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.
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)
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.
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..
It’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!
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.
It is fabulous to see the sun shining and have all my windows and doors open. The aroma of freshly cut grass and blossoms wafting in with the wonderful background music of bird song serenading me. Our lawn is looking pretty as covered in buttercups and small flowers.
The sunny weather brings with it some soothing heat for my painful joints all be it from the shade of a patio umbrella. taking great care to ensure I remain hydrated and out of direct sunshine. Too much heat can trigger exacerbation of symptoms so I’m learning to recognize when to call it a day and move inside. Once a sun worshipper I am now a sun dodger and shade seeker. The coast a friend and favorite place of mine, cooling toe dipping in the sea with refreshing sea breezes. Topped of with picnics beneath the old faithful angled parasol, well used, taped up, frequently repaired yet still functioning ~ providing welcome shade. I just wish I lived on the coast, instead we visit as frequently as we can for mid week breaks and long weekends.
It would seem as the years roll on I am collecting labels of illnesses allegedly explaining my symptoms. For years I’ve had IBS, swinging from needing laxido 3 times a day to popping Imodium ~ haemmorhoids and diverticulitis resulted from this & so now have to be careful to not cause a flare of symptoms and Gaviscon tablets and buscopan have been added to the medication required. I also have chronic depression and have been on almost every kind of antidepressant, I have discovered I am scarily allergic to Prozac and that Amitriptyline is my saviour ~ not only keeping my black dog to heel but also helping calm my hyperactive bladder and settle my insomnia.
Gradually these past few years my health has declined markedly. Resulting in diagnosis of Myalgic Encephalomyelitis (ME) beginning of 2016. Then Hypermobility Ehlers-Danlos Syndrome (HEDS) early this year (both these diagnoses by ME Clinic). Then most recently Fibromyalgia (FM) and confirmation of HEDS by Rheumatologist a few months ago. Add to that grumbling kidneys and chronic pain too.
I questioned whether it is possible to have all three of the chronic conditions ME, HEDS & FM together ~ surely it must be just one of these conditions causing my symptoms and pain? To which I was told that yes, I have all 3 and that these conditions often are found to co~exist. If any of you reading this have these conditions too I would welcome your thoughts.
The long and short of it all is that I am in pain, lacking in energy, cognitively challenged and exploring ways in which I can combat these symptoms and improve them ~ again, thoughts, tips, suggestions all welcomed.
I have found wearing supports help my ankles and wrists, but worry about becoming dependent on them and so need to find safe low impact exercises to try and strengthen them without exacerbating the pain to intolerable levels. This is a photo of my ankles first thing in the morning ~ after being elevated all night ~ with my supports during the day they don’t get more swollen, without they do. However they never go down & hurt, especially the Achilles, constantly. My rheumatologist says it’s fluid over my tendons and has not seen bulging swellings like this before. As yet I still have no solution to how to reduce swelling and pain, they could be caused by my grumbling kidneys, my EDS (as over tendons) or leaky heart valve ~ still awaiting heart scan ~ so again any tips or thoughts welcomed.
Whilst looking to see if I could find any information about all three of these conditions existing together as a multiple diagnosis I came across this article, which I found interesting, “One Gene, Many Disorders: Could One Gene Help Explain ME/CFS, FM, POTS, IBS, EDS, IBS and Others” written by Cort Johnson. In it he asks ~ “ME/CFS, FM, POTS, IBS, EDS and others often exist in a kind of swarm of interconnected illnesses. All have been maligned at one time or another because of the wide range of symptoms they produce. How could a biological disease cause so many different symptoms?”
Being diagnosed with ME/CFS, FM, IBS & HEDS I carried on reading, it says “The more researchers looked, the more they seemed to uncover a large group of syndromes which tended to flock together. Anyone who has ME/CFS or FM now has to consider whether they also might have dysautonomia, IBS, POTS, MCAS and a host of other disorders (interstitial cystitis, migraine, multiple chemical sensitivities, small fiber neuropathy).” Wow, so it is possible to have all of these together! My question is what can be done as both FM and HEDS are prescribed exercise as part of the treatment, along with pain relief ~ but with ME exercise makes the illness so much worse ~ plus there is Post Exerting Malaise (PEM) to consider with ME too!
