Advocacy

2020 is not panning out the way any of us anticipated and life feels exceptionally surreal right now ~ pandemic life is truly odd, sometimes I wake up and wonder if it is all some bizarre dream and other days it feels like we are living within some kind of sci~fi movie. Meanwhile other events continue to happen around the world which don't stop because of a virus, however the approach to dealing with them is still impacted by precautions and measures in place.

This has led me to reflect on advocacy more and more ~ how so many of us require a person or agency to be there for us to help us get what is necessary, to stand up for us and demand we be heard and our rights upheld.

I also feel many of us, of which I was one, like to feel that they don't need the help and support of an advocate ~ that we are able to stand up for, speak out and represent ourselves ~ however, for my part, I was fooling myself. I am pretty darn good at advocating for my loved ones but when it comes to myself ~ I'm actually shockingly bad at it and end up backing down and not getting the help, support or validation I required. 

Advocacy in a nutshell is provided by someone, whether it be a friend, family or someone from an agency whether legal, advisory, medical, support, who will speak for you, represent you and stand up for you to ensure your rights, beliefs and wishes are upheld.

And advocate could represent you in a plethora of ways depending on your needs and situation. I advocate for my family mostly within health requirement settings, liaising with medical professionals and outside agencies. Also, as and when needed in other situations too ~ ensuring their voices are heard, they are listened to and understood. 

For myself ~ I have family who advocate for me - we find we are good at helping others but not ourselves, almost as if we don't believe in our worth for fighting for ourselves but can absolutely do it for others. I struggle with confrontation when its aimed towards me and often back down and give in ~ yet when representing someone else I find the confidence and strength to not back down and to keep pushing forward. 

Now, more than ever, with the world changed within the strange void of 2020, where access to many services is severely limited and the environment of social distancing and facemasks makes it more complicated, advocating for yourself or others in time of need is even more important. 

Watching the news I despair at the treatment of so many who need support, safety and protection for the migrants desperately seeking a better life ~ these people need advocates to help them find the refuge they seek but instead government officials just want to make them someone else's problem and return them to where they departed from. Why can't special receiving units be build ~ or perhaps utilise the Nightingale wards to offer a safe place to sleep and be given health checks ~ all those poor unaccompanied children who need safety and security - they are human beings who deserve compassion and assistance because only the desperate would risk their lives to find a better life like this. I honestly believe in fighting to help those less fortunate because none of us choose what life we are born into - it is a lottery and if we are born into a safe environment then we should acknowledge our privilege and work to share what we can with others less fortunate. 

Having said that ~ everything is relative and so we give what we can depending on our circumstances and if everyone did the same what a different world we could live in. My eldest daughter is passionate about helping others and her degree was devoted to exactly that ~ helping those in developing countries and those displaced by war, poverty and natural disaster ~ doing what can be done to help those in situations we count ourselves lucky not to be facing ~ instead of pretending it doesn't exist, isn't happening and isn't our problem we can all do our bit to help bring about change and a better lives for others. Nothing in life, sadly, is a simple fix, life is always far more complicated than that ~ but advocating for others where we can is one part we can play in making this world a better place. 

Wherever there is darkness, there is also light ~ so whenever I see stories and video of the awful plight of others, I also look for the stories where people have been helped, supported and their lives changed. I find I need to seek balance otherwise the negativity and horrors of the world can become overwhelming and so finding the tales of joy, overcoming the odds, sheer kindness and selflessness of others makes me believe in the human race again and that perhaps not all humanity is doomed after all.

COVID~19 has irrevocably changed so many peoples lives, many have lost loved ones, jobs, careers, homes, way of life and yes ~ even hope. Too many have succumbed to severe mental health issues leading to taking their own lives or those of others ~ too much heartbreak has tipped the balance. However, volunteers and carers, support workers and key works, have picked up the baton and kept things moving and working as best as possible in the circumstances. Advocacy is essential for those who have fallen between the gaps ~ who have been overlooked and passed over ~ there needs to be strong representation for those who are vulnerable and for the growing numbers of those living in poverty and isolation due to the changes 2020 has wrought.

Can you stand up and advocate for someone who needs it? If so I implore you to do so ~ further afield we can all join forces to lobby and protest against the vile treatments of those who seek help and refuge but are shunned and refused it. To stand up for those minority groups who are mistreated and abused ~ whatever, however, you can advocate for the rights and beliefs of others your voice added to the cause can make a real difference so long as we sustain our efforts to do so.

Advocacy and activism are so important, now more than ever, and I vow to do all I can to play my part in whatever way I can to step up and do so.

Wishing you love and light wherever you are and hope that if you are struggling you can find an advocate to help you through and speak out for you and your rights to ensure you are "seen" and "heard" and not passed over. 

Love and Blessings

x~X~x

Lucky

I am lucky - pure and simple - and I have been reminded of that again today.

I had found myself in a funk, the world is a scary place right now and it frightened me and had made me a tad low in mood.

Then a gift today woke me up and shook me up - I feel as if I have been zapped awake again and can once again see positivity and hope in the future.

Having my birthday during lockdown meant my presents (that I had asked not to be given this year - tsk - but did they listen?), were belated, as everything is taking much longer to be delivered due to the unprecedented high demand us online shoppers are creating.

However cross I was at my family for ignoring me and buying me gifts I have to say the thought and love behind them is awesome and I love them all and have been thrilled by their thoughtfulness and generosity, knowing how limited their finances are right now.

On my actual birthday in May they all gave me flowers, chocolates and wine. Which I loved, and I had a wonderful day.

Then presents continued to arrive as you will see below, each one pertinent to my likes and way of life and so hugely loved - with opening each gift I cried, quite hard in fact which I am attributing to unstable menopausal hormones and deep appreciation of the consideration given to each gift.

First to arrive was a trio of books from my husband, who knows I am very much into studying and working towards growing and making my own medicinal stockpile of home remedies.

