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

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

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

A Break Away

I do love a break~away both the chocolate biscuit and a mini~trip variety.

Last weekend my husband took me away to Whitby for a 3 night break away because we both love the Yorkshire coast, it holds many happy memories for us.

I can’t believe how fortunate we were with the weather too ~ being on the coast meant we could enjoy the high temperatures with the relief of the sea breeze. So it wasn’t unbearable and perfect for being out and about.

Our hotel was perfect, I grew fond of it and the old traditional vibe it had. It was immaculately clean and very traditionally decorated. The room key was a real key and not a key card, plus we had a real key for the car park barrier too. 

The dining room reminded me of the one in Fawlty Towers ~ the double swing doors into the kitchen from the dining room were the same. I kept expecting Basil to enter via these doors cuffing a cowering Manuel as he scuttled ahead of him. The staff wore uniforms of black dresses with white lace trimmed waist pinafores which was quite a throwback. The tables covered with very highly polished silverware (you could use it as a mirror), silver cutlery, silver salt and pepper pots and silver dish ware and teapots, coffee pots, milk jugs etc. 

Breakfast was novel, no self service! Everything was on the menu and had to be ordered individually ~ then it was brought to you at the table. So orange juice arrived in a decent sized glass on a plate with a paper doily between plate and glass. Toast came in a silver toast rack placed in a bowl (to catch crumbs). Cereals, yoghurts, fruits, toast, croissants etc plus full cooked breakfasts came to order. So my orders were long asking for porridge, fruits, juice, toast etc which felt weird as usually these are items you help yourself to and I felt a bit extra.

We visited Whitby Abbey via car not the 199 steps, thankfully the blue badge afforded me access with minimal walking. The Abbey on the East Cliff was gorgeous and we were lucky it was pretty quiet which meant we could sit and just enjoy the surroundings. The graveyard just by the Abbey afforded views to the harbour and the two small lighthouses, we mooched through the graveyard looking at the ancient graves and enjoying the calm peaceful atmosphere.

Each day I got up slowly either up into flip flops and tee for breakfast with bed head in the restaurant or lie in bed whilst Dave went for breakfast returning with a bacon sarnie from the hotel kitchen for me. Each day was divided into two parts, with a return to the hotel midway for me to have a nanna nap to save energy, pacing myself. The hotel bed and pillows just embraced you and were so comfortable, which helped.

Over the long weekend we also took ourselves off to the beach, the quayside and to Bram Stokers bench. We finished with a boat trip harbour tour and the open top bus tour. 

Having this time away has made me realise it may be time to consider purchasing a small mobility buggy as I couldn’t visit parts of the old town because I can’t walk too far and it was steep and involved much walking. My faithful crutches took good care of me but perhaps I could do far more and open my world up more by investing in a buggy.

Also ~ with a buggy I could “walk” the dogs again everyday, which I would really love to be able to do.

Me being me, managed to sprain my neck on the Sunday afternoon during my nap ~ I think I somehow twisted my neck in my sleep as I woke up with pain along the left ligament of my neck and pain on movement with referred pain along the jaw. Thank goodness for thermacare 16 hour heat pads ~ they are awesome and gave a huge amount of relief.

Going away always comes with payback and post exertional malaise, so I have been lying low and resting to return to my “normal”.

Now almost a week after the injury my neck is starting to heal and some movement is coming back. I had to miss my Tai Chi this week and so I am hoping my neck will be sufficiently healed by Thursday coming so I can go to my next Tai Chi lesson, I hate to miss them. I have the second Tai Chi for Arthritis DVD to learn the additional movements to complete the sequence for my physiotherapy and it really is a wonderful way to both exercise and meditate with calming suitable music. 

If you are interested in seeing the full Tai Chi routine for Arthritis I am learning then you can watch it below in the video from YouTube.

I have started my orientation course on The Magickal Circle School and also learning my therapeutic touch alongside it, so all in all I feel life is now moving forward in a very positive trajectory ~ which is fabulous and long may it continue. In order to do this though I have had to severely limited my time on social media because I find I am too easily drawn in and distracted by it, which leaves me no time for “doing” and “being”. 