Further on in the article it says some research had found that these conditions show genetic changes in common and therefore likely to be hereditary too. the study offers hope for sufferers with further research possibly finding ways to combat the conditions. “Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1…It’s rare that genetic effects are so clear. In fact, the genetic effects were so clear that the condition is now called hereditary-a tryptasemia. This disease is “exclusively caused” by increased copy numbers of the tryptase-producing sequence. Exactly how elevated tryptase levels are causing pain and autonomic nervous symptoms is not clear but may involve “protease-activated 2 receptor pathways” (if that’s any help – lol). The study highlights, though, that it’s not necessary to understand a disease to find a treatment for it. Knowing that elevated tryptase levels cause pain, connective tissue problems and orthostatic intolerance, even if we don’t know how, can allow researchers to develop anti-tryptase blockers that could conceivably stop these symptoms in their tracks”
I am cautiously optimistic about this news as so many “breakthroughs” come to nothing but hope this one continues to work on finding ways to combat these illnesses with treatments successful in allowing sufferers reclaiming their lives.
Until then, which I anticipate will be many years yet I am waiting for follow up appointments, further investigations and a meeting with my GP to discuss further pain relief options along with ways to work with my joint strength and swellings.
Today is a high pain day ~ distraction therapy helps, writing this blog, sharing with others helps. I hope if you have these conditions you don’t feel so isolated ~ I am here and open to communication, friendship and mutual support. Also open to discussion about options and treatments that work for you, how you self care and cope.
I will leave you with an image that made my poor postie jump ~ a tight shiny face mask on a face with hair scraped back under a bandana ~ poor bloke 😂.
To top off my day our little Loki has come in from the garden, plonked himself on me and promptly fallen asleep and he STINKS! I have no idea what he’s rolled in but when hubby gets back to help he will need bathing ~ as Loki despises baths making it a two man job. Taylor on the other hand has taken up position ~ far away from stinky, to guard and warn us of any rogue cats, squirrels or birds, I may need to dig out the ear defenders!
Hoping today is being kind to you and that the sunny weather isn’t too uncomfortable for you. ‘Til next time sending strength and love your way.
I’m not about body shaming in any form whatsoever ~ I have spent many long years learning to love the skin I’m in, warts and all. I accept and love my stretch marks on my breasts and stomach because they nurtured my children. I am embracing my white hairs, spending every morning looking for them ~ although I have to admit I am deeply disappointed I don’t have more than a sprinkling, but hope springs eternal and all that ~ one day I may wake up and find a mallen streak of white which would be awesome. I love my big bum surprisingly, it may be big but I can tense it so hard you could bounce a ball off it and wobble it so that it shakes for some time afterwards. My stomach is a great canvas to draw on, my belly button looks a bit like Golum, with a surprised mouth!
The self love comes after years of angst I’m not sure why though because as a youngster I had absolutely no issues with my body. I was young, healthy and full of energy. I exercised every day and was by no means fat ~ but in my teenage mind I was gross! It was after I married and had children that I started to gain weight. Somehow childbirth changed my body, I became allergic to most metals, leather, latex and some medications. My weight boomed and after my last daughter was born I started the yo~yo dieting cycle. I tried many many diets Lighterlife (which made my hair drop out and me very physically weak ~ although skinny), Rosemary Conley, Slimming World (numerous times), Soup Diet, 5:2 diet, Atkins Diet, Egg and Grapefruit diet and many more, each one more ridiculous than the last. All were effective in losing weight in the short term then weight gain went on a few months after stopping.