My gorgeous husband on a boat last September when we were away in Greece

Brilliant Books!

I am working towards taking an online herbology class at my Pagan school and so these books mean the world to me.

Next came a socially distanced garden visit from my second born daughter and her partner, with their gorgeous and enormous 9 month old German Shepherd/Bull Mastiff cross puppy. The visit alone was wonderful but then they left me with two little boxes wrapped up to open when they left - which once unwrapped exposed a gorgeous deep glossy black cauldron mug and candle melt/incense burner. I love the mug so much I have put it on my altar because I am terrified of chipping it and have decreed to only drink from it each year on my birthday! The burner will be used during spell and ritual work - both of which I adore and feel enormously grateful for.

Second born offspring

Partner  of second born and their massive 9 month old puppy 

Mug

Burner

Then finally, today the final gift arrived - one that again reduced me as always into a blubbering wreck of overwhelming emotions.

A little background as to why this gift is so special is that I have multiple allergies - which makes jewellery particularly difficult as I can only wear titanium. My family know that I love divination and particularly using runes - I have three sets of runes, all of which I love. Plus, I am hugely drawn to trees, they bring me much peace and happiness when around them. Family is also very important to me and I become very attached to the sentiment behind gifts and hold onto them and cherish them.

I used to always wear a watch, a metal mans watch that my husband gave me before we were married - a simple inexpensive watch that meant the world to me, but due to allergies I can no longer wear - although I still have it. My daughter enquired a few months ago whether I missed wearing a watch and I told her I did but had given up on one because I didn't know if titanium watches were even a thing, let alone affordable.

SO, my first and third born offspring clubbed together and purchased the gifts (seen below) hand crafted from someone with a small business in Israel.

First born offspring

Third born offspring

The beautiful box the gift arrived in with special tool and additional links should they be required.

A gorgeous box to keep forever

My beautiful wooden watch, carved with runes around it and the tree of life in the centre,
even more amazing is that I discovered that the hands of the watch are glow in the dark too!!

Message engraved into the back of the watch

Gorgeous wooden bead on elastic mala bracelet

Cheesy picture of a very happy me wearing both my new gifts!!

The watch is a retro wind up one and not battery run - which I LOVE, plus all the little personal finishing touches to its design. Something that is very special to me and will be forever treasured.

I feel exceptionally fortunate and super lucky to have such a wonderful family around me - they keep me grounded and remind me when feeling in even the lowest of moods that a spark of happiness can be reignited even when you thought it had been extinguished within you.

I just wanted to share this with you because today reminded me to look up and see those people who care and love me and that we matter, all of us - and we are loved, even when we don't always see it.

Love and Blessings

x~X~x

Garden Life

When I was younger I could never understand the pleasure in gardening, it all just looked like hard work with little pleasure. This possibly could be because when younger my job was raking up grass, gathering up and bagging hedge clippings and picking up dog poo - so not very rewarding tasks to be fair.

Then I married and had children, since I've been married we have moved 11 times and so gardening and making a lovely space wasn't really on my mind. Instead I looked at lawn space for swing sets, sand pits and paddling pools and enough of an area to run around a bit too. Practicality and low maintenance were pretty much the criteria I worked from.

Now though, the pace of life is much slower, partially due to the children now being adults and partially due to health limitations enforcing the slower gentler way of living.

We have been in our current home longer than any other and plan to remain here until we are carried out toes first. Its been a slow labour of love creating a home we love. The garden has been transformed more than anything from bare muddy area with enormous pond that could have been converted into a pool to a more useful, sectioned and purposeful space.

We now have a lovely freshly laid large patio area, replacing the original old shingled, decked and clay mud soaked grass area. Our garden is tiered onto two levels and so steps have been put in to bring us up onto the lawn.

Up the steps we have created a fire pit area, along with a small-ish log storing shed for easy fuel access. Instead of extending the patio up onto this part, which we considered, we decided to use a gravel that matches the tones of the patio slabs with a wooden edging to separate it from the lawn. This is because we feel that slabs would look too heavy and too much against the rest of the lawn if extended upwards onto the second tier. This way, with the complementing gravel and patio pots, the tiered seating area will blend more gently into the lawn area.

We also have a designated bird area, with two sets of feeders and a bird bath - plus a picnic table with fixed food bowl for both birds and squirrels in addition to a squirrel feeding station.

I am in the process of building up patio pots full of bee and butterfly friendly plants, I'm making good progress and loving seeing the pollinators that are visiting already.

We have a green shed with the lawnmower and odds and sods in which is quite old and ugly - so we have repainted it green and put up green trellis, covering the shed windows and planted climbing plants to train them to cover the shed side to make it a beautiful flower covered space, which will be far nicer to look at. I am still waiting for a few climbing plants to be delivered and will pot them as soon as they arrive.

Our neighbour knew my plans and surprised me last night with two climbing plants with beautiful blue/purple flowers to plant by the shed. This particular worker is a key worker (nurse practitioner in A&E) and her husband is a key worker too - mostly they dovetail and can have someone home whilst the other is on shift. However, occasionally they both have to work at the same time - and so she asks me every now and then to go into her garden and play with her dog for half and hour or so, to keep him company, let him exercise and have a toilet break whilst both herself and her husband are at work. Obviously, as a dog lover, this is no chore whatsoever and an absolute pleasure to be able to do something to help out my lovely neighbours whilst they go to work. Whilst dog sitting I noticed some really lovely flowers climbing up a frame in her garden and asked for their name so I knew what to look out for, to buy for the green shed project. I couldn't get any when at the garden centre a couple of days ago because it had been cleared out pretty much - so when she asked me if I had got any I told her sadly no - but hopefully I will get them the next trip. However, she had other plans and gifted me the two coveted plants as a thank you for dog sitting. I was so emotional that I cried (I blame the menopause) because despite working in a tough job on the nursing front line she thought to get me the plants just for looking after her dog - which I love doing anyway.

