The Fog.

Recently I wrote about the mist within my brain, now I want to tell you about the fog. The fog is different to the mist, it appears instead as an almost solid wall, blanketing the brain and suffocating all ability.

When I think of the fog, I am reminded of the old horror film of the same title. The fog would billow over a sea side township, hiding revenge seeking, dead pirates within its swathes. As a child this film scared me, as an adult my own fog terrifies me.

Years after the film, I read the novel of the same name by James Herbert expecting a similar tale, but his was a darker story within which people had the sudden urge to kill themselves, even more chilling than murderous sailors from the past.

I think also of the great smog of London past, when industrialisation poisoned the planet and was clear to see thick and deadly in the streets. Fog to me is a thing therefore of nightmares.

Many speak nowadays of ‘brain fog’ as though this is an understood thing, I hate the term, i hate the way it sounds when it is spoken, I hate that all kinds of well people have claimed it as their own. I no longer use this term. For me it is simply the fog. Whereas I may see and feel the mist rolling towards me, the fog seems to just exist within me and around my whole body. My brain becomes clouded, like a shroud of death has been wrapped over me. Thought is impossible. My limbs fight in vain, trying to move against the will of this monster.

Surroundings blur, consciousness fades, can I even speak my name through this murk. Concentration is impossible, it is as though the mind is paralysed, Is this what death feels like? I am cocooned in nothingness. ‘And this to will pass’ is the saying and I must always think of that. This is not a permanent situation, it will dissipate in time, how much time depends on my energy reserves. I can reboot quickly or be stuck within the shroud. The initial frustration and annoyance I feel at my body holding me back, just as I need to get something done, soon gives way, fighting is futile and physically impossible.

If my brain was a lighthouse, I would light the light and banish this fog.

Chris. xx

Hiatus.

It is official, I have a hiatus hernia! Also there is the beginnings of Barretts, Samples have been sent for checking but there is no cause for alarm. How do I know all this I hear you ask, well let me tell you. I endured a gastric endoscopy.

It was a horrible day, my appointment was for 3pm but it was well after 6pm before I was seen. Having fasted as per instructions meant I was hungry, thirsty and beyond tired. I am not good with long waiting periods. It was hell, I had opted for just the numbing throat spray so that I didn’t need to spend hours at the hospital, hell that did not go to plan. I hate hospitals, I can control my phobia better nowadays but I still always want to get out of there as quickly as I can.

That tag being fixed around your wrist sends me into panic mode, ‘I am not staying’ my mind screams. ‘ I know who I am’ it shouts. On this day I was the last patient to be seen, yes all the others who had opted for sedation had rested, recovered and left. The staff were terribly nice and apologetic so I could not complain.

I last had this investigation done over twenty years ago, yes I am this old, at that time they diagnosed oesophagitis with reflux acid, I was surprised then that, that was all. Its a family condition, Hiatus Hernia, my Nan kept a bottle of gaviscon to hand, my mum has it, my nephew seems to. I do not remember that time being horrid.

This time it was most certainly horrible, biting on that plastic as a tube worms down into you is the most unpleasant sensation. Trying to breathe regularly, feels impossible, thankfully a nurse held my head and directed me through breathing, how can this be hard? But it was. The taking of samples caused the most discomfort, I was ready by then to pull it all out and run. I had very nearly left when the wait time came to three hours, I am glad now that I stayed.

With M.E I am more used to tests and examinations showing nothing, it made a nice change for them to actually find problems. Thankfully it was quite quick, although lying there on my side, choking on a camera, it had felt like it was forever. The results were all well explained, I was even shown the image, it was like an alien flower blooming up and out of my stomach. Apparently the Barretts is just the lining changing to become as stomach lining. The image provoked a reaction within me of a mix of revulsion and fascination.

So it was over, I jumped up and was ready to run out of there, but no, I had to go and sit and wait in recovery, while my report was being written. They checked my vitals and I waited again. The ward itself had closed down for the night, I was the only patient and all staff were hovering, waiting to leave also. Eventually I had a copy of my report and I could scoot.

