It's Never Too Late!

Finally, at the age of 52, I pursued exploring why I am different and why I am the way I am. My GP surgery is exceptional and nothing but supportive of me, as I have several chronic illnesses which I need support for intermittently. I see different doctors within the practice, and one had previously agreed that I presented as autistic and placed me on the waiting list for assessment. However, the waiting list is so LONG right now partially due to the virus creating backlog but mostly due to the sheer numbers of people needing assessment within the limited NHS accessibility for adult assessment. I was told the average wait would be 3 years. 

Obviously, after so long I was desperate to just get on with the process and the idea of waiting 3 years was awful because I had finally decided to go ahead with the process and wanted it to happen NOW. I discussed this with my husband, and we were able to scrape together enough money to go privately for assessment. The forms were filled and returned later followed by the in-depth assessment via video consultation. I loathe video calls and don't skype or zoom and my husband, who was with me during my assessment said he wanted to pull me into view as only half my face was on camera for most of the appointment as I just wanted to hide whilst I spoke. Also, I found the whole process immensely overwhelming and cried during the assessment. This was because all aspects of my life were under the microscope, including parts which I found extremely difficult to discuss. Having completed trauma therapy, I thought I had a handle on my past, but obviously I had simply deluded myself on this score as the assessment clearly highlighted. It was clear that I had many autistic traits but also many traits born from trauma and the challenge was to define which were which - was I autistic, was my behaviour created through trauma or did I have both? A follow up appointment was made once the assessment was over to discuss my diagnosis as the assessor wanted to go away and marry together my questionnaires along with the information from our video assessment.

The following week felt like an eternity, I desperately wanted to know what my diagnosis was and get some kind of validation for why I am the way I am.

The follow-up call came and with sick anxiety I answered - my diagnosis is that I am most definitely autistic. I was then told that it is most likely that I delayed pushing for assessment due to gas lighting myself due to also have a second diagnosis of C-PTSD, which shaped my personality from a young age along with heavily masking and copying appropriate behaviours. My assessor asked if I would like any further help or support from them, it would have been wonderful, but our coffers were empty and we had to say thank you but no thank you. A letter is being written now detailing my diagnoses for me to keep and share with my health care providers should I choose to do so. I am going to be taking a copy to my GP because they have been very supportive of me and may be then able to refer me for further help via the NHS when I feel ready to accept it. 

Autism Spectrum Disorder (ASD) is harder to diagnose in women than men, it seems that the system is geared up more towards diagnosing males, especially in younger years, many girls and young women slip through the cracks. This could be why so many women tend to be diagnosed with autism later in life - plus we tend to be master maskers! I suppose young males tend to be more easily identified by their behaviours when younger whilst girls tend to be able to copy behaviours and mask effectively enough to go undiagnosed. 

Typically, females with autism will know that they are different but not necessarily understand why. Perhaps they are more involved in their interests than others or their interests are more specific and less mainstream. Often, as in my case, you tend to have a small social circle, perhaps only a couple of friends, not a social butterfly. I am only secure within my small, safe circle and need plenty of alone time to decompress. I also have some specific interests which I like to spend time focusing on, which is also a typical female trait. I have never followed fashion, always followed what feels comfortable and safe for me and doesn't make me stand out from the crowd, apart from my huge love in my teens for my red canvas jeans - which I lived in until they fell apart. -Blending in for me is very important, but so is individuality - which sounds like opposing views, but I try to be invisible whilst also enjoying different hair colours, piercings and tattoos. I don't wear make-up or lots of jewellery, I wear dark, mostly black clothing and pretty much always jeans, legging, jumpers and hoodies. I don't enjoy wearing dresses or skirts and only wear them for very special and specific occasions. The floaty feeling of wearing them makes me feel insecure - I feel safe in trousers. 

Textures are often an issue and that is true for me - if it doesn't feel right against my skin, no matter how lovely, I won't wear it. The same is with food too - some textures feel weird and wrong in my mouth making me retch - doesn't matter if it tastes good, if the texture is wrong then I can't eat it. 

I am gullible, easy to manipulate and so, especially in the past, I have been taken advantage of. My family are incredibly protective, and we are a tight unit who look out for and protect each other - so this happens far less so now. Apparently, this is a common female autistic trait. 

One major factor that links many autistic women is our ability to mask incredibly convincingly. This is what often delays diagnosis for many years. We mimic how others behave and strive to keep our anxiety and emotions contained until we are alone. My tactic was to hide, in the loo or rooms away from the main gathering to have some time out - not always possible but I prefer to be on the outside looking in rather in the thick of it all, noting exits on arrival and having contingency plans for an early or swift exit.