On the far side of our garden we have raised vegetable plots, newly installed and will - in exactly 7 days - be topped up with fresh top soil so that they will be full and ready for planting, They currently with green mesh over them to stop our dogs digging up and eating the stinky compost we mixed into the soil from our three composters when we moved them to by the green house.

We also have a second hand newly glazed greenhouse for my potting and seeding purposes and the area around the greenhouse is where I have my mini fruit tree orchard of just three trees right now - all dwarf heavy fruiting trees and currently in patio pots because our soil is so heavy clay nothing seems to grow in it and past attempts to plant trees in it failed. So currently we have a pear, apple and plum tree which are situated in the area around the greenhouse and vegetable plots. To help the insects and add a little wild garden vibe to the area I have managed to seed butterfly and bee friendly wild flowers which should hopefully sprout within the next few weeks, along with a load of bee bombs in soil capsules too. Later this year we will take the trees from the pots and dig them into the earth - but mix the clay earth with sand to make it better drainage for them.

Our buddleia is growing nicely ready for the butterflies and bees to enjoy in a few weeks time and a stubborn Yucca is coming back further along the same border - we cut it right back to a low stump because it was diseased but it has determinedly sprouted back and so we are going to let it.

Next years project is to add a small wildlife pond, in front of the buddleia, for frogs and newts, we have them visit our garden and spawn in plant pots, so they need a secure home providing where the spawn can thrive and not wither and die.

This is the spot I have picked for the pond.

mock up of what I am planning

I have ordered 8 young mixed holly bushes (4 different varieties for colour and interest) to put along the back fence to fill in the gaps because so many plants just die that I plant there - the birds loved our old holly tree that we recently had to chop down due to disease and so the bushes will fill the gaps and provide cover for them (and berries) as they grow and mature.

I have also ordered three climbing plants, one for the gap to climb up the trellis, one to climb up the wall on the patio near my herb table and the last one to climb up the wall of the extension by the garage.

Finally, we are just waiting to have the pump installed into our water feature - the electrician is coming in a weeks time - as it is outdoors and can be fitted whilst social distancing. He is also adding two single outdoor sockets to the post of the hut so I can fit outdoor fairy lights around the hut thatched roof and the second socket will be perfect for plugging in a radio or whatever.

To the left of the photograph below is a new border which is also gravelled and I plan to fill with bee and butterfly friendly plants. The edges will be finished off with coping stones in a weeks time and tidy the whole feature up.

I have so much more to do with this garden and I have so many plans and feel I have many years of enjoyment developing it ahead of me. This is and has been throughout lockdown, my sanctuary, a quiet place full of bird song and insect activity. I love to sit and just watch our wildlife visitors and look forward to the planned pond addition next year to extend my wildlife friendly garden to the aquatic visitors too. Having health issues meaning I spend 99% of my time at home having the extension with my new downstairs bedroom and wet-room leading out into the garden from my bedroom patio door has transformed the quality of my life. I can lie in bed and watch the wildlife or sit in my rocking chair by the window on days when the weather is bad. On days when it is warm and dry the patio door is left wide open and bedroom and garden become one.

Love and Blessings

x~X~x

Holding On, focusing on Mind, Body & Soul

Life is weird isn't it - who could have predicted the reality we are currently living in?

We are all living this alternate reality, many of us remaining confined within our homes, adhering to lockdown measures - others coming out the other side and emerging from their homes into a very different world from before.

Mental and physical health issues are more than likely exacerbated by the pandemic as restrictions to access to normal regular supportive care is blocked by measures put in place to stay the viruses progress throughout society. In addition to regular supportive care for existing conditions being inaccessible there are those who are new sufferers, with new conditions needing diagnosing, treating and supporting - how many people are dealing with issues that should be being addressed? 

Grief is abundant as our loved ones become sick and we cannot visit them, some survive whilst others sadly move on to the Summerland. We can't follow the grieving process as we would normally do, no visitation of the deceased in the chapel of rest, no proper funeral service with our friends and family around us and no wake to support each other whilst reminiscing and honouring our loved one. It makes the situation feel surreal making the reality of what has happened difficult to grasp and address.

We are all living in different situations, some alone, some with partners and others with friends and/or family. All have different and unique complications and difficulties to address, being so tightly restricted by the boundary of our homes. I feel for each and everyone of you, whichever situation you find yourself in - none more or less challenging than the other - everything is relative.

Whilst I am lucky to be isolating with my husband and two of my three daughters I am still struggling. Not so much because of not being able to leave my home - that is my normal - I rarely venture out due to limitations of chronic illness.  For those who don't know I'll just name them with a link to each condition which will explain what it is if it isn't something you have come across before - I am admittedly a little greedy and see to have "collected" a few over the years, a collection I would gladly be rid of. These conditions are Myalgic Encephalomyelitis, Fibromyalgia, Hypermobility Ehlers-Danlos Syndrome, Diverticulitis, Chronic long term depression since the age of 18, and Multiple Allergies - the worst culprits being all forms of fragrance and latex.  

Whilst in lockdown I miss my middle daughter horribly - she lives locally and is so very near for me not to be able to hug her and spend time with her. I know many of you are experiencing this and my heart goes out especially to those of you isolating alone and having to rely on video calls and so on for social contact.

I have only been out of the house four times since lockdown began, once to try and walk in the meadows - it was too exhausting for me and I haven't ventured out since. Then twice in the car - to drive and register a death and then later to attend a funeral. After that weeks went by without trying to go out again. This week I tried to bake flapjack - it was a disaster and no flapjacks were made, however the disastrous flapjacks resulted in chonky yummy oat biscuit things instead. I cut them up and packaged some into a box and my my husband drove me to her home to drop them off for her to cheer her up.