Now though I have some obstacles in my way in the form of ME, Hypermobility Syndrome, Diverticulitis, Chronic Depression and Chronic Pain. I have been guilty the past few years of comfort eating and drinking far too much alcohol on a regular basis. My medication for depression and pain relief has resulted in adding to the weight gain too. I am on paper as healthy as I can be all things considered, my blood pressure and cholesterol are within healthy limits. My doctor isn’t worried about my health as such but between my GP and ME Clinic we feel that losing weight may be beneficial in helping to reduce my pain as I wouldn’t have so much pressure from the weight bearing down on my joints.
I can’t exercise to any worthwhile degree and I get shaky if I don’t eat regularly. Plus I loathe the word “diet” it means following a set plan and cutting things out ~ if I say I can’t have something then it makes me crave it all the more ~ so a sure fire way to set myself up for failure, I’m a massive foodie to be honest so have to change my mindset.
I vowed never to weigh myself again ~ I am not defined by how many pounds I show on the scales. However, I also need a real way to see if I am on the right track with shifting some of those excess pounds and have decided to weigh myself intermittently ~ so that I can see what is working for me whilst I experiment eating differently. So this morning I weighed myself for the first time in many moons. I am not ashamed to share my weight, shit happens, life happens. So I stand now at 5 feet and 9 inches, size 16/18 in clothes and a hefty seventeen and a half stone. Not the heaviest I’ve been to be fair, after Tara was born I hit just over 19 stone. I honestly don’t mind being big ~ that isn’t a worry for me but being in pain is ~ so I need to reduce the wobble a little bit and see if it helps reduce my pain.
My plan is to cut down on everything, but not cut out anything. Less is more, have a taste not a feast kind of thing. I know I need to snack, having a little often because if I don’t I get so that I shake and get blurred vision. It’s a strange energy depletion reaction I get due to my ME, my face goes numb then tingles and I become weak and have visible tremors. So first on the list is to find healthy alternatives to keep my energy levels as high as possible ~ ideas and suggestions always welcome in the comments.
A good BMI checker, if you want to look into that kind of thing, is the Smart Body Mass Index and can be found here what it does is
“This calculator functions on the basis of the newly developed Smart Body Mass Index. The SBMI differs from the BMI in three important aspects.
Firstly, it takes age and sex into account, besides weight and height. Secondly, the SBMI is a purely comparative figure (without any physical units) on a scale of 70 points. And thirdly, the significance of the body weight for your health can easily be derived from the SBMI but not from the BMI: The weight-related health risk levels shown in green, yellow, orange and red (see the SBMI chart on the Results page), are always 10/70 SBMI points wide.
The ideal range of the SBMI is 30/70 to 39/70 or, in words, “between thirty and thirty-nine points out of seventy”.
I’m in the danger zone and classed as Obese so need to shift some pounds in order to improve my health and ultimately hopefully reduce my pain which is a nagging constant in my life at the moment. You never know, I may even be able to ditch the supports I need to wear at the moment too.
I ask if anyone reading this has a chronic illness and has successfully lost weight with reduced energy and little to no ability to exercise ~ please let me know how you coped and what you found helpful or useful along the way.
As for “exercise” my ME therapist recommends daily activities that use up my spoons, such as shopping, baking a cake, reading a chapter of a book etc. These are activities a “choose” to do but don’t “have” to do. The have to do activities are what I need to do daily, cleaning teeth, washing face, putting on clothes and so on. She also highly recommends as my “exercise” Pilates, it is meant to be especially good for ME sufferers as it incorporates gentle stretches and movements. I have to be careful in how I approach this in order to not crash hard, it is crucial to start slowly just doing a few stretches and build up ever so carefully and cautiously. It will be interesting to see how I get on, I can visualise the dogs being curious and no doubt getting involved too.
Plus as a chronic illness sufferer I have to account for spoon availability too, so take into consideration what NEEDS to be done that day and whether or not I have enough spoons to safely undertake the exercises.