Women can also appear to have different predominant characteristics or personality traits in different groups, this is because we tend to mimic and copy the characteristics and behaviours of those around us to fit in.

Masking to fit in comes at a cost and causes huge amount of emotional bottling up, stress and anxiety that needs to find a release at some point, somehow. Everyone decompresses differently. Some have emotional or angry meltdowns - I tend to curl up and cry and go quiet, wanting alone time and plenty of space and rest - lots of rest!

I couldn't through school, work and still now speak in public, or in large groups. Especially at school, I couldn't answer questions in class or read out loud. I would go sick when we had to do assemblies in front of the school, instead I would offer to write up the script on my own and give it to the group then not go to school on the day of assembly. If teachers asked me questions, I would go bright red and want to disappear and not be able to answer or mumble and get into trouble for not participating. 

I have managed to hold down jobs but struggle being in any position of leadership - I prefer to work alone or in a very small group and be allowed to do my work uninterrupted. I left nursing once it got to the stage of doing ward rounds, drug rounds and large volumes of paperwork because it was too overwhelming - instead I preferred to have one to one patient care work. If health allowed, I would be a carer again but not as a nurse just as a care assistant and deal only with patients on a one-to-one basis.

I can give eye contact, but it is often either intermittent, or way too much! My daughters often get frustrated with me as they don't know who I'm talking to as I often speak without looking at anyone. Then, on the other end of the scale, they can get uncomfortable when I speak to them because I give too much intensive eye contact which leads them to ask me to look away and stop staring as it freaks them out. 

The problem with many assessment criteria is that it focuses on the male traits with autism, which just don't fit with women with autism. It seems that now that is changing, but slowly- for my assessment I researched who to go to and found someone who understood how to assess women, especially adult women for autism. I have masking skills which led to being undiagnosed for so long. This means I can make eye contact (although I don't always get the duration of contact right) when talking to others outside of my home. Copying reactions to jokes and small talk and remembering typical phrases used - although I can never remember jokes to relay them in any conversations. General imitation of the group I may be in of non-verbal behaviours such as gestures or smiling etc. 

Knowing why I struggle the way I do and why I find it difficult to make connections with others and why I become overstimulated and overwhelmed helps me to understand myself more. 

What I hadn't expected from my assessment was the Developmental Trauma or CPTSD (Complex Post Traumatic Stress Disorder) diagnosis and I found it exceptionally hard to hear.  

I know my upbringing was not considered normal and there was an awful lot that happened that I don't feel comfortable sharing, but it resulted in trauma that shaped my behaviour from a young age, and this affected my personality and perceptions.

 

CPTSD can lead to issues of anger and depression - for me it was depression which has been my companion since my teens and resulted in a (thankfully failed) suicide attempt when I was 18 years old. It can lead to dissociation, I have very little memory of my younger years, I simply look back and can't remember large portions of my life - it’s as if my mind has wiped it clean or hidden the memories deep beyond my reach. I have a very negative perception of myself which is something that I am working on and trying to readdress and change. It’s a monumental task to try and undo a lifetime of self-loathing but not impossible. Friendships and relationships have been challenging - I have been taken advantage of numerous times and now I tend to shy away from connecting with people and isolate myself, mostly only surrounding myself with family and very, very close friends. 

I still love the person who caused the CPTSD, although they are now deceased. I recently went through trauma therapy, which focused on me forgiving them, so that I can then move forward and release the hate to work on myself. 

One major step was to move away from my old faith, as my upbringing had strong Church of England links and find my peace within Paganism. Exploring witchcraft and other pagan practices has really helped me find some inner peace and a belief system that helps me and resonates with me, rather than a religion which was foisted upon me and didn't sit well with me, but I complied with because it was expected. 

As I have grown older, I have become much more of a loner and more socially isolated, even a little agoraphobic. I don't like crowds and busy places and only go out to places which are familiar and safe.

What happened in my formative years has impacted my behaviours and personality in how I react to situations and on my memory - which is shocking.

Basically CPTSD comes about from childhood trauma, which can take a multitude of forms and not necessarily be visible. It can be physical, sexual, or verbal abuse, manipulation, or neglect, living within a toxic home, absent or disinterested parents or inconsistent parenting, abandonment, dangerous or unpredictable living environment. Not knowing any difference and living within the situation of abuse which a child cannot remove themselves from leads to trauma.

The trauma inflicted upon a child in whichever form can lead developmental trauma and neurological and psychological damage - which is what happened with me, and which led me to gaslighting myself for so many years and avoiding seeking help until recently.

Typical symptoms of CPTSD are usually stated as being.