If you feel I am being “off” on social media I promise you I’m not, I’m just practising self~care and focusing on living the best life I can by improving my health and overall well~being within the limitations of my energy and concentration levels.

I wish you all a great weekend and hope that you are spending time doing what you love.

~ Blessed Be ~

x~X~x

Changes, Phases, Chapters

Changes, phases, chapters ~ which do you use? 

I don’t know what your personal preference is for describing the different periods of your life, but I find I’m leaning towards “phases” myself.

Looking back I can clearly see all the defining moments of my life which at the time seemed so unclear. The moments that changed me very slightly but significant enough to alter my trajectory. What strikes me with such clarity is that I have had, so far *touches wood*, a very blessed life. This doesn’t mean one without loss, hardship or grief but one where these stumbling blocks were overcome. I have enjoyed so many cherished moments of unconditional love and laughter that the loss when it came was bearable because the memories continue on forever.

I am currently preparing for a new phase in my life, one which is making Dave a little emotional, yet makes me feel empowered. It is being accepting of our age and health issues. We are taking steps to make our lives easier, less cluttered and simpler. We are addressing health needs both for mental and physical balance and stability. This includes building work to make the lower floor of our house a bungalow for myself and Dave, to make our lives more comfortable and significantly easier. The wet room is something I am incredibly excited about, as well as a bedroom overlooking the garden and the decking. Our upstairs is really surplus for the pair of us but does provide for the girls, it is soon to be just their space and also a place for guests to stay.

As you can clearly see my blog layout has changed and the old blog posts disappeared ~ this is because we are downsizing in every way. The cost of my blog was too much for me to justify, I was basically paying for storage of unlimited photos and videos ~ so I downgraded which means very little storage. This necessitated having to delete all old heavily photo filled blog posts and install a new blog layout. So ~ ta da ~ here it is!

We are also looking to reduce our detrimental impact on the planet by reducing plastic use, growing our own herbs, fruit and vegetables where possible and support nature, the environment and planet in any and every way we can. 

I am discovering my inner witch ~ something I wish I had embraced when I was younger. It has been a practice I have been drawn to for many years but not acknowledged or given any time to. Now I am learning, practising and embracing the craft in my own way, using my own interpretation of the Wicca path to personalise it to suit my beliefs ~ I am a solitary witch and have no desire to join a coven. I do however utilise websites and other information sources to learn more ~ especially about herbs, plants and how they can be used in the practice of health and wellness. I am currently waiting for a particular website to be back up and running to join their courses on herbology and possibly some other ones following that. If you are interested in learning and taking some courses yourself on Paganism, Witchcraft, Wicca, Mythology, Divination, Healing, and much more then take a look at The Magickal Circle School. I have saved it to my browser and keep checking on it hoping soon to see it open again so I can enrol and start the courses.

If you are wondering why I have changed my name from Crazy Purple Mama to Purple Lily then I can only say that I felt drawn to giving myself a new name to suit my inner witch ~ Purple Lily came to me so naturally and with such impact that I felt obliged to follow the feeling to change my name across the board on my social media and blog. Purple because the colour brings me power and comfort, it is a calming and strengthening colour. Lily because it is a flower of significance for me, with attachments that give me inspiration, power and strength. So now you know my reasoning ~ just fyi. 

This new phase of our lives is all about removing excess belongings, clutter and baggage ~ physical, mental, personal and emotional. It’s about looking forward to a simpler, cleaner, clearer way of life. It is also a time in our lives, now our daughters are adults, when we can spend time together, travelling and exploring new places and enjoying the activities we haven’t had the time to indulge in whilst we were working parents. It is a time to spend with our parents because we are so aware of the march of time ~ life is about taking control and doing what is important.

I am learning to accept that Dave is now my “carer”, as he is in being in that role ~ now he has to take on responsibilities that used to be mine, it eats into his time and we are still adapting to the changes caused by this shift in the balance of our relationship. We are getting there but on both sides there are times when we feel a sense of loss ~ which I think is entirely natural and a process of acceptance.

