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
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.”
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!
Now 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;
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!
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.
I 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.My 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.
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.
Today the 12th of May 2017 it’s all about ME!
Why is May 12th both International M.E. Awareness day and International Nurses Day? The date chosen for these two days is down to just one very special and significant person ~ Florence Nightingale. 12th May was Florence Nightingales birthday, she was a nurse of great talent, foresight and knowledge, plus it is alleged became unwell later in life with what is now known as ME.
Having these two days together is very apt I think, considering I am both nurse and ME sufferer I have a day where I can celebrate those who care for the sick and also raise awareness about ME.
Our Flo’ was quite the woman, an article on the ME Association website gives a little background about her, which I will abbreviate for you.
Florence was born 197 years ago today in Florence Italy, her parents were wealthy English folk. When she reached womanhood she took up nursing, which she felt was her calling. She was given the name “The Lady of the Lamp” after she cared for British soldiers during the Crimean War.
She has been credited with writing the first comprehensive text for nurses and founded a training school for nursing in London. She was also incredibly clever with numbers too.
A pledge was created in 1893 for nurses by Lystra Gretter along with the Committee for the Farrand Training School For Nurses in Detroit, Michigan. It was called “The Nightingale Pledge”, in honour of Florence Nightingale. The pledge has been modified a little since the original version. Nurses in America recited the pledge at their qualifying “pinning” ceremony. I am unsure about the UK, I know I didn’t recite it when I qualified, so presume it’s a tradition held by American nurses. The original pledge was…
It is said, from 1857 Florence became disabled by poor health. Her ailment is said to have been what we now know to be Myalgic Encephalomeylitis (ME). This is why she has been adopted as the “patron saint” as it were of ME, and why 12th May has become the International Awareness Day for ME.
Before I gained my nursing qualification I nursed my Nanna who lived with us. As she became more frail, she struggled to care for herself. She allowed me to help her in all aspects of daily life and personal care. We grew very close during this time which was a gift and I cared for her until she passed away. I was honoured that she allowed me to be there for her.
Following her passing I started my nursing training and even though I no longer use those skills in a professional capacity they have been enormously useful in my private life caring for family. Years ago, from the age of 14, which is when I started working in nursing homes as well as caring for my Nanna, my mum gave me the nickname “Nurse Nuttley”. She was thrilled when I finally earned my nickname and even though mum has passed we still use her nickname for me whenever my “Nurse Nuttley” persona is needed.
So today I am reminding myself that my nursing qualification has not been wasted. I am still using the skills I learnt today, just not in a hospital setting. I am exceptionally proud of my “nurse” title and so share with you my memory of my nursing days..
Then I share with you the date of my official diagnosis, I was told I have ME following the correct diagnostic criteria, and at every appointment it was referred to as ME, even on the handouts we were given at rehab group therapy. However, annoyingly, although the hospital called it ME, the diagnostic letter says CFS (Chronic Fatigue Syndrome) because that is what the hospital have been told to call it! Sounds petty but I loathe the CFS tag, it is not ME. This needs to change along with many protocols still used to treat the illness.
Incredibly, awareness about this illness, especially within the general medical arena, is still poor. We are still lacking in specialist doctors, nurses, physios, OT’s etc to care for patients. Most of us end up in a general clinics, without the properly trained or informed medical staff to advise us and care for us. However, charities such as Invest in ME Research, TYMES Trust, Let’s Do It For ME and Me Research UK are all doing everything within their power to inform, educate and lobby health care professionals to try and change the facilities and availability for the specialist care we need. This is because if the illness isn’t managed correctly the patients can become significantly worse, which for some is permanent.
So, a few bite size facts for you about ME.
- Currently it is estimated that some 250,000 people in Britain are affected by this illness.
- It goes by the names of Myalgic Encephalopathy/Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Post-Viral Fatigue Syndrome (PVFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
- It can affect people of any sex and age, in some cases in children as young as 2 years old.
- Women are 3 times more likely than men to get it.
- A quarter of sufferers are housebound or bedbound.
- Brain fog is a real and unsettling symptom, it means you struggle to concentrate, find correct words, read, write, listen to music, watch TV, memory problems and struggling to keep up with a conversation. Over stimulation is a real issue combined with brain fog. When I am surrounded by sights, sounds, smells and crowds of people, such as in a shopping centre, then often I become too overwhelmed and have to leave. It is exhausting trying to filter through all the senses and stimulation and often can lead to a relapse and post exertion malaise.
- Post Exertion Malaise (PEM) = this is delayed, often by 24~48 hours exhaustion and exacerbation of symptoms following either physical activity or mental, cognitive activity. For us as family we find cognitive exertion causes worse PEM symptoms than physical. PEM is a highly characteristic clinical and diagnostic feature of ME and considered in some respects to be an illness within an illness. (ME Association)
- This illness affects every system within your body. It is not just exhaustion, it can cause severe joint and muscle pain, swollen lymph glands, sore throats, dizziness, nausea, headaches, low blood pressure, shortness of breath, unrefreshing sleep or insomnia, high heart rate, abdominal/gut issues, sensitivity to light, noise, touch, smells, foods, cognitive issues like those explained earlier ~ these are but a few symptoms but are the most common for sufferers.
So on today, International Nurses Day, I would like to say to all of the nurses worldwide I offer you my heart felt gratitude and utmost respect. I humbly thank you for your dedication, hard work, empathy, strength, humour and commitment to giving us, your patients, the care and support we need in our darkest times. I want to acknowledge that I have the deepest respect for you working in conditions far from ideal, on pay that could be much better. You often face long arduous shifts with very little thanks, sometimes come under abuse, and can be lacking in support, staff numbers and in some cases equipment. So quite simply, thank you for all you do.
Also, for International ME Awareness Day, I share with you this video which explains our journey with the illness, I hope you like it and find it informative and not too boring…
Finally, I would like to thank you for taking the time out of your day to read this blog, it means an awful lot to me that you have. I will leave you with a House MD gif, because I adore House and this tickles my funny bone, plus the final word from our Flo’.