• Shame and lack of self-worth - such as feeling ugly, too fat, too thin, stupid, and defective. This leads to negative and toxic inner narratives, and which may lead to suicide attempts (as in my case) but also in recurring self-harm. 
• Feeling Powerless - for me this leads to me often becoming immensely overwhelmed and struggle with feeling vulnerable in a myriad of situations but unable to speak out for myself. 
• Depression - I battle with episodes of deep depression, despair, and hopelessness. Thankfully I can recognise now when to enlist help either via talking therapies or medication.
• Hyper alert with fight or flight engaged - being hypervigilant and feeling a sense of doom and inexplicable fear due to unseen threats, finding it difficult to relax and often results in insomnia (hell yeah! oh for a night’s sleep), irritability and feeling on edge. 
• Mood Swings - emotional responses that may be deemed inappropriate for the situation. I can become very agitated, snippy, and angry about things that seem out of context. Also, very sad and emotional leading to many tearful outbursts.
• A sense of not belonging and isolation - this is thought to be due to not having a secure parental bond and leads to developmental issues in connecting to yourself and others, loneliness, and isolation. This can manifest as needing close and intense contact or the opposite of removing oneself and isolating away from contact. 

It's been a tumultuous week of assessment and diagnosis, but I feel validated, that I wasn't wrong in my belief that there was something underlying and that there are reasons for me being the way I am.

 

My GP has re-prescribed anti-depressants which I will start today, as I am struggling with a very low mood and have recognised my warning signs to seek help. I hope now to look towards finding my peace, learning how to heal my trauma as best I can, I have started the journey by forgiving perpetrators of my trauma and can now focus on my emotions, beliefs and behaviours and work to change them as much as is possible towards a more positive future. 

I hope by sharing this post I can persuade you that it really isn't too late to seek answers. For me knowing I am the way I am is because of being autistic and suffering from the developmental trauma is helpful. I feel now with that knowledge I can start to make peace with myself and work towards controlling and calming my inner turmoil, beliefs, and behaviours. I will try not mask as much and give myself the time and space I need. To be proud of who I am and how far I have come - navigating 52 years undiagnosed was tough but I hope the future holds the peace and self-acceptance I have always strived for. 

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

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

So, Tell Me..

So, tell me .. what is it you want to change?

Now that's one loaded question!

Today was initial assessment day prior to commencing the therapy proper.

For me questions like this are always very difficult to answer, because sometimes there is no absolute answer but a multitude of less concrete more obscure answers.

The therapist is lovely, she is firm, friendly and won't be fudged!

Due to various reasons I can't take medication any more and all I have is therapy and mindfulness to fall back on to control my mental health demons. It is crucial when going down the therapy route for you to like and trust your therapist and thankfully I do - which is a bonus, I didn't fancy having to ask for an alternative person. Historically, for my one to one sessions I have always had amazing therapists - however the family therapy we had several years ago wasn't so great - but perhaps that was down to being a weird dynamic and strange situation rather than a poor therapist.

This time though, I am not with the family, neither am I alone - I am going with my husband - the thinking behind it is that with mental health you need to approach and deal with the bigger picture. My husband is my friend, partner, husband, lover and carer - he has known me for 46 of my 50 years of living on this earth and so in order for things to move forward for a more positive and secure mental health future his presence is essential too. We need to work together to ensure we are both on the same page and find a path that works for both of us to work in harmony towards a mutual end goal.

It means talking frankly, with blatant honesty to each other - to speak about the good and the bad and the various issues or bug bears we have with each other. It is all done respectfully within a safe space and this first session has underlined how secure we are as a couple and that we are more united now than when we first stepped out together, which is heartwarming. However, because of the general life shit shows we are having thrust upon us we are navigating more than our fair share of emotional and physical crap and its sometimes difficult to see the wood for the trees at these times.

Going as a couple to therapy is brilliant, we can discuss it together afterwards and we will be given "homework" to work through and suggestions to contemplate as we move forwards. Focusing on our mental health and accessing help is just as important as focusing on physical health and visiting a GP if you need to. Thankfully, the stigma around mental health care and issues is gradually diminishing as more and more people step forward and talk about it, bringing it into the mainstream and everyday.

For us, doing this therapy route together is a new and unknown journey but one we are both open to and ready to give it our all. Our aim is to adjust to the carer/patient roles along with navigating the plethora of other unfortunate incidents that are currently putting us on difficult ground and find ways to address them without diminishing our mental or physical health and remaining united towards achieving our end goals.

Our daughters are on board and supportive of our journey, we have to lead by example and being advocates of seeking help from whatever quarter is necessary to ensure stability with mental and physical health means that we have to do as we say to our girls and not say one thing but do (or not do) another.

