Little Finger.

Ping, ping, pppping! There’s an annoying pinging feeling radiating from my little finger. It’s been happening for months now. It started as a slight jarring, like a gentle but noticeable creaking, as though my finger just wanted to say hello. That doesn’t sound so bad, right? It’s just a little niggle, surely?

Yes, that’s how it starts, a little hello wave, but its a wave that keeps on waving and waving. Three months or so later, it has made its self a constant part of me, like a drill in the brain.

I can not feel anything specific when I check it out, it throbs, twangs, aches away, each and every day. That dripping tap echoing around my body, driving me to madness.

Well what to do? I hear you, I tell it, I see you. What do you need? I am now wearing a finger splint and that helps for a while, I remove it and feel cured only for it to ping into being again. I exercise my fingers and massage it. When I put my hand flat, my finger hangs out to the side and doesn’t want to straighten, when I bend it it hurts distinctly.

Maybe it’s from my writing? Maybe I have strained it somehow, writing now, I don’t seem to be moving it much, but who knows, not me. How is it that the smallest thing can cause so much distress? At night as I try to sleep, I feel it burning, flashing; the annoyance of it does distract from other deeper pains, so maybe that’s it, maybe it’s just one small pain to focus on, breaking the pain down into recognisable chunks? Maybe? Then again, maybe there is just something wrong with my finger?

It’s just the way that it is, one day, just like that it will have retreated, until the next time.

Chris. x

New Year Update

Well, I’m back from outer space!

Sort of. I am showered, dressed, made up and out of the house and not in a muddy field with dogs. I am trying!

Christmas was, in the end a PJ affair, that was as relaxing as it was depressing.

My pain feels through the roof and has made all activity and movement scary to me, I have a Doctors appointment next week so I am trying to get a grip in the mean time.

So here goes, hopefully new blogs will be flying out of me, we will see.

Stay tuned and be patient, please.

Chris.x

Seasonal Update

Its a few days before Xmas and I have been unable to work on this for weeks; luckily I had some saved, was so proud of myself for getting organised and then just like that I am not.

I succumbed to ‘flu’ and that took me out but since then its the family responsibility of the season taking over me. I so want to sit here and share, but I just don’t have the time, so I shall fill you in next year.

Merry Xmas, or Winter Wishes as I prefer .

Back soon!

Chris.xx

Dance away.

Well, it’s been two days since I was up and around, mostly I have slept in-between, and now I realise why; my last writing mentions the marshmallow feeling and I know with this symptom, I need good rest, and yet did I heed my own advice? neh, of course not, I continued with my planned routine, stretch class followed by cardio dance. in my defence the stretch class is all lying down and is very relaxing, so I was right to do that, just I should’ve stopped there.

Cardio dance is a little like dancing in your bedroom with friends when you were little, half an hour of warm up routines then 30 mins of a choreographed sequence, yes a whole hour, this is my maximum time limit, it is quite wonderful and very life affirming, it has taken me time to get up to doing this whole class and regularly, but it has become a part of my routine and I love it!

This week I was hopeless, it was a lovely flowing piece, I cannot remember the song, though it was new to me at the time, with the moves really complimenting the rhythm, yet my limbs would not compute, it doesn’t matter, nobody cares, it is the place where you can make a fool of yourself, and people will applaud you for it. I usually experience a surge of energy and happiness following the class, but a painful broken night’s sleep followed this one; and after first getting up yesterday, I found myself drawn back to bed until this morning.

Note to self, listen to own advice! Note to readers, if you can’t take your own advice, take mine, listen to your body and act accordingly.

With that in mind, I am rethinking my plan to attend, my dance class today, Contemporary Moves, is a gentler, gliding class with smaller routines put together, I am in two minds, I have a distinctive pull to the left today and sickness lies just under the surface. I may opt to go and see, I can stop and sit out or leave whenever I need, being with people is so good and I think I need that, it’s a lonely life.

