It’s All Up In The Air

Today I am questioning all previous medical diagnosis’. I may/may not have Myalgic Encephalomyelitis and Fibromyalgia. Instead I may/may not have Lupus ~ or something else as yet unidentified.

This leaves me feeling up in the air, no idea how I feel about my health ~ other than something is very definitely NOT right.

I am currently on steroids for Vasculitis which will take me through to the other side of Christmas.

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Images of the vasculitis prior to starting steroid treatment.

I am then being seen again by a doctor in the New Year to reassess and formulate a plan. I have been told that the most likely next step is to be referred to a rheumatologist for assessment and testing for Lupus and/or other possible considerations. Although the previously thought Rheumatoid Arthritis has now been ruled out after blood tests have come back as being clear on that score.

Symptoms are severe fatigue, pain, cognitive issues, rash, swollen ankles, mouth ulcers and stomach upsets. It is also noted my kidney function is lying on borderline stage 3 kidney disease ~ which hasn’t got any worse and tests are down to be taken again in March next year. It was also noted in abdominal scan that my spleen is 2cm longer than it should be although nothing is recommended to be done for that.

swollen ankles

delicious lumpy swellings around ankles which never go down and increase throughout the day.

I am trying to look into what other issues can cause these symptoms but as yet have no idea. I want to do all I can to improve my health and so would like to throw it out there to you all ~ any tips, dietary changes, advice you can give will all be eagerly accepted and ruminated.

Wishing you all good health and happiness and for those of you who are suffering I send you my love and hopes for some help and improvements for you over the forthcoming days.

x~X~x

 

The Curious Case of Mast Cell Activation.

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So, what is a mast cell? “A mast cell (also known as a mastocyte or a labrocyte) is a type of white blood cell. Specifically, it is a type of granulocyte derived from the myeloid stem cell that is a part of the immune and neuroimmune systems and contains many granules rich in histamine and heparin.” Wikipedia

I am prone to rashes, more recently a rash that waxes and wanes, flaring up to a point where it feels like tight deep burn. My daughter, who is currently studying mast cell reactions, looked at my rash and said that in her opinion it was caused by a mast cell reaction. My reply “oh?” whilst my mind raced wondering what on earth could have triggered the reaction.

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Rash on face, both arms, chest & neck ~ around lips look like lips have bled out onto my skin

So the obvious and logical next step, after calling out to Facebook chums for their thoughts, was to fire up google and have a wee search. It appears that there are rather a few conditions/causes for such reactions, the list can be found here.

The website linked above also goes on to define what mast cells are;

“What Are Mast Cells?
Mast cells are “master regulators” of the immune system. They come from bone marrow and go into all tissues of the body. Each mast cell contains secretory granules (storage sacs), each containing powerful biologically active molecules called mediators. These can be secreted when mast cells are triggered, leading to allergic and inflammatory diseases.”

Which leads me to thinking my clever youngest daughter is right ~ somewhere along the line my compromised autoimmune system, thanks to ME, FMS & HEDS, has been triggered, causing the hives and swelling reactions on my body. Thing is ~ what was the trigger?

Having not eaten anything new, used any new laundry detergents or toiletries leaves me flummoxed. The only “new” thing is acrylic wool ~ I’m crocheting a blanket for youngest daughters bed and so have been using the wool. However, I used it for a full week prior to any reaction ~  so unsure as yet whether that is the culprit. Perhaps will only know for sure after the blanket is finished.

Taken from the same site again, is a great visual explaining the parts of the mast cells, I have created the links onto the descriptions if you want to read up more about each part.

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Click the links to learn more about the parts of a mast cell. (Links open in new window)

1 Allergens & Triggers
2 Storage Granules
3 Mast Cell
4 IgE Antibodies
5 Histamine & Tryptase
6 Degranulation

In this illustration, the mast cell, similar in appearance to a white blood cell (white/blue areas), contains many storage granules (purple spheres) rich in histamine and tryptase (small orange granules).When allergens, drugs, toxins, etc. (green & pink spiked shapes) are binding & cross-bridging the antibodies (yellow Y-shaped pairs), a mast cell reaction is triggered, releasing histamine, tryptase and other mediators into the system (represented by the release of orange granules).

Thanks to Theoharis C. Theoharides, MS, PhD, MD, FAAAAI for his guidance with this visual interpretation of mast cells in activation.

As I googled I found many articles suggesting that having autoimmune disorders such as ME, FMS & HEDS often resulted in having mast cell reactions. An abstract from NCBI says this..

“Abstract
Mast cell (MC) activation disorders present with multiple symptoms including flushing, pruritus, hypotension, gastrointestinal complaints, irritability, headaches, concentration/memory loss and neuropsychiatric issues. These disorders are classified as: cutaneous and systemic mastocytosis with a c-kit mutation and clonal MC activation disorder, allergies, urticarias and inflammatory disorders and mast cell activation syndrome (MCAS), idiopathic urticaria and angioedema. MCs are activated by IgE, but also by cytokines, environmental, food, infectious, drug and stress triggers, leading to secretion of multiple mediators. The symptom profile and comorbidities associated with these disorders, such as chronic fatigue syndrome and fibromyalgia, are confusing. We propose the use of the term ‘spectrum’ and highlight the main symptoms, useful diagnostic tests and treatment approaches.”

Another article which I found here, says..

“Mast cells can express different receptors and ligands on the cell surface, molecules that can activate the cells of the immune system, such as different subsets of T cells. All these mediators and cell surface molecules can promote inflammation in the skin. During the last years, a new role for mast cells has emerged; induction of tolerance or immunosuppression and interaction with regulatory T cells. However, the mechanisms that switch the proinflammatory function of mast cells to an immunosuppressive one are unknown.”

Fascinating stuff, so I googled further for more information available about how it affects those of us who are immune suppressed. I stumbled upon this, published in Prohealth..

“Mast Cell Activation Syndrome is new to the medical profession – much newer than ME/CFS or FM. Diagnostic criteria were only proposed about five years ago and because most doctors don’t know about it, it’s rarely diagnosed.”