It was wonderful to see her as she opened her front door to retrieve the treats as we waved to her from the roadside. My heart ached as I saw her and the urge to go across to her and hold her in a massive bear hug was immense - but I didn't and instead told her I loved her and felt comforted having seen her. Having a compromised immune system I wore my facemask for the first time whilst we were out - a pack of two made by a woman in her home trying to do what she could to make a living during the pandemic. I took my mask down briefly (but only because no one else was around and we were more than two metres apart - I hasten to add) when her dog was out because he is a puppy (all be it an enormous one) who would have been spooked by it - she had him on his harness and on a long lead so he could approach us for fuss whilst keeping our distance from each other. He is a Bull Mastiff Alsatian cross and gorgeously friendly but at 7 months is bigger than an average Lab and STILL growing!

Here are a couple of photos (and yes the "flapjacks" were more like hobnobs in taste and texture). 

Vegan failed flapjacks but okay if thought as oat chonky biscuits

Said vegan "biscuits" packaged for middle born offspring

Me and my other half - ready to make the deliver of the oat treats

Middle born offspring with her 7 month old puppy - AND HE'S STILL GROWING!

I'm finding my pagan belief to be immensely comforting to me right now - I am utilising different aspects of it to help feed and soothe my mind, body and soul. 

Meditation is not easy for many of us and has taken me a while to get the hang of it but now I really feel the benefit of practicing it. I prefer guided meditations to keep me focussed and so utilise YouTube to search out new and different meditations - I have a few favourites but enjoy trying new ones too. 

I also love Tai Chi, it helps to put on some gentle music and just go through the movements very slowly, emptying the mind and just focusing on moving your body gently, smoothly and slowly as you go through the routine. I have an appalling memory and so often do things wrong and need to sort out the video to work to so that I can get it right each time instead of my usual ad hoc approach. Even better is doing the movements in the garden barefoot on the grass - it feels incredibly primal and helps me to ground myself and tune into both the Tai Chi and nature simultaneously.

I am a member of a online pagan school, which I love, yet focussing my mind on study has been an unexpected difficulty - an obstacle I keep trying to chip away at and has meant my assignments are taking much longer for me to complete and require multiple reviews prior to submission. This made me think of all the students out there from school through to university ages and how the lockdown must be affecting them and their studies and ability to concentrate too.

For me, my personal haven is my garden, it is a small oasis where I can stop, empty my mind and chill. I am fortunate to have a decent sized garden, it is pretty much a blank canvas right now due to building works having wrecked it pretty much. I have some potted plants, a few surviving herbs, some potted patio miniature trees and a large grass area. I am planning how to landscape which is a constantly evolving process as I keep changing my mind.

Right now we have long grass and the wild flowers are growing on the lawn - I want to keep it but my husband doesn't so he compromises by only cutting it now and then so between times I can enjoy the longer grass and flowers. As an additional compromise he has created an area where I can plant wildflowers once we have cultivated the soil from the hard cracked brown area it is at them moment Our raised vegetable plots are waiting for lockdown measures to ease so we can have a large amount of top soil delivered to fill them with - and my greenhouse stands empty waiting for compost, seeds and pots etc to fill it.

So for now I am tending to my existing patio pots and trees, enjoying the wildflowers and the antics of the many varied garden birds that come to see us, along with our squirrel family. Just sitting outside, in all weathers, is awesome - we have a hut on the patio which shelters me from rain and allows me good views of the bird and squirrel feeder.

I like to hold onto my camera and snap random pictures when I can, although I had a period of weeks at the beginning of lockdown when my cameral lay untouched as I lost the desire to do anything.

Now, I focus on coping mechanisms, how to remain sane among the insanity of this situation, ensuring I tend to my mind body and soul as best I can and try to help those I love find their own coping strategy. Sometimes all you can do is stop and listen, just to be there, say nothing and offer silent support and understanding. 

Feeding my spiritual, physical and emotional aspects is helping me through - I won't lie, I'm still finding it a real struggle. The hardest struggle is against my own body, inexplicably its crashed and I am having increased physical and mental exacerbation of symptoms. My mobility has massively been impacted as I struggle just to get up and walk about the home and garden, the idea of a once possible short walk to the local meadow is now out of the question. I have fear of this being a new normal and not improving, however I push that to the back of my mind and am hopeful that with careful daily practice I can improve over time.

This month is chronic invisible awareness month which includes all of my conditions among others. For me lockdown is my everyday - with the exception that I can't see those outside my home who I would normally have visit and the disruption of some services I would normally be utilising. For those of you who are fit and well this reality you are finding yourself in is how many of us with invisible disabilities live all the time. Measures have been made to help everyone in lockdown - measures which were deemed impossible when called for over the years for the disabled population prior to the pandemic. I hope some these measures will continue to be available to disable people once the pandemic is in the rear view mirror - but somehow I have a feeling that this is somewhat an over optimistic hope. 

All I can hope is that you can hold on, focus on balancing the needs of your mind, body and soul during this dark time and have the ability to reach out to others for help should you need it. To find support through phone calls, video calls, letters, conversations through windows or over the garden fence. To have the concentration to focus on that which interests you - be it bird watching, reading, painting, baking (if you can find eggs, flour and sugar - its been ages since I've had any flour or caster sugar for baking), studying a new interest, singing, dancing - whatever it is that helps make you feel alive and happy.

For those of you who are grieving my heart aches for you - I think almost all of us have lost someone during this time, sometimes multiple people and it hurts. Allow yourself to feel grief, anger, loss, hurt  among the vast spectrum of emotions - do whatever it takes to cope with the situation you find yourself in. Scream into a pillow if you are close to others and may scare them - if you are lucky and have space go outside and let out a primal scream, pound the ground, let yourself go and vent. Cry, laugh, shout, scream - whatever works for you. It may be that you just want to be still and quiet - if so take yourself to a quiet safe space and allow yourself the silence and the time to process.

