Myalgic Encephalomyelitis

In the middle of the night

I have started and ended my blog with songs which have lyrics I can relate to ~ I am sure many of you with chronic illness may find something within them that calls to you too.

Just Hold On
Louis Tomlinson, Steve Aoki
Wish that you could build a time machine
So you could see
The things no one can see
Feels like you’re standing on the edge
Looking at the stars
And wishing you were them
‪What do you do when a chapter ends?‬
‪Do you close the book and never read it again?‬
‪Where do you go when your story’s done?‬
‪You can be who you were or who you’ll become
Oh-oh-oh, oh-oh-oh oh, if it all goes wrong
Oh-oh-oh, oh-oh-oh oh, darling just hold on
‪The sun goes down and it comes back up
‪The world it turns no matter what
Oh-oh-oh, oh-oh-oh oh, if it all goes wrong
Darling, just hold on
Oh-oh-oh, oh-oh-oh oh, darling, just hold on
Oh-oh-oh, oh-oh-oh oh
It’s not over ’til it’s all been said
‪It’s not over ’til your dying breath
‪So what do you want them to say when you’re gone?‬
‪That you gave up or that you kept going on?‬
‪What do you do when a chapter ends?‬
‪Do you close the book and never read it again?‬
‪Where do you go when your story’s done?‬
‪You can be who you were or who you’ll become
Oh-oh-oh, oh-oh-oh oh, ‪if it all goes wrong
Oh-oh-oh, oh-oh-oh oh, darling just hold on
‪The sun goes down and it comes back up
‪The world it turns no matter what
Oh-oh-oh, oh-oh-oh oh, if it all goes wrong
Darling, just hold on
Oh-oh-oh, oh-oh-oh oh
Darling, just hold on
Oh-oh-oh, oh-oh-oh oh
If it all goes wrong
Oh-oh-oh, oh-oh-oh oh
Darling just hold on
Oh-oh-oh, oh-oh-oh oh
If it all goes wrong, darling just hold on

Songwriters: Steve Aoki / Nolan Lambroza / Eric Rosse / Sasha Yatchenko / Louis William Tomlinson  Just Hold On lyrics © Warner/Chappell Music, Inc

In the middle of the night ~ the quiet hours, unable to sleep, I lie awake listening to the gentle snoring of my husband and dogs. They shuffle and snuffle, snore and stretch in their slumber whilst I try to find sleep.

Ideas come to me, quotes and song lyrics, answers to questions which had previously been elusive making me mentally face palm because they were so obvious.

I want to get up and write everything down so that the ideas and information aren’t forgotten by morning. I can’t though because it would disturb my Hairy Boys (dogs & husband), which would be selfish of me. Instead I try to cordon off my thoughts into a part of my brain with a few active memory cells. Ambitious ~ I know!

It’s now morning 5.55am to be precise when I tried to slink out of the bedroom quietly, which was a fail. Both dogs jumped out of bed to follow me and hubby sleepily asked if I was okay. Reassured all was fine hubby returned to his slumber. The dogs came with me, went outside to toilet, the dogs ~ not me, then had their breakfast. Taylor returned upstairs to Dave and Loki stayed with me and curled up to sleep on my knee.

Coffee in hand I can now process the thoughts that had been churning in my head throughout the night, so quickly they were tumbling into one another. However, as often occurs with these night time brain explosions, some reality checks were thrown into focus.

1. I am not doing all I can to optimise my health.

2. I lack in willpower thus flop on good intentions.

3. My health is declining.

4. I need to take action now if I aim to live and not sabotage my health.

These thoughts, I think, were triggered by my physical discomfort and concerns about my health. I think as I see 50 on the horizon, that I am more aware of my mortality.

Currently I am in limbo, questions are raised as to my diagnosis because I had vasculitis on my arms which required a month of steroid therapy to damp it down. A couple of weeks after steroid therapy finished the rash returned, on my cheeks and arms. I returned to my GP and am now on long term low dose steroid therapy until my urgent referral to see rheumatologist comes through. As the rash, which only abates when on steroids, is combined with having blisters on the roof of my mouth, intermittent kidney pain, digestive issues swollen sore ankles, acid reflux, poor cognitive function, poor mobility and pain over entire body, my diagnoses thus far are in question.