Dancing has become my new love, I have the shoes and even a wraparound skirt, the boost that it gives me far outweighs any over exertion. I have worked up from one class, to two regularly and two intermittently, I am not a ballet dancer, I have a solid stature and yet now I take part in Ballet classes too. the classes amaze me, they lift me up beyond myself and I never want to give up this feeling. So many of the moves are good for the brain, learning and repeating is good in itself but certain gestures pinpoint areas of the brain that we need to target and keep working. The dance school provide classes for dementia specifically, but most are for general love and wellbeing. I am lucky to have a dance school as part of the gym, its council led and very affordable.

My body and soul has changed since I started dancing, I have opened up physically and emotionally and have a confidence I have never known before.

With this love comes the opportunity for disappointment, dancing is hard and at times I feel I am pushing myself, is it better to push n feel alive in that moment or to compromise? It’s a bit of both, in truth, and it depends on how I am feeling. If I have a clear time, with no activity planned to follow it, I will usually go for it and rest long into the next morning, If the next day I have demands on my energy I will probably avoid it, or if I am not sure I will go and see and if I need to, I will take time out, or just go slow and make less effort. Such decisions are an ongoing minefield.

Do what you love.

Chris. xx

Send In The Tanks.

Just thinking of this title makes me cross, I am remembering an appointment I had nearly 20 years ago, with a consultant at the hospital. This will be more of a rant than a waffle!

I walked to the hospital 2-3 miles, I had no money for a bus or taxi back then and walked everywhere within a few miles, so I was exhausted and sweaty upon arrival. Then there was a huge delay and I had to sit and wait uncomfortably for over an hour, during which I went into a sleepy state. By the time I got in to see this consultant, I was a mess, confused, dazed, pained, I wanted to cry and sleep.

So, this wonderful medical man went on to treat me as a depressed, overweight person, his attitude was judgemental, as if I was wasting his time. I was carrying a little extra weight due to the difficulty of exercising with a walking toddler with no child free time as a single parent, I was fighting it. It seemed he was some kind of orthopaedic specialist, but more used to operating and fixing damaged bones and not knowledgeable in CFS or related conditions after all, as I had been expecting. Ho, hum.

He agreed to refer me to a nurse practitioner who could help me manage my condition, (that never happened) in the meantime he bombarded me with his advice, ‘send in the tanks’ he rallied, see your pain as a ring of fire and send those tanks on and through it to the other side! With these words I knew I was in the wrong place, all new treatment advice back then as now, was to never push through, but to pace and build up very gradually. thoughts of Johnny Cash and his song came to mind, images of warfare and victory, even the Doors, ‘Break on through’ song sang in my head, it was a lively speech.

I sat and cried, adding fuel to his misconception, all hope for help lost, I sobbed, he rallied some more, giving me a speech about winning the war, I wanted to kill him but was too exhausted. I scuttled away from his office feeling crushed and hopeless.

Now years later, I try to think that he meant well just was ill informed, this is being generously kind on my part.

I took myself back to my G.P, a broken, hopeless desperate mess and signed up for SSRI’s to raise my mood, (they made me fat) knowing they don’t improve my energy levels. He asked me about my appointment, and I told him honestly, he shared ‘I was afraid of that.’ Yes, he knew this consultant by reputation and that his specialism was not CFS or related just the closest they had to it. It was all a waste of time.

Since then, I would like to say that there is now a CFS clinic in our area, except no there is not, they exist in other parts of the country though so who knows, one day, someday, maybe.

Vicious Viral’s.

Well, here we go, time to talk about the viral symptoms, these are the nasty things it’s difficult to describe and explain, no it’s not just a cold!

I can write this easily just now as I can feel my glands up and throat beginning to close, my sinuses have that astringent slightly swimmer feel, like I’ve just been underwater in a pool, you know what I mean, that ‘I can feel a cold coming on’ that people say, just before being consumed with the flu. It’s time for my ‘first defence’ nasal spray, throat spray, yogi throat tea, extra paracetamol, if possible, maybe even an antihistamine for good measure, anything and everything to ward off these viral symptoms.