Most of all allow yourself to love yourself and all your flaws - perfection to me is someone who can embrace who they are, just as they are and wholly love themselves. I'm not there yet - but I work towards it perfection is accepting our imperfections, acknowledging, accepting and living with them Working on what needs attention and letting go of others expectations - our lives are ours and therefore we live to satisfy our goals, dreams, ambitions and ethical choices/judgements. If someone is not to your liking you don't have to have them in your life, we don't have to like everyone or be liked by everyone. It's taken me a while to get that - but I'm getting there, it's been a slow process.

Love and tolerance are hard to offer when you don't agree with how a person lives or their beliefs but I am making a concerted effort to practice what I preach. I'm not without fault and have at times fallen short with frustration and anger or disbelief at the actions of others, it is exceptionally difficult at times, especially when I see it having a detrimental impact on others. This is when I have to look at my personal ethical code and decide on how to proceed. 

I hope today is kind to you, that you are holding on and know that at some point in the future the pandemic measures will ease. The fear and anxiety may remain for some time yet - we have no idea where we are going with this virus and how it will shape our future. Perhaps the knowledge that we are all in this together and are not alone in these emotions and thoughts helps - perhaps it doesn't. All I know is that we must be kind to one another, we are all living in different circumstances fighting a common enemy. How we react, behave and cope will be different - keep your heart and mind open to supporting others, even if you disagree with how they may behave - we will never know each others full story and what drives us to behave the way we do. Often with the full facts in front of us we see a competently different picture- its all about perspective.

Love & Blessings

x~X~x

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Lockdown Awareness

I haven't posted on this blog for a while and feel bad for neglecting it - being May and invisible illness awareness month plus the month for nurse awareness week it seemed apt to discuss both the lockdown due to the pandemic, nurses and carers plus chronic illness awareness.

In my pre-chronic illness days I was a nurse and I whole heartedly support all those within the caring profession for their dedication to their jobs. It is not something you can do unless you genuinely care about the job and caring for others. I LOVED being a nurse and miss it terribly, yet the knowledge and skills I learnt haven't gone to waste and they have been/are utilised in my private life when caring for my family when addressing accidents and in times of illness. 

As a family we have used the Children's hospital heavily, with many inpatient episodes throughout the girls childhood and adolescence. As adults we have utilised many departments from cardiac, A&E, physiotherapy, hydrotherapy, mental health services and regular outpatient support. Our NHS has been invaluable to us and I cannot express how passionately I feel about supporting and caring for those who work within this service. 

I have quite a list of chronic conditions from multiple allergies to auto immune illnesses which mean that I am predominately house bound, sometimes bed or sofa bound and rarely get out and about and if I do I have to utilise mobility aids and plan the excursion carefully. I am currently looking into a mobility scooter but finances due to the pandemic mean that this may be on a wish list for a while. 

For many, life in lockdown is hard, the limitation of freedom especially, loneliness and isolation a struggle to adjust to - however, this is my normal. The only change for me is that my loved ones can't visit and I have heightened anxiety due to fear of either myself or a loved one contracting the virus. Lockdown life is pretty much my everyday reality, not one I would have chosen for myself and one that crept into my life insidiously, eroding my abilities and freedom little by little, until I reached the situation I now find myself in.

The problem with many of these chronic illnesses are that they are invisible - you can't see them and so you wouldn't know to look at me and others like me, that we are sick. This leads to disbelief and a long and ongoing fight for the proper support and treatment. Media misinformation doesn't help our fight and so finding someone willing to speak out and support us is always incredible, so imagine my delight when I came across the wonderful Miranda Hart on Instagram and her posts raising awareness about chronic illness!

I love Miranda Hart and have often been likened to her TV character, which I will take as a compliment - I thank you.

When I came across her Instagram I immediately followed her and I am awed by her advocacy for Chronic Illness (if you have Instagram I urge you to follow her). This woman "gets" it and it feels wonderful to be "seen". Take a look at this post below (found on YouTube because I couldn't embed the Instagram video on here)

The pandemic and resulting lockdown is hard on everyone - looking at those staying at home I often think of the impact it has on the elderly - those living in nursing or care homes and those living alone at home. If in a care home I reassure myself that at least they have others around them - but I worry about the elderly living alone without the support - who must suffer horribly from loneliness and anxiety. For those of us fortunate enough to live with family we have to ensure time alone for each of us - to have space to just "be" but also to allow any tensions to ease. I love my family and we are fortunate to get on well with each other - but what about those who live with someone toxic or abusive - I worry for their well being. For children who need extra support who may live in difficult circumstances, for the poor, for the homeless, for those struggling to hold onto their businesses, their jobs, their homes.

Life is going to be different from now on, things will take some time to return to some sort of normal and we all need to be aware of the myriad of difficulties we are all facing and support each other and not tear each other down. My priority once lockdown eases will be to support local businesses and also buy local produce and hope that others will do too - so that they can regain their livelihoods. I will minimise my online shopping, which is obviously a necessity right now - not stop altogether because there are some instances where the only place I can access these products is to shop online - plus many small businesses operate online who will also need supporting.

My normal is mostly pretty rubbish - I suffer constant pain, its much worse now since I had to come off my long term pain medications because they were making my kidney function suffer. I heavily utilise meditation and my Wiccan practices to help me cope with the situation and find that this spirituality really does have a positive impact on helping me cope. I can't exercise anymore - something I sorely miss, I used to walk miles everyday with the dogs, anywhere from 2 to 7 miles a day at a good fast pace and would feel refreshed and invigorated afterwards. No more swimming (I couldn't tolerate hydrotherapy either) or tennis. However, I have learnt Tai Chi For Arthritis via the Rheumatology Physiotherapist, which is helpful in keeping my joints moving and gentle enough to not hurt me. However - this inability to "do" a great deal let alone exercise, plus the impact of past medications, has led to a large increase in weight which I now can't shift. I have been supported fantastically by the medical profession regarding this and told that I have to accept that this is "me" now because it is physically impossible for me to do any aerobic exercise and I eat a good healthy diet and don't consume too many calories - if anything I don't consume enough. 

