Sweary Socks

Recently the lovely man in my life, excitedly gave me a present, he likes to give me gifts and these show how well he knows me. What was it you ask? Sweary socks! Yes, literally socks with swear words on them.

Now those who know me know that I am a fan of the swear word, I just love the guttural sound of words like fuck, which is just as well as my dilapidated brain, likes to pop such words randomly into my sentences. I don’t know if this is a symptom of C.F.S or the Late Lymes, I believe myself to be victim of. Which ever, sudden bursts of swearing are now part of my life.

I have never feared swearing rather I believe it a useful part of our vocabulary and communication. Certain words hit the spot emotionally for us and I think this is important. let me be clear, I don’t go around swearing directly at people, words just slip out quietly within my sentences and I have no control. Maybe you too have this trait? It used to scare me, the lack of control, but now I embrace it, when within company I know will object or judge me, I simply apologise and explain, it’s part of my disorder.

Oh, the freedom of saying fuck aloud when you feel like, it’s very freeing, social convention is a construct Afterall.

Now back to my socks, what’s the point? One is printed with ‘off’ and the other ‘fuck’ and such like, the only problem is they are on the bottom of your feet, no one can see them. Maybe this was the point, but for me how very disappointing!

Well watch out Pilates class, I will be wearing my socks and pointing them in people’s directions as we lay down and await the start. wonder who will comment aloud or if they will just ignore. We shall soon see.

Train Track.

My first waffling attempts this week is on train travel. I had the pleasure and misfortune of travelling south, I regularly travel to stay with a family friend for respite breaks, yes, I take time just for myself, abandon the household and run away to rest. I recommend the same to any of you out there with caring responsibilities. More on that responsibility in time.

Well firstly I had an expensive taxi ride to the Station, arriving early for my intended train, I hopped on a fast train with only one stop, yes all was going well, I dragged my case full of clothes, all second-hand, new purchases, lovely things that made the grade to return with me. Sat in the disabled seats in-between carriages, these are handy, easy seats and I recommend them for short journeys.

An earlier train meant a longer wait at my main change station, Basingstoke, but this station has facilities and I sat down with the treat of a hot chocolate and a book, the second this week with the word ‘Cottage’ in the title, yes, I am on a theme in reading. Yes, these breaks allow me lots of lovely reading time.

Basingstoke is like the interchange station of the Southwest, a little like Crewe is further north, change here for most destinations. Yes, my Cross-Country train arrived on time, Yes, I got a seat near my luggage and facing the wrong way, the train reverses at the next stop and going backwards for long plays hell on my vertigo. I was so pleased and relaxed. Train journeys across the U.K have been plagued by problems for so long now, added to this the workers are striking regularly, rightly so but to no avail so far, another new Prime Minister, has deaf ears for workers. Phew I thought and started to dose: no such sleep for me though, at the very next stop we were stranded, an issue with the doors meant we all had to disembark and wait for another, feel here my internal groan reverberate!

My previous journey down had led to a tour of Birmingham station, when we were told to alight and reboard the first half of the train while the back section abandoned us. an impossible task that nearly caused murderous scenes on the platform, I was getting used to expecting problems, luckily this one only meant a tour of Reading station and an hour delay, with my fellow travellers we found our new platform and clambered aboard another train, this one with working doors.

I was joined in my priority seat by an older man, yes, always use the priority seating, even if you must ask someone if they need it and move them. Thats my best tip, that and get a disabled rail card, saves a lot of money and gives you the right to claim these easy seats, with extra legroom and near to external exit. Well, this pleasant old fellow, proceeded to talk and talk and talk and talk. Idiot me felt for his loneliness and let him continue, I usually sleep through these journeys, wrap supports around my knees get as comfortable as possible and try not to snore. I set an alarm, should I sleep deeply so as not to miss my stop.

I knew I would suffer if I stayed awake, but I just didn’t have the heart to cut him off. My mistake, as he prepared to get himself and his bulky luggage off the now packed, heaving train, a guy was sitting in the aisle between us, (two trains full of customers now on one.) he didn’t even say goodbye! just turned and started his spiel from the beginning again to the woman in front of him, so I felt stupidly used by Mr ‘Cornwall to Carlisle’ whose successful son wasn’t even eligible, what a waste of my kindness.

Train travel is hard, but better than being in a car, the extra space makes a difference, access to the loo, helps to. The vibrations overwhelm my every muscle and for days following I am shaking and rattling around, until the feeling dissipates.

