions are feeling right now.

 

The UK reached the 100,000-death toll from COVID in January 2021…and in addition to that 100,000 who have died, are all those people who have survived but whose bodies are now broken in varying degrees, as are the families and loved ones of those we have lost.

As someone who has several serious chronic conditions, who has lost so much in the last decade and from someone who works with people who also have serious medical conditions who have also lost so much, I know first and second-hand the pain and the magnitude of loss that comes with illness and how the impacts interweave themselves into so many different parts of your life.

So many people have had enough.  So many people are now in excruciating pain.  So many people are lost.  So many people are burnt out.  So many people are feeling their lives fall apart.  So many people are struggling.  So many people are at breaking point.  I ask this question…where do we go from here?  We go to a place where it is absolutely okay to display our vulnerability.  In fact, vulnerability is a sign of strength.   

So many more people are starting their own journeys of bereavement, of acceptance, of adaptability, of healing, of managing loss of themselves as well as for others.   For each individual the journey will be different.   

I can offer little comfort but I can offer a few words of wisdom, of observations and experience.  These have been obtained through my own journey (that is still very challenging), from those lovely ordinary, extraordinary people who are our Muddy participants, from all those amazing people I work with and talk to through Muddy Care who are at the frontline of helping the ill and people like myself move forwards, from all those inspirational people I have interviewed who also have chronic conditions and from my lovely medical team.  Those few words are that love, kindness, care of one another and time helps us to manage our grief, our trauma and our pain better.  It never leaves us, permanently. We can adapt though and the journey can be made easier.

Never have we needed each other so much, to lean on and to support one another.  We need the love, care and kindness of a friend, of a colleague, of a pet, a family member, a stranger and if you are lucky enough, a partner to help us breathe, to help us take that next step forwards into uncertainty, into a world where some will just want to escape and run away from right now as it is too much to cope with.  Now is a time when we must expose our vulnerabilities, when we must help pick others up from the floor, when we must prioritise the care of people, when we must support and lighten the loads of those struggling, when we must act as communities, when we must be the best version of ourselves, when we must watch over one another. 

2021 is the year of us humans being braver, stronger, better people, of the human spirit appearing in its best and strongest form, of us taking the hands of those that are broken, that are lost and showing them the direction to recovery and helping them to heal and glue themselves together again.

Ashes

By Claire Guerreso

 

My mind is spun
I've had enough
Feels like I'm burning down the flames rise up
And I can't tell what's coming next
Feels life is like a game of roulette

The one that I need
Help me see beyond the surface
My purpose


You were my North-star
You were my always
You were my god bless
Now I  turn sideways
Maybe you turn to ashes, ashes
When it all comes down
When it all comes down


A cold wind sets, upon my back
The sky is getting full and turning black
I lost my way
When I lost you
I need a moment more, this can't be true

 

The one that I need
Help me see beyond the surface
My purpose


You were my North-star
You were my always
You were my god bless
Now I turn sideways
Who do you turn too
What can you say
Ashes, ashes it all comes down


It all comes down
It all comes down
Ashes, ashes
Ashes, ashes
When it all comes down
When it all comes down
Who do you turn too
When it all comes down


When it all comes down
Ashes, ashes
Ashes, ashes

Geoff HarperMuddy Care CIC
Poem - The Unseen
 
MuddyCare poem - Covid-19
 

When you look at me, what do you see?

Any pain, worries, or fears?

As all is not, as it always appears.

Oh how I struggle sometimes,

To put one foot in front of another.

Can’t always judge a book by it’s cover.

Generally I smile and say ‘I’m fine.’

When asked ‘How are you?’.

Inside may be ‘What am I going to do?’.

Let’s not always keep it to ourselves.

Help people to understand a bit.

Try to open up and talk about it.

Don't give up and listen to your ‘gut’.

Please try to stay strong.

Chin up, smile and keep plodding on.

Its ok to pause, breathe and do only what ‘you’ need.

Look forward and try not to fall back.

Do your best to stay on the right track.

Exercise, gardening and up beat music.

All help to lift my mood.

Also, family, friends, comedy and good food.

Determination and positive thoughts.

Also, laughter and singing,

Sometimes dancing and drinking.

Be as grateful as you can and kind to yourself.

Make the most of what you’ve got.

You see, you still have a lot.

Try to accept what you feel you ‘lost’.

Look hard enough, try new things and you’ll see,

Ways to discover and develop a new ‘me’.