The thing is - when you have a hidden illness, others will judge you negatively - they see the weight and the lack of energy and movement and assume you are fat and lazy. Fighting negative judgements from strangers or those who don't know you well is tough. Justifying why I have a blue badge when I am seen walking sometimes without aids is frustrating. As is putting up with the snide remarks and sidelong looks. I wear my supports when I need to but also try to not rely on them because I don't want my joints to get too weak. I walk with my crutches when I need to but try to walk short distances without them to maintain what strength I have. 

Nurses and all the other medical professionals, support workers, teachers, cleaners, distribution agencies, drivers, and all the other many varied keyworkers keeping our country running as best as possible whilst the rest of us remain at home are all incredible and worthy of our appreciation and support. I participated in the clap for carers for the first few weeks because I am very grateful for the work everyone is doing and the risks they are taking on our behalf. BUT I don't clap on my doorstep anymore, which doesn't mean I have stopped my support or appreciation for what they do - quite the opposite - it's because I felt it wasn't enough to just clap as a thank you, more needs to be done. Supporting and vocalising the need for PPE, for real support for those needing it is more important and so I lend my voice to advocacy for them and lobbying for what they need. I do my part in helping my neighbours when I can too. Standing on my doorstep clapping doesn't do anything for them and many of my old nursing colleagues would much prefer real help and support right now instead. 

For many of you this will end, the lockdown will be eased and you will be able to leave your homes and start to pick up the pieces of your lives and build upon them to regain the pre lockdown life you had. For us with invisible and visible chronic illnesses our lives won't change much at all, with the exception of others being able to visit us. Many of you will be able to return to employment and an income - not all of us can. 

For some it will mean hardships if business or jobs were lost - but if you have your health you have the potential to earn and get a job, it may not be the job or hours you want but it will be a start. I will support anyone wherever I can who is in this situation and know that the foodbanks and charities will be needing a lot more input during the forthcoming months/years because of this too.

It's not a competition, I'm just trying to share the different realities and try to use this experience of lockdown to give you a glimpse of our world, our limitations and financial difficulties at a time when you may be able to get a feel of what it would be like to live like this full time.

We have to live on disability allowances IF we are fortunate enough to navigate the system to receive them and as you may be aware, its not a huge amount to live off either. Plus it entails numerous form filling, interviews and then refusals with many having to go through the appeal process in order to do so. I don't receive the money because my husband earns an income - not a huge one but enough for them to deny me any funding, despite my doctors writing letters of support to say I qualify for it.

So to the outward world, on the occasion that I go out or receive visitors I may look like this, because I am dressed and have made an attempt to look like everything is okay..

However, most of the time I look like this, which isn't such fun..

Without my family and my husband I dread to think how I would cope ~ they love me and care for me as well as living with their own health issues. We are a team and that is how we get through life, by working together and supporting each other. I know that I am fortunate and that although life isn't how I had planned it, it is still a life worth living and fighting for. One that is precious and valuable - so I will continue with the lockdown for however long is necessary and not complain. When lockdown eases my life won't really change but I will be vigilant about who I will be in contact with and take precautions until a vaccine is available - no matter how far away that may be.

I send love and light to all of you, each one of us is in our own unique situation and I acknowledge how difficult it is for many of us, no matter our age, health, sex or privilege -  mental health issues can affect us all and life can be a challenge.

I note and mourn each time I hear of a new death due to the virus, losing a loved on at this time is so much harder because the grieving process is impacted by the restrictions relating to visiting, funerals and access to help.

My heart also aches for the health care professionals who die as a result of catching this virus from working on the front line, as well as anyone else who passes away whose jobs to keep the country moving put them in a position of exposing themselves to the virus.

I thank all key workers from any and every essential job that you do for your service and dedication to keep things working for us. I sincerely wish I could do my part and am enormously grateful for your input.

I ask only one thing, at then end of all this, when life seems to have returned to normality and the pandemic is in the rear view mirror - please remember how it felt to live in lockdown and have some compassion for those of us who live like this everyday. To be "seen" is incredibly validating - to know that advocacy and support is out there for us and the potential for future adequate support and understanding for these conditions would be amazing.

It would be wonderful to one day not feel invisible and to be seen.

I end with this follow up video from Miranda about Chronic Illness, in case you haven't seen it.

Thank you for reading.

~ Brightest Blessings ~

 x~X~x

Facts About Season Influenza Versus COVID-19

Fact: Influenza in humans has been around for literally thousands of years - it is thought possibly for about 6,000 years.  The main school of though is that we first acquired 'flu from animals during the period when animal domestication began. However, because it has been around for so long many of us have managed to build up some immunity to it. Plus, each year vaccinations are offered to vulnerable people to help protect them from contracting the virus. Most deaths from 'flu are within the elderly populations.

Fact: COVID-19 is a brand new disease and so we have no immunity to it, this means it is highly infectious and can spread swiftly throughout the population if measures to contain it aren't taken and that is why there is so much hype about this illness and the need to quarantine people who may potentially be incubating the disease.

To my mind the measures being put in place are not overkill but very sensible protocols to try and contain and quell the spread of the virus. Having a number of direct family members who are classed as being within the "at risk" group of developing a more serious case of the illness should they catch it, including myself, I can hand on heart say I welcome all the precautions being put in place - it is far better to be safe than sorry, don't you think?

"Given that COVID-19 is a new disease, it is understandable that its emergence and spread cause confusion, anxiety and fear among the general public." World Health Organisation.

I thought I would work through definitions, signs and symptoms and so on of each virus to compare to try and clarify the differences between them.