I am not expecting any miracles or putting any undue pressure on myself to reach a specific target by a specific date. I reckon allowing myself 2 years to shift 4~5 stone is a realistic goal ~ ideally to be within a “healthy” zone by the time I hit my 50th birthday in May 2019.
How do feel about Friday 13th? Is it just another day for you or do you try to avoid making any big decisions or going anywhere on this day?
With the help of google I discovered that there are specific words which describe both the fear of the number 13 and more specifically the fear of Friday the 13th.
Triskaidekaphobia ~ literally means superstition about the number 13, but is also used to refer to a fear of Friday 13th.
However, there is a new word, Paraskavedekatriaphobia yet to find its way into our dictionaries which it’s allegedly derived from the Greek words for Friday (Paraskevi) and thirteen (dekatreis) which means specifically a fear of Friday 13th.
I am holed up on my sofa, surrounded by my three furry friends in front of the fire and apart from refreshment and loo breaks I don’t plan to go anywhere. I’ve had several buckets of coffee and am trapped by deep fatigue, my body doesn’t want to move, my brain is foggy, it’s taken me an age just to type this far with numerous typo corrections, re~writing and wondering if at this point anything I have written has made any sense at all? Why bother with the blog? I am venting, pure and simple, distracting myself from the sheer frustration and annoyance that I cannot lay claim to my body and control it how I wish. Perhaps another coffee is required before I can continue further!
So, coffee downed and I’m still grumpy and the desire to vent is strong! I have a stupid tooth that I cracked one night when I forgot to wear my mouth guard. This one night of forgetfulness has resulted in 4 dental trips in 4 weeks, 2 repairs, 1 root canal & the final appointment resulting in prescription for a week of high dose antibiotics in case unseen infection due to low immunity because of ME was there but not visible in the x~ray. The antibiotics finished yesterday ~ my tooth still hurts. I go back to the dentist next week ~ we wait to see if said tooth will “settle down”. My dentist is flummoxed. The x~ray looks clear, I’ve had antibiotics to clear any invisible infection, so why the pain? Buggrit, buggrit, buggrit!
I also have Temporomandibular Joint Disorder ~ my jaw cracks, aches, locks and sometimes won’t close without a slight sideways movement. I clench my jaw so wear a mouth guard at night, perhaps this is partly to blame for tooth pain?
To add further to my grumpiness whilst reviewing my ongoing joint and muscle pains at my ME appointment last week I underwent a thorough history and physical exam. Resulting in a further diagnosis to add to my already growing list of Hypermobility Syndrome. Deep joy! I’m 8/9 on Beighton Score. My back prevents me getting 9/9 ~ I can touch my toes with legs straight but not with palms flat on the floor, this is most likely due to hurting my back in my nursing days as it was something I could do in the past. Advice on pain is currently to keep taking the amitriptyline (which I take for depression and doubles up as sleep aid and pain relief), keep joints warm and do gentle Pilate stretches. Thankfully I’m down for monthly reviews and worse case scenario will end up with rheumatology referral.
So today I am mostly cursing in a bid to vent my frustration, not a helpful exercise I know but somehow makes me feel a little better briefly.
On a positive note though, I have managed to improve my diverticulitis pains somewhat with the purchase of a Squatty Potty ~ having an already compromised pelvic floor (after a double prolapse repair) and have been ordered not to strain (which my haemorrhoids thank me for) with diverticulitis you can have either loose or constipated stools and intermittent flare ups when the pouches become infected (nice I know) the goal is to try and keep stools soft enough to not back up, so I have medication to try and keep my stools formed but soft. Then with my not fit for purpose pelvic floor I find with the different positioning using the squatty potty I can avoid straining as it allows bowel movements to just fall away easily ~ whoosh!
Which for me makes pooping a more pleasurable and less painful distressing experience.
Thank you for allowing me to moan and whinge, I reckon it’s about time to pop a few more pain killers and try to have a Nana nap.
Then because it’s Friday 13th and any attempts to cook will probably end in disaster and full kitchen meltdown a take~away for tea will be in order along with my friend Jack Daniels.