Written by the lovely C2, a Muddy Care participant

Geoff HarperMuddyCare
Another Look at Our JukeBox for June 2020

Hotel Walls

By C1 (CEO Muddy Care CIC)

So, I’ve been trying to decide how to write this for several weeks now, since COVID arrived, as I know some people will be beginning the horrendous journey I started in 2011. I debated about whether I should write this because it will be raw and will sting those in the position I found myself in totally unexpectantly eight and a half years ago. I thought though about how it was for me in the early days and how I wish I had been able to find a story about someone going through what I was going through at the time (and would have to go through for many more years). And if this helps just one person then it is worth writing this. So I went through my tunes and this song I felt was perfect for what I wanted to say. So here we go…

…This song is for all those people who have been totally caught out by a virus damaging an organ(s) / their immune system and turning their lives completely and utterly upside down in multiple facets. This includes the COVID virus but it also includes all the viruses that the medics will never be able to identify despite the numerous blood samples they will take from you and send to the labs. And yes, I fall into this category. It is a standard joke with me and my medics that my virus is unidentifiable. And that makes my treatment plan just so much more difficult because the medics do not know what they are treating. It’s unpredictably in the way it savagely damages my body surprises the medics too. I seem to do everything by the path least walked, including being ill. I have been told by several health and medical people I am both the unluckiest and luckiest person…unluckiest in the damage that has been done to my poor body (I was the text book worst case scenario in the early days) and luckiest in reference to my resilience. But here, let me tell you something. I have worked tirelessly and consistently, persisting with my research into holistic health and wellness and chronic illness, trying to find a way out of this nightmare that has completely consumed my life for so many years, that has taken so many things from me, things that cannot be repaired or replaced. I have lost several years of my life from being so ill. I have been unable to do most things that someone my age takes for granted for several years. I have only existed in some years since 2011. So lucky I am not so sure. It’s like I had to go away for several years and yet I never physically left. My soul though went away and where I went, only those with a chronic condition(s) will understand…but I have returned, a new me who lives each day as brightly and as best as I can.

When your body is ravaged by a virus, some damage will be permanent. There is no pill you can take to change this. It will take you years to recover to a level of living semi normally, not months and the struggles you will have to face will take you to extremes you never knew existed. These struggles will absolutely break you into pieces, on several occasions. I can remember howling (and I mean actually howling) crying, once, on my knees, by myself with my dog by my side, on one of the many occasions I was completely broken into pieces by my illness. I never even knew I could howl and I have not cried like that since. It was one of my lowest, loneliest and most challenging days of my life. My body was absolutely broken and so was I. As Denzel Washington says though, “Fall down seven times, but get up eight.” Only the few closest to you will understand in part how horrific this journey is for you but only those who have been there themselves will really know and understand how bloody horrendous it is / will be for you.

The reality is if your organs have been significantly damaged by a virus this is going to be a long, long, long battle. You will probably evolve into a very different you over those years too. But don’t give up. Be consistent. Be persistent. Be brave. Be bold. Be intentional in everything that you do. Be loving. Be kind. Be hopeful. Have faith and dream of a brighter future.

Claire Muddy Care

I was 37 when I first had to face the prospect of dying. In 2012 I was told I was in the early stages of heart failure. I used to be a GB athlete (for four years too) so try and work out how you cope with that reality easily...you don’t. As the verse so poetically says below, never, ever at 37 had it crossed my mind that what happened to me could happen to me. In three hours, my life changed immeasurably and irreversibly. It probably took three years to accept this and then wham, the curve ball hit me again.

I’ve made several deals with God, with the universe over the years and I even started to pray again when I got ill and one of my closest friends says many a prayer for me. I believe they all help.

“I signed the papers for a lifelong lease I rent the earth where I stay and the air I breathe Then you forget that deal you made with God While busy finding yourself being young, being dumb, and in love It's all too easy and you're easily bored Never once has it crossed your mind that life's too short And there's a third person walking behind us A tap on the back and it's there to remind us Life is a blink of an eye 'til you are no more.”

During my chronic condition journey, I have had to consider the possibility of dying several times. I have laid in my bed at times when I have been really sick wondering what it will be like to lay in my coffin. I do ask, ‘why me?’ sometimes but far less frequently now. Illness does not differentiate nor discriminate. Sometimes it is totally random. Illnesses and viruses are brutal and savage and they can almost destroy lives and in some cases they do. That’s a fact.

My challenges are still immense at times and my future has UNCERTAINTY in big bold letters. But through sheer persistence, knowledge and implementation of so many things I am doing to try and help my body in all facets of health and wellness, I think I am finally finding a way to live a very good and rich life again and with my chronic conditions. They do not define me but they are part of me. It took about seven years though to get to this point and every month now there is a small improvement. And that’s the overwhelming message here. Believe in HOPE. DO NOT GIVE UP!!!! Being seriously ill can feel like an un-winnable battle for a long, long time but the tide can turn…eventually.

Sometimes I am very jealous of those healthy people who have simple and privileged lives. The irony is most healthy people do not realise how simple and privileged their lives really are by just being healthy. But here’s the thing about my life now. It is really good. I still have significant physical challenges some days and emotionally my chronic illnesses still really test me but far less frequently now. I also have so many tools and strategies to use now which makes so much difference in enabling me to live a good life more easily and cope with my challenges so much better than I could in the beginning of my illness journey. I also work with my body these days so much better than I used to. We’ve got a solid partnership now. We are a team. We (my mind and my body) used to be at war.