The article continues (which I find very interesting)..

“It’s also often associated with POTS, Elhers Danlos Syndrome, Lyme Disease and ME/CFS/FM. Dr. Klimas has called it one of the most interesting immune diseases going.”

Which would explain why I am finding myself suffering from inexplicable waxing and waning rashes of different varieties. Unfortunately though I can’t find out why, what the trigger is and how to reduce the inflammation and duration of the rashes other than taking antihistamines. The following part of the article rings very true for me, the doctors call me their anomaly, they simply can’t figure me out and have no clue how to proceed. Instead just help me to “manage” symptoms as best they can.

“In fact, it can produce among the strangest and widest variety of symptoms of any disease. So many that the people afflicted with these kinds of allergies usually utterly baffle their doctors. Most doctors don’t know anything about them and they are rarely diagnosed. They’re caused by a disorder called Mast Cell Activation Syndrome (MCAS) which features mast cells gone a little crazy.”

 They further explain very clearly the role of mast cells in healthy people as being..

“mast cells are really common and really important. So much so that they’re often called the master regulators of the immune system. Mast cells come from the bone marrow and are filled with sacs of chemical mediators. Histamine is the most commonly known mediator, but there are countless others.

Mast cells also play an important role in the body’s first line of defense. Their signals recruit other players in the immune system response and help to keep us healthy and free from disease.”

The problem with diagnosing Mast Cell Activation Disorder (MCAD) is that many symptoms are the same as those for ME, FMS & HEDS ~ every singe cell in the body can be affected by mast cell activity which explains the huge and varied symptoms from cognitive dysfunction, to fatigue, digestive issues, blood issues and so on. Also, to make matters more complicated the MCAD can affect each individual differently so that there is no set clear pattern to it’s activities. There are tests it goes on to say, for MCAD, but not ones to be offered by GP’s but hospitals ~ also the tests may need to be repeated several times to gain a positive result ~ how often do doctors repeat and repeat tests? In my experience they don’t, test once and then leave it at that. So I suppose you are lucky if it shows positive first time of testing to gain diagnosis.

Then it moves onto treatments; which I will list but you can read more about each one here; Antihistamine drugs, mast cell stabilisers, trigger avoidance (Ha ~ easier said than done, how on earth do you determine what the trigger is?), diet ~ low histamine one, which you can read more about here, alteration of medications to ensure they are free from fillers and artificial colours.

ME Action UK published this about how sufferers of ME/CFS most likely have MCAD. I quote “Evidence has certainly been presented for a causal involvement of pathologically active mast cells in interstitial cystitis, fibromyalgia and irritable bowel syndrome (6) and a link is suggested with POTS and dysautonomia (7), all of which are frequent comorbidities with ME/CFS. Mast cell activation disorder (MCAD) can cause tremendous suffering and disability: there is no cure for it and management is directed towards symptom control.”

I have also discovered this article on Health Rising  which talks about histamine intolerance in sufferers of FMS and ME.  It gives us the histamine overview as this..

“Histamine is a potent signaling molecule or biogenic amine made from the amino acid histidine. It is naturally found in plants and animals. Histamine helps regulate many bodily functions including digestion, sleep, sexual function, and blood pressure, and in the brain it functions as a neurotransmitter, carrying chemical messages between nerve cells.

Under normal circumstances small amounts of histamine help to facilitate health and balance in many systems of the body. In response to foreign pathogens, wounds and allergies, however, large quantities of histamine are released in our bodies by mast cells and basophils – two types of white blood cells that reside in blood and tissues respectively. People with allergies often take antihistamine medications to provide relief of symptoms associated with this inflammatory response.

Histamine exerts its effects by binding to four different receptor sites on cells. Each site is able to produce different symptoms by impacting different tissues and organ systems.”

Then the article talks about histamine in our diet and how following a low histamine diet may help control symptoms of mast cell activation. Interestingly women who are perimenopausal and menopausal can often have histamine intolerance too. Holds up hand to being in the midst of perimenopausal drenching hot flushes!

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Looking at the above graphic I am a sufferer of many of these symptoms ~ so am seriously going to look at changing to a low histamine diet to see if that helps improve my symptoms along with *crosses fingers* reduction of rashes too.

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I found an article in Genetic Genie which also discusses the highly suspected MCAD in those who suffer from the immune suppressing conditions of ME, Fibro, Lupus and Lyme to name but a few.

The article says..

“Systemic mastocytosis (mas-to-sy-TOE-sis) is a disorder caused by a genetic mutation that results in an excessive number of mast cells in your body. Mast cells normally help protect you from disease and aid in wound healing by releasing substances such as histamine and leukotrienes. But if you have systemic mastocytosis, excess mast cells can build up in your skin, around blood vessels, in your respiratory, gastrointestinal and urinary tracts, or in reproductive organs. When triggered, these mast cells release substances that can overwhelm your body and result in symptoms such as facial flushing, itching, a rapid heartbeat, abdominal cramps, lightheadedness or even loss of consciousness. Common triggers include alcohol, temperature changes, spicy foods and certain medications. The following “triggers” may influence a mast cell response: drug abuse, excessive alcohol consumption, preservatives, stress, sunlight, environmental toxins, bacteria/fungi/mold, artificial colors or flavorings, heat/cold, etc. Minimizing your exposure to these triggers may help reduce your mastocytosis risk.”

The article also pointed to the NHS website for more information, which I will share with you here.

One last article I will share with you was found on the Kaiser Permanente Washington Health Research Institute website.

The article is about whether mast cells help to unlock chronic and unexplained disease. It says that..“Doctors know that mast cells are part of the immune system, but they might not know about MCAS, which was only recently recognized as one of two forms of mast cell activation disease. The better-known form, mastocytosis, is very rare and results from too many mast cells. In contrast, people with MCAS have a normal number of mast cells, but those cells behave badly. In addition to responding to common allergens, in MCAS the mast cells can be hyper-responsive to otherwise non-threatening stimuli, even foods, smells, and physical or emotional stressors. We don’t yet know how common MCAS is, but preliminary research suggests it may affect one in six people (~17 percent).”