Today I feel hopeful, I feel grateful and I feel loved. Life may be a trial right now in many ways but it is also exceptionally precious and worth fighting to make it the best it can be, regardless of what else is going on, to not let life beat us down but instead to rise up and carry on, finding the happy and the positive within the quagmire of shite, even if that means wearing thigh high gum boots to keep the shit out!

So, next week we have our first constructive session and "homework" to progress through. It may not be easy, but something tells me that it's going to be worth it.

I also have to say -sometimes it is also extremely vital have a damn good cry too - let all that anguish out and really let that valve go nuts as it releases the pressure. OR have a completely wild laughing fit, just let yourself go, relax into it and just free yourself to become it, laugh until your face hurts, your sides and stomach aches and your voice is hoarse. Both are awesome ways to release the tension and it has been known for me to do both at the same time much to the consternation of my onlooking family - who inevitably realise its best to just let me get on with it until I am done.

I know many of you are navigating difficult paths right now and just urge you to be kind to yourself and to accept help to support you during the toughest times, don't let anyone tell you what to do but please allow them to support you whilst you figure out your next move.

~ Brightest Blessings ~ 

 x~X~x

Hatching Plans

Oooh isn't it a great feeling to hatch plans for a better future?

This week has been a very eventful one for us all round - in a sort of negative events resulting in positive planning process kind of a way.

Tasha is mentally and physically at rock bottom.  This is making everything she does very difficult and seeing the light at the end of the tunnel something she struggles to believe in.  We are adamant that we can turn this all around.

We realise that Tasha has very low energy resources and that we have to plan everything she does carefully into her OT pacing schedule to ensure that she doesn't drop down physically any further than she is already. So for this week coming all she has to do is;

a) get up and dressed before midday everyday
b) come downstairs for an hour every day round about late afternoon.
We also spoke via the phone to her psychiatrist about her sleep issues - she can fall asleep but is unable to stay that way and wakes up repeatedly throughout the night which is resulting in her becoming more exhausted day on day.  This in turn is impacting massively on her physical health and energy levels we also wonder if it is a contributing factor in her awfully low mood.  The suggested treatment for both of these is that the psychiatrist would like Tasha to consider switching from her prozac to mirtazapine (like me) as it has a sedative effect and so will help with her sleep.  The appointment to discuss this and get the necessary script will be on Monday morning - so not too long to wait at all.  Meanwhile we are still waiting for the CBT referral to provide a therapist but due to budget cuts and the number of therapists available we know this won't come through for her for several months yet.

Tara,has been very low in mood recently because her ME crash seems to be taking an age to recover from and she is also really fretting about her education and how impossible it seems for her to gain her Maths and English GCSE's going via the route we are currently on. To be honest, we hadn't fully appreciated how greatly this was affecting her and the stress of the worry, we feel, has been a huge contributor to her current crash and so we need to seriously address this.  We have also had word that the OT referral has gone through - our first appointment with her will be on 14th April and this will be to focus on pacing and finding ways in which to plan education into her recovery too.  The CBT referral, like Tasha, may well take some time to come through - so for both girls learning to try and control their anxiety and panic is tricky in the meantime.

Both myself and The Dave filled in our forms for therapy via our GP and we have appointments for 2pm this coming Monday - The Dave for CBT and myself for counselling sessions.  So everything does indeed seem to be falling into place *crosses fingers, eyes, toes, legs and hopes not to have tempted fate*.

So, hatching plans, I hear you ask (or do I?) - yes that is precisely what we are doing.

After chatting with the girls, Tasha and Tara both have very set ideas of what they would like to do with their futures.  Tasha wants do follow a photography course and Tara a media course - both held at the local College. The requirements for them to attend are to pass the Colleges interview and also to assess their work (so Tasha needs to build up a photographic and Tara a film portfolio to show them) AND to have both Maths and English GCSE's.

Now - due to their ME, accessing mainstream education has been impossible, they just don't have the energy to withstand going and attending these venues even on a reduced timetable.  This is mostly due to the many various stimuli that there are in these places, with the noise and crowds which are not only overwhelming when sensitive to sense over stimulation but also trigger their anxiety and panic - which drain their batteries very quickly.

SO - the clock is ticking and we are not gaining any ground even going via the hospital tuition at home/in the ward.  What do we do, where do we go from here?

Well, what we have done is sit with our heads together, with our calculators and finances and try and work out a cunning plan that will enable the girls to gain these precious Maths and English GCSE's and what did we come up wtih..... *insert drum roll and builds up the tension* NISAI Virtual Academy!