So now it is official, I am turning into the women who came before me. There is nothing to do about this condition, just keep taking my medication, well yes, indeed I will, as I can not keep food down without it. I may need to go for checks regularly, I hope not.

It is an interesting word hiatus, ‘ a pause or break in continuity’, so literally a gap in my tube, causing the stomach to rise into it. The test day itself, with the long uncomfortable wait time, lead to a hiatus in my week, I crawled into bed and stayed there for a day or so.

Here’s to my Hiatus Hernia, a firm diagnosis of something at last.

Chris. xx

The Mist Rolling In.

Mist is a strange thing, essentially it is water droplets hanging in the air, causing poor visibility. Think of a time you have looked out to see a bank of mist, it seems to gather in blocks, with fingers, tendrils reaching forward and growing, it creeps over the landscape with a silent warning.

This is what happens inside an M.E/Fibro mind. We can seemingly be operating at near normal levels and feel capable, productive even, but then the mist develops, like clouds bursting into our vision. it blankets our brain, dulling our senses and darkening our sight. We can use this as a warning sign, when this starts we need to stop, disconnect, rest and hopefully reset and begin again.

The misty canvas crawls inside our heads, like a voile curtain at first, becoming a woolen scarf blocking out all. Imagine now tying a thin scarf around your head and eyes and trying to move and do something, can you even speak? Next try an actual thicker woolen scarf and tie it tight. This is us! this can happen for a period of any, every day. How much would you get done like this with your senses, thoughts, sight impaired?

Here I want to credit all sufferers of chronic illness, anything you manage to do is amazing! So often I forget about this symptom, it overcomes me so naturally and is such a part of daily existence that I rarely think of it anymore. It is however an important symptom and it takes a terrible toll on us. Being gradually smothered by your own brain is something else.

I am thinking of the mist rolling in from the sea, reaching out over a beach, it is a beautiful image, but when the beach is your brain, it is not so pleasant. I am distinguishing also, mist from fog; I think of these two differently, they have close similarities, yet mist is the more gentle of the two, through the mist I can make small progress, fog on the other hand is a different story. I will get on to that topic soon.

With the mist spreading within, I can now complete certain tasks, I can follow simple exercise instructions, if being lead, a stretch class or something gentle that doesn’t warrant physical co-ordination. The kind of class where you can lie down and close your eyes. I can get myself home through the mist, using my internal homing beacon and slither into bed like a snake who has lost her skin. I do not succeed at anything requiring independent thought or speech. I can follow but I can not lead myself.

The blurriness will only intensify. At some point in our journey, we all try to clear our heads of this unsolicited symptom. For me, dunking in to cold running water, a river or stream, most appeals. The ions created from breaking water have a magical effect on our brains. I have a cold water bath in the garden and on these summer days I can plunge down into this and shock myself in to another mode, but any reprieve perceived is short lived.

Lets face it, even if it was the best solution, we can hardly carry a bucket of cold water with us all day. ‘Excuse me I just have to dunk?’ would hardly be accepted in the work place. We can try mini rest breaks and summon up our strength to continue, despite the debilitation, but this like a plaster over a gaping wound. Reset is needed and that is that. When the mist moves our time is nearly up, we can but organise our lives into manageable chunks, do what we can before that dark shadow passes over us.

If only we could blow into it like a harsh wind and watch it disperse.

Chris. xx

Turning Into Mother.

Recently, I caught my reflection in a window and was overcome with how much the image reminded me of my mother. It was the trousers that did it. I was wearing mum’s trousers, well not her actual trousers, just ones that were exactly her style. How did this happen? When did I start following in her sense of style?

The trousers are a checked affair, tapered jegging types, grey overall with colours muted in. I bought them in a charity shop, I buy most of my clothes in charity shops, not just for the bargain prices but due to the lack of clothes shops in our town and surrounding area. I had been liking them, that is until now. Now that I realise I am dressing like mother, I suddenly want to burn them, what’s with that? I love mum, after years of a haphazard garish fashion sense she has grown into an older woman of style. So what is the problem with liking the same things? Is it a challenge to my identity, a fear of ageing? Or do we all just want to avoid turning into our mothers?