The article goes on to say..

“Why is rogue mast cell activation bad?

“When activated, mast cells release many chemicals (such as histamine, heparin, leukotrienes, cytokines, and many others). These chemicals directly or indirectly cause a host of responses in the body including (but not limited to) inflammation, pain, and slow wound healing. Chronic inflammation is as an important underlying cause of chronic disease, since prolonged inflammation can damage the body and is even implicated in some neuropsychiatric illness. By constantly causing inflammation and other reactions in the body, chronic mast cell activation can wreak havoc. And because mast cells are located throughout the body, this havoc can appear just about anywhere.
What should providers know about MCAS?

If Dr. Afrin and his colleagues are correct, MCAS should always be suspected in people with poorly explained chronic, multisystem disease, particularly when allergic symptoms or inflammation are involved. Dr. Afrin’s book also nicely illustrates how frustrating this condition is for patients and providers because MCAS can look different in each person and a patient’s symptoms can change over time as different organ systems are affected. It appears that MCAS is more prevalent in females than males (3:1).

What does the future hold for MCAS?

In time, we will learn more about the underlying cause of MCAS (current thinking attributes it to one or more genetic mutations), how to effectively manage the disease, and perhaps even how to cure it. In the meantime, Dr. Afrin and his colleagues want to raise awareness of MCAS among the medical community and patients living with chronic disease. With this awareness will come the necessary funding, research, and knowledge needed to help us reduce the pain and suffering experienced by those living with chronic disease due to MCAS.”

I find all of this fascinating, since having children my body has changed enormously. I have low blood pressure (Orthostatic Intolerance) and during my middle pregnancy had gestational diabetes. The legacy of my pregnancies ~ other than my wonderful three daughters, who I am forever thankful for, has left me with allergies and poor health. I am now latex allergic, leather allergic, allergic to adhesives in plasters and tapes, allergic to paint fumes, am more sensitive to medications, so lower doses are to me the same as larger doses in “healthy” people. I am very slow to heal ~ my surgeon told me I take twice as long as I should to heal. I bleed more profusely ~ like someone on long term blood thinners. I suffer from unexplained rashes, have a permanent snuffly nose which never develops into a cold but also never goes. I have digestive issues along with the diverticulitis which means twice daily laxatives are needed permanently, plus acid reflux and heartburn. I have joint and muscle pains, weakness in ankles and wrists particularly ~ requiring splints and mobility aids. Hyper~mobile joints causing issues with my jaw and mobility. Regular headaches and body pains which pain killers don’t ease. These are only a few of my regular daily symptoms, but suffice it to say they make living different to how it used to be. On top of that I have sometimes severe, but usually just inconvenient, cognitive issues ~ this makes comprehending information difficult. It also makes word finding and word combining difficult for me. I often need to zone out to stop becoming too heavily overloaded, which can be awkward if mid conversation.

I am more grateful than ever before of how my body keeps me safe, it may not be perfect and is battered and bent due to weathering a number of storms. I now acknowledge that it works hard to protect me and it’s reactions are in turn responding to some trigger within spurning widely varied symptoms to manage within any one day. Reading about mast cell activation disorder/syndrome makes sense of all these symptoms, especially as I have a number of conditions which fall under the category of diseases affected by it.

triggers-for-mast-cell-diseasesSlide-05-OtherConditionsMCAD_+Other+Research+Ideas4873ff1d23cd8378de7c5c8359c825c3--chronic-illness-chronic-pain
I am now more at peace with the rashes as I can now understand that it is a body reaction to triggers which as yet I have not pinpointed. Although I do get them during stressful episodes ~ usually on my chest, which makes me self~conscious if my neck is visible. The current yo~yoing rash on my face, neck, chest and arms is uncomfortable, it feels like a burn, tender to touch and tight on my skin but prickling and itchy too. It also makes me feel self~concious from a vanity point of view.

I have found this blog post, which talks about histamine intolerance and advice regarding diet which I will read through a few times taking notes and try tweaking what I eat to see if anything changes for the better.

So that’s all for now on my voyage of discovery, I feel I have just scrapped off a very fine top layer of the topic and will be spending time and energy as and when I can looking into this in more depth. This will take time ~ all information needs reading, re~reading and reading again to lodge even slightly within my brain these days. Cognitive issues are hugely frustrating and so I know it’s going to be a long and gnarly journey. If I find anything beneficial in easing symptoms then I promise to share that with you.

x~X~x

What makes you happy?

What makes you happy?

Life today runs at such a fast pace, with the rise of social media we all have the ability to compare our lives, successes and failures against others. This can lead to us becoming dissatisfied or worried about how we measure up, leading to stress and unhappiness with how our life is moving forwards. One thing to remember though is that what people choose to share on social media can be tweaked to appear that life is better than it really is, that they are more successful or popular.

Were you aware that there is a movement called “Action For Happiness” ~ I wasn’t until today, they state their mission as being “a movement of people committed to building a happier and more caring society. We want to see a fundamentally different way of life – where people care less about what they can get just for themselves and more about the happiness of others.” 

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The movement has The Dalai Lama as its patron and they have a course they offer, accessed via the website that runs over 8 weeks and helps you to explore what matters in your life and how to seek happiness, just click on this link to be directed to it; The Action for Happiness course (“Exploring What Matters”)

This video from their website explains more..

From the Wikipedia page about happiness it says.. “In philosophy, happiness translates the Greek concept of eudaimonia, and refers to the good life, or flourishing, rather than simply an emotion.

In psychology, happiness is a mental or emotional state of well-being which can be defined by, among others, positive or pleasant emotions ranging from contentment to intense joy. Happy mental states may reflect judgements by a person about their overall well-being.”