So far it was/is thought I have Myalgic Encephalomyelitis and Fibromyalgia, along with my Hypermobility Ehlers~Danlos Syndrome. Now questions being raised are do I have these conditions plus possible Lupus OR was I misdiagnosed and do I have instead “just” Lupus? This is the reason for the urgent rheumatology referral as my GP feels long term steroid therapy to keep the rash away needs looking into and need to find the cause to then decide on the appropriate long term treatment.

I think you will agree, I need to take action to improve what I can control to benefit my health and sustain it.

With my mortality on my mind I have constructed a plan of action which commences today.

• Go sober and maintain it this time. Since my last attempt I have gone off spirits but enjoy wine. Alcohol makes my kidneys ache and so is that glass of wine worth the risk to my health?

• Follow a vegetarian diet, avoiding pre~packed and processed foods whenever possible. Having 2 vegan daughters and a daughter following a pescatarian dairy free diet should help me to avoid meat. I enjoy many vegan meals and so will flitter between the vegan and vegetarian menu.

• Maintain observations of step count and corresponding heart rates.

• Stretch limbs daily, and when possible try low impact gentle exercise.

• Brain train, do simple brain training exercise to try to improve cognitive function when possible.

• Do something I enjoy everyday as a reward.

• Take regular rests throughout the day and try to fit in one meditation session using the Headspace app during one of the rest times.

• Use the Nomo app to track and receive support for sobriety.

• Use the LoseIt app to track foods, calories, nutritional information and eating pattern.

• Be assertive with doctors when discussing health matters, question and quiz them for information, treatments and options.

• Keep a photographic and written symptom diary to take to rheumatologist, as advised by GP, when my urgent referral appointment comes through.

• Keep a wary eye on my black dog ~ the recently increased anti depressant dosage is currently keeping me stable, but to be aware of my mental health so it doesn’t sabotage my attempts to take control.

I am fortunate to have a supportive family and know that my daughters are concerned about not only my health but Dave’s to. They want parents who are present not only now but in the future. To not be tempting fate and putting our lives at risk. This is a huge incentive to make changes, now, today and commit fully to them.

Some people are luckier than others in the health lottery, everything is relative, it’s not a competition to see who is the sickest. It’s how you move forward that matters, to take control of what you can and make peace with what you can’t.

Today is the day I make changes, adhere to my commitment and celebrate what I have. Life is a gift I don’t want to squander.

Bring On the Rain
Jo Dee Messina
Another day has almost come and gone
Can’t imagine what else could go wrong
Sometimes I’d like to hide away somewhere and lock the door
A single battle lost but not the war
‘Cause tomorrow’s another day
And I’m thirsty anyway
So bring on the rain
It’s almost like the hard times circle ’round
A couple drops and they all start coming down
Yeah, I might feel defeated,
And I might hang my head
I might be barely breathing, but I’m not dead
Tomorrow’s another day
And I’m thirsty anyway
So bring on the rain
No I’m not gonna let it get me down
I’m not gonna cry
And I’m not gonna lose any sleep tonight
‘Cause tomorrow’s another day
And I’m not afraid
So bring on the rain
Tomorrow’s another day
And I’m thirsty anyway
So bring on the rain
Bring on
Bring on the rain
No I’m not gonna let it get me down
I’m not gonna cry
So bring on the rain
Bring on
Bring on the rain
Bring on the rain
Bring on the rain
Bring on the rain

Songwriters: Billy Montana / Helen Darling
Bring On the Rain lyrics © Warner/Chappell Music, Inc


The Curious Case of Mast Cell Activation.


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.


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.


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..

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!


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.


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.

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.



I love this song and the lyrics call to me ~ especially the chorus..

“This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
A lot of fight left in me
Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion”

Fight! We all have battles we face in our daily lives but some are more than others. It’s a fight against the things that get you down, be it other people, your circumstances, your physical or mental health, relationships etc. Yet, saying that I don’t mean to place one persons battle above another because everything is relative. One persons seemingly small battle is to them the same as another persons perceived larger one.

Today, right now I am fighting. I feel monumentally overwhelmed by life in general. So many factors are beyond my control and it frustrates the hell out of me.

I am beyond exhausted, tired to my bones, I feel ancient. My cognitive function worries me, I know docs have tried to reassure me but I think anyone who struggles in this way will always have that fear of potential dementia. The other day I was trying to find the word for kitchen towel and after brief charade to my husband he twigged and filled in the blank for me. It sounds silly but when these episodes add up, multiplied by poor memory, difficulty following conversations and using the wrong words in sentences and not even realising ~ it’s scary!