Viral symptoms, those enigmatic, illusive, hard to diagnose virals that take over at the first opportunity. Over done it, yes, they will be there. They lie in wait, in the blood somehow mysteriously making our cells attack each other as hostiles. How to cover this complex state. Everyone knows what Flu, is like, that total debilitating all-encompassing misery it brings, but how to explain, this is just a natural state for us, it can come and go in a moment, it’s always there, raring to break out and take over. The fever and delirium, it brings put you right out of action and oblivious to all, the tonsilitis, the accompanying chest infection it all comes, and yet we can’t even give it a name, ‘flu like’ symptoms the medics say, not even the flu in name and yet so much more in reality.

These symptoms can range from newly oncoming to full body consumption, we must at all times be wary of allowing these to take hold, full Flu like will take over 2-4 weeks of life, and it will feel like hell. Yes, in the full depths of this you will find it hard to breathe never mind move, you will beg the universe to put you down, to take away this misery, you are a dying slug gradually vaporizing, being crushed under a giant boot of darkness, falling into the vacuum of viciousness.

I hate thinking about these times, I feel lucky, I have not been that ill in months, yet I know it lurks around every corner. At the first claggy feel in my throat, I know it’s coming, time to batten down the hatches and quick! The hard rock glands push my neck out to my chin, creating an unattractive set of swollen puffy chins, the skin loses all shine and becomes sallow as death. It is hard to describe this when I am not experiencing it but when I am it is impossible to do anything and the first hint of recovery you just want to forget about it. You cling to life in those days of improvement wishing and hoping, giving up and giving in and then desperate to live to breathe fresh air again, just when you think you can take no more it gets worse and then suddenly it recedes, moves through and out of you and you can see the end of the tunnel. You want to run through this tunnel and live again.

If you carry on in the same routine that caused this it will continue in a cycle of attack, where every other week you will have viral tonsilitis, where your life is one huge bin of tissues and you are stuck in the bottom of it, reinfecting yourself with every breath.

When I try any kind of working routine, even part time commitments, I live with these viral symptoms daily, with full flu always on the horizon, every rest break helps a little but then it’s back to it, permanent cold, sore throat, sinuses blocked, headache, fever, dizziness, these are just the few horrors that plague.

Now I have control of my routine and am flexible in my activities I can go for months without any of these viral symptoms, I can nearly forget about them, until I do forget and then bam, there they are again. Now I use these symptoms as a guide, my glands come up and I know I must slow down, my throat starts, and I must rest. If it worsens it will take hold, prevention is the key. There is no beating these symptoms without resting and keeping warm. Extra vitamins, Vitamin C particularly, make you feel you are doing something and can seem to help, but serious rest is the only way to stop its path through you.

One eye.

Well, more waffling on eyes….

I sit currently with one eye in, I lost my left contact early today, as I stepped out of the shower, I really thought I had nudged it back in, but later when I stuck my finger in my eyeball, I knew it had gone, no sign of it anywhere, but then I can lose the milk so, meh. It’s not that I poked myself deliberately in the eye, though this is somewhat true, I reached in to rotate my contact into position, aware that something was off, so when I flinched at the eye contact, (little pun here ha) I knew it was out. no doubt I will find it when it has hardened and is useless to me, I usually do.

Luckily today, yes, such good luck, I am having a dizzy day, a leaning tower, with a vomitus mass, (Just realising here I have used the American spelling for this blog, changing it now whoops.) and a little marshmallow I am taking steps that feel as though I have removed one boot with a definite to the right preference. So blurred, undefined vision seems like nothing today, had I noticed in time I would’ve, put in a new one, but too late now.

Still contacts seem better than glasses even with this problem. I wore my glasses for a week as was confined, so to speak, what with the constant cleaning and the glare from light, even with anti-glare, coating, even bleary one eyed me, feels better.

With age comes the need for reading glasses, even with my corrective contacts, I still need reading glasses, I carry a pair in my bag, they have one arm and I rarely bother with them, I prefer instead to squint, if I still can’t read it then I ask a younger person if around, or just ignore, light has much to do with it too, after dark, it’s pointless trying, not only is it harder to see but my eyes and brain are usually too tired to translate the visual information. With this in mind I bought a bigger phone and I increase the text size whenever possible.