Yep, that is where we are now - we have spoken to the folk (who are incredibly helpful) about this and we are enrolling both girls to take the English iGCSE course, which is only a year in duration and then JUST Tasha to take the Maths GCSE course BUT for Tara attend the virtual lessons with her (as it is a two year course and follows along with Tara's peers in mainstream school).  Now it is NOT cheap by any means (which is why only Tasha is doing the virtual Maths course, as Tara will take the actual exam via the mainstream school), but after watching a virtual lesson and seeing how it works we are sold on it.

Plus Jane Colby (an ex- headteacher herself) of  TYMES Trust backs it wholeheartedly as a means of children with ME gaining qualifications. However, the reason we are not enrolling Tara to take the virtual Nisai course exam is because we are NOT removing her from the school roll at the secondary school she is registered with.  This is because, to save on costs, we want her to sit the actual exam in the school (so paid by them) but for her to take it in a classroom on her own, as Keisha did.  We are also hoping that by Year 11 Tara will be strong enough to attend the odd Maths lesson there amongst her peers (although still following the course via the Nisai virtual school alongside Tasha) and by staying on roll it will also enable her to join in with her friends at the school prom/photograph day too.

So - that is our cunning plan.

We will start the courses in September, so Tara will continue with her Medical tuition until then and both girls will be going through their work as and when their ME enables them so that they are ready and at the right place to start their courses.

The beauty of the Nisai approach is that the girls can sit on their laptops to attend their classes in their pj's and in bed if necessary with no make-up on or having to worry what they look like to others (as there is audio feed to their classmates but not a visual one). All the students choose an icon from a menu to represent themselves instead of a photograph - also the lessons are recorded and so they can save them to watch as many times as they wish (which when you suffer from brain fog is a really BIG plus) and also to revisit for revision purposes too.

So that, is as they say, that from me for this week.

This weekend I shall mostly be trying to snack on healthy foods (as a side effect of my tablets is stimulation of appetite - darn it!) and try NOT to eat chocolate & step away from the Banana Bread! This is because, in the words of the Fast Shows Jesse;

This week I 'ave mostly been eating Banana Bread!

Ho hum, mind you - next week I will no doubt be replacing Banana Bread with Bakewell pudding as I have faithfully promised to make one for Tara on Sunday ('tis a fabulous recipe and you use puff pastry instead of shortcrust - if you are REALLY lucky I may just share the recipe with you next week).

Anyhoo - this blog has been something of a rambling one and so I best cut it short and go and do something productive, whilst avoiding spilling, knocking and breaking things - if I were Worzel Gummidge today I would 'ave me clumsy head on!

Have a fabulous weekend all.

~ Blessed Be ~

 x~X~x

Anti-D's & Weight Gain = Choices

I have been taking Mirtazapine for depression and insomnia which have really been effective. 

For the first time in months I have been sleeping, all be it a little too much (something I never thought I would say). Every morning I have to down a bucket load of very strong coffee to be able to wake up enough to function. 

Now, I have been on this medication before and it led to some serious weight gain which led me to be very reluctant to going back onto it.  Sadly, once again this medication has affected my weight and I have gained some serious timber over the past few months. 

This in turn has had an impact on my self-confidence because I am ashamed of how I look, which is ridiculous because my family are wonderful, supportive and always tell me how great they think I look, even with some weight on me. 

I am not against holding some weight and am perfectly comfortable being a little  on the comely side too.  However, the size I had reached was just too much for me to deal with emotionally and then when my feet started to blister and get sores on them I knew I was approaching dangerous ground.  I have a family history of diabetes ~ late onset insulin dependent on mothers side, and had gestational diabetes too.  This, so my GP tells me, makes me high risk and I should try and keep my weight down to counter this.   

It would appear that mirtazapine (like some other anti-depressants) can stimulate appetite and also can alter  how your body stores fat.  Apparently about 25% of people taking this drug will experience weight gain, sometimes even when you aren't eating any differently and still taking exercise.  Also as it is a relatively new drug there isn't a huge amount of research as to why this happens.

SO, my dilemma was ~ do I stay on the medication and ignore the climbing weight for the sake of my mental health OR do I come off the medication, rely on my therapy sessions and work to lose the weight gained in order to counter the real threat of diabetes ~ which my feet breaking down would indicate is a real possibility if action isn't taken quickly.

So ~ two days ago I just stopped taking my tablets, which I hasten to add was a silly thing to do ~ I should have tapered the dosage and come off slowly and would advise anyone else who is coming off their anti-depressants to do this and only on the advice of their GP ~ a case of do as I say and not as I do.  Thankfully I haven't suffered from any withdrawal side effects which makes me exceptionally lucky.