Searching for a good definition of what it is to be happy I came across this from Psychology Today;

“The Art of Happiness

Ah, happiness, that elusive state. Philosophers, theologians, psychologists, even economists, have long sought to define it, and since the 1990s, a whole branch of psychology—positive psychology—has been dedicated to pinning it down and propagating it. More than simply positive mood, happiness is a state of well-being that encompasses living a good life—that is, with a sense of meaning and deep satisfaction.

Research shows that happiness is not the result of bouncing from one joy to the next; achieving happiness typically involves times of considerable discomfort. Money is important to happiness, but only to a certain point. Money buys freedom from worry about the basics in life—housing, food, clothing. Genetic makeup, life circumstances, achievements, marital status, social relationships, even your neighbors—all influence how happy you are. Or can be.

So do individual ways of thinking and expressing feeling. Researchers estimate that much of happiness is under personal control. Regularly indulging in small pleasures (such as warm baths!), getting absorbed in challenging activities, setting and meeting goals, maintaining close social ties, and finding purpose beyond oneself are all actions that increase life satisfaction.”

My belief for my life is that I must enforce all that is good and accept or alter, if possible, what is bad.

I know that some hurdles are tougher, higher, more jagged round the edges than others and that it takes time, determination and sheer will power to plough through them, if necessary utilising the help and motivation from others to get me there. I think the ability to be happy is due to adjusting my mindset to change my perception of events that transpire and to work towards maintaining a positive outlook no matter how hard it rains.

I enjoyed reading “How to Stay Authentic, No Matter What” again in Psychology today, nodding my head in agreement as I read it. When asked “Who are you?” What do you say? It made me stop and think about who I think I am. I have to admit I am different around different people. One person with family, another with friends, yet another with acquaintances and so on. I feel that different people spark different responses from me, they make me feel more confident or insecure depending on who they are. I try to allow myself to be as true to myself as possible within the differing situations. Although sometimes I find myself saying or doing things to suit others and not being honest and true to myself. “Learning how to express the diverse aspects of who you are as a person can be one of the greatest joys in life, and an essential part of maintaining your emotional well-being.”  That is something I wholeheartedly agree with!

I came across this article in The Telegraph which talks about “Ikigai” which means roughly something that makes life worth living. Ikigai is pronounced ee-kee-guy and is a Japanese concept. Wikipedia tells me “Everyone, according to Japanese culture, has an ikigai. Finding it requires a deep and often lengthy search of self. Such a search is important to the cultural belief that discovering one’s ikigai brings satisfaction and meaning to life” The Telegraph article is interesting and discussed Ikigai and how to find it, I liked the part where it shows us advice from an ikigai master, so much so I have copied it here to share with you too..

  1. Look at what’s in front of you
    “Ikigai is not something grand or extraordinary. It’s something pretty matter-of-fact.”
  2. Remember why it’s important
    “It really does matter. If you have an ikigai, you probably won’t ever kill yourself, unless you lose it, and you’re probably going to have a better life, because you will have something you live for that’s key.”
  3. Consider why you do things
    “I wrote about a guy who hates his boss, hates his work, and then comes home to his daughter clinging to his leg. That’s why he puts up with this; that’s his ikigai.”
  4. Take time to decide
    “You damn well better find work and love in a way that suits you. You damn well better be best friends with the person you choose as your spouse.”
  5. Be wary of the individual pursuit of ikigai
    “If you sleep around outside your marriage, you may find ikigai elsewhere in different people, but you’ve left a lot of human wreckage behind you.”
  6. Remember that it’s never fully secure
    “Even if you are completely in love with your spouse, it’s always possible you wake up one morning and there is a note on your pillow saying ‘Goodbye’. Misfortune can happen to anybody, so ikigai is never completely secure.”
  7. Re-examine your ikigai from time to time
    “I make sure that, occasionally late at night, I’ll have a drink or two, not think about anything in front of me but just sit back and think about my life: How’s it going? What’s bothering me? What’s really going on now?”

If you find this topic interesting then you can buy the book by Prof Gordon Mathews “What Makes Life Worth Living? How Japanese and Americans Make Sense of Their Worlds” to learn more.

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Thinking long and hard I have come up with what I know makes me happy;

  • Laughing with my husband and daughters, especially when we create new signs and sayings that only we can relate to.
  • The smell of my dog Taylors paws, they have a warm subtle reassuringly comforting smell which is impossible to describe.
  • The company of my dogs, snuggled up close when I am poorly.
  • The smells of fresh cut grass, baking bread, cucumber when just sliced, coffee percolating, the coast, smells of hot chips with lots of vinegar ~ just a few of my favourite smells, there are in reality a large number, so just said my top ones.
  • Sitting quietly surrounded by trees and watching birds, butterflies, bees, squirrels and other little critters go about their business. Lying on my back watching patterns of the leaves as they rustle in the wind and the clouds as they scurry above.
  • Sitting barefoot on the beach, digging my toes into the sand and watching the waves.
  • Sitting quietly in a cafe, drinking a lovely hot Mocha, reading a book and intermittently people watching. Creating the lives and loves of the people I watch as they pass by.
  • Slipping into a bed freshly made with clean sheets.
  • Sitting by the fire, with dogs and family, chatting and watching films together.
  • Knowing that I am loved by those closest to me.
  • Not allowing the loss of past relationships to get me down, to be able to accept that people move on and to not hold a grudge.
  • Feeling lucky to have found love, friendship and support through those closest to me, relationships I treasure and don’t take for granted.
  • Being alive, knowing that life could be far worse and that in comparison to many people I have the luxury of a roof over my head and health care to help me when I am sick and struggling.
  • Helping others, supporting causes and doing what I can to spread a little love back into the world.
  • Forgiving myself when I need to.
  • Coffee ~ knowing I have it at hand whenever I need it’s embrace.
  • My tattoos
  • My piercings
  • Learning to love myself.
  • Photography ~ immersing myself in seeing through a lens and playing with the features on my camera, dipping into my course as and when health allows.
  • The taste of a good wine in my mouth.
  • The flavours of a delicious meal, preferably not cooked by me and not having to do the washing up!

I know in reality if I sat down and wrote a list over a periods of weeks that far more reasons to be happy would come to me. These are just what I can think of for now.