Then you have the poor energy issue which means that my house looks like a bomb site and the floor is filthy because I haven’t hoovered or mop for over 4 weeks now ~ you can barely see what colour the stair carpet is for all the dog hair on it. Adding insult to injury I had to wash my feet before bed because of walking barefoot on the laminate floor and the resulting dirt on my feet.

Thank goodness for dishwashers, microwaves, tumble driers etc though ~ we don’t iron in this house, clothes get dried and you have the choice to wear it creased or not at all. We utilise any energy saving devise, meals, options possible to try and help us in our daily lives.

The thing that really bothers me though is how unpredictable my health is and the impact that has on everything I do. I also worry about my family, they all have invisible chronic illness too ~ it’s a constant fight and trying to help each other stay afloat and cling on for better days, which is so hard, not just for me but for all of us.

Having to constantly explain to others and gently remind them what we face is also exceptionally hard. No matter who they are it is always a struggle for them to equate an outwardly healthy looking person as being sick.

The thing is ~ we put on a front whenever we see anyone outside of our small family tribe. This isn’t necessarily for your benefit but more for our own, it’s our own silly pride that makes us create the illusion that we are okay when we aren’t. We want to feel “normal” and fit in, even if it’s just for a little while.

It’s not my place to share my incredible families individual battles here, but each of them are working hard this week, as they do every week, to appear okay and putting on a brave front. My girls are utilising every ounce of energy they have whilst facing the  winter bugs and viruses that are doing the rounds. This impacts on their health more than other folks because of weakened immune systems, they fall harder and longer with each bug.

My husband is being an absolute star in running us around, shopping, cooking, stacking dishwasher, driving here and there whilst exhausted himself.

This week is a particularly full on one, for numerous reasons. We have a special family members 80th birthday to attend on Saturday. It is going to be really tough to muster up energy to go but we will because we rarely get to see our extended family in the flesh. They live a two and a half hour drive away and the party is afternoon into evening but not finishing late. We will be going just for the party then returning home ~ a lovely friend of one of our daughters has offered to dog sit for us due to the length of time we will be away, which is a huge relief.

Simple get togethers like this are a given for many healthy folk, for us we have to plan, rest, make contingency plans and hope against hope that on the actual day we will all be well enough to go. Our track record isn’t great, usually only two perhaps three out of the five of us manage to go.

I’m just majorly pissed off today, being tired and emotional does that. I get weepy and sad then angry as hell. THEN, I start to feel awful and guilty as I imagine all the other people in situations worse than mine. It is tsunami of emotions, each taking turns to take the helm and bash me relentlessly, screaming in my brain at me.

It’s no wonder people living with chronic illness also suffer from depression, anxiety and stress. Trying to do so much and struggling each and every day with life. Having invisible chronic illness is harder still, that’s because whilst you face your own internal battles you are having to try and justify to others why you can’t meet them, speak to them, be like them.

Even when folk say they understand, sometimes you wonder if they truly do ~ especially when the media still stirs up so many untruths and unhelpful advice to “get better”. Sadly, right now there is no cure, no real treatment ~ only treatments for symptoms as and when you need help with them, to make you more comfortable.

Getting up each morning is like wading through treacle, it’s such a monumental effort to get up and go downstairs. Then to have to wash and dress is another massive drain to the battery. Although, from November the first at least I won’t have to worry about washing or styling my hair because I won’t have any after my head shave fundraiser.

So today I am writing this blog to remind myself to not give up, to continue to fight. I’m human and so it’s okay to cry, to scream, to feel self~pity and want answers, so many “whys” in my head with no resolution or answers available.

I will look for the bright side of every dark moment and if there isn’t one to hunker down and ride it out, knowing that at some point the light will reappear.

To my friends ~ I apologise if I am distant and not interacting with you. Just daily routine chores are taking every ounce of energy I have. Reading posts/threads on social media is an issue right now for me. I read them, then re~read them but don’t fully comprehend what I am reading, so have to read a third time. Then I want to reply, to comment to let you know I am there for you and support you but the words don’t flow. The sentences sound rambling and disjointed ~ so instead of hitting “post” I hit “delete” and then “like” or “love” your post instead. Know that I am around but lurking on the side~lines, sending love your way and hoping you understand.