So what is COVID-19? - It is one of the rather large family of Coronaviruses, these can affect both animals and humans depending on the strain of the virus. Many of the Coronaviruses in humans affect the respiratory tract these include our common cold, which is only a mild virus to the more serious viruses such as Middle East Respiratory Syndrome (MERS), Severe Acute Respiratory Syndrome (SARS) and now the newly emerged COVID-19. It has been classed as being a "High Consequence Infectious Disease"(HCID), of which Ebola is one and now COVID-19 has been added to that list too.


So what is Influenza? - As I said earlier, 'flu has been around for thousands of years and so scientists have built up a solid knowledge base about how the virus works. It is most commonly known as Seasonal Influenza and is described as being an acute respiratory infection found in populations worldwide. There are four specific classifications of seasonal flu viruses known as types A through to D. It is the first two - A and B which cause the seasonal epidemics.So what are these four sub-types of seasonal 'flu?

• Type A; this is further broken down into sub-types which I won't go into - this is the type of strain of seasonal 'flu that has historically caused pandemics.
• Type B; this has no further sub-types but lineages. This is one of the common seasonal flu strains along with Type A.
• Type C; this usually only causes a mild viral infection and is not considered worrisome. 
• Type D; this is not known to cause illness in humans but is common in cattle.

What are the signs and symptoms of COVID-19? - If you catch this new virus the typical symptoms are of a fever, feeling tired along with a dry cough. In some cases you may experience aches and pains, a runny nose or congestion of the nasal passages, a sore throat and possibly some diarrhoea. In most cases you will only experience mild symptoms which have gradual onset. In some cases you may have the virus and not feel any ill effects at all. It is thought at the moment that 80% of those who catch the virus won't need any treatment at all and recover without incident. It is only the unfortunate few, approximately 1 in 6 of us who will become very ill with the virus and require medical treatment for breathing difficulties and any other symptoms. Those considered at high risk and therefore most likely to develop the serious symptoms and even potentially die are the elderly and those with preexisting health conditions such as diabetes, heart disease, high blood pressure, cancer and conditions that cause dysfunctional immune system responses. However, some younger people who don't seem to have any preexisting conditions have also died of this illness and scientist can't yet explain why this would be. So far approximately 2% of those who have contracted the virus have died.


What are the signs and symptoms of 'Flu? - With 'flu the most common symptoms are sudden fever, a cough which is usually a dry one, muscle and joint aches and pains, headache and tiredness along with a feeling of being very unwell (known as malaise), a runny nose and sore throat.  With 'flu the cough can last for several weeks and can be quite a severe symptom that hangs about whereas the fever and other symptoms usually ease within a week. In most cases no medical intervention is required when you contract 'flu, although you will feel very weak and unwell. In severe cases though, 'flu can cause death within the "at risk" members of the population who are; people aged over 65 who live in industrialised countries, children under the age of 5 in developing countries, plus more generally in all populations worldwide the high risk groups for severe or developing complications from the virus are; pregnant women, children within the group under 59 months in age, elderly, those with chronic health conditions including but not limited to cardiac, lung, kidney, metabolic, neurodevelopmental, liver, haematological disease, cancers and immunosuppressive conditions. Plus those who work within the health care industry due to their heightened exposure to the virus. Stats relating to seasonal flu worldwide show that annually there are between 3 and 5 million severe cases of the virus which result in between 290,000 and 650,00 deaths across the globe.

How is COVID-19 transmitted? - COVID-19 is thought to spread via droplets of virus expelled from either the nose or mouth via simple exhalation, coughing, sneezing. The droplets then spread via the air onto the surrounding surfaces and objects which then can contaminate another person should they touch those surfaces or objects and pick up the contaminated droplets and then touch their face, eyes, nose or mouth. Sometimes if you are standing close enough to someone with COVID-19 and they cough or sneeze or exhale directly at you, then you could directly inhale the infected droplets. Therefore it is advised that if someone is coughing or sneezing you keep a distance of around 3 feet from them to avoid inhaling any contaminated droplets. However, it is thought that the prime transmission is through droplets and not the air - The World Health Organisation is continuing to study how infection is transmitted and so this information may be expanded upon in the future, although this is what is known so far. The problem at the moment is that those who have no symptoms or mild symptoms may pass on contamination via droplets without knowledge of having the virus. Currently it is not known how long the virus can live outside the body on objects and surfaces it could be a few hours or several days - so good hygiene practices are necessary at all times.

An important side note is that for many of us our chance of infection is very low. It is only those of us who have visited one of the areas where there are outbreaks or have been in contact with someone who has returned from one of those areas, who are considered potentially at risk and these people are told to take the risk of infection seriously because it is so new and unknown. It is important to contain the virus to prevent wider spread which is why people are being asked to be careful and self-quarantine in many cases.


How is 'Flu transmitted? - 'Flu is very easily transmitted from person to person via droplets of virus passed via coughs and sneezes from an infected person passing into the air which can spread up to a distance of 1 metre where anyone within that vicinity can breathe in the infected droplets. The virus can also be spread via poor hand washing as droplets can contaminate the hands which then spread them every time something is touched, such as hand shaking or door knobs and picked up by someone else who then touches the contaminated hand or knob etc. Flu is more commonly associated with winter months but outbreaks of flu can be at any time of the year - although less common.


What is the incubation of COVID-19? - The current thinking is that the incubation period is usually around 5 days but it could be anything within a 1 to 14 day period - which is why the quarantine period for self-isolation is currently one of 14 days.


What is the incubation of 'Flu? - The incubation period for 'flu is pretty short approximately between 1 to 4 days but is most commonly around 2 days.


Is there a vaccine for COVID-19? - No, scientists are working to try and create a vaccine and potentially drugs to combat the virus but at the moment, due to the virus being so new, there is not vaccine, treatment or specific drug available to treat the illness. Instead those who develop serious symptoms are treated in hospital with care to support the body whilst it, hopefully, fights the virus and heals itself.