If you are feeling down then I hope you can find a way to climb back up to see the light and sunshine around you. Wherever there is darkness there is also light.

I will leave you with these quotes..

“The dance between darkness and light will always remain ~ the stars and the moon will always need the darkness to be seen, the darkness will just not be worth having without the moon and the stars.” ~ C. JoyBell C.

“In our day and age, global society has been saturated with the wrong teaching of false positivity. The denial of darkness never equates the abundance of light. And the denial of your actual character never equates to the reality of your best character. People today are afraid to work on themselves and on their actual realities, they believe that outward appearances are enough. Outward appearances have become everything in our current day and age. People don’t see what they are actually like, nor who they actually are, in reality. They live in a phantasmic version of reality. It has to stop. In the phantasmic version of reality, there is no chance to experience true love, true goodness, and true metamorphosis. The caterpillar does not become a butterfly by telling everybody it has wings. It actually buries itself in darkness and grows those wings.” ~ C. JoyBell C.

“For every item that carries the darkness of humanity there’s one that holds the light. And that light is worth believing in. Not just in others, but in yourself as well.” ~ C.M. Rayne, The Forbidden Land of Andara

‘Life is a trick and you get one chance to learn it.’ ~ Terry Pratchett

The whole of life is just like watching a click, he thought. Only it’s as though you always get in ten minutes after the big picture has started, and no-one will tell you the plot, so you have to work it out yourself from the clues. And you never, never get a chance to stay in your seat for the second house. ~ Terry Pratchett

x~X~x

Our Soul ~ what happens after death?

I’ve recently had discussions with various family members about what they think will happen to us after death.  Specifically, we wondered about the part of us that makes us “us” ~ our soul.

I understand that those of you who have faith believe in the afterlife, that different faiths have varied versions of a Heaven. For you this must be very comforting, especially when close to the point of death, to believe in something “more”. My question is though ~ and I  am curious and not intending to be rude ~ where there is a Heaven then I assume there is a Hell. If God forgives all who repent their sins does this mean that even the evil members of humanity go to Heaven? Or is there a place such as purgatory for all religious faiths ~ where those who falls short of grace have to be measured by trials to decide their fate?

Now, although I am not a religious person anymore ~ which I discussed in a previous blog post, I feel I am spiritual. In the past I felt that if you said that you were spiritual then people automatically felt you must therefore follow a religion, not so..

“Religion and spirituality are intertwined but quite different. … However, as it is understood today, spirituality gives the individual autonomy over his or her interpretation of the soul or spirit, whereas religion implies participation in a communal practice and interpretation of divine belief and worship.”

I believe that somehow our soul lives on beyond the life of our body. Although that is about as far as I have got with it, I still can’t work out what exactly happens and where it goes.

In my nursing days, both in hospital and in nursing homes, I stayed with many patients and held their hands whilst they took their last breathes. On many occasions I saw their face become peaceful as they told me “x” (a person they knew who had passed) had come to collect them. It comforted them and they passed away.

On the moment of my mothers passing I saw a purple mist come from her body, swirl around myself, my sister, brother and dad. It gave me what felt like a warm, firm last hug and a sense of mum being all around me, then dissipated. I know my sister saw and felt it too but dad and my brother didn’t. I can’t explain it but to my mind that was mums soul leaving her body then moving on to a journey beyond, to where I have no idea.

I believe energy left behind by these souls can cause what others call supernatural occurrences, such as haunting. I also believe that the souls can be contacted by those who are genuinely psychic and that this is something to not be played with and that souls should be left alone once they have left their body.

I feel those who have passed around me sometimes, guiding me by showing small signs when I need it most. I know many people will say that this is just wishful thinking and my mind sees what it wants, if it is then I am happy with that too ~ it comforts, it helps and it suits me to believe it to be true.

I would love to know what you think about the soul/spirit and what happens to it on the point of death. I am sure we all have very different perspectives and thoughts on the matter.

This video, narrated by Morgan Freeman is fascinating ~ “Is there life after death?”

I enjoyed watching this video and like the thought that there is something “more” once our bodies are no longer part of us. That our soul/spirit moves on to another place.

A theory as set out by Dr Hameroff, says..

“According to Dr. Hameroff, in a near-death experience, when the heart stops beating, the blood stops flowing, and the microtubules lose their quantum state, the quantum information in the microtubules isn’t destroyed. It’s distributed to the universe at large, and if the patient is revived, the quantum information can go back to the microtubules. In this event, the patient says they had something like a near-death experience, i.e. they saw white light or a tunnel or floated out of their body. In the event that the patient is not revived, “it’s possible that the quantum information can can exist outside the body, perhaps indefinitely, as a soul,” he said.

The Orch-OR theory of consciousness remains controversial in the scientific community. Many scientists and physicists have challenged it, including MIT physicist Max Tegmark, who wrote a paper in 2000 that was widely cited.

Still, Dr. Hameroff believes that “nobody has landed a serious blow to the theory. It’s very viable.”

I believe we are constructed from energy, and that when our body dies the energy of our soul leaves our body and moves on. It’s where it goes that I want to know.

Whilst searching for answers I came across this article published by the Telegraph, it talks about a study carried out by the University of Southampton, who have spent four years looking into near~death and out~of~body experiences to determine if a continuation of awareness in some form continues after death, when the brain has completely shut down. The scientists examined in excess of two thousand people who had suffered from cardiac arrests in a range of fifteen hospitals around the UK, in the US and in Austria.  Recall of patients when they were resuscitated was found to be detailed in many cases, describing events that had gone on around them when they were technically dead and had no way of knowing, other than if they had a “soul” and had watched from outside of themselves. What is fascinating is many times these descriptions were verified by the medical professionals tending the patient.

“Dr David Wilde, a research psychologist and Nottingham Trent University, is currently compiling data on out-of-body experiences in an attempt to discover a pattern which links each episode.

He hopes the latest research will encourage new studies into the controversial topic.