This blog post has been edited and re~edited umpteen times ~ however I apologise if some of it sounds disjointed or rambling, this is as good as it gets right now.

I’m retreating off now ~ but felt it necessary to share this with you and hope you understand why I am distant right now.

My next blog will most likely be the one showing you my newly bald head ~ which will be in 9 days time.

If you are struggling right now I hope you find better days ahead very soon. Whatever happens we must keep on fighting ~ somehow, someday I am sure life will get better. Always hold onto hope and don’t let it wriggle out of your grasp.

I leave you with this song, quite simply because I love Freddie’s voice and the lyrics speak to me, I hope you enjoy it too..

“These Are The Days Of Our Lives”

Sometimes I get to feelin’
I was back in the old days – long ago
When we were kids, when we were young
Things seemed so perfect – you know?
The days were endless, we were crazy – we were young
The sun was always shinin’ – we just lived for fun
Sometimes it seems like lately – I just don’t know
The rest of my life’s been – just a show.
Those were the days of our lives
The bad things in life were so few
Those days are all gone now but one thing is true –
When I look and I find I still love you.
You can’t turn back the clock, you can’t turn back the tide
Ain’t that a shame?
I’d like to go back one time on a roller coaster ride
When life was just a game
No use sitting and thinkin’ on what you did
When you can lay back and enjoy it through your kids
Sometimes it seems like lately I just don’t know
Better sit back and go – with the flow
Cos these are the days of our lives
They’ve flown in the swiftness of time
These days are all gone now but some things remain
When I look and I find – no change
Those were the days of our lives yeah
The bad things in life were so few
Those days are all gone now but one thing’s still true
When I look and I find, I still love you,
I still love you.”



Auditory Hallucinations

Last night and this morning have been highly stressful. I spent the night waking up to hearing conversations that apparently weren’t happening.


I also kept falling back into the same dream, going to the point I left when waking ~ I don’t remember the dream but do remember it unsettled me.

Throughout the night I woke up several times because of urgent whispering in my ear, only no one was there! Each time I got up to the loo to make sure I was awake and to hopefully “shake it off” before getting back into bed and to sleep.

I also “heard” my middle daughter having conversations with people between the hours of midnight and 4.30am, I know very specific times but I looked at the clock every time I woke.

Finally this morning I woke up to hearing my husband having a whispered conversation with my eldest daughter ~ only he had just got up, wasn’t talking to anyone and eldest child is at her own place in town!

So I am feeling a little freaked today ~ and tired!

The events of last night and this morning had me searching for reasons why I had this experience. I do remember my middle daughter having auditory and visual hallucinations when first diagnosed with ME post meningitis.

I think the doctor at the time explained the reason for it as her brain being tired and so misfiring signals ~ or something like that.

Now I am up ~ in my pjs & dressing gown whilst caffeinating to ensure I am really awake, I am having a google to see why this is occurring. It’s worrying enough having cognitive issues with speech and memory without this on top!

16Now I have intermittent tinnitus ~ but that just is weird ringing and noises in the ear, it comes and goes thankfully and is rarely continuous for a long period of time. The auditory hallucinations though, these are a new occurrence and one that has really freaked me out because the whispering conversations sounded so real.

So I googled..

What Are Auditory Hallucinations?
Auditory hallucinations are false perceptions of hearing sounds, like voices, music, etc.,without any real sensory stimuli. Auditory hallucinations have been reported in those suffering from epilepsy, brain tumors, migraines, dementia, Alzheimer’s disease, Lewy body dementia, bipolar disorder, post-traumatic stress disorder, and Parkinson’s disease. These hallucinations have also been known to be induced by drugs, such as cocaine and amphetamines.
Perhaps most surprisingly, auditory hallucinations have been reported in approximately 15% of people with no mental or physical health problems whatsoever. The most common condition associated with auditory hallucinations, however, is schizophrenia, with a reported 70% of schizophrenic patients experiencing them.” 

The same article goes on to say that hearing auditory hallucinations is usually caused by imbalances of chemicals in the brain, most notably Dopamine. Another cause could be due to the Thalamus ~ this is because the thalamus sends signals from our ears to our auditory part of the brain which then interprets what sounds are being heard. Finally, the article says it could be to do with abnormal activity in the right hemisphere of our brain.. If the thalamus is playing up then auditory hallucinations could follow.