I am a scientist but I am also incredibly open minded, much more so from becoming ill. Things have happened to me through my illness journey that could be called coincidences, could be called serendipity but some things that have happened to me are neither of them. And these things have helped me accept that there is something far greater than what we can just see. It’s about what we can feel too. My relationship with life and death has changed in many ways since becoming ill as you too will find as your journey with illness evolves. And my relationship with me has changed.

 
IMG_6137.JPG
 

“But all beautiful things come with edges and thorns And the body you borrowed is starting to look kinda worn”.

Muddy Care would have never developed had I not been on this horrendous journey. As my body became more broken, Muddy Care grew and evolved with greater ferocity and beauty to give. So as this song says, all beautiful things (Muddy Care) comes with edges and thorns (my illness). My body is broken in several ways but I continue to glue it back together. And yes it works differently but we are living well and Muddy Care is thriving.

I started to write Muddy Care in 2015 and it has been an impetus to live since then but when we secured the grant funding for Muddy Care Phase A in early 2019, something both strange and transformational started to happen to me. I think it is called healing. The process began at the end of 2017 but it took just over a year for me to realise things were definitely changing for the better. To believe I was finally starting to heal was met with trepidation and scepticism because I have had so many serious relapses. And here is another reality check…when you have been so ill for so long healing doesn’t happen quickly either. This is a massive road trip you will go on.

My illness journey sent me away for several years. My journey broke me completely and utterly and as I started to heal it has allowed me to return to me. I am back now and I love life with an energy and a vigour I never had as a healthy person and I loved life then too. So please believe that brighter days are possible if your journey is sending you away. You will return. You just might be away for a while or a long time like I was.

Gradually I am starting to see this healing process begin in some of the Muddy care participants too. I think it starts to happen when we not only accept the new us but we begin to understand our journey better amongst all the trauma and loss. The complete metamorphosis begins to have meaning.

As I continue to heal and those on Muddy Care begin their own healing journeys, the ripple effect begins…as more people start to heal, they in turn help others to begin this journey. And this is how the Muddy Care community is steadily growing. The Muddy participants are now reaching out as a community to others with a chronic condition(s).

As this song says, life is beautifully ugly at times. You check in, you check out. Everything on earth is rented, but while we’re here we should celebrate life rather than fearing the inevitable death. Many may find these song lyrics quite maudlin. I personally find them refreshingly honest. The melody is upbeat though that reinforces the meaning of this song which is about how opposites can reinforce and actually accentuate feelings and heighten our moral compass. The uglier life becomes, the greater the beauty of life and nature are enhanced. Life is beautiful but we probably don’t realise how beautiful it is until we are left struggling. Being chronically ill you are reminded daily of your struggles but you are also reminded daily about how beautiful life really is, particularly the smaller stuff. Don’t live life recklessly. Life is not meaningless. It is anything but meaningless. And you will probably only realise how important it is to live well and honestly when your own mortality taps you on the shoulder. Live life purposely and well. And the most important things in life; people, pets (particularly spaniel extraordinaires called Finn and Pebble), laughter, kindness, love, care, thoughtfulness, 20 second hugs, kisses, cuddles, the night sky, stars, planets, meteorites, comets, watching the space station and rockets, sunrises, sunsets, the beach, the ocean, the mountains in the sun, the mountains covered in snow, adventures, holding hands, laying in the sun, running in the rain, storms, sitting in the hills watching the sky, a running river, riding a wave, cycling fast down a hill, bird song, a busy bee, butterflies, flowers, cake, music, dancing, heartfelt smiles and a face that expresses without words that they genuinely care for you and will protect you, always, are what we should strive for.

I understand my journey much better now. I have such good, sound people in my life. I have found my purpose and through Muddy Care we are serving others and helping them to find their bright futures again. My life has true meaning. Muddy Care is building, blossoming, growing and helping more and more people to celebrate life again. Here’s a change too. I am even open to finding love again…I haven’t been able to think about this since 2014 because of my illness. That’s a long time to be so ill that you can’t even contemplate having a relationship.

 
IMG_6136.JPG
 

COVID and other viruses have destroyed many lives and will have caused/will cause years of heartache and trauma for many. That’s the reality of viruses when they are serious. However, what I am saying is amongst all this ugliness is a beauty so deep and pure that it will allow you to fight another day and another day after that. And that is how you return to you. Ugliness can actually make your life more beautiful and precious but you will have to go through a hell of a storm(s) to get there. You really will realise not to sweat the small stuff. Keep fighting. DON’T GIVE UP. Life does get beautiful again, I promise. It just takes time.