They say, don’t they that if you want to see what a woman will age like, look to her mother, or reversely for men , to the father. Is this true? Is it inevitable that we become our parents, like it or not? People have commented in the past, ‘Oh you are just like your mother’ and meant it as a compliment, while I have seethed. Next to my brother, the family link was clear, with definite features of our father, I never used to mind that until the day i looked in to an all surrounding mirror in a changing room and saw the nose and eyebrows of him, shocked that yes I looked like a middle aged man. Yes that was a time to learn from, to begin making more effort with my appearance. Now, my brother was a very handsome man but those features are not so attractive on me, as a female.

My mother is a very attractive woman, a woman of great substance and these days I feel proud to know her. I just can’t come to terms with turning into a version of her. I really don’t know why this is the case. There are worse people I could resemble and worse tastes to have. I am an older woman, over fifty now, I am a mother to an adult child, well in theory at least. Is it just a rebellion in me, a refusal to accept myself as a mother, or as another? Is it just my sense of freedom it impinges on? Am I secretly enjoying morphing into someone else, have I given up on my own identity? Am I rejecting myself, as I reject these mother like trousers? Ooh such thoughts to think through.

I just don’t know, I do know though, that the trousers have been washed and now sit in the going back to charity bag. I am not ready to wear mum’s trouser’s yet.

Here is to wearing our own trousers!

Chris.xx

To The Bone.

Today I am thinking about bones, its not something I think about until I encounter a bone problem, but actually bone pain is a continual symptom of this lurgy. When I think of bone, I picture an animal bone, being gnawed on by the dogs. They are hard and dead, solid seemingly but full of bone marrow, they love that. you can see the internal make up of the bone, all those circular cells, like a honey comb.

I pause here, I looked up images of inside bones to remind myself and find myself feeling hot and bothered. I discovered some years ago that I have a phobia of holes, well my daughter discovered it, when she held a clear bowl of macaroni in front of me, I went into panic mode, she was astonished and then curious, she knew it was a thing, trypophobia, she went on to test me with images of holes and I had palpitations and nearly passed out. Once I knew of this phobia I saw holes everywhere, it was horrible and so I tested myself daily for a while with such innocent and yet dreadful images, who knew a poppy seed head could create such a freakish response. Over time I have adjusted and can now see holes with only a mild sick feeling.

I now picture bone holes unpleasantly in my head, again they are hard and dead; but this is only after death, inside of us they are alive, those cells function. There is a lot to them but how often do we think of that. We know we can break and fracture our bones and that they can repair, but how often do we think of them as living parts of ourselves?

I am not going to get into the anatomy of our bones, rather thinking of them helps me to understand why I have pain in my bones. We can easily see some joints and recognise that these can hurt and so in the same way we can feel our bones within us. At times I feel as though my bones are being pulled and stretched but also I can feel pain searing through them, of course I can, these internal cells are alive and fluid, they grow and flex. From childhood to adulthood they grow within us, causing the expression growing pains. How I hate that term, I remember hearing it from my own doctor aged eleven and thirteen, when I complained of my joints failing me and constant pain. I heard it from my daughter’s doctor for years, she complained of bone pain from four onwards, when she had to sit crosslegged on the floor in school and walking to and from there. ‘Growing Pains’ it makes me want to stick my fingers up in a ‘V’ sign and shout.

Back to the point, if I have one. Bones, they are so important and must not be over looked. At times I lie in bed sensing the cells in my bones as they cry out for attention, I stretch and bend and massage and try to quieten the noise from them. At times I feel as though my bones are steely rods, solid and straight, I walk like Frankenstein’s monster, shifting from side to side. In stretch classes I bend like a brick, seeing others with their heads near their legs, I am upright or slightly sloped. Oh well don’t compare. At other times I feel the whole shape of my skeleton within, living, breathing cells, an internal world of blood vessels. Sometimes, while out and about I will suddenly feel a sharp bone pain, in my shin maybe or my hip and pelvis or my elbow or my wrist in my shoulder or sternum or anywhere in fact. It is hard to deal with, my very core feels damaged and broken and yet I know nothing will show up on any x-rays or scans. Currently one knuckle sticks out strangely I await a muscular, skeletal appointment, in vain as I know nothing will change it and that extra hand pain will eventually just become normal.