The final hurdle was at my destination station, a Victorian original with lift a mile down the track, over a bridge then down again and along the track. why are solutions for the disabled so much harder than they need to be. Save that rant for another day.

At times, in the past I have been too ill to even contemplate travel, so I know I am managing quite well to be doing it, I just wish it was easier.

I made the mistake of catching the bus home from the station, learn from me, make life easier, take the taxi! I had the problem of a long taxi queue and a bus due, never trust those bus times even with the app. Another hour later I dragged my case up the hill towards home, feeling more like I have navigated a mountainous world than sitting on a train.

Here’s my tips.

Think of yourself! put your own needs first, no feeling sorry for passengers, take the priority seat, ask for help if you need it. Get that disability pass, it’s well worth it and gives you confidence to ask for help. If I can’t see my case, I may well get off without it, place yourself carefully. Plan your journey, have supplies water, snacks all the rest and always expect there to be a problem on the line, from leaves, heat, signalling to bodies being cleaned away. Yes, that happens all too often, do not ever let yourself be that statistic. Rest and rest until you need to take action and be prepared for long delays.

Well, this was supposed to be a little snapshot not an essay, so I will finish. Hope this hasn’t been too sensible and boring. I will get the hang of waffling less paragraphs.

Diagnosis

So, I remember the day of my diagnosis clearly, it was the end of the year 2000, finally I had an answer, or did I?

So, at yet another Doctor’s appointment, one of many appointments. one of many different doctors and surgeries. He turned to me and said, ‘have you considered the possibility, you have Chronic Fatigue Syndrome, M.E.’ well there it was, have I considered? What the? what did he mean, have I? Has he considered giving me a diagnosis! wasn’t he supposed to be the qualified professional, shouldn’t he be telling me! Fuming, I was fuming, not only by his lack of authority and substance, but by the mention of this illness, the ‘Yuppie Flu’ as it was known, the illness that nobody believes in. Fantastic!

On reflection it was a better one than my childhood doctor had offered 10 years previously, who said ‘maybe you just need more sleep than other people’.

I left that appointment, crushed, weary beyond weary, what was I to do? How could I get better from an illness that has no formal diagnosis never mind treatment, an illness that everyone thinks is in the mind?

Next stop was a book shop, the health section, the internet was not then as it is now, I needed hard material, it was there I found the book that inspired this blog title, ‘Living with M.E’ I bought this and another and crept home to accept my fate.

Thanks to these publications, I was able to see beyond a shadow of a doubt, that I did in fact have this illness. C.F.S, sounded much better then, than M.E, as that title had been so maligned and linked to jokes of laziness and mental weakness. I wept as I read, at the unfairness of it all but at the reality that it existed and was not in my head.

I vowed then to become the most knowledgeable on this condition, that I would fight it and learn how to live. I made notes and plans and sought to try every little thing that might offer some relief from the symptoms, somehow seeing it in black and white, published, made it real for me and so I began my journey of acceptance and discovery.

Chris.xx

Hip Hip Hooray!

Today I had a physio appointment for my hips, my doctors now have an on site Physiotherapist and refer all joint issues to her. It’s amazing , the practice has gone from never being able to get through on the phone and no appointments, to having something useful. My G.P practice is not unlike most in the country, its all part of the general NHS crisis.

Well I met a woman who moves exactly as I do and described the same pains and symptoms and wow, she had a diagnosis and treatment with injections for the pain regularly. woohoo I thought, Yes there is hope! She has Bursitis and it took her a long time to get it diagnosed but I felt positive and not put off with that, so I dialled my Doctor’s to make an appointment.

I am all for physio and have seen many over the years, I know my exercises to help and do them regularly within my stretch classes. I was not therefore put off by not being able to see a doctor, I thought it would just be case of appearing and being passed on to the doctor, just one extra step to take, metaphorically.

My first mistake was just to turn up without having prepared what to say, my taxi was late and I very nearly didn’t get there on time, as it happens I just joined the queue when a door opened and my name was called. I was sweaty and distracted but just dived in there.