 

Hotel Walls

I signed the papers for a lifelong lease
I rent the earth where I stay and the air I breathe
Then you forget that deal you made with God
While busy finding yourself being young, being dumb, and in love
It's all too easy and you're easily bored
Never once has it crossed your mind that life's too short
And there's a third person walking behind us
A tap on the back and it's there to remind us
Life is a blink of an eye 'til you are no more

So I stand back and I watch us fall
As we break everything inside these hotel walls
Life's for rent and it called us out
So I hand back the key as the door man bows


They greet you welcome with roses and champagne
When you walk through the lobby they all know your name
But all beautiful things come with edges and thorns
And the body you borrowed is starting to look kinda worn

So I stand back and I watch us fall
As we break everything inside these hotel walls
Life's for rent and it called us out
So I hand back the key as the door man bows


We're just grains in the universe
I let that comfort me when I'm anxious
This life is beautifully ugly at timesWe're just grains in the universe
I let that comfort me when I'm anxious
This life is beautifully ugly at times
It's beautifully ugly at times
It's beautifully ugly at times
It's beautifully ugly at times
It's beautifully ugly at times


So I stand back and I watch us fall
As we break everything inside these hotel walls
You know that life's for rent and it called us out
So I hand back the key as the door man bows

 
 
Geoff Harper
A Day in the life of a key worker with a chronic illness.

I was woken by another ‘virus’ related dream (more like a nightmare to be honest). I struggled to settle back to sleep, so I went into the spare room, as not to disturb my partner. The next thing was my usual 5.15 alarm was going off! Feeling tired again and with another ‘thick’ head, I went down for my daily meds and supplements. I made my hot lemon, ginger and honey drink and did my morning stretch routine, plus stomach and back exercises to try to keep my core strong. These have really helped my back, since I found out that I had two prolapsed discs a couple of years ago, when my back ‘went’ out of the blue! I have always tried to keep reasonable fit, but doing my morning routine for the past couple of years, has really helped me to be able to do my present physical cleaning job.  
I washed, changed and ate a home made ‘power’ ball, did my teeth, put a decaf coffee in my flask and went out to defrost the car. I appreciated the clear sky, shining stars and hopeful moon. The fresh feel livened me up a little.

Several minutes later, I clocked on at 6am at a local supermarket. I put my name next to an emoji face on the staffs ‘mood’ board. Meh/worried. This had sadly been the same choice for a few days. I am usually happy with a ‘sunny’ disposition, but had been struggling for a few days now. With my recent ‘thick’ heads (like a hangover without the alcohol), plus my ‘tummy’ (colon actually because of my Ulcerative Colitis (UC)) playing up a bit and the current Covid19 pandemic. My mood was totally understandable.

The first hour cleaning the shop floor, entrance, public loo, kiosk, emptying outside bins and litter picking the car park, flew by. Easy with no customers to ‘avoid’. I found myself singing a duet with one of the bakers, to an upbeat tune on the in house radio station. I felt happy again. After cleaning some rooms out the back, I had to go on to the shop floor to clean the 52 chillers. I noticed how some of the people looked liked disjointed robots, doing a dance that most were not enjoying, by trying to stay 2 meters apart. A man and I let each other pass and exchanged a good morning and smile.  Simple but lovely. I carried on happily until a while later, when I was rudely disturbed by a woman coming straight up behind me, saying something muffled under her make shift mask. I took a few steps back and said ‘Excuse me?’. She shot forwards towards my face and said ‘Coffee?’. Boy she ‘ruffled my feathers’ with the way she had come so close! I politely pointed her toward the correct isle. I shot out the back, popped to the loo cursing and then had some coffee from my flask. All flustered, I relayed this to the baker and we exchanged a few similar incidents and ended up making each other laugh. Phew, so needed! I finished my work and grabbed some shopping on the way out of work after 9am. I was lucky to get nearly all the essential bits that I needed, apart from potatoes! The shelves had been sparse recently.

I popped by the local doctors surgery on my way home, to drop off a prescription request and was surprised at how different the exterior of the entrance looked, with the huge ‘HALT’ signs with masses of virus information on. It was clear the doors were locked.  I was surprised when a receptionist opened a window next to me and asked me to post my request through the letter box.

On getting home, I wiped down my shopping with anti-bacterial cleaner, then went back out to do the car and house door handles etc. I showered and changed. That felt better. Time to try and relax, so I sat down, had some yummy natural bio yoghurt with blueberries and cinnamon, plus a proper coffee. I was so glad I did not have to go to my second job (even though I love it). I work with adults with learning difficulties, in a workshop where we re-bind old donated books, into notebooks and diaries. I caught up with messages from Muddy Care’ friends on my phone and left my daily check in, on whether I had any Covid symptoms and how I was feeling too. We had done this since our weekly meet ups had been suspended.

Afterwards, I decided it might be a good idea to write my feelings down and that developed into this piece of writing. We were encouraged as children to write our feelings down, even if no one else saw them.  It is good to read it yourself, even if no one else does and destroy afterwards if wanted. The last time I had done this was after a huge UC flare 18 months ago, that put me in hospital twice within a week, for a total of nearly 3 weeks. I had some awful experiences, (as well as meeting a lot of lovely people), so wrote a lot down, destroying it after re-reading it a couple of months later.