Interestingly, on googling Dopamine for patients with Fibro & ME this came up, dopamine is a neurotransmitter and people with Fibro and ME tend to have low dopamine levels which can result in a number of symptoms and conditions.

I looked up Thalamus issues relating to ME and Fibro next and it came up with articles informing me that I’m not alone in this, the article; Sensory Overload: Study Suggests Brains in Fibromyalgia Are Being Pummeled With Too Much Information was very interesting. This explains my cognitive issues as well as the auditory hallucinations ~ I know my “dementia” like cognitive issues become much worse when I am suffering from Post Exertional Malaise (PEM), which is often as I am currently struggling to pace effectively so seem to permanently be in a “crash”.

The article says that people with ME and Fibro become easily over stimulated by outside factors and so experience sensory overload. Usually, for healthy folk, the body fires up the sensory gate which filters out what is important and what isn’t. For folk like me with ME and Fibro, this sensory gate is often broken, it is thought that the area which is broken is in the part of the brain stem known as the “reptilian brain”. It is the area of the brain necessary for survival but doesn’t come with high cognitive functions.  Usually it protects the brain from over stimulation but not when broken for us folk with ME and Fibro.

On further googling I came across this article, which says that anxiety can cause simple and complex hallucinations too.

This has made me feel much better this morning, I’m not freaking out so much now that I know there are reasons for it ~ the most likely cause is my poor old brain is feeling overwhelmed and so misfiring with messages received making me think I am hearing things that quite simply aren’t there.

I know I haven’t gone into any great detail here and I won’t because I don’t want to stress my brain/body out any further. However, after my wee google session I now feel reassured that it’s nothing to be concerned about. Just as numerous doctors and consultants previously reassured me about my “dementia” symptoms, that I don’t have it but that my body is so exhausted due to my whammy of chronic illnesses that it misfires and causes my cognitive functions to nosedive. I am now looking at the auditory hallucinations as an extension of that and realise that the severe lack of pacing over the past few weeks must be the contributing factor in it all.

Thankfully, on Friday I will be disappearing off to my “happy place” ~ away from stimulation and into the arms of the coast, sea breezes, salt, sand and sea. By the end of next week I hope to have returned to some semblance of normality ~ here’s hoping!

As with anything though, if you experience anything out of the norm with your health/body I would always advocate that you get it checked out.

My motto is;

If in doubt19x~X~x


What do you do?


What do you do when something beyond your control affects your day, your week, your year, your life.

I bought a hoodie, one of two that I love, from the talented Stacy Hart aka Mama Chill. Both were from her “running on empty” range, which are extremely appropriate for anyone with a chronic illness which affects energy levels. If you don’t know Stacy then please head on over to her blog because she’s one sassy, incredible fighter and someone I respect very much.

Here’s an old pic of me wearing the black one I have (I have another in grey with a different graphic on the front ~ it’s a skeleton running with the words “running on empty” alongside it). Next time I wear them I will have to take photos for you!


I know that if you follow this blog you are aware that I have a number of chronic invisible illnesses which affect my cognitive function as well as my immune system, energy levels, mobility, gut mobility and cause me pain in my joints and muscles (among a myriad of other symptoms). If you are here for the first time I’ll list them now with the links for further information. Myalgic Encephalomyelitis, Hypermobility Ehlers~Danlos Syndrome, Fibromyalgia, Diverticulitis, Depression, longstanding since my late teens and lastly pesky kidneys, stage 3 kidney disease that currently only requires annual blood tests to monitor.

So now I have that out of the way, I know I’m greedy hogging all these conditions instead of sharing them around, you will understand why often I have to adapt to circumstances beyond my control.

Referring back to Mama Chill, she is quite the wordsmith and wrote a poem about M.E which, to be honest, could be also written about my other conditions too ~ especially the Fibro and HEDS..

d87d7b3777dab11a969faf1f5f35b9ba--fatigue-syndrome-fibromyalgiaIt’s exceptionally frustrating to not be able to plan to do things ahead and know 100% that you will be able to make it. I do plan ahead, try to take in all considerations, make contingency plans, but even then I can’t guarantee that on the day, despite all preparations, I will be able to do it.

So, what do you do? Is my question, to try to live a life to the fullest whilst also managing your physical and mental health to the best of your ability.

One of the girls doctors came up with a brilliant analogy, which I prefer to The Spoon Theory written by Christine Miserandino. Although the spoon theory is great, for me, the car analogy seems easier for me to understand, clearer I suppose.