Is there a vaccine for Seasonal 'Flu? - Yes and it is the best prevention against the virus. Vaccinations against seasonal 'flu have been available for around 60 years and because immunity can weaken over time it is advised that you have it annually and it is given via the form commonly given via injection, although a live version of the vaccine can also be given via a nasal spray. Vaccinations offer great protection in young healthy adults but less so in the elderly populations However, even though it may be less effective in the elderly it is still advised to have it as it may prevent the virus from causing severe illness or death due to complications from it. The World Health Organisation advise the following categories take up the annual flu vaccine;

• Pregnant women
• Children between 6 months and 5 years old
• Elderly over the age of 65
• Those with chronic medical conditions
• Health care providers/workers

'Flu vaccinations evolve and vary so the World Health Organisation monitors the situation and updates the composition of the 'flu vaccines twice a year to ensure it is as effective as possible in combating the illness. 

How is COVID-19 treated? - There are no treatments as such for this virus and so instead supportive care is provided to those who have the severe form of the illness and need hospital care - those with mild and moderate symptoms are usually fine without treatment.


How is Seasonal 'Flu treated? - In most cases we self treat at home with bed rest and fluids and fever control such as tepid baths, fans and taking medications such as paracetamol to lower the fever. However prevention is the best treatment and taking up the annual vaccine. In severe cases antivirals are given and further treatment in hospital depending on severity and symptoms.


Can we get COVID-19 from our companion pets such as our cats and dogs? - The current thinking is no, you can't - there have been no reports of these animals having the virus and/or passing it on to humans. Until more is known about this virus the World Health Organisation are advising us that if you are attending a live animal market, not to touch the animals or the surfaces and objects surrounding them. They are also advising to practice good hygiene when preparing food, handling raw meat, milk, animal organs and not to cross contaminate between raw and cooked foods. Plus to ensure all food is cooked thoroughly before eating, practices we should all do everyday anyway.


Can we get Seasonal 'Flu from our companion pets such as our cats and dogs? - No we can't, dogs and cats and other animals can get 'flu but it is not the same as the human virus.


How do I protect myself from contracting COVID-19? - There are some very simple practices we can take to protect ourselves and these are.

• Good hand washing practice - Ensure you wash your hands regularly and thoroughly. Utilise alcohol based hand rubs if you can't access soap and water, this will kill any potential live virus that you may have picked up on your hands. 
• Keep your distance - It is advised that you keep a distance of around 3 feet from anyone who may be coughing or sneezing to avoid inhaling any potentially contaminated droplets that may be expelled.
• Don't touch your face - to prevent any potential droplets that may have been picked up via your hands from entering the body, so don't touch your eyes, nose or mouth. 
• Catch it and bin it - If you don't have a tissue then cough into the crook of your elbow, wherever possible though cover your mouth when coughing or sneezing, use a tissue and then immediately bin the used tissue responsibly in order to protect anyone around you from inhaling any expelled contaminated droplets.
• Seek help - If you develop symptoms that make it difficult to breathe, have a cough and fever then seek medical advice immediately. This will ensure you take the right measures and are given the proper health care should you need it. It also helps to lock down the spread should you need hospitalisation and other people need contacting to self isolate.
• Keep yourself up to date with all the latest news relating to the virus to be aware should it spread to the area where you live. 

How do I protect myself from contracting Seasonal 'Flu? - The following measures are the best protections against the virus.

• Get the annual vaccination.
• Wash your hands thoroughly regularly and make sure you dry them properly too.
• Cover your mouth when coughing or sneezing and dispose of tissues immediately in a responsible manner. If you don't have a tissue then cough into the crook of your elbow.
• If you start to feel poorly then stay away from others to prevent spreading the illness, conversely if someone appears unwell then ensure you keep your distance from them to prevent catching the virus. 
• Don't touch your eyes, nose or mouth.

What are the comparable death rates between COVID-19 and Seasonal Flu? - "Scientists have studied seasonal flu for decades. So, despite the danger of it, we know a lot about flu viruses and what to expect each season. In contrast, very little is known about COVID-19 because it's so new. This means COVID-19 is something of a wild card in terms of how far it will spread and how many deaths it will cause." 

Although there are far more cases of people catching the Seasonal 'Flu virus the death toll from 'Flu is lower than that of COVID-19 if you go by proportional statistics. That is why it is so critical to contain the virus and take the steps that are being put in place to prevent a pandemic of this new strain of corona virus. If left to gain a foothold and become as widespread as seasonal 'Flu who knows what the statistics would be for COVID-19 in comparison to 'Flu and I for one would prefer not to have to find out. 

Rather than using social media and certain papers for your virus updates I would strongly advise utilising the knowledge and advice given out by the professionals such as the World Health Organisation website (which is constantly updating information and news regarding the virus) as well as the national/local health authority information and updates. 

I hope this blog has helped dispel some of the misinformation and eased your mind a little.

For additional clarity I have added some info graphics below along with some information sources.

~ Brightest Blessings ~ 

 x~X~x

Sources:

World Health Organisation: Coronavirus disease (COVID-19) outbreak,Author Unknown
https://www.who.int/emergencies/diseases/novel-coronavirus-2019

World Health Organisation: Seasonal Flu, Author Unknown
https://www.who.int/news-room/fact-sheets/detail/influenza-(seasonal)

Medical Ecology: Influenza, In collaboration with Jason White
http://www.medicalecology.org/diseases/influenza/influenza.htm#sect1

The Scientist: Why Some COVID-19 Cases Are Worse than Others, Katarina Zimmer
https://www.the-scientist.com/news-opinion/why-some-covid-19-cases-are-worse-than-others-67160

Live Science:How does the new coronavirus compare with the flu? Rachael Rettner
https://www.livescience.com/new-coronavirus-compare-with-flu.html