“Most studies look retrospectively, 10 or 20 years ago, but the researchers went out looking for examples and used a really large sample size, so this gives the work a lot of validity.

“There is some very good evidence here that these experiences are actually happening after people have medically died.

“We just don’t know what is going on. We are still very much in the dark about what happens when you die and hopefully this study will help shine a scientific lens onto that.”

In May of last year the Telegraph published this article, “Indian specialist Dr Himanshu Bansal, working with Biotech companies Revita Life Sciences and Bioquark Inc, has been granted ethical permission to recruit 20 patients who have been declared clinically dead from a traumatic brain injury, to test whether parts of their central nervous system can be brought back to life.” 

I am keen to see the results of this study, the trial participants will all be people who are clinically dead but being kept alive by machines on life~support. The whole topic of what happens inside our brains and in turn after death is controversial and intriguing. Who knows what this study will uncover and what medical breakthroughs it will bring in turn. So I will keenly watch and wait.

Whilst discussing this topic with my family I remembered reading about a study by a doctor who weighed patients on the point of death and noted that they all lost a specific amount of weight which he claims is the weight of a soul and they lose the weight as the soul leaves the body.

I thought I better check it out to see if it was true first, and so checked with Snopes, my go to for fact checking, it confirmed that the study had been conducted.

snopes

I know that this study was surrounded by controversy and rubbished but couldn’t remember the details, so searched for it and this is what I found..

The study was about finding out the weight of the soul by using a specific scale to measure them.. “dying men, at the very moment of their decease, have been placed on delicate scales that have recorded their mortuary degravitation.” (Evans 1946)

It further says..

“ORIGINS: Most of those of a religious bent believe in life everlasting for the faithful, a continuation of the life force that reaches far beyond the limitations of mortal flesh. In such belief systems, death is not an end but a transformation: though people shed their corporeal selves at the moment of demise, that which made them unique beings lives on to rejoin the Creator. We call this intrinsic personness “the soul,” an entity described in the dictionary as “The immaterial essence, animating principle, or actuating cause of an individual life.”

Yet as much as we believe in the concept of “soul,” this life spark remains strictly an article of faith. As central as it is to our perception of ourselves, it can’t be seen or heard or smelled or touched or tasted, a state of affairs that leaves some of us uneasy. Without the soul, dead is dead. But if it could be proved to exist, a great deal of anxiety over what happens to us when we die would be vanquished.”

I agree, it would be good to really know ~ but does this really prove anything if the weight changes? Could it just as easily be due to total cessation of body function?

It was Dr Duncan MacDougall from Massachusetts (cue Bee Gees song) ~ who suggested that the soul was measurable and had mass, therefore you would see a change in weight at the moment of death as the soul left the body. Supposedly the idea of the soul having being detectable was postulated earlier than the 20th century, but the experiments regarding recording of specific weight was attributed to Dr MagDougall in 1907.

The article continues..

“Dr. MacDougall, seeking to determine “if the psychic functions continue to exist as a separate individuality or personality after the death of brain and body,” constructed a special bed in his office “arranged on a light framework built upon very delicately balanced platform beam scales” sensitive to two-tenths of an ounce. He installed upon this bed a succession of six patients in the end stages of terminal illnesses (four from tuberculosis, one from diabetes, and one from unspecified causes); observed them before, during, and after the process of death; and measured any corresponding changes in weight. He then attempted to eliminate as many physiological explanations for the observed results as he could conceive.”

The experiment was conducted as follows..

experiment

He then, it is said, repeated the experiment using dogs, fifteen in total. His results, he claimed were all negative with the animals because it was his belief, and his experiment proved it, that dogs/animals did not have souls. This experiment caused controversy because he used 15 healthy dogs and poisoned them as he claimed he couldn’t find any sick ones for his experiment.  Also, for my two~penneth worth, I believe that all living creatures have souls ~ a purpose driving their being. I know many will also disagree with this ~ but that’s the beauty of our various beliefs ~ none of us can prove anything until we pierce the veil and pass through to what lies beyond. Once there we can’t very well return to tell everyone left behind on earth where they have gone, if they have gone anywhere at all. For all we know there may actually be a big nothing ~ death and then that’s it!

The results of the experiments on the six patients were as follow..

  1. “[S]uddenly coincident with death . . . the loss was ascertained to be three-fourths of an ounce.”
  2. “The weight lost was found to be half an ounce. Then my colleague auscultated the heart and found it stopped. I tried again and the loss was one ounce and a half and fifty grains.”
  3. “My third case showed a weight of half an ounce lost, coincident with death, and an additional loss of one ounce a few minutes later.”
  4. “In the fourth case unfortunately our scales were not finely adjusted and there was a good deal of interference by people opposed to our work . . . I regard this test as of no value.”
  5. “My fifth case showed a distinct drop in the beam requiring about three-eighths of an ounce which could not be accounted for. This occurred exactly simultaneously with death but peculiarly on bringing the beam up again with weights and later removing them, the beam did not sink back to stay for fully fifteen minutes.”
  6. “My sixth and last case was not a fair test. The patient died almost within five minutes after being placed upon the bed and died while I was adjusting the beam.”

So, out of six tests, two had to be discarded, one showed an immediate drop in weight (and nothing more), two showed an immediate drop in weight which increased with the passage of time, and one showed an immediate drop in weight which reversed itself but later recurred. And even these results cannot be accepted at face value as the potential for experimental error was extremely high, especially since MacDougall and his colleagues often had difficulty in determining the precise moment of death, one of the key factors in their experiments. (MacDougall later attempted to explain away the timing discrepancies by concluding that “the soul’s weight is removed from the body virtually at the instant of last breath, though in persons of sluggish temperament it may remain in the body for a full minute.”)

Dr. MacDougall admitted in his journal article that his experiments would have to repeated many times with similar results before any conclusions could be drawn from them:

Good old MacDougall didn’t continue with anymore of these experiments for four years when in 1911 he reappeared claiming he could show the soul on x~ray as it left the body on point of death.

The second experiment was this..