Imagine your body is a car. Not a bright shiny new one but a real old banger, the exhaust is hanging low and smoking, the speedo is broken, it’s not economical and is covered in rust. It’s old, its rough around the edges, not a great beauty to be honest ~ but it drives, it tries, it may need jump starting now and then, the battery becomes flat easily so you keep a charger in the boot, along with the jump leads, spare tyre, fuel caddy and the portable tyre air compressor which plugs into the cigarette lighter. Knowing its age and potential for breaking down you also keep a blanket, bar of chocolate (supersized), warm coat, warning triangle for the road as the hazard lights don’t work and a portable mobile phone charger for that AA call ~ your poor car is too old to have built in usb chargers and you daren’t overwork the poor cigarette lighter in case you need it to plug in the tyre air compressor.

Our bodies with chronic illness are like the old banger ~ our gas tank may have a few corroded holes in it too, so no matter how much fuel you put in it, it continues to trickle away meaning you don’t get as far as you would like on it and need to take frequent stops to top up.

Like the old car, we can prepare as much as we can to deal with any issues but can’t always foresee a major break down, when the tow truck has to be called in and major repairs carried out.

We love our old car, it’s weathered many storms despite all adversity and we can’t afford to trade it in for a new model anyway.  Instead we scour the papers and news outlets for news that fixes have been found for our model of car, that we can patch it up and the garage will work it’s magic until it is like new, highly economical on fuel, exhaust is secured and no longer smoking and we know we can rely on it come hail or snow.

We are at the stage with my illnesses where we are still scouring the news, no fixes have been found ~ although many attempts and trials have been made. We have to be patient and sit it out, hoping that a mechanic somewhere will have a moment of genius and figure it all out.

That analogy makes more sense to me than spoons ~ which perhaps is just because my brain can see the picture more clearly that way.

So, what do I do? I wait, I hope and I do whatever I can to help myself feel better, do better, plan better. I don’t always get it right. I often run out of fuel halfway to my destination and spend more time than I would like on the ramp in the garage with mechanics scratching their heads before patching me up and sending me on my way.

Life isn’t bad though, it could be far worse. Humour is a factor in how I can deal with the cards life has dealt. Plus my dysfunctionally functional family around me keep things interesting and none of us get to keep the “I am considerably more poorly than you” t~shirt.

I wait for medical breakthrough.

I wait for awareness to break through to the masses.

I wait for compassion and understanding from others, who as yet don’t understand the limitations these illnesses bring.

I wait for health care professionals to all be on the same page and following current protocols instead of those initiated by dinosaurs from the past.

“One day” I tell myself “one day we will find a way around these illnesses and reclaim the life I want for myself and the others who are suffering too.”

Hope must be kept alive, yes you can chunter and swear until the air turns blue to vent, to blow off steam ~ then re-centre and continue forward.

Remember ~ there is life in the old banger yet!




Crash Bang Wallop & WTF?

This morning I woke after a night spent tossing and turning in extreme discomfort. If pain were a person then he is walking inside my body wearing hobnailed boots and stomping on every joint, every bone, making them feel tender to move or touch. Then to turn it up a notch it feels as if fire ants have been released into my veins, making my skin feel as if it’s been scalded.

I wonder to myself whether my previous blog about progress tempted fate. I am now in what is known as a “crash” or “relapse”. My body is making it difficult for me to do anything at all ~ I try to distract myself from the signals firing off from my pain receptors. Tapping my hand to try and distract my brain and ignore the pain signals helps a little but then I tire, stop and it hits me again. The waves ebbing and flowing, crashing down on me in varying levels of violence.

I am downstairs, not in bed because I can keep an eye on the dogs and I feel less of an invalid being here. I have access to a downstairs loo, the kettle, the garden and the internet ~ the sofa and footstool are pretty comfy and my slanket is cosy and warm.

22016167_10155734584339555_1765706235_nI am writing this blog in dribs and drabs from the comfort of my sofa ~ having the option to dictate is a huge help but I have to manually correct the typo’s ~ it would appear I need to learn to enunciate more clearly.

I’m resting, taking the tablets, applying heat (which is soothing for me as opposed to cold), applying topical pain relieving gels, anything I can get my hands on to ease the pain, whilst looking for distractions for my mind.