Raising a glass and wishing you all a good weekend, may your belly be full, your glass replenished and your ailments under control as best as can be.
September brings with it the start of a new academic year ~ for some it will bring them the nerve wracking introductory first few days at a new school, college, university or apprenticeship. Having to go to induction classes and “ice~breaking” activities. Something from my past which I remember with a shudder and cringe as I recall having to sit in a circle, each of us standing up in turn to give our names plus some other titbits of information about ourselves. For me, being very shy and awkward, just this by itself was horrifying. However it got worse ~ a ball was introduced and we then had to try and recall each others names to call them at the same time as throwing the ball their way. Inevitably I got the name wrong as my memory is shocking at the best of times which then made me feel even more self conscious than ever. Many lucky students will be avoiding participating in all the “getting to know you” shenanigans and instead will be simply returning to familiar establishments and continuing their studies for the forthcoming year.
This year 2 of my 3 daughters are experiencing these discomforts; Keisha my eldest completed her foundation course last year with flying colours and now starts her 3 year joint honours course in (and forgive me Keisha if I have the name slightly wrong) International Relations and 3rd World Development. The course in itself is a mouthful but I know the content is something Keisha is passionate about and so hopefully that will help her plough through the course work required of her and she will meet other like minded people along the way. Tasha, my middle daughter, is avoiding all the “hello my name is…” stuff as she has just started her apprenticeship in business with none other than The Dave ~ he is training her up in all things American Classic Car and hopefully in future years she will be able to take on the business when he wants to retire. Finally, Tara, my youngest, started her “meet and greet” week at Derby Roundhouse College as she is studying Hair and Media Make-up ~ a course which requires a large number of equipment so we have invested in a trolley case for her to keep it all in to ferry back and forth to campus every day.
For the girls these new beginnings come with challenges, between them they are battling demons called Atypical Autism, Dyspraxia, Borderline Personality Disorder, Myalgic Encephalomyelitis, Anxiety and Depression ~ quite a list to be contending with I think you will agree.
As a parent I found the most frustrating part of all these illnesses/disorders are the lack of information and support for families living with them. So for this blog I have included videos from YouTube which I personally found interesting and decided to share just in case anyone else is living with them and in the dark, frantically searching for more and more information too and hadn’t come across them.
So first I find Atypical Autism creates challenges for my daughter with her education, socialising and environment but which she, with support is negotiating and still achieving her goals. For people unaware of the different types of adult autism and how it challenges those living with the condition this film is very interesting. The trailer for the film was published on YouTube on 13 Mar 2014, the description is…
“Too Sane for This World explores the challenges and perspectives of 12 adults on the autism spectrum. A unique collaboration between neurotypical and atypical individuals, men and women living on the spectrum speak candidly about their autism, difficulties they’ve faced, and the experiences that have shaped their lives, illustrating the neurodiversity of the mind and it’s limitless potential.”
You can find out more about the movie and how to download or stream it to view it in it’s entirety here.