To cement the beginning of these changes we have booked a 10 night all inclusive holiday to Greece in September at a quiet resort. The girls will be house and dog sitting in our absence which gives us peace of mind. THEN building work on our ground floor wet room and bedroom starts beginning of October ~ which is beyond exciting for me.

So, Dave and myself are moving upward and onward towards this new empowering phase of our lives. Appreciating the now, the moment, cherishing loved ones and making memories to hold onto in the future. We may be just in our fifties, which isn’t old but affords us the time, space and planning to ensure that our life is just as we want it when we do reach our pensioner years.

~ Blessed Be ~

x~X~x

Guest Blog~open letter by a teenager with ME

Before my youngest daughter became ill with ME I knew very little about the illness apart from what I gleaned when I was a teenager. There was a girl, who lived with her mother locally, who had this vague illness, she didn't attend school, her mum home educated her and when we visited she was always very quiet, gentle and very pale. Often she left us with her mother as she had to go and rest.

They didn't live there long and I often wonder what happened to her and how she managed back in the days with no iphone, no laptops or internet, only 3 or was it 4 by then TV channels to choose from (no such thing as sky, tivo or netflix then). She must have felt so lonely and isolated.

Anyway ~ my youngest daughter became ill 5 years ago and that's when my ME education kicked in and boy was it a learning curve, then 2½ years after that my middle daughter became ill with ME too.

Since the first diagnosis 5 years ago I have come into contact with a number of sufferers and families or friends of sufferers which has helped me feel less alone when floundering and wondering how to address new symptoms or issues arising as a direct result of the illness.

As well as adults I am also in touch with many teenagers and young people with ME.

One of those young people has asked to write a guest blog as they wish to remain anonymous.

So here it is, a young persons open letter to whomever wishes to read it about their experience with ME.

Every M.E. sufferer will have a different story to tell. Some peoples stories have so much to them, yet others are just a diagnosis with a few things changed in their lifestyle. It’s hard to understand why there would be an illness, where you look the same, you act the same… but you can’t do things the same as other people. It almost seems a bit silly and a bit hard to understand- but then again, not a lot of people do understand.

If I could go back to 2009 I would do so much more while I had the freedom, but it’s totally unexpected. When I was 9 I wouldn’t have had a clue that it was my last year before I was totally restricted to everything I do.

It basically started in 2009 when I had swine flu. Since I got swine flu I had never been 100% ‘right’. I was in and out of school constantly with sore throats, and I caught 10 cases of tonsillitis throughout the year of 2010- I personally think I got a reputation for it with the teachers, so they would never take me seriously if I were to say that I had a sore throat.

In late November 2010, I got a particularly bad case of tonsillitis and the flu. I went through two courses of anti-biotic but didn’t seem to be recovering. My throat still felt as if I had swallowed razor blades, so it really was just a waiting game. I was always telling my friends that I’d be back but after 3 months (still bed bound) it really wasn’t any use, and we knew something wasn’t right.

I got my diagnoses in early January, 2011. I was tested previously for glandular fever and also had a few other tests which all came back negative. We didn’t have a clue about the illness, and the doctors didn’t seem to know much either. At the time, it was believed to be very much like fibromyalgia, which has similar symptoms but can be helped with exercise. Anyone who has m.e, you know that it is not helped with exercise; unfortunately I learnt this the hard way.

I saw a physiotherapist on February 4th (my birthday) who told me to walk to 4 lamp posts each day and to keep forcing myself to walk faster and faster, basically to race the previous time it took me.  This only messed up my back and pushed my m.e back, I felt barely alive- when I saw her she said the back pain was due to one leg being a little longer than the other; which caused my back posture to be wonky. Unfortunately, she failed to tell me that really my muscles were so tight after being over-worked; it was pulling my spine to one side.

After the physiotherapist not helping in the slightest, I saw an occupational therapist and also started hydrotherapy. I hated hydrotherapy, but we were still on the fact exercise will help.