So I think to myself, here’s to the bone of the matter, be kind to your bones, don’t ignore those sudden onset bone pains, don’t push through that pain, those bones are sensitive and need good care.

Stay strong and stretch,

Chris. xx

Hi, Pollen.

I am back to thinking about allergies to pollen. It is the time of year for it after all. I react very badly to pollen generally from early in the year when plants start springing up all the way through the summer season. People around me seem oblivious to it all, only they are not, I notice that both my daughter and my mother suffer due to pollen, I advise anti histamines to know avail. They tell me their eyes are not watering, they are not sneezing. I tell them this is not the only symptom. That sweeping drowsiness they complain of, yes that could be pollen related. I give up with them so now its your turn, my lovely readers.

There are generally three types of pollen, tree, grass and weeds, there are various specific types of pollen from specific species, In fact any thing plant like that grows produces some kind of spores or scents into the universe. It is all around us and the symptoms vary. Cut grass will make my eyes water and my nose run, but tree and weed pollen put me under a drowsy spell. Still I love to be outdoors, as the season continues the pollen released changes and in time I adjust and my reactions lessen.

Puffy sore red eyes? Yes it could be pollen. Sudden onset of suspected cold? Yes it too can be pollen. Wheezy breathing? Yes this too. General unexplained lethargy? Yes, you guessed it. Air pressure greatly affects the pollen levels, low pressure can squash it down like a menacing cloud, High pressure can spread it around even further. Lets face it there is no escape from it outdoors. So what is the solution, well it is not to lock yourself inside, as my daughter thinks. Pollen can even be indoors, from indoor, seemingly innocent plants, brought in on washing hung out, or just in through open windows. The key is to deal with it. I have written before about various medical treatments and so I won’t go into it here. There are lots of things on the market or through prescription to help. If you suspect you may be suffering look into it.

If grass is the main trigger get out under the trees, deep into a wood, the air there is wonderful and fresh. If tree pollen is your nemesis, get into the open fields. Don’t give in and assume nature is a tyrant and lock yourself away. Find the best treatment for you and get out there.

The breakfast weather presenter commented this week that Oak tree pollen is currently rife, if all the trees release pollen at different times it is no wonder the season lasts so long. I feel validated in writing this post. How many of us will wonder if we are allergic to Oak tree pollen? It doesn’t spring to mind when we think of hay fever. We tend to think of grass and flowers but it is just so much more. I am curious to test reaction under an oak tree now, though with all the antihistamines I take I am probably immune now, well I hope so.

Banish that sneeze!

Chris.xx

Feeling Hot, Hot, Hot.

Currently the weather is, yes you guessed it, hot. The sun is beating down daily and there is no sign of rain. Formally we are still calling it spring, yet this is clearly summer weather, what ever we say. To those climate change deniers I say look around, feel the heat, see the global natural weather disasters from wild fires to floods, from drought to cyclones and think again.

I love the heat! I find it wonderful! Decades ago I moved from relatively northern places to the south coast, the contrast was stark, I had never encountered such heat in this country. It took me by surprise and I had to adapt to it. I soon changed my wardrobe to suitable clothing and adjusted to the feeling of sweat dripping down me. I couldn’t help thinking that this glorious sunshine was the reason there was and is still, a better quality of live for people in the south. Warmth opens us up, where as cold, shuts us into ourselves.

Now in the North Midlands, I embrace the change in climate. There is no more coat wearing in summer, as there was when I first relocated here. I celebrate this by filling my cold water dunking bath in the garden. The thing with heat is to be prepared and deal with it.

All around me people complain, many seem to hate this warmth. The problem is that as a country we are not used to extreme heat, we are not generally set up for it. We are used to being the cold, dark place the Romans hated so much. Working in any environment is hard in this heat, air conditioning is not generally widespread, our old buildings are not designed with heat in mind but rather the opposite.

I feel for those who can not cope, but I just wish they would stop moaning, people grumble through winter and mutter as it rains, maybe we are just a country of weather complainers, never happy with the environment around us, maybe we just like to talk about it. Am I just as bad? I am writing about it after all.