2nd experiment.jpg

It would seem after the second experiment cycle that Dr MacDougall did not make any further inroads in proving his belief. He died in 1920 but the legacy of his experiments live on ~ and cause many lively debates on the subject of whether the soul does indeed have a specific measurable weight.

“Nonetheless, his legacy lives on in the oft-expressed maxim that the human soul weighs 21 grams. (At the moment of death, MacDougall’s first test subject decreased in weight by three-fourths of an ounce, which is 21.3 grams.)”

I find this topic completely engrossing and if you search there are so many different opinions from a wide variety of sources. Scientific, religious, spiritual, agnostic and so on ~ whatever your bent I think it is a subject that could cause a long and lively discussion.

I hope to not have to find out first hand for a number of years yet, but would love to know your stories, thoughts, experiences on this matter.

Life is a gift, one I intend to make the most of, but how reassuringly comforting would it be to know that there is “more” for us beyond this life?

I leave you with this..

2_Subtle-body-after-death

x~X~x

 

The joy of a new font!

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I saw the above photo on a friends timeline this morning on Facebook and I was amazed by how easily I could read it. The above image shows you what the dyslexie font looks like.

Normally I struggle with reading blocks of writing, I have cognitive issues which are brought on by my chronic illnesses which make reading and comprehending written words difficult.

I have been to their website and purchased the font and extension for my browser and have to say it is awesome!

Now my computer, word docs, online searching ~ everything is in the dyslexie font making my life so much easier when trying to search and read any kind of information.

So, here’s a heads up, if you are like me and struggle with reading online and want to purchase this awesome font then click on the link here and follow the instructions. I have all the products for under £10 for a years subscription!

Unfortunately I have no idea, as I am not technically minded, on how to upload the font onto my WordPress account to have my site with the dyslexie font ready for you all to read it more easily. However, if I find a way to do it then I will change my settings so all blogs are written using the font.

x~X~x

Crossroads

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The past is behind me, now I need to decide whether to turn left, right or go straight ahead!

At some point in life I believe everyone reaches a crossroads, the direction they choose to take then determines what path their life takes.

It could be due to any matter of circumstance. To close a painful chapter, to expand professionally, to reflect on past choices just to name a few.

For myself personally I have to decide on what to do about past events and how they have insidiously impacted on my life. Incidents which had until recently lain dormant, buried within the vault of my memory, have resurfaced. I now know in hindsight that these issues were not okay, that something should have been done about it and support was not forthcoming at the time for me to do that.  Relationships with specific people need contemplation and their value to me considered.

I accept that people come and go, friendships and family relationships wax and wane. It is recognising which of these are toxic and which are healthy. To work on redefining boundaries which I am comfortable with in order to move onwards with the rest of my life. To make what life I have remaining one I consider to be healthy relationship wise and to offer my family the best of myself for our future together.

It is never too late to change the direction of our lives, to work towards a more positive future.

So here I stand, scratching my head whilst standing in the middle of the junction that is the crossroads I find myself in. The direction I have taken thus far is closed to me, it is the past. I have three possible directions I can take ~ I cannot share with you the options lying open before me because they are painfully private and I am protecting them fiercely until I know what I need and want to do. Perhaps a day will arrive at a point in the yet unseen future where I will feel ready to share. Until then I have some serious thinking and considering to work on.

Crossroads Dilemma

Standing in the middle of a crossroads,
I wonder which direction I should take.
None of the paths will be easy I know,
No matter which decision I make.

My life is holds many possibilities,
A hope for better things to come.
What happened in the past should be history,
But it’s legacy is still living on.

I want to move forward with a positive mind
To do this I need to put my ghosts to bed.
But the road forward and how I choose to do that,
Is the dilemma whirring through my head.

I must not allow myself to falter,
Habits of the past I must shed.
I will not allow myself to be a victim,
But be strong and steadfast instead.

In order to be the best me possible,
I must be true to what I aim to be,
Not allow negative words or actions of others
To affect my decision is the key.

To remove from my life toxic relationships,
My past with them history, their bindings I shake free,
I will become whole again, take the route necessary,
To find a way forward with love and compassion for me.

I know my husband and daughters are always by my side,
With their support and love my future cannot be bleak.
With them alongside me, I know my future will hold
A move forward towards the peace I seek.

I send support over the magic of the internet to those of you also contemplating which direction to take with your life. To have the strength to follow your convictions, to know which path to take and the strength to pursue it.

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I wish for better days ahead, one where there will be peace within my soul. To provide and share laughter and joy with those I love and give them the love and support they draw from me, which in turn gives me the warmth and love from them.

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x~X~x

Weight up!

I have a peeve to share with you ~ I cannot stand others making assumptions without knowing the facts. Weight issues is one of them!

To explain what got my dander up ~ this slideshow thingumabob came up on my timeline on Facebook; being of a comely persuasion I took a peak. I have had most of these thrown at me at one time or another ~ my history since having children has been one of huge differences of fluctuating weight. I have gone up and down through sizes from 10 to 22 in the past.

I am currently a large size 16 and have been advised by every doctor and nurse I have had contact with to lose weight ~ if only it were that simple. Over the past few months I have slowly reduced myself from large 18 to large 16, which for me is some massive achievement and I am clapping myself heartily on the back.

Weight loss for me used to be easy because I exercised ~ a lot. I played tennis, swam, dog walked for 7 miles a day, went to various health classes, Zumba was my last one and was generally fit and healthy.

THEN started my journey of ill health, it began slowly and built up over the years until eventually I was diagnosed in 2016 with Myalgic Encephalomyelitis, then later that year with Diverticulitis. AS IF that wasn’t enough to contend with my body decided to throw some more at me and at the beginning of 2017 and a rheumatology assessment Fibromyalgia and Hypermobility Ehlers~Danlos Syndrome were added to the list. Then tag on to the list long term anxiety and depression and voila, you have me today.

With my ill health comes weight gain due to medications and my inability to exercise anymore.

These are the titles of the ten slides from the article I mentioned at the beginning of this blog..