My M.E. was pretty much a constant trial throughout the years 2011 and 2012. I tried hospital school and going to an M.E. group, but it only made me even weaker than I was before. Eventually I stopped everything, and I started seeing an osteopath; this got me into big trouble with my therapists and they made me choose between them, obviously I chose the osteopath because she actually helped.  We tried other little things that we heard supposedly help, like qi-gong, homeopathy, dietitians etc. But most of them just wasted my time.

I couldn’t see my friends for more than half an hour, we tried energy supplements and it was a miracle when I could manage to have a sleepover again. I tried going into school for an hour on Fridays but it didn’t last long because I fell asleep during that hour, and then was wiped out for the week before I went back to it, it only lasted about 3 weeks before we decided I should probably come out altogether.

Skipping forward to September 2011, I managed a week of secondary school from 8-10:30, but it basically just drained every drop of energy that I ever had (Oh and I got a puppy that I saved up for!) Seeing my friends in school was extremely difficult for me, I’d feel jealous, angry and upset. I was adamant to get back into school, but typically I knew I couldn’t manage it at all.

In 2012, I was threatened to be taken into hospital for 2 weeks to have tests ran on me and to be forced into hospital school, I started fainting so I had an ECG done a few times. By now we basically knew everything that I had health wise: hypermobility, orthostatic intolerance, chronic back pain, restless leg syndrome, and my body was also very hyper active. It got so bad I needed to use a wheelchair and hardly moved from bed.

Towards the end of 2012, I had a mini seizure. This was due to my body’s exhaustion; I had an EEG, 24 hour ECG, blood tests and some other things done.

2013 and 2014 have just been a complete trial and error cycle for me, I’m now starting to get better as I have joined Nisai virtual academy and have plans for the future. It’s heart breaking that I’ll never be able to experience things like secondary school and prom, but I’m so pleased with how far I have come after 5 years. The experience has been hard, because the whole education and health system have been so tough to deal with. We’ve had to pay ridiculous prices to see private doctors just to get simple things that people refuse to give us.

Over all, dealing with my M.E. now is something I have learnt to do, although there are out-comes such as social anxiety and avoidance issues; I’m hoping everything will be resolved in a matter of years. For anyone who is struggling with m.e themselves, you may be able to relate to my issues and you’ll understand everything can’t be put down in words. Hopefully 2015 will be a better year for all of us.

My M.E. symptoms consist of:

1. Brain fog (hard to concentrate, forgetfulness, can’t pronounce things etc.)
2. Swollen glands, 
3. light sensitivity, 
4. noise sensitivity, 
5. headaches, 
6. rash, 
7. irritated sinuses, 
8. stomach and muscle pains, 
9. congested lymph, 
10. dry eyes, 
11. fatigue, 
12. tiredness 
13. and MUCH more.

 End of guest blog. Thank you for reading.

~ Blessed Be ~

x~X~x

What it is like as a teen to suffer from a chronic illness?

This is a different blog from my usual format. I think it is important to share with you how my daughters lives have been altered by the debilitating disease they both suffer from which is the chronic "invisible" illness Myalgic Encephalomyelitis (otherwise known as ME), Some doctors prefer to call it CFS and then there is now the new name that's being proposed which is the not so easy to trip off the tongue “Systemic Exertion Intolerance Disease" or SEID for short (ironically spells DIES backwards!).

To be fair, it makes no difference what you call it, the fact remains that they are sick, their lives are restricted and they are not able to live their life the way they would like to. Instead they have to choose each day how to spend their limited energy resources and work within those confines. Also, as with most sufferers, they have other health issues to contend with too. 

So, in a bid to try and help raise awareness about chronic illnesses both girls have completed this "Chronic Illness Challenge".  Originally it was designed as a instagram or facebook challenge and the idea was to answer a question a day for a month. However, for someone who suffers from cognitive issues this isn't always possible and there may be days go by when typing or texting isn't possible. Which is why the girls decided to take their time and compose a blog post to have it posted altogether as a comprehensive post about their specific journey with this illness.

They have both provided their answers beneath each question to explain how it affects them...

Day 1.   Introduce yourself. What illnesses do you have? How long have you had them? 