There is much to say about the visual disturbances and struggle to see clearly so I am making a note to cover that topic in detail, in ‘symptoms’ soon.

Waffle over,

Chris. xx

P.S, quick note:

Today I have two eyes and a fresh pair, my vision has a clarity that almost makes we want to lift my head back, like it is all looming a little close. I am therefore a little starey eyed, my eyes feel wide awake while the rest of me festers in winter mode.

Let the light in.

I had an epiphany this morning, like a sudden shaft of light, literally streaming into the room. I was woken by a door knock, turned out to be to read the meters, they still need to be checked alongside smart meters, apparently, my alarm had not yet gone off and I wasn’t feeling it, so I returned to my room where I faced the window and saw the morning light breaking through cheerfully. AAArgh it came to me in that second, I have shut the light out, it’s no wonder I’ve been struggling to rouse.

Fireworks have been banging away recently and one dog is terrified, as a solution I moved the screen I use to hide a section of the room for storage and instead drew it out along in front of the window. Making it mostly pitch dark, with a thin sliver of light where it doesn’t quite meet the end of the window. We have been snuggling up in this huge dog nest of a room for weeks now. I do think I sleep more deeply in the dark and it does feel cosy, and I have enjoyed that hibernating feeling.

Today it hit me like a punch in the gut, what a fool I’ve been, years ago now I changed my window dressings to let the morning light come flooding in over me as I lie in bed, morning, changing light is essential for me waking up. I soak it up as my brain gradually rouses and prepares for the day, I discovered this decades ago and have always ensured that the morning light washes over me as I sleep, until I am ready to tackle the day ahead. Currently I have a white slatted blind, that lets in a little too much light so I have added a black out blind, so that I can darken it if needed, it hangs halfway, I dare not touch it, as it will fall down, oh the curse of my DIY.

Sleep masks are a handy tip, they never stay on so allow you to switch off for a daytime sleep and have always gone by morning light.

Its Autumn, nearly winter, time to turn on the lights, especially the SAD light, time to run that as I sit and write or read or fiddle with crafts. I feel my eyes widen with this light, like my eyes are opening up a channel to my brain, it’s just one small thing we can do to help, and I find it works.

So, pull back those thick winter curtains, change them for thin light-coloured ones that let the morning sunrise through, change your bed position to maximise this natural light

Do all you can to make the most of day light around the house, spend at least 10 minutes outside each day, with your head and face to the sun, absorb that vitamin D, mostly learn to appreciate the brightness and banish the dark. Accept that winter means more sleep, don’t fight it, just ensure you harness the light and do as much as you can, soon spring will spring again and the longer days will bring more opportunities, until then, take it easy.

Let the light in!

Chris. xx

Who are you?

Yes, the question at the centre of it all, who am I?

Take away all the roles we serve and what is left?

‘It’s what we do that defines us’ aah the famous quote, well I am not Batman, but can I still be defined?

So, when illness compacted my life, severed me from all those defining roles, did I still have value. If it’s not who we are but what we do, then am I doomed?

Without a career or a job even, when illness makes that impossible, when life has been condensed to a small box of daily existence only, what then? Who am I? Who are we? The worlds useless? the left behind? the pitied? The defunct?

Ok so I had a child, that maternal role, my only grasp on respectable life, an echo of what could have been, what had been, what is yet to come. Yet still during school hours, who was I then, when other mums ran off to part time work at least, as I had tried and failed to continue with, what then?

How do we stabilise a sense of identity when we are a broken, agonised, dazed, mess? When words don’t come out right and we can’t get up from the bed. Lying there who are we?

Not a patient even, not a brave cancer fighter or victim of MS, with a condition to fight and rally against, no, just a pity filled mess of nothingness.

So, who am I?

During covid lockdown, the world has had a taste of our lives, taken away all the surety and company. All those working from home, relished the comfort of it until they had been weeks without seeing anyone apart from the supermarket front line workers, bravely risking lives for minimum wage and zero hours contracts.

Take away our main vein of identity and who are we? How do we value ourselves?