I have no idea which illness has triggered this response, I am thinking most likely the fibromyalgia, but could also be a combination of all three, ME, Fibro and HEDS. So I am burying myself away for a few days, hibernating until the pain abates. Everything is on  hold ~ no photography for a second week in a row, it’s fair to say I’m feeling a little ticked off.

My mood is up and down, it’s hard to stay focused and positive when you are not able to control your own body, that it lets you down without any warning. I am feeling angry, sad and frustrated at life, I’m seriously pissed off and have so many whys that I know cannot be answered. I suppose it’s just life, I am lucky things aren’t worse but sad that they are what they are.

My black dog is waiting to be released, he knows I am weak and is ready to take advantage ~ I am trying my best to control him. To remember the lessons given to my by my therapist and not to allow him to regain control.

It’s hard! He’s howling for release, ready to jump at any given moment.Black Dog FlamesMy weapon of choice is laughter ~ I am fortunate that my family follow the same path, when times get tough, we go a little insane and let the laughter out, it may be a little scary and manic but it provides a release.

So talking about laughter I share with you my “what the fuck?” moment from this morning.

I came downstairs for a warm drink, tablets and to relocate from my bed. Looking across at my dining room table from my vantage point by the boiling kettle I notice something decidedly odd about my plant.

To fill you in this plant was a birthday gift from my dad which I received in May. It came in a pot and only had one shoot ~ it was a cutting he had given me from a plant he had at home. What it is we have no idea, the general consensus is that is its some kind of lily.

I was told by dad that it was a patio plant and to keep it outside ~ one day outside and it was decidedly worse for wear so I decided to bring it inside. From it’s position from the dining room table it has plenty of indirect light and is protected from the battering wind.

Since being on my table it has grown and we now have 3 leaves. It would appear that overnight something strange has also happened..

Now, how on earth? The mushroom next to the stalk of my plant is actually coming from the stalk!

ALSO, to top it off hundreds of tiny weeny flies are coming out of the soil, which looks alive with them and running around over the table! Thankfully my hubby is ex~pest control and had some bug spray to curb the wee flies from expanding their ranks whilst also not being toxic to my lily ~ or is it Alien Plant?

If you are of the green fingered variety I would love to know what this plant is and also how on earth it birthed mushrooms and teenyweeny flies!

Writing this blog has helped pass the morning for me, now it’s time for a nap ~ and hopefully some respite from the pain and discomfort.

Hope your are having a good day, if you are sending you a crisp high five ~ if not sending love and sympathy.


Progress//Small Steps

I’m not sure whether to share yet or not, feeling that progress is slowly being made and am quietly optimistic that more will occur over the following months.

Having a piece of kit on my wrist that monitors my heart rate, steps and sleep pattern is hugely beneficial in seeing what triggers my body.

I have found that when I am quietly sitting my heart rate is that of someone exercising. Getting up, showering, walking ~ spending any energy really, causes my heart rate to increase further.

Also, with sleep I have found that I have very little deep sleep and mostly spend the night in a state of light sleep.

Having this information available means that I can be careful in how I plan my time and pace.

Historically I’m not great at pacing, when I have energy all I want to do is get things done and end up exhausted and regretting my expenditure of “spoons” when lying in bed and unable to do anything.

Taking into consideration of my on/off ability to pace I am still happy to report that progress is being made.

I also have become fully sober, no more forays in the alcohol department. My body can no longer tolerate any kind of alcoholic beverage, which means from now on I will be getting jiggy with the soft ones instead.

First off, I finally feel that my balance of medications is helping to keep the pain within the range of cope-able ~ not gone but at least not severe enough to reduce me to tears anymore.

I currently take a mix of prescription and over the counter medications of:~


Gabapentin Capsules ~ 300mg three times a day For pain relief; can increase dosage in the future if needed

Vitamin D capsule ~ 4000iu  As I have below normal vitamin D level

L~Carnitine ~ 4 Capsules Daily. As advised by my Fibro group, it helps with cognitive function and energy levels.

L~ Glutamine 500mg ~ 3 Capsules Daily To assist my gut and improve autoimmune system.

Amitriptyline 75mg Daily ~ for Depression, controversial among my doctors ~ I have tried all the other anti~depressants and none of them work for me, Prozac reacted very badly and I collapsed. Amitriptyline was prescribed for me for my bouts of post~natal depression after my daughters births and it was hugely effective. When I become depressed I become manic and need a sedative antidepressant to calm me down. Apparently doctors now don’t prescribe this medication for depression as it can cause a high rate of suicidal thoughts. For me however it is calming and helps me keep my black dog under control. The doctors have allowed me to take it on repeat so long as I promise to contact them the instant I have any detrimental thoughts towards my life.