I have also started in absolute earnest to eat a high fibre, low calorie diet.  Hopefully the weight gained will drop off just as quickly as it came, my feet will thank me and all will be well.  I am not aiming to be a skinny ginny ~ that is not my body shape.  Just enough weight off so that my body will thank me and the diabetes risk recedes for now.

So, today was a good day ~ lovely berry breakfast smoothie and BBQ with lots of salad have been on the menu (and fingers crossed if the weather holds the rest of the week).  I have a wonderful therapist who is being a great support who will *crosses fingers* be enough for me.  Utilising her and the power of positive affirmations along with additional support from our family therapy team gives me hope that I can control my depression demons and find ways to relax to counter my insomnia.

HOWEVER, if I ever reach the point again where medication seems the only solution I will  try and work out with the GP the best option which has the lowest risk of weight gain within my limited choices ~ due to intolerances to many medications.

So, today has been a good day, I have enjoyed the sunshine, not had any emotional wobbles and eaten healthily.  I have decided to pin up my positive affirmations strategically throughout the house to remind me always to stay positive, love myself, not be afraid to ask for help and live in the moment.

Wishing you all a great week ahead

~ Blessed Be ~.

x~X~x

Depression

Today I had a wobble, I was talking to my husband, being irritable and picking up on everything he said or did.  He knew something was up with me, he understands when I get this way and just took me in his arms and held me whilst the tears came.  It helped ~ he is going through it too, it just manifests itself differently for him.  We work together, support each other but most importantly, we understand each other and the whys for it all.  Of course it doesn't change how I feel inside, it doesn't take away the darkness that weighs me down and occasionally breaks through.  I know that I have issues and that one day I will have to unlock and face them, but for now I see my therapist, to just discuss the peripheral issues that I have to deal with day to day.  She provides me with a safe haven to talk, vent and discuss my emotions, she is there for me for as long as I need her to be and that helps too.

Our situation is one that is difficult to fix ~ I have grief issues that are unresolved, which I know will need facing in time.  I have been offered group therapy sessions as a place to do this when I feel ready.  I also have depression arising from a feeling of hopelessness about our situation and anxiety for the future.  There are days when I feel I am preparing for some impeding doom that will swallow me up and obliterate me. Yet other days, weeks even, I can walk about in a much  happier frame of mind.  

I now take medication for the depression, something I fought against and refused for a long time but which has helped with regulating my mood.  One enormous bonus for me is the sedative side effect of the medication (one of the reasons my particular tablet was chosen) which means I no longer suffer from insomnia.  Being able to sleep and get some rest has increased my ability to cope with caring for my girls both physically and emotionally.  They feel more secure too because I'm not emotionally yo-yoing around them either.

Together as a unit we are having family therapy too ~ the format for it has been tweaked to suit the girls needs.  It is proving to be beneficial, a place where we can talk about the issues that are affecting us with the aid of a mediator.  This is not to say we are a distant family unit ~ far from it.  If anything we have been told we are all too polite to each other and hide our real feelings so not to cause upset.  4 out of 5 of us are on anti-depressants, which makes me feel sad ~ could I have taken steps to avoid us arriving at this place?  I don't think I could have, I think life has just been particularly hard on us over the past 6 years which has brought us to the place we are in right now.

The future isn't bleak, I know we will all tame our demons in time, given the right tools and support to do so.  For now though, acceptance is half the battle, acknowledging the beast and knowing how it likes to manipulate is a step towards controlling how you react and respond to it's jibes.

Chronic illness, depression, anxiety ~ three foes to face and overcome.  We will, I am sure, accept and tame them ~ but for now we will also have to acknowledge that there will be wobbles and dips along the way.  I used to be ashamed of having depression and taking medication ~ I'm not any more.  I recognise that it is a reaction to life experiences that is only normal and human to succumb to, I will try to stop feeling guilty for what I cannot control and I know for myself and the family we are strong enough to rise up.

 I love this "every seed destroys its container or else there would be no fruition"

I no longer view depression as a sign of weakness.   I am no longer ashamed to say I am depressed and take medication.  I urge anyone who feels they may be suffering from depression to go and speak to their GP, or ring MIND to get advice/referrals for treatment.  Please don't feel you have to suffer alone and in silence.  There is help and support available to you if you just take that step to seek it.

~ Blessed Be ~
 x~X~x

Mental Health Awareness Week ~ Our Journey.

Anxiety, Depression, Post Traumatic Stress Disorder, Hallucinations.....did you know, 1 in 4 of us will experience a mental health problem in any year? 

