Menopause

 

Don’t you just love the gift that  is menopause, said no woman ever!

When I was younger and started menstruating my periods were bothersome, painful & heavy - I would bleed through regularly and pain killers weren’t particularly effective. So after a trip to my doctor, despite my young age, I was put on the pill. it was amazing! No more heavy & painful periods.

Moving on 10+ years, at the age of 26 I made the decision to stop taking the pill as I was ready to have children. Fearing the return of the horrendous monthlies I was pleasantly surprised to find my body had decide to give me a regular 27 day cycle with a short not too heavy period! 

Then at the age of 36, my family complete, I visited the hospital for a weeks stay in order to have a double prolapse repair - after having a long stint of electric pulse pelvic floor therapy and physio to no avail for incontinence, a physical examination resulted in a double prolapse discovery - thanks Hypermobile EDS!

• Ehlers-Danlos syndrome (EDS) has a prevalence of about 1 : 5000 and falls under a group of hereditary disorders targeting connective tissue and collagen synthesis [1]. Twelve different subtypes affect collagen production and processing pathways. The hypermobile EDS variant (type III) is the most common subtype and thought to be inherited in an autosomal dominant fashion with no known genetic mutation. While commonly associated with hyperextensible skin, hypermobile joints, and hematological manifestations including increased tendency to bleed, defects in collagen biosynthesis at a molecular level predispose to gynecologic and obstetric complications [2].
• Female patients with EDS often have bothersome pelvic floor disorders including pelvic organ prolapse (POP) and stress urinary incontinence (SUI) [2–4]. These disorders can present at a young age without the typical risk factors such as pregnancy and delivery or menopause. The management of POP in patients with EDS involves a dedicated and multidisciplinary approach which is rarely reported in the literature.

Whilst recovering from my surgery my Consultant confirmed that I was perimenopausal. I was suprised but assumed that it was because I was young when I started menstruating. 

Roll on 18 years and here I am almost through menopause - just 29 days to go before I can officially state I’m post-menopausal!

One of my daughters mused that perhaps being on the pill for so many years may be the reason why I had such a protracted journey. Perhaps my body was ready to go through the change but I still had eggs to dispose of? So I googled the pill I was on (long since withdrawn due to side effects), and sure enough it prevented egg release. There is very little research evidence available that I can find to support this assumption and researchers disagree on whether it’s eggs or hormones that trigger menopause. 

Is it possible that it’s the reason I have had such a drawn out menopause journey? I have no idea, but I’m so glad I’m practically over the finish line! 

My friend google also tells me that..

Perimenopause begins in a woman's late 30s to early 40s and can last 3-15 years.

Why didn’t any doctor tell me this? Somehow that information would have been helpful, in fact any information, advice & support would have been amazing. Instead when I ask for help with symptom relief & possible HRT I was told I couldn’t have anything due to my CKD. So left to manage it alone, the best I can.

I have hot flushes almost 24/7 and have a fan by me at all times, I’m constantly running hot, which is a bonus during the cold weather but not great in summer when I have to lurk in the shadows, searching for shade and the cool breeze of my fans!

I also recently learned that driving anxiety & inability to drive at night is also a recorded menopause symptom, which I have and now I feel validated in that knowledge - knowing it’s not just me being rubbish.

Also, so many of the other symptoms are the same as my chronic health conditions & so I assume it’s exacerbated them as I can tick practically all the symptom boxes.

Talking about symptoms, I read up on them and I was realistic that when I hit that date of official post menopause commencement that they won’t miraculously go away. Instead it discover it may be months to possibly 8 years before they taper off! I feel I’ve dove my time so please universe - make it just a few months!

x~X~x

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

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

Beware The Heat!

Being a nurse, although no longer practising, I should be more savvy when it comes to self~care in the heat, don't cha think?

It seems when it comes to self we are usually lest rigorous about taking steps to protect ourselves, yet with our loved ones we cluck around and ensure every measure is taken to ensure full health is maintained.

Yesterday I decided to potter around the garden to weed and feed my pots and give my holly tree a wee make~over as it was a looking rather unkempt and sad.

Within minutes I was puce ~ literally beet red and so unbelievably hot, I felt I was going to internally combust leaving just a scattering of ashes in my place.

Going through the menopause means I am a mobile heat unit anyway, I radiate constantly, so much so that the other day when sitting next to my husband on the sofa he asked if the heating was on ~ nope, I replied, it's just me ~ and it was!

So what did I do when hot yesterday ~ after my garden pottering I had a drink which didn't really reduce my state of puceness. So, I took 5 before practising my daily rheumy physio of Tai Chi warm up, routine and cool down, which obviously I did outside on the decking. However, I did also remember to have a pint of water again afterwards.

After a mini rest I then pottered outside again with my camera because our Jack Russell Pug Cross dog Loki doesn't like to be alone in the garden and keeps coming to "get" me to go outside with him. I tried to stay in the shade but it was oppressively hot still. My eldest daughter came outside with some bubbles so we had a mess about with her blowing and me photographing them ~ which was fun but by now I was feeling exceptionally wiped out.

So, I returned inside and had some more water. Jug and glass in hand I found my spot on the sofa, elevated puffy ankles on the foot stool and rested whilst sipping water.

Last night I went to bed early as I was tired, sleeping whilst being a mobile heat unit in very hot weather is not easy. I wear very light weight pjs, super soft and very thin and lie on top of the bed ~ windows open but still I struggle to keep cool and sleep is intermittent.

This morning I have stomach cramps, headache, nausea and very weak limbs ~ plus the exhaustion.

Having chronic illnesses I often place blame on them for symptoms and thought it was post exertional malaise from my activity yesterday.

However, my husband came into the lounge and after a few tuts and a shaking of the head he informs me I have heat stroke ~ not severe enough for a doctor or anything but enough to ensure I rest and am careful today. He has the fan on in front of me, a glass and jug of water by my side, cushions for support and puffy feet elevated on my footstool. I have to admit I feel pretty pants and am grateful for his care and nursing ministrations right now.

So ~ to you fellow chronic illness sufferers, those with young children and folk over 50 ~ seems we are more at risk of suffering from heat stroke and with the temperatures set to climb over this week please be careful and look after yourselves, take measures to prevent heat stroke and keep an eye out on your loved ones too.

If you are interested in reading more about heatstroke take a look at this website with information about risk factors, symptoms and ways to avoid it..

https://www.webmd.com/a-to-z-guides/heat-stroke-symptoms-and-treatment

~ Blessings ~

x~X~x