I have found and lost and found myself again and again, currently I am defining myself as me. ‘I think therefore I am’ simply, I exist. What I think, how I feel, these things matter, what I do connects to what I think and feel. Who we are is an amalgamation of how we think and value and what we physically do. We don’t all have the luxury of living the lives we envisioned for ourselves or dream of; such satisfaction is a luxury for most of us, earning money to pay bills is the priority, lives lived to their best socially and economically are for the privileged, like Bruce Wayne and his love interest, Rachel, the stuff of films and fictions unless we are lucky to be born into relative affluence.

So, what when we cannot pay the bills, what then? Fortunately, we have a social security system in the U.K, what a knock to our value system when we are forced to claim this, our system shames us and marks us with failure, yet there is a freedom in less, as there is in more, and a life of value and worth can still be lived, we must dig down deep to our essential core, but then true self-worth is attainable. Have it taken all away and still survive, that’s the greatest achievement. Learn to live in spite of it, that’s a neat trick.

Take it all away, the roles, the image, the title, the relationships, what is left?

Us! As we really are, emotional, honest, aspiring, fighting, surviving, as we feel and as we think and more importantly as we treat others.

Who am I?

I ‘m Chris.

Who are you?

Chris. xx

Marshmallow.

Who doesn’t like marshmallow? Right? Sweet sticky kind of fluffy stuff. Well imagine that a huge chunk of this is stuck to your feet, not the easily dissolving stuff either.

Every step is a bouncy, springy motion, the bounce goes up to your knees and you feel the wobble throughout your whole body. You know when this symptom happens you need to lie down and soon. Ever been trampolining? It’s a little like that, yet constant and with no easing off.

Your feet push down into the mallow before bounding up again higher than the pavement. Is this how it feels to walk in space? If the moon were made of cheese, is this what it would be like to wander upon it? All these spacey questions to go along with the flying and sinking motion.

There can be varying levels of this sensation, it starts with a gentle lulling to the side, a little spring in your step and gradually if you fail to abate it, it grows and spills like an overflowing pot of marshmallow, bubbling and curdling, pushing you with every step you manage. Ping, you flirt into a post, hedge, wall, anything nearby, your ship needs steering, but nothing you can do helps. Unlike the snooker balls rebounding from the pocket, direction cannot be predicted, the angles cannot be measured; aim for the left and the foot deviates elsewhere.

Throw in vertiginous, nauseating, waves, that, feeling you get when you step off an amusement arcade ride, the throbbing and yet dull aching pain, the twist sensation of your ankle. You get it all just for good measure. If your activity continues it will worsen to the point that you are flying in space, unrooted and unsafe, your equilibrium is set adrift like mercury escaped from the old thermometer and you are heading for a crash, physically, mentally, metaphorically.

Lay down, lie down, switch off now! that’s your only option, do not press on, do not pass go, go directly to jail and stay there. The only solution to this symptom is prevention, you must avoid it at all costs.

Prevention here begins with shoes, yes you heard me, shoes are of tantamount importance, the shape style and particularly the soles inside and out. Gone are the days you can slip your feet into any pretty thing, now is the time for the sensible shoe. You need arch support and comfortable width, with vibration sucking material underneath. Ensure there is no bounce in your shoe, but rather, a cushioned absorption, take solid firm steps, that fix you in place and reduce reverberation of motion. Experiment to find the perfect sole and stick to it. Vanity may pull you towards something other but don’t fall for it, we have few things in our armoury with which to fight this curse, but suitable footwear is one of our weapons.

For me it is Birkenstocks in summer with cooling cork and Doctor Martin boots in winter, with ankle support that keeps me solidly standing, a few variations in-between, but all quality footwear, in spite of the expense.

The other weapon in my armoury, is humour; laugh, as you fling around, people pay for this sensation, you get it without having to visit Alton Towers. Think of mellow songs, ‘They call it mellow yellow’, floats through me and I picture Mr Soft, an image from an old tv advert, or Marshmallow man from Ghostbusters. Picture him exploded and splattered, you can defeat this, imagine eating all that soft lovely gooey sweetness.

Chris. x