This week is not only ME Awareness Week, Sun 11th - Sat 17th May ~ but also Mental Health Awareness Week which runs from Mon 12th - Sun 18th May.  Sadly as a family we have been blighted by mental health issues and ME, we feel sharing our stories can help lift the stigma and allow people to feel more comfortable and secure about asking for help and letting people know that in truth they aren't okay and would like some support. 

My husband has been taking anti-depressants for some time now and has recently embarked upon a course of CBT to help him find coping strategies for our unique home situation, our problems can't be resolved as they are caused by chronic illness and so we require assistance to help us deal with them instead.  I have only recently been on the antidepressants as I fought against the advice to take them for a long time, I am ashamed to admit, because I gain weight on the tablets available to me (I react to a number of the medications and so have very little choice of medication open to me).  Since taking them I have found some relief from the dark pit of despair I had fallen into but have also had to accept the weight gain that has come with taking them.  I have the support of a fabulous therapist who I see to vent and talk about our situation, it is my safe place to express myself and get support and advice.

I also have three daughters, one with ME, anxiety & depression, another with ME and anxiety and my third with Autism, ADHD and Dyspraxia.  Although my husband and I have our demons, as adults we can share and express our thoughts to each other but it is far harder to see your children affected, as it accentuates their vulnerability.

Two of the three girls hear voices.  One daughter has had increasingly worsening issues and difficulties these past weeks and became so ill we had to go for an emergency appointment with our psychiatrist.  Her medication was changed over 6 weeks ago and hadn't suited her and we found just wasn't working.  

We had noticed that her mood had been dropping lower and lower since switching and she had hit rock bottom and reached crisis point.  On top of that she has also been experiencing visual hallucinations and more worryingly auditory hallucinations, which in her case presented as old men talking outside of her head, sometimes a whole crowd of chattering voices, speaking not quite clearly enough to hear what they were talking about, just a whisper away from getting what is being said and then it's gone and reverts to mumbling voices.  These happen mostly whenever she's quiet or alone, day or night and on a daily basis.  

The doctor has reassured us that she feels it is nothing sinister but something called hypnagogic hallucinations. These, she feels, are occurring as a result of extreme tiredness due to my daughter having such a bad relapse and her ME being severe, on top of that her medication switch for her depression hasn't had any effect which has resulted in her sharp decline in mood.  

So - we are trying a new anti-depressant and are going back for a review in 2 weeks.  We have to watch her very very closely to ensure that she doesn't show any suicidal traits and have an open line to call should we become worried between our appointment and now.  It is hoped that the voices will dissipate between now and then, if not, further investigations will follow to explore their cause.

The hallucinations as experienced by my daughter can also be accompanied by other psychological or cognitive symptoms including:

• Anxiety, irritability or agitation
• Changes in mood, personality or behaviour
• Confusion, forgetfulness or disconnectedness
• Delusions
• Difficulty with memory, thinking, talking, comprehension, writing or reading
• Heightened arousal or awareness
• Mood depression or elevation
• Mood instability
• Poor judgement
• Sleep disturbances
• Withdrawal or depression

Our psychiatrist has discounted the following causes for my daughters hallucinations, but as I said earlier, if they continue after her new medication has had time to take hold then she may re-assess as they may be caused by psychiatric conditions including:

• Bipolar disorder (UPDATE: This has now in 2018 been positively diagnosed and she takes mood stabilising medication now)
• Psychotic depression (depression with disordered thought processes)
• Schizoid personality disorder (disorder characterised by detachment and isolation)
• Schizophrenia
• Schizotypal personality disorder (disorder characterised by a need for isolation, odd beliefs, and disordered thinking)

However, these hallucinations can also have other causes (as my daughters) including:

• Brain tumours
• Delirium
• Dementia
• Medication side effects
• Seizure disorders
• Severe fatigue  
• Sleep deprivation
• Substance abuse
• Vision or hearing loss

You can read more about this here: http://www.healthgrades.com/procedures/hallucinationshttp://www.healthgrades.com/procedures/hallucinations

Auditory hallucinations are much more than false perceptions. The combination of personalised contents and interpretational processes contributes to a dynamic and emotionally charged experience that can be better described as a belief system rooted in a perceptual experience. Auditory hallucinations are most likely to arise because of an interaction between perceptual, cognitive, and biological vulnerability as well as effective factors and contextual influences. In addition, the interpretation of these experiences combined with delusional elaboration makes auditory hallucinations a complex and truly individualised phenomenon. Understanding their complexity can lead to useful insights for therapy. - 

See more at: http://www.psychiatrictimes.com/schizophrenia/auditory-hallucinations-psychiatric-illness/page/0/3#sthash.a45XtqJW.dpuf

As a parent but yet we can understand how awful it must be for a child to feel so constantly depressed, anxious and fearful. I do keep repeating to my children though that depression isn't something to be ashamed of, it is not a weakness.  As a family we have weathered too many storms in too short a period.  This has impacted on all of us, 4 out of 5 of us are on anti-depressants, we are all going to see therapists individually and as a family.  We have been told most people only experience one or two of the traumas we have had, not so many and in short succession.  