I stuck a load of washing on, had a glass of water and did a bit of essential housework. For lunch I had mashed avocado with turmeric (as good for reducing inflammation), on seeded sourdough bread, (as that’s fermented it is supposed to be good for the gut). I was trying to help myself as usual. I read the local newspaper, which did not take long, as it had so little in it these days! No usual car or house sales, no ‘what’s on section’ and hardly any sports news. I hung the washing out (I LOVE being able to do this as it smells great afterwards) and decided to do a bit of gardening. So happy to spot the pair of Redstarts that were nesting in the same bird box on one side of the house as last year. Neither myself, nor my partner had ever seen one until then. I always felt so grateful for our garden and where we live backing onto fields in a little village. I thought about so many people who were in ‘lockdown’, without any outdoor space. That led to sadness and a few tears about all the people dying, being ill, people being separated from their families, suffering mental health issues etc etc etc. Then me missing family, even though I had travelled for a few hours to see them a few months ago, I desperately wanted to again. I thought about my dad who I missed so much since he suddenly died a few years before. Right....I  had to pick my mood up again.

The sun was shining, so I sat in my salvaged deck chair with a glass of water. I noticed an aeroplane trail and wondered who was in it and where they were going. I had not seen any for ages! I had been a sensible girl and put my factor 30 sun spray on, as due to be sunny. I mindfully looked around at all the beautiful plants and trees. I closed my eyes and listened to the various bird songs and chirps. My pampas grass was blowing in the breeze, reminding me of the waves at the seaside. Heaven. We had been so lucky with the lovely weather lately, a godsend for most people I am sure, with ‘the present situation. After allowing myself to relax and doze for a while, I heard a child's voice and realised they were on their ‘daily walk’. Recently, quite a few neighbours had put teddies in their windows, for the children to come and look out for on their daily walks. I had posted a clip from the news of someone else doing it, on our recently set up Community support Facebook page. I went around the front of the house to say hello and have a quick chat, obviously making sure we were well socially distanced. We are so lucky to have so many really lovely neighbours.

After gardening for a while again, I washed my hands and realised how sore and cracked they were. Not surprising with the various cleaning, disposable and gardening gloves, plus washing hands more than usual and using harsh alcohol gels! I got my super-duper hand cream and massaged it on liberally. I had a banana and water, then tidied away the gardening tools and took the dry washing down and put it all away. Great stuff, nothing to iron either! I went inside and text a close friend who was self-isolating, to see if she needed any shopping in the morning. We then spoke to each other and had a lovely, much needed natter. I watered all my pots and was lucky enough to spot a cute rabbit that had been around the estate recently. I’m an outdoor girl who adores nature and animals, always have.

I prepared our evening meal, (called tea where I grew up in Lancashire)… smoked mackerel, with steamed carrots, broccoli and new potatoes. Yummy. I then made my son and partner’s lunches for the next day. After eating, catching up with my ‘boys’ and washing up, I watched part of the news. Some days I could not watch it all, as it left me feeling dreadful, but I wanted to keep up to date. I went for another shower and put on my PJ’s. When I came back down, I popped outside to sit on our front bench for 5 minutes, to watch the couple of bats that live in our garage roof, flit around the house and garden. I never fail to get exited about this. I then watched a bit of telly with my partner. Luckily we like quite a few of the same sort of programmes! I text a few people about Saturn, Mars and Jupiter, that were due to be easily visible early in the morning. We had recently had the pleasure of seeing a ‘pink’ moon and a deep orange one. I trundled off to bed and read some short heart warming stories for about 10 minutes, from a book a friend had given me. I thought about the best bits of the day and gratefully started to drift off to sleep quickly, hoping for pleasant dreams. 

Geoff Harper
Mental health awareness week

Written by Muddy Participant Keira

May is the month of mental health awareness week, falling on the 18th-24th May and is also borderline personality awareness month. Mental health conditions are extremely varied. They include some of the more common conditions like depression, anxiety and OCD to some of the lesser well-known ones like schizoaffective disorder, trichotillomania and complex PTSD. Borderline personality disorder is a mental health condition where people have difficulty regulating their emotions, they may engage in self-destructive behaviours and can form intense relationships with people.

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The theme for this year’s mental health awareness week is kindness and as it falls during a time when many people are struggling, I think the theme of kindness couldn’t be more apt. The pandemic and lockdown has caused a raise in anxiety and depression, even in people who have no history of mental illness and has resulted in people with mental health conditions experiencing more intense symptoms, so it is now more important then ever to be kind to one another.