I gave my spiel about my hips, we moved to the bed, she moved my legs around and up and down, while I said nothing. Here’s the thing, it hurt, it always hurts! I had hobbled in there, feeling my legs twisting out of my frame. I am so used to pain, I had shut my ‘pain gate’ ( a visualisation learned at condition management sessions through the DWP decades earlier)

Yes my pain threshold is high, I am accustomed to high levels without giving any indication, permanent exhaustion prevents me responding, I barely have the energy to register a smile never mind the contorted face of pain. Mistake number two, I don’t know what she was looking for, but knew my lack of response had blown it. Put me near a bed and tell me to lie down and its amazing I don’t fall instantly asleep. If Dentist’s didn’t keep talking I would sleep through every check up,

So finally with a smile she gave me her diagnosis, yes she actually had a decision to share and was quick to share it.

‘There is nothing wrong with your hips.’

What the fuck, is she deluded! I could barely contain myself. So because I can move my legs, made possible with lots of regular exercise and agony, there is nothing wrong! so all these years, all this pain, all these struggles to move, aah away with you, its nothing!

‘Nothing isn’t anything, its tasteless and its flat.

Nothing isn’t anything, Its even less than that.’ John Cooper Clarke.

How this poem rang through my head! Nothing! Nothing, Nothing! How can this be?

I am a quiet unassuming woman, yes sir, no sir, follow the rules and do what’s right and best for others, so I smiled and get her to verify, she means I don’t have Bursitis or Hypermobility, that my hip joint seems to be normal, she seemed very proud of herself, like that was what I needed to hear, she is probably one of the unbelievers who think my illness is in my head, and have I tried going wheat free!!

GGGRrrrrrrrrrrrrr!

I roar at the world and then cry to myself, deeply, inwardly!

Here it came again, my hope dashed again, no direct diagnosis, no possible treatment, just drag your self out of that room and carry on as ever with nothing!

Never has that word been felt so keenly.

Nothing, it is nothing, I am nothing, there is nothing wrong; and now I fall into the trap so they can say, ‘see its in your head, you are depressed/ overweight/ not taking the right care of yourself/’ Its all your own fault. There is nothing the matter so you can get better. Oh what a mighty can of worms that cheerful woman has opened.

Chrisx

T

.’

Seasons Change

Its September, that time of year when we all adjust to the end of Summer and prepare for Winter; only now it seems there are only two seasons, hot and cold. After a Summer of record high temperatures, we have plummeted into the icy cool chill of Winter. Already I feel it all over, ‘stiff as a board’ I think as I wake, as the chill freezes my bones. I arise like Frankenstein’s creation, a mish mash of limbs sewn together to make a whole; I lurch from side to side with such a lack of grace, I feel the weight of each piece of me and my heavy heart sighs deeply.

The air feels like a stabbing, grabbing lifeform sucking into my chest with each breath, clawing at my throat, my glands balloon, my nose twitches, my eyes sting. Yes the dreaded viral symptoms, the florid flu, the Flu that can not even be called the Flu, rather flu-like symptoms. Then the Tonsillitis that is somehow not Tonsillitis, that doesn’t respond to anti biotics yet rips your throat while swelling like a sponge within. All just slightly out of reach but stretching forward, this is where the careful balance of activity and symptoms meet, where one wrong move will lead to crescendo of crushing cruel Cold and Flu, with Tonsillitis and a little chest infection thrown in for good measure.

This is it, Winter, the season to fear, every bone and joint feels the cold creeping in and every alarm in my body is ringing with warning.

So to the big question, to hibernate or to persevere and push through. Inside I know that these symptoms will be present until Spring/Summer, can I face it this year? Do I need to opt out and hide away or can I brace it out?

Well its the end of the month and I have fought it off so far, closed my life down to a simple routine based around the home, avoided all unnecessary activity, taken time to relax and tried to find pleasure in small things. I have begun to heat the house, keeping the air warm through the night, can I keep it up? Will I get there?

Well that is the question, lets see if I make it. I shall tell myself not to think about the past, not to worry about symptoms before they happen, to be kind to myself to think of the positives.

Don’t think of the cost of living and energy crisis that is upon us, that heating the house all winter may be impossible, stay in the moment. In this moment I am warm and writing and optimistic.

Back soon with more rambling hopefully.

Chris xx

Hips of Glass.

This is a little description of my near constant hip pain. I like to think of it in terms of the Blondie song ‘Heart of Glass’.

Once I had a ….life…………..

Soon found out I have hips of glass!

In between………..

My torso and my pelvis with my twisted thigh….

Once I had a ……….

Soon turned out it was a pain in the ass. ( yes quite literally!)

ooh