  1. When are you going to start dieting? Hmm, well if you say that to me I would think you were particularly tactless first off. Then I would feel pissed off at your assumption that I have a poor diet! To assume my diet means you assume my weight is due to poor food choices and/or overeating. As it happens I am now taking Huel for breakfast and lunch as it is very easy to prepare (so takes fewer spoons aka energy) and it is a complete food which means I know I am having my necessary nutritional requirements. I then enjoy my evening meal with my family, which may or may not include something extra afterwards ~ my current treat is a Curly Wurly straight from the fridge, which satisfies my sweet tooth and at 118 calories a bar isn’t too terrible. I am not “dieting” because diets are not sustainable. Instead I am consciously aware of what I am eating and make the best choices I can. Nothing is off limits but many choices are within moderation and not everyday. I am a foodie and refuse to deny myself the pleasure of a tasty meal, having a delicious menu does not necessarily mean a unhealthy one.
  2. If you would just quit being so lazy maybe you wouldn’t be overweight. Grrr, this one really winds me up ~ how many of you with chronic invisible illnesses have had this one thrown at you? I would guess most of you! Seriously I am not lazy and never have been. Historically I would tend towards the manic, buzzing around from one place to another. I LOVED exercising, never in the gym though ~ my favourite ways to burn off energy would be on a tennis court or taking a long walk. Sadly now the most I can do is a short walk using my crutches and gentle stretches at home. Don’t ever undervalue the benefit of stretches ~ they truly do help. Also, even if I didn’t have poor health ~ why assume someone who is overweight is lazy? There are so many varied reasons for weight gain and to assume its due to poor diet or laziness really winds me up.
  3. Are you sure you should be eating that? Yup, I’m an adult, I can make choices about what I would like to eat whether you approve or not! As a parent I always offered a well balanced diet, when the girls were babies I made my own purees for them ~ except when I was out and about ~ then I had to buy baby food as restaurants and cafes refused to warm up my purees as they were “health and safety risks”. As they grew they had healthy meals with vegetables but also cakes, crisps and biscuits too. I think everything within moderation is the perfect way to go. Now as adults the girls have chosen their own dietary route, one is vegan, one vegetarian turning vegan and my third daughter is a dairy free pescetarian. So if you ask me whether “I should be eating that” aside from a withering look as I walk away from you , you could well be wearing what I was eating too!
  4. Have you heard of ~ insert latest diet trend here ~ you should try it. Do you know what, most likely I have heard of the latest trend, fad diet. No doubt in the past I will also have already tried it. Fad diets are the absolute worst for people to fall into. Cabbage soup, grapefruit, Lighterlife, Atkins ~ tried them all and they don’t last, the weight drops and then you pile it all back on. I think Slimming World and Weight Watchers have their place but for me the only way that works and keeps the weight off is simple calorie counting and not banning any foods. I have found out through experience I am not a class, group diet person ~ I’m just too anti~social for them and find myself itching to poke out folks eyes who lose tonnes of weight week on week! Slow and steady is the route for me and is supported by my GP, half a pound a week every week means I will lose and keep the weight off as my diet is a lifestyle choice and sustainable. My body is fighting itself constantly as it is and so I need to be kind to it and take care of it ~ not shocking it with starvation or faddy diets.
  5. If you just set your mind to it you could be thin. Oh yes, in my youth I could drop pounds easily, no worries. Now though with menopause, medication and ill health putting up hurdles in every direction weight loss is easier said than done. I wish it were that easy, honestly I do ~ but if you say that to me you will get a stony glare and my back as I walk away.
  6. Have you tried exercising? My gym has this great special. I loathe gyms, horrible smelly sweaty places. My gym memberships in the past have resulted in my membership card arriving, being pinned on my notice board and never leaving it. I find gyms soulless places and not for me ~ I would rather be out in the fresh air walking and looking around me. Those days though are now behind me,  I always harbour a small hope that one day in the future my health will improve and I can once again take up my long walks ~ until then small excursions with my trusty crutches will have to suffice.
  7. You’ll never find a partner unless you lost that weight. Thankfully I haven’t had this one as I have known Dave almost my entire life and married for over half of it. We both have fluctuated with our weight and so have empathy towards each other. Love is unconditional, it looks at the soul not the body. If I was single then I would only contemplate a relationship with someone who didn’t judge on appearance, instead one who looked at me as a whole and who “saw” me.
  8. At least you have boobs and a butt. Yup, I do have great boobs and a fabulous butt ~ only wish I could twerk to really shake my booty! If you try to give me a backhanded compliment I will deliberately take it as a compliment and agree wholeheartedly and not give you the satisfaction of seeing me doubt myself and who I am.
  9. Don’t you want to feel healthy? Oh boy, yes ~ yes I would LOVE to feel healthy. Sadly no diet can do that. Perhaps in time research into my health conditions will bring forth some super dooper treatments or dare I wish it a cure! What food I consume has no correlation to my health issues and so if you say this to me you will need to take a seat whilst I walk you through my conditions in depth so in future you will never think of saying that to anyone again. You never know what another person  is dealing with ~ so many of us suffer from invisible illnesses that can cause weight gain. Medications we take and lack of mobility are hugely responsible for our issues with weight and it’s damn hard to lose weight, no matter how much will power you have because of being unable to exercise and taking regular medications to treat symptoms and pain which are known to cause weight gain too.
  10. I couldn’t eat that, it would go straight to my hips. What you do or don’t eat is no concern of mine ~ if you want to eat something then do it, if you don’t then quit complaining. Don’t try to make me feel bad about eating something by telling me that if you did it would cause you to gain weight ~ I know what you are underhandedly trying to say and will steadfastly ignore you and take an extra large bit in front of you and insert a few “mmmmm delicious” and smacking of lips to underline the point.

So, I suppose in conclusion ~ don’t be fatist, don’t make assumptions about other people and if you can’t say anything nice then don’t say anything at all! To all of you struggling with your weight please try to embrace yourself and where you are right now ~ life is too damn hard as it is without being hard on ourselves too.

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x~X~x

 

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