I have been diagnosed with M.E. (Myalgic Encephalomyelitis), Hypermobility, Orthastatic Intolerance, Arthralgia, Lacto-Intolerance, Asthma, Depression, Anxiety, Dissociative Disorder, Trichotillomania and Dermatillomania, Skin sensitivity and allergies along with Intermittent paralysis of my legs and pretty bad cognitive issues (have days when can't read or write, find it hard to remember words or say the wrong words when I don't mean to).
I have had these illnesses ranging from childhood to the most recent diagnosis which was 5 years ago.

I have ME/CFS, along with a number of things, such as; Hypermobility, Irritable Bowel Syndrome, Orthostatic Intolerance, Chronic Back Pain, Restless Leg Syndrome and Social Anxiety/Avoidance Issues.

I've had ME for about 5 years.

Day 2.   How have these illnesses affected your life?

I can't even begin to describe how they have changed my life. I have missed out on the most important teenage years and my education, lost so many friends and become unable to cope in social situations as well as being in pain 24/7.

They've affected my life in a number of ways, I used to enjoy dance a lot and I had to stop altogether, I've fully missed my opportunity to experience secondary school and I've missed out on major topics via virtual school because we don't have the money to fund my education in more than two subjects (Maths and English) privately ourselves and we haven't been given any funding from anywhere else.

Day 3.   How did you get a diagnosis?

After having viral meningitis I never got better and had a severe case of Scarlet Fever and any and every illness going around. I had two CT scans and after many tests they finally diagnosed me as having ME/CFS.

Originally we assumed it to be glandular fever because of my glands being so swollen and my initial symptoms were text book glandular fever, I had had 10 cases of tonsillitis already running up to it and had spent almost all of 2010 off school sick. When I didn't get better and after lots of tests coming back negative it was obviously thought to be ME by the GP.  I got a proper diagnosis in January 2011 from the hospital.

Day 4.   How have your friends and family reacted to it?

My family have been extremely supportive along with a handful of friends who have stood by me. I couldn't ask for better people in my life - my mum especially has been absolutely amazing, she is my rock and best friend and I love her.

 
Obviously it was sad to see me become so ill after being so well, I could barely see my friends for any longer than half an hour. Also, we had next to no knowledge of the illness so everyone was trying to push me and get me back to normal more than anything.

Day 5.   How does being chronically ill make you feel?

Like shit haha

It's upsetting that I have this illness because people misjudge me with what I can and can't do. Recently my good and bad days are very sudden but people tend to judge me on 'what I did yesterday'. I hate that I'll never have the experience of school and that I've missed out on so many events (including Prom) and haven't had the opportunity to learn the same amount or have the life opportunities as other people.

Day 6.   If you could have told yourself something when you first remember these symptoms arising  what would you have said?

Be kind to yourself.

If I could, I would've told myself to not push myself into doing things too soon. Trying to go into school and doing exercise just prolonged recovery and messed up my back.

Day 7. What was the biggest realisation you have had?

There is a difference between living and being alive.

The biggest realisation isn't for myself, but so many people take things for granted. They complain about school, dance, and a simple headache when they could have things so much worse, if people come to me saying they have a sore throat, I really won't have any sympathy, they should try living with ME.

Day 8. Where do you see yourself in 5 years time?

I can't say because I just don't know and don't want to set my expectations too high and then be horribly disappointed.

In 5 years I see myself in college doing a media course, I love editing and the media is a huge interest that I have.

Day 9. Have you ever tried any alternative therapies? If so, what? Did they work?

I get stuck into my art, it is a form of therapy to me since I use it to distract me from my pain and I get lost in it. Also, if you consider an osteopath to be an alternative therapy I regularly have treatment with my local osteopath who does lymph drainage massage. I can't live without it now, it helps relieve the pain a little.

I've tried loads of different things like QI-Gong (whatever it's called), going to homeopathy, dieticians, osteopathy, occupational therapy, Physiotherapy, hydrotherapy, pain therapy etc. The only thing that really has worked is osteo and the dietician, I've been given a supplement to help me gain weight and the osteo helps with my lymph glands and back.