I want to tell people to embrace the sweat, just give in and let it flow. It is not unhygienic, it is natural and we are all doing it. Stop being paranoid about body odour, spray yourself with scent and pop for cold showers whenever you can. Keep your house dark and closed in the daytime, set up fans for these long hot nights. Let yourself melt into it literally. Make some changes, avoid the mid day extreme heat and aim to enjoy the cooler evenings. To me everything seems easier in the warm. My food choices are simpler and easier, the days are expanded and there is just more time for things. There are so many benefits and I just love it.

Even when I am stuck in my bed, with the sun streaming in, I feel better, optimistic and hopeful. Okay, at times it can feel frustrating to miss out on beautiful days, but the key is to make the most of it while we can. Naturally it is important to avoid the full glaring rays of the sun, shade is always best and keeping cool is vital.

Enjoy the sun!

Mental note to myself, you can’t live on ice cream!

Chris.xx

Clean Cleaner.

Woohoo! We have a cleaner! Yes an actual person, to come into our pit and help. As I age I find I care less and less about cleanliness and housework, it is hard for me and I just find I no longer want to even pretend I am trying to keep on top of it. So here I sit typing this while a lovely woman, who enjoys cleaning, yes she actually does, tackles our home.

Fortunately I have known her for a long time, having met through our babies at a mum’s group long ago, unfortunately for her she went on to develop Fibromyalgia following on from an infected cannula, yes that’s all it takes. So she understands my problems with the house and doesn’t judge. I am nervous to have people inside our home, it is my inner sanctum, my private world and I am not comfortable letting others in, She gets this and works around our things and respects our seemingly chaotic systems. She is training me in some things. I had to buy new wooden kitchen utensils, apparently they were past hygiene standards, I couldn’t see the problem but did as I was told. She is keen to get us organised but isn’t challenging me too much. I live with muddy dogs, a cat and a person unable to do anything, so my standards are low. She is particular but guiding me gently.

Walking into a clean living room is a revelation, that things are tidy without me touching anything is wonderful, the clean kitchen floor gleams golden yellow. Yes, idiot me, went for a bright yellow vinyl floor, it was on offer and just spoke to me, all these months later, it is the bane of my life, it shows every muddy paw, each and every crumb and I am just waiting for a reasonable amount of time to pass to justify changing it for something dark and practical. At least I know the floor is clean, for a while I enjoyed sweeping and mopping it, but that soon wore off. It does make a great dance floor.

I am not a complete slob, I do have to go around and sort a few things before she comes, I have some pride. I wonder how many women clean up ready for the cleaner. Somehow it feels strange having someone else doing my chores, but I like it! I can stop thinking about it and put my limited energy into the things I enjoy and am good at. We are keeping responsibility for our bedrooms so there is still some for us to do, in our own time. Right now, sunlight is gleaming into my room, showing the roaming dust particles, reminding me, this room needs a clean, but for now I am writing this. I have timetabled some small tasks over the week, everything feels much more manageable.

We have changed the arrangement so she is coming twice a week and doing less each time, so as not to over do and have payback, she is ill too so it would make quite a comedy sketch really. I don’t think I could cope with a normal healthy person coming in, I would feel inadequate and defensive. I don’t feel comfortable giving instructions or overseeing someones work. I wonder how many women feel judged and awkward around their cleaners. Is it a thing? Or is it just me? Well thankfully, I think I have the best person for us and just need to relax and enjoy it. The only draw back is that at times she is too ill to come, I don’t mind that, her efforts are a big improvement so I just carry on ignoring it all, knowing she will be back again sometime. I send my heart felt thanks to her for setting me free from domestic drudgery.

It is true I now hate cleaning, it is just so hard and unfulfilling and constant, I find my quality of life is improved without it. Even here I find I must justify myself, is it right that a person like me, taking government financial assistance, should have the luxury of a cleaner. It is not a luxury for us, neither of us can physically manage the tasks and our home has been all the worse for us trying. Having a general level of cleanliness around us is necessary to keep us well.