However, not only do they have to cope with depression, all three daughters suffer from anxiety.  This makes trips out interesting and we have to plan where we go and what time we go, to be sure that it is the quietest period possible but to have a quick exit plan available should it be too much for them.

The problem we have is that the treatment for anxiety and depression (along with medications) is to work with a therapist and get "out there" and face their fears taking slow progressive steps.  This is difficult when you have ME as you have to rest, plan your day and limit your activities to manage your energy levels - picking the most important/vital activities first and then seeing if you have any energy left in the pot to do anything else, which more often than not is very little.  So we are left with only using talking therapies as the doing isn't possible, we are currently waiting for specialist therapists to become available for the girls with workers who can try to utilise the CBT approach but adapt it to suit the energy levels the girls have available.  I hasten to add that the CBT approach is NOT to treat the ME BUT to help the girls find coping strategies for their anxiety and depression.

We are aware that we have a long road ahead of us, our problems aren't going to magically go away or resolve themselves.  What I want to do instead is talk about these issues, and share with you our experiences.  A huge number of the population suffer from anxiety and/or depression and it is still quite a taboo subject for some, they feel embarrassed or ashamed for needing help and feeling this way.  It is NOTHING to be ashamed of, there are times when you simply have to step back and ask for help.  It takes great strength to do that, it is definitely not a weakness.

So, for now we shall take it one hour at a time with our fingers crossed that my daughter responds well to her new medication without too much of a wobble between the transition of coming off one drug and going onto another.  I am hoping that she is soon able to get some relief from the voices and can manage to get some refreshing sleep which she so desperately needs.  For all the girls I hope that the future will find them on top of their anxiety demons and able to feel comfortable in public spaces without shaking, sweating and feeling the urge to run away and hide.

~ Blessed Be ~

x~X~x

Accepting help

Today I returned to my GP, with The Dave alongside me because after 7 months I am still feeling exceptionally physically unwell with recurrent infections, temperatures, aches, pains, mood swings etc.  The above diagram pretty accurately describes the situation I am in. I have developed insomnia and manic behaviour which has rendered me in a position where I am struggling to cope.  The past 6 years have been incredibly tough on us as a family and the stress has built year on year resulting in me realising that I can't carry on alone and that the time has come to accept help.  

The minute I sat down in the GP office I burst into tears and was mortified by my complete loss of control.  Thankfully, The Dave stepped in and spoke to the GP on my behalf whilst I gathered myself together until I was able to contribute.  I have been stubborn, insistent on  refusing help and battling on regardless, trying to be all things to all people, which over time has chipped away at my physical and mental health leaving me in the situation I am now in which is exhausted, physically & mentally depleted, highly emotional and bordering on manic behaviour.

Stress combined with depression can creep up on you before you realise it, you think you are coping well and con yourself that you are managing when in reality you are on your knees, frantically holding on by your fingernails in order to get through each day.  It took my daughters and husband to stop and tell me they were worried about me for me to take stock and accept that the strongest decision I could make was to accept that I was struggling and needed help and to go and seek the support I need.  

My GP was wonderful, she listened, was attentive and empathetic and didn't make me feel weak or judged.  She acknowledged my reluctance to commence antidepressants but managed to make me realise that it was my best option along with some psychological support to work out coping strategies.  The situation we are in as a family is not within our control and the stresses cannot be avoided or removed.  Sadly, due to my numerous allergies the only antidepressants that I don't react to have a side effect of stimulating the appetite (arghhh!) BUT with the support of my local slimming club I am being helped to tailor a eating plan of food combinations that won't put on weight but will satisfy my stimulated appetite.  

The referral for both myself and The Dave for psychological support has been sent in electronically today.  Soon we will be helped to find a way to live with the various issues thrown up by the ongoing multiple chronic illness, anxiety, depression and panic we are coping with.  The waiting time is short and so we should be able to access this help very soon.

Life can be a bitch, it throws things at you relentlessly and can leave you feeling you are drowning and have nowhere to turn.  Realising that you are not alone is the first step, then the next, harder step is to learn to accept help and to stop saying you are "fine" when you aren't.

Today was the first step.  We are taking it one day at a time, slowly, hopefully, things will gradually get better.

~ Blessed Be ~

x~X~x