Day 10. What little things make your life easier?

World of Warcraft, ipad instead of laptop because it's lighter, beanbag trays and bed table, dairy free chocolate, my ugly little granny shower stool.

Little things like drinking Aloe Vera in the morning and having my own personal space helps. Going downstairs even tires me out so I need a place to have to myself.

Day 11. Why do you believe you have this illness? Bad luck, a higher power or something else?

It's just bad luck.. If it is a 'higher power' whatever it is can fuck off.

I definitely got this from bad luck.

Day 12. Briefly explain to a healthy person what it is like to live with this illness.

There is no brief way to explain this. it is so complicated and affects absolutely everything in my life that it just is too much to explain.

 
You always feel fatigued and ill no matter what you're doing, you always feel sleep deprived and in pain, basically like a zombie that 'doesn't look like a zombie'.

Day 13. Has your physical illness had any effect on your mental health? Explain.

Is that a joke? Of course it has, how can you be in constant pain and not become angry/depressed? 

 

Yes, my ME caused me to come out of school at the age of 10 which had given me social anxiety, I've been recently going to CBT to help this but was on the waiting list for years.

Day 14. Give 5 things you are grateful for.

1. My bed
2. My PC
3. My ipad
4. My boyfriend
5. My family & friends.

1. My family, 
2. My dogs, 
3. The health care we receive, 
4. My osteopath (I always email her whenever I have a new symptom because she has ME herself and knows how to help usually).
5. My bedroom. Weird thing to be grateful for, but we decorated it specifically to be a calm environment for me to rest.

Day 15. What would you say to people newly diagnosed with this illness?

Fuck off physiotherapy, don't do GET, look after yourself, focus on getting yourself better and nothing else, education can wait, medical professionals don't always know best. If you feel poorly rest, please don't try to push through it.

 

I'd tell newly diagnosed people to NOT go into anything too quickly, to rest and to pace.

Day 16. What is your favourite inspirational quote?

The three I love aren't exactly inspirational but hey ho

"Not all those who wander are lost"

Cobain once wrote "Art that has long lasting value cannot be appreciated by majorities , only the same small percent will value arts patience as they have always have. This is good."

"I have met many minds able to store and translate a pregnantly large amount of information, yet they haven't an ounce of talent for wisdom or the appreciation of passion."

 

I don't have a favourite inspirational quotes..

Day 17. How would things be different if you weren't ill?

That's impossible to answer, how am I suppose know or even be able to guess?

 

I'd be doing dance, I'd be very smart, most likely, since I learn very quickly and I'd probably be focusing on school more than anything and not on my illness.

Day 18. Do you think you have become a better person through being ill? Explain.

I couldn't answer this so I asked my mama and she said "You have grown wise beyond your years, show empathy towards others, are nurturing, caring and compassionate. You appreciate the smallest gestures of kindness towards you and give so much love back in return. This illness has taken so much away from you but it has made you a wiser, more appreciative person who makes the most of what you can do when you can do it."

 

I think I have, I have become wiser and more mature. Sometimes I feel as if this makes me a bit displaced in my friend group but they're all lovely and don't treat me like someone with am illness.

Day 19. How do you feel about the future?

The future scares the shit out of me.

I'm excited about the future, I know exactly what I want to do and hopefully will be loads better by then.

 
Day 20. Have you met anyone with the same illness? Did it help?

Not really met anyone else as such with M.E. as it affects everyone differently and it may or may not come with other illness associated with it. I had OT group with other people with ME but they were all affected differently and we didn't speak to each other.
My sister has M.E. and became ill 2 years before me, which does help me to have her around to talk to.

Other than my sister - I've met a few but the only people who have helped are people my mums age because they're more experienced and are willing to share what helps them. They're all very sweet and go out of their way to help someone.

Day 21. What networks or websites have you used for support or information about your illness?

I have looked at information forwarded from Invest in ME website and The Young ME Sufferers Trust, my mum is active on many support websites and is focused on fund raising towards biomedical research & raising awareness , especially with the Let's Do It For ME campaign group - so I get information indirectly from her.