Laxido 2~3 Sachets Daily I take it for my Diverticulitis, to keep things moving and not to get caught up in the pouches.

On top of taking the above medication I have found that wearing compression socks is really helping my poor swollen ankles and when wearing them my swelling reduces by half ~ which is fabulous! They are really comfy to wear and are breathable ~ so no smelly feet.

I have changed my diet ~ instead of eating and picking bad foods during the day because of not having the energy to cook I have a Huel Shake. Its made from oats, so no soy tummy upset from it and it tastes lovely ~ if you like oats that is. I tend to prefer just the vanilla version without flavour boosts, but if I do fancy a boost it’s chocolate every time.

Then at the end of the day I have my dinner with Dave and he usually helps with the preparation and cooking. From just this small change I have gone down a jeans size to a standard size 16, which is brilliant, I refuse to weigh myself as it makes me too depressed, therefore I judge my weight loss by how my clothes fit.


My final change is monitoring my activity and trying to control how much I do. I still go overboard and do far too much but at least it’s a means to observe where I am going wrong and trying to rein it in. My step count is indicative of my ignoring my body and pushing myself. BUT I am finding I am little by little managing more steps than I ever dreamt possible ~


The days I go over 4000 steps I really know about it and it’s not easy to get up and get going the next day ~ but I push myself and I am doing it. I am mindful that pushing could be dangerous for my ME but it’s beneficial for my Fibro and HEDS. It is juggling what to do for the best.

I am planning a retreat to the caravan in October, to rest and recuperate and go over all my data to see what level of activity suits my body, listening to how it responds, taking into account pain levels, energy, post exertion malaise and heart rate.

I know every time I get up and move about my heart rate goes up ~ I can feel it in my neck as it pulsates to my heart beat. I know that pain and fatigue hit days after going at 4000 steps ~ but sometimes I can’t avoid having to do those steps as life and commitments don’t go away.

Hopefully the progress will continue slowly but steadily. I hope the weight continues to gradually drop, which will put less pressure on my joints and specifically my ankles.

I am incredibly chuffed with the smart crutches, they give me the ability to walk further than I could before as they help me put less pressure through my ankles and instead of the pressure from the crutches going through my poor weak wrists it goes along my forearm instead. I still get sore shoulders, neck, wrists, hips and ankles afterwards but having the freedom to step out further than before without having to resort to a wheelchair (which would have to be electric as I have no~one free to push me), is wonderful.

I also cannot stress enough the wonders of getting a blue badge ~ and would encourage anyone with an illness which reduces ability and energy to apply for one.I also have stickers on my car saying not all disabilities are visible because I am so sick of people telling me off for parking in disabled bays.

Unfortunately, so far not much improvement with cognitive issues ~ I am still struggling to comprehend information. The girls and Dave sometimes become frustrated with me, not unkindly, when it takes a while for the penny to drop. It can be annoying not only for them but for me, as I struggle to make sense of things.

My photography course is fun and rewarding but I have to read the lessons in small chunks and go over it repeatedly for it to sink in. I struggle to find words and keep up with conversations but mostly when reading conversations on facebook I get overwhelmed and although I want to respond I often don’t because I find it so very hard to put words together to express my thoughts. To be a supportive and helpful friend becomes a hurdle, I always hold my friends close in my thoughts and hope that they know that I am there for them in spirit but not always in mind ~ I have no idea where that wanders off to!

I can only explain my mental state as that of onset dementia, which is why we approached the doctors in the first place 2 years ago. It is a huge issue for me, word finding, correct word usage and following conversations is difficult. I sometimes think half a sentence and speak the other half out loud and not realise, then wander why I’m not understood.

I think not being able to control my brain, to feel so foggy minded and forgetful is the worst symptom for me, more so than pain and fatigue. I feel as if I am losing part of myself, my memories are fading, events of the past are often totally forgotten. The feeling of having no control and that I am losing my mind.

So, shhh aside from my brain *touches wood* lets hope that things continue positively and I apologise if I am a little vague or not as communicative as I would like to be towards you. Fingers crossed that progress is made in the cognitive department soon too, failing that, hoping that my brain power plateaus and further deterioration ceases.



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