I want to celebrate and announce to the world, I have a cleaner! I don’t have to clean! I recommend every household gets one! This is what PIP is for afterall.

Put down the mop and do something less boring instead!

Chris.xx

Why Is Good Friday Good?

It is Good Friday and as per most years I find myself pondering this question. Yes why is it called this? According to christian belief isn’t it the day Jesus died? Death is not good is it? This is where christian’s will tell me ‘he died so that we might live, ‘yes I was schooled in the U.K and religion was compulsory. Still it doesn’t sound good to me, even taking into account the concept of his sacrifice for our good. I am not a christian. I tend to tick the box ‘spiritual not religious’ when such knowledge is requested. My mother tells me the day was originally God Friday and changed over time, now this makes sense, I can go with that.

That leads me on to Easter and its origins. As with all of our celebrations and feasts it has been taken over by the christian religion. Naturally it is the time to celebrate the spring equinox and growth and the end of winter. Eostre, Eastre, Ostara, these are old names for the season, relating directly to an Anglo-Saxon goddess. Many christian’s dislike this connection and prefer to deny it, but it is the history.

I hope here that I am not offending anyone, with my non-christian musings, it is not my intention. Easter is a time of renewal, of re-birth, new beginnings and light. I sit here now enjoying the idea, spring fills me with optimism and enthusiasm. On Sunday I will be celebrating my mother’s birthday, with friends and family and so it has a personal meaning.

For most, Easter is a day of Easter eggs, chocolate and a long bank holiday weekend. Time away from work and school, for families to be together. Time to fill and enjoy. We are a multi- faith world now and Christianity is no longer our only option. Other religions reject or embrace Easter according to their teachings.

I prefer the natural element of the time, I embrace spring and all its growing glory and look forward to eating a chocolate egg. I am like a young child and love Easter eggs, in the past I would stock up on them early or snatch up those languishing on supermarket shelves following the date. There were always bargains, that is no longer the case, cost of living has pushed up prices and I am no longer comfortable spending on such chocolate, so its a chocolate free house for us. Luckily, thankfully, I know my mum has still gone for it.

Then there is the Easter Bunny, what is that all about? I will just say Easter for me is a versatile celebration of life.

Enjoy your chocolate eggs and bunny hunts!

Chris.xx

Insomnia.

It is the middle of a night and I am wide awake, yes it seems perverse, but a symptom of M.E is sleeping disturbances and insomnia. The condition can have an adverse effect on sleep quality. We can go from sleeping beauty, sleeping constantly without rousing, to total wakefulness and inability to sleep at all, despite extreme tiredness.

We are all familiar with the concept that sufferers can sleep for longer periods yet being less refreshed from this. I need at least twelve hours of sleep to refresh as opposed to the six to eight hours of a healthy person.

Right now, I sit here struggling to make sense of my senses literally. My brain is shooting thoughts around and through but I don’t really have the energy to do anything with them. When I lie down I toss and turn, unable to get comfortable due to pain, I am unable to read or watch TV. When I get up and venture downstairs to switch on the washer, may as well make use of the time, I try to run electricals after midnight in the hope of decreasing my bills; I need to lie down again, but still no sleep. I stare and wait and wonder.

Is it that I have had a busy day and triggered my adrenaline? That is a possibility, I do not feel the usual symptoms of adrenaline though. I just feel frustratingly awake. I know this can happen, in the past at times I have used sleeping pills in the short term to regain control.

There are all kinds of sleep problems that are a part of the condition. In fact there is a myriad of sleeping symptoms, that plague us. Don’t you just hate when people refer to M.E as sleeping and tiredness as if it is a simple, uncomplicated thing. I make a note to look into sleep in more detail.

I am loosing the will to live, even the dogs have given up and sleep, deeply, undisturbed by my movements now. The clock moves forward at irritating rates. Why is it that we watch it so when we are in this position, as if it will suddenly be morning and we can get up and forget this dreadful and long night. By morning, of course I am in no state to get up and suddenly find I can drift into a superficial sleep of sorts, still seeing daylight twinkle in my eyelids.

For now I will say night, night and wish you restful sleep and peaceful dreams.

Chris. xx