Kindness can be applied to one another but it can also be applied to yourself. I am part of a community group for people with chronic conditions called Muddy Care and one of the tools that Claire, the leader of Muddy Care, has taught us, is that we need to be kind to ourselves and to listen to our body’s. Being kind to yourself when you have a mental illness is very important, as it can help you to deal with how you are feeling. I have suffered with mental health conditions for 11 years, since I was 17 and I am still learning how to be kind to myself, but when I am having a bad day and feeling very depressed or upset, I am now learning to try to not judge myself for how I’m feeling. It’s OK if I don’t get anything done, it’s OK to cry and it’s OK to have a day to myself and just stay on the sofa all day.

When you suffer from a mental health condition it’s easy to blame yourself for how you’re feeling and to compare yourself to others and judge yourself, but by being kind to yourself you can help to stop these negative thoughts. Allowing yourself a time to cry can help to let those emotions out. Letting yourself eat something comforting can help soothe you or running a warm bath with candles and your favourite songs can help to relax you. Everyone who suffers with a mental health condition is different and is affected differently, but by acknowledging that you are doing your best and realising that even if your path in life is different to others, it doesn’t mean it is any less valid. Through this acknowledgment it can help you to accept your condition and to allow you to show some kindness to yourself.

Being kind to others is just as important as being kind to yourself. Performing an act of kindness helps to cause a ripple effect, where the person who receives the act will feel better and is more likely to carry out an act of kindness themselves and it also causes the person who performed the act to feel better in themselves too.

Acts of kindness are easy to do. It can be something as simple as ringing a friend or family member to see how they are doing. It may not seem much, but it may be the first time that person has spoken to someone in weeks and could be exactly what they need. Sending someone a gift or an item of their wish list can really help to give them a boost, especially if they weren’t expecting it. Telling someone how much they mean to you, can help to bring someone out of their dark thoughts and to realise that they are important to others.

Sometimes it may be hard for people suffering with mental health conditions to reply to your message or to accept your phone call, but don’t stop trying. There will be a time where they are able to respond and your act of kindness of checking in on them or just phoning for a catch-up and a laugh will be greatly appreciated.

So during mental health awareness week and during this pandemic, if you can only do one thing, Be Kind.

Geoff Harper
Walking

Written by Muddy participant C2

Walking.

I LOVE nothing more than a good stomp!
When I go walking, I do it just as much for ‘peace of mind’, as for keeping fit.

I appreciate every aspect of the wonders of nature too. Always have.

When the sun shines, it makes me smile.
When it rains, I put my head down and pick up the pace!
When it’s windy, I feel it blow away my ‘cobwebs’.
When it snows, I feel playful.

I work through my worries walking and being in nature ‘nurtures’ me from ‘top to toe’.

If I’m not well, I have to push myself to go, as I know that with every breath I take, it does me SO much good and I always feel better for it.

Go on....get out there and suck in the fresh air and beauty!

 
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Geoff Harper
How gardening helps my mental health

By Keira

I have always enjoyed gardening, especially the growing of fruit and vegetables. I used to do it a lot when I was younger, when I was suffering from depression and anorexia. I found that gardening allowed me to focus on something other than what was going on in my head and seeing my fruit and veg grow gave me a sense of accomplishment and encouraged me to eat what I had grown.

 

Once again, during this difficult time of being in lockdown, where my mental health is being affected by it, I have turned to gardening and to trying to become more self-sufficient. I live in a first floor flat and don’t actually have a garden, but this doesn’t mean that I can’t grow things.

 

I have started to grow my own veg in my kitchen windowsill from using cut offs from veg, which would usually end up in the bin. So far I have spring onions, carrots, leeks, tomatoes, garlic and lettuce all growing well. I cut off the ends of the spring onions, leeks, lettuce and garlic and kept them in water until they started sprouting, after which I transferred them to compost in pots on my windowsill. I did the same with the carrot tops and cut the tomatoes into slices and placed them in compost too. Once these plants have become well established, I hope to be able to buy less fruit and veg by eating my home grown ones instead. This type of self-sufficiency is something everyone can do; it helps to reduce waste, reduces your carbon footprint and makes you less dependent on imported food.

 
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 Watching my veg start to sprout and grow is actually very mindful, as by tending to them and watering them, it allows me to stay in the present and I feel a sense of achievement by watching them grow. It also adds a bit of routine to my day, which is lacking during these times, by knowing that twice a day I need to water all my plants, check how they are growing and ensure they are getting enough sunlight. This also gives me something to focus on other than what is happening in the world right now. It also reminds me that even though life is on hold for everyone due to the pandemic, nature still carries on and new things can still grow and thrive.

Geoff Harper
Mental health during lock-down

Introduction by CEO, AKA C1

This piece of writing has been written by one of our Muddy participants.  In mid March, as a result of COVID 19, NHS support services were either completely pulled or significantly reduced for several of our participants.  This included mental health support services and additional services such as support during opioid withdrawal.  As a result of these reduced services, Muddy Care is playing an enhanced importance in the lives of our participants and we are now operating seven days a week.

Muddy Care had implemented a daily monitoring protocol immediately from when we had to suspend our activity programme.  The benefits of doing this were immediate and this is the story of our ‘red’ participant, meaning they came to a point where they could no longer cope alone and intervention from other services had to be implemented.