Only really Facebook. I've tried AYME and other forums but have never really been able to use them daily or even weekly, I don't have the energy to keep in touch on them and so they just don't drag me in.

Day 22. How do you feel you have been treated by the medical system? Explain.

I feel very let down as I had to go to a private doctor to get any help and we pay for the osteopath since the hospital doesn't understand what we need. Everything that helps we seem to have to pay for. The hospital only seems interested in GET and what can save them money. I don't feel listened to, cared for or supported by the medical system. If I was listened to and given treatment to help my symptoms I don't think I would be ill anymore, or at least in less pain. 

I think by certain people, like some Physiotherapists, some OT's and some doctors have been really stuck up, rude and pushy about my illness but others have been lovely. I now am working with a really lovely OT on how to gradually, slowly and safely build up my muscle strength and core.

Day 23. What do you say to yourself when you need a pep talk?

I don't say anything to myself, I go to my boyfriend or my mum because I'm a depressing fuck.

I don't give myself pep talks or really talk to people about my illness or my personal problems, I don't like people in my business.

Day 24. How have you managed to juggle your social life through your illness?

Is this question also a joke? My social life depends on my health, but I do go out once in a blue moon.

It's hard because I go weeks without seeing some people, but mainly it's alright. I tend to stick to seeing people who I'm really close to alone and then the rest in big groups.

Day 25. Name 5 activities you have managed to pursue while being ill and 5 activities you have done that you wouldn't have pursued if you hadn't become ill.

I can't specifically answer this question but since being ill I have focused on the arts and use art as a therapy.

Editing, I'm not a good singer really but singing, I used to love painting and I still do occasionally, doing make up (special FX) and I can't think of a fifth. Mostly just editing but that's an important one.

Day 26. What impact has this had on your friends, family, partner, parents etc?

How am I supposed to answer that? I don't know, they haven't told me.

It's just made it a bit annoying and difficult, especially when it comes to making plans for a few weeks time because I never know if I'll be well enough by then.

Day 27. What's the most helpful advice you have had?

"Listen to your body, stop before you get tired and rest."

Mostly just the pacing that has helped me, pacing is hard to get the hang of but once you have and know your limits it really helps. Also, forcing yourself to only sleep at night, if you can, helps.

Day 28. Name 5 things you have achieved despite your illness.

1. Discovered love of art and using different mediums.
2. Managing to maintain a successful relationship with my boyfriend despite the many challenges.
3. Managed to reach max level on World of Warcraft.
4. My hair always looks uber brilliant hashtag swag
5. Eyebrows on fleeeeeeek

1. Doing editing, 
2. Doing well in English and maths,
3. Going back to school via Nisai Academy Virtual School (so can go to lesson when still in bed)
4. Maintaining friendships, 
5. I can't come up with a fifth.

Day 29. What has helped you cope with the stress of this lifestyle?

Medication ;)

Having my own space has helped, when I'm stressed and unwell, seeing people just makes it all 10x worse so it's nice to be able to go and have some alone time.

Day 30. And finally - starting at your toes and working up to your head, name each part of your body and how your illness has affected it, followed by something you like about that part of your body.

This is such a hard question for someone with a chronic illness, most of the time every single little part of you is affected but basically every part of my body hurts, every part of my body is affected, my joints, my muscles, my gut, my skin, my eyes, sensitivity to touch, smell, sounds, taste and sensitivity to light. Also, there is the numbingly terrible fatigue.

This question is too long to answer, so I'm going to summarise and say which parts of my body have been affected. It's mostly my back, shoulders, joints and thighs, but the rest of my body can feel very achy and tired at times too.

I am finding that even though I am living with the girls reading their answers makes me incredibly sad for what they are missing out on but also immensely proud of them and how they keep fighting on to try and gain control over their bodies and make the absolute best of the situation they are in. They grasp every opportunity they are able to take and utilise it the best they can.

Finally, I leave you with this last word from the girls.

~ Blessed Be ~
x~X~x