As I said previously, another of my daughters has Borderline Personality Disorder, something I had never heard of until her diagnosis as she had previously been misdiagnosed as having Bi~Polar instead. If you or anyone you know has this disorder then you will be aware of all the struggles the sufferer has to face. For my daughter she not only has this but also ME to contend with too. This means that all her achievements are due to such determination and inner strength to not allow this to define her despite all the difficulties they throw at her. I found this short film incredibly useful to help me understand this condition further…
I think almost everyone has experience episodes of anxiety in their life and that I know is perfectly normal. BUT having serious long term anxiety can be very debilitating and makes life difficult for the sufferer. All 3 of my daughters experience anxiety on various levels and Tara underwent CBT which helped her hugely, if you suffer from anxiety you may find this video interesting/useful…
As 3 out of 5 of us in our family have ME, I have found myself having to try and explain the illness to so many people. Inevitably I fail in my mission when on the spot as my brain literally closes down and goes blank on me ~ which is hugely frustrating. So, imagine my delight when I found this great slide show on YouTube which explains all about ME and how it affects the body of the sufferer …
This being up on YouTube means I can say to people, “you know what, I find explaining this condition quite difficult as it is complex ~ can I send you a link to a short 2 minute slide show which can say it far quicker and more succinctly than I can”
For me personally I am finding that my biggest battle is with the unseen enemy Myalgic Encephalomyelitis which is trampling on my physical and cognitive abilities with enormous hobnailed boots. I am struggling to face the enormous challenge and energy drain of simply showering which means I am relying on wet wipes, dry shampoo (or hats) and sitting down to clean my teeth with an electric toothbrush ~ who knew how much energy simply being clean took? I struggle to find words, lose my train of thought ~ especially half way through a sentence. Forget what I am doing, where I was going and why I am standing in the middle of a room ~ presumably I wanted to do/get something? I wake up as tired as when I went to bed, getting up is a huge hurdle each and every day. My mobility is becoming more of a struggle with the pain and exhaustion from all parts of my body, so many I can’t pin point any one particular area. I feel humiliated in accepting help, it makes me feel so damn useless and embarrassed having to ask my daughter and her boyfriend if they could iron and clean my house for me because I simply can’t do it myself. I also have help to shop and prepare my food to zip seal and freeze or refrigerate to make preparing meals less stressful and tiring for me. Saying that, my family are fantastic and we all rally round each other, we try to all pitch in and help wherever possible and not to recriminate anyone who is having a bad day/s or week/s and simply cannot help.
Believe it or not though, September has some positive news too ~ my diverticulitis symptoms *touches wood* seem to be relieved hugely by following a vegan diet, which means less bowel movement disruption and toilet visits and also less sigmoid colon pain from my pouches. This is a great improvement and one which I am quietly celebrating, although I don’t want to tempt fate and so won’t, just yet, big it up anymore. I am finding the vegan diet nowhere near as limiting as I had first thought and am managing to have a varied and interesting diet which leaves me feeling satisfied and content. This YouTube video really clearly explains Diverticular Disease and Diverticulitis…
I don’t know if anyone will have found this blog useful at all, but my thinking is it doesn’t do any harm to put it out there, just in case. I blog for so many reasons, to vent, to raise awareness, to share something I find interesting or just to sort of diary entry what’s happening in my life.
Oooh ~ doorbell ~ back in a mo…..
Wow! Just had my Ocado delivery ~ a first, quite by chance I recieved a £20 off voucher on my first order and discovered they sell a larger amount of vegan foods than my local Tesco or Sainsburys. I now have *insert drum roll* VEGAN MAYONNAISE!! So happy, as I have missed my mayonnaise with my chips. Plus I have ordered almost the full Fry’s Vegan range to try out too. BUT THE MOST IMPORTANT PART I have now in my sticky mitts 6 LARGE bars of Bournville chocolate as my local shops have stopped stocking it and I was having enormous chocolate withdrawal. PLUS both Koko and Oatly chocolate milks to dip my biscuits in. #happyday I still stand by my earlier stance though of a BIG NO to both kale and sweet potatoes, just nope ~ don’t want them on my plate thank you.
So til next time, see you later and have a great September whatever you are doing, wherever you are and hoping, if like me, you are struggling right now, that you find some respite from your symptoms soon. I leave you with a few pictures of my lovely Hairy Trio who brighten my days, make me laugh and give the best warm and dry furry cuddles …
Just a quiet note in case anyone is interested ~ Just a heads up really, if you support a charity by fundraising online using JustGiving then you may be interested in their Charity of the Year Award. You can vote once for any JustGiving charity, up until Wednesday 28th September 2016. Click here and type in your chosen charity or Invest in ME (if you wish to support research into the illness ME/CFS), then click on their logo to complete the online voting form. REMEMBER though that 28th September is the deadline for voting.