It takes courage and honesty to write this and our participant wrote this to not only tell her story but to help others in a similar situation.  We encourage our participants to be authentic and honest and this piece of writing is exactly that. 

 

Thank you for sharing this.


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Mental health during lock-down

Written by a Muddy Care participant

Living in a lock-down is something that no one has ever experienced before and everyone is struggling with it, whether it be from increased anxiety, fear, sadness or frustration, but for people who suffer from mental illness these feelings are intensified.


I have experienced an increase in my anxiety since the lock-down has been put in place, as well as intense feelings of hopelessness and of being overwhelmed. Normally when I feel like this I would ring my CPN and arrange to see her the next day, so that I could get the support I need from the mental health services, but seeing people in person is now no longer possible. This is one of the things that I struggled with most, as I rely on seeing my CPN and consultants to help me manage my mental and physical health conditions, but as I can no longer do this, I am having to try and manage my conditions myself.


I fully understand the reasons for the lock-down and social distancing, but for people with mental health conditions who have been receiving face-to-face support for many years, this sudden withdrawal in support can feel overwhelming. This is how I felt when it all began. I was completely overwhelmed with the whole situation.  I didn’t know how I would cope without seeing my support team.  I felt I had no one to turn to if I needed help and support and it led to me falling into a crisis. Luckily for me a Muddy friend rang me when I was at my worse. It really helped to talk to her and be able to tell her how I was feeling and to say that I just didn’t know what to do. She encouraged me to ring the duty mental health nurse and to tell my partner how bad I was feeling. I did both of these things and the next day my CPN rang me and we had our appointment over the phone. A phone appointment is not the same as seeing someone in person, but it is better then nothing. She was able to reassure me by saying that she is not leaving me, that she will ring me once a week for our appointments and that I am able to ring duty whenever I feel I need to talk to someone. Knowing that I still have some form of mental health support really helped to calm me down and to feel that I am not alone. But I know that not everyone is as lucky as me, to have weekly support over the phone. I know several people who have had no contact with their CPN for weeks and almost everyone has had their outpatient appointments cancelled, for both physical and mental health conditions.


The self-isolation and social distancing really made an impact on me when I was admitted to A&E a couple of weeks ago. I had been experiencing symptoms of the coronavirus and it was affecting my heart. I rang the coronavirus advice line and because of my underlying health conditions I was told I needed to go to hospital. My partner drove me there, but once I arrived he was not allowed to come in with me. I was took onto the isolation ward and put into my own room, where I was completely on my own. I couldn’t see anything except the four white walls of my room. There was no one for me to talk, to distract me or take my mind off what was happening. The doctors, who were in full protective equipment, would come into my room to do tests, but they would be in and out as quickly as possible and I was left laying in my bed wondering what was going to happen. This was an extremely surreal and difficult situation, especially experiencing it all by myself but somehow I was able to remain calm and I was able to get some form of support from friends and family over the phone. Luckily, I was able to go home later that evening.  This experience really highlighted for me how important it is to have someone you can feel you can turn to when you need help and how much it easier it is to go through difficult situations when you share it with another person as without it people can feel that they are unable to cope.

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I am part of a group called Muddy Care, a community organisation for people with chronic conditions. Since the pandemic all of our meetings and activities have been cancelled, but we have been supporting each other through our online daily group chats and phone calls. These chats are really important to all of us involved in Muddy Care as we have become very close and a real community in every sense of the word since we started the education rehabilitation programme in September 2019. We are able to talk to each other daily and to be honest with each about how we are feeling.  This is much more difficult with people who do not have chronic conditions as our ‘specialness’ is very difficult to understand and comprehend unless you are experiencing the chronic condition journey yourself.  Our CVs often include multiple medical trauma experiences, live changing challenges and consequences that are beyond reasonable with no cure in our sights.  Through Muddy Care we are able to help and support each other and talking about how we are feeling helps to reassure us all that we are not alone and that what we are all experiencing is normal, due to these extraordinary circumstances.

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My mental health support is essential and has become an integral part of my life just as my physical consultant appointments have for my physical chronic conditions.  However, what has become abundantly clear during lockdown is the importance of supporting one another and being their for one another and how different forms of support can all help us in the collective sense.  Whether that is through NHS health and medical professionals or through professional third party organisations such as Muddy Care, we all need to work and help, support and be there for one another.


Geoff Harper
An Introduction to Muddy Covid
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Muddy Care CIC never envisaged, as no one did, that their 2020 strategic plan would have to be adapted and significantly changed so quickly.  I remember in January 2020, sitting in the passenger seat, as Lee (the coeducational leader of the Muddy educational rehabilitation programme) drove us home from our Sunday Muddy rehabilitation day, as are most of our Sundays, and Lee and I turning up the radio listening to the what was then, the epidemic in China.  When they highlighted who was at risk Lee looked at me with raised concern and I felt that concern for myself and all of our Muddies in the minibus.  Most of us fall into the high-risk category, including myself.  And that’s where we need to state as Emily Maitlis has reinforced, that COVID 19 is not a leveller.  It is much, much harder if you fall into this high-risk category and we, the Muddy participants and I have tonnes of fortitude and strength of character.  From someone who started the road of heart failure from damage caused by a virus, believe me, fortitude and strength of character make absolutely no difference in reference to the damage a virus can cause.  To recovery, yes in part.  But definitely not in the severity of impact.  Viruses do not discriminate.  They are hideous.  They can destroy lives and damage organs and systems of the body which sometimes is irreparable.  That is the reality of serious viruses.  COVID 19 is a serious virus.

When it became clear that Muddy Care would have to suspend the Muddy Rehabilitation programme activity and learning days we did two things immediately;


1.       We set up a daily check in protocol with all participants.  They report to us if they have any COVID 19 symptoms and this is communicated as a traffic light system.  They also communicate as a collective how their mental and physical health and wellbeing is.  This system operates seven days a week and will do until the need diminishes.  This information is transferred to an ‘At risk register’ and where necessary we will implement support from outside agencies. 

I knew this had to be implemented immediately because of the nature of our participants.  They are coping with so much without COVID 19 added anxiety and being high risk makes the possible outcomes of this pandemic so much more real.  There are so many more considerations with the complicated medical CVs I and the Muddies (our Muddy Care participants) all have.  But the great thing is we have the professional experience, skills and knowledge to implement this system but most importantly we have built a community that allows this procedure to occur with full participation, every day, because we have built a community in every sense of the word since September 2019.  And within 7 days of setting this care and support system up, we had ambers (require enhanced monitoring and support) and a red (intervention of external agencies or urgent medical intervention needed).  This system may have saved a life and I say that with absolutely no hyperbole attached.   In fact, we haven’t had one day since implementing this system that we haven’t had at least one amber.  This highlights not only how effective third-party organisations can be in supporting and caring for vulnerable groups, but how critical our presence is.

2.       We were looking at the learning theme of ‘how can we serve’ at the time we had to stop physical delivery.  We switched immediately to a distance learning mechanism and the participants took a lead on this project.  Very soon you will see the participants of the Muddy Care mini pilot rehabilitation programme offering support in the way of tools, advice, activities, blogs, Vlogs and other mechanisms to help others with chronic conditions through this time.

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When I built, designed and wrote Muddy Care, I always wanted it to be a community project that supported the NHS.  I continually kept asking myself the question ‘how can Muddy Care serve the chronic condition community?’   I wouldn’t be alive today if it wasn’t for the NHS, seriously.  My team of consultants are my heroes.  My nephrologist, who has worked with me since 2015 in a best practice working relationship (we listen to each other and make a plan together) has been fundamental in improving my quality of life.  I try my hardest and so does he.  He’s there for me when the shit hits the fan and we celebrate when things are going well.   I research and implement anything I can possibly do to help my health and wellness beyond the medical model and he sees this.  And we are winning with this approach. 

The reality is the NHS cannot provide long term rehabilitation support for so many with chronic conditions.  It cannot be funded.  It’s not that they don’t want to.  They can’t.  The Muddy Care model aims to support the NHS services, to enhance holistic health and wellness for those with chronic conditions and we are succeeding.  Our impact evidence, participant testimonials and video diaries from the mini pilot long term rehabilitation programme would indicate in a very positive way that we are doing just that.  If we can help stabilise some conditions and improve independence of management of chronic conditions then we are helping the NHS and building better and brighter futures for our participants.  It’s a win win.

As a result of COVID 19 we are busier than we were pre COVID 19.  It is exceedingly likely that many more people are going to have chronic conditions from the damage of this virus to their bodies.  Some won’t have any damage but some will.  And it’s not about whether you are fit or unfit either.  I competed for Great Britain for four years.  I was by far not your average person who gets sick if there is such a person…I don’t believe there is now.  Life’s curve balls do not pick and choose.

Muddy Care CIC has it’s own working model independent from the health and medical models.  We are developing some extremely positive working relationships with health and medical professionals in mid and South Wales.  We fully support collaborative working and we are demonstrating how well the part professional and experienced educationalists can play in educational rehabilitation programmes.  We are not counsellors.  We are not health and medical professionals.  We are professional outdoor and learning teachers and practitioners with a specialist knowledge of health and wellness specific to chronic conditions.  We support the medical, health and counselling services and expertise.  We are a community built around education pedagogy and philosophies, authentic care and support and the direct experience of the life changing impacts of chronic conditions.

So here we are.  Welcome to our COVID 19 project area.  All pieces here are from the Muddy participants who all have significant and some very serious chronic conditions and this project is also being led by two of our participants.

Stay safe and remember, most underlying health and medical issues are not visible.  Be kind, be thoughtful and be considerate of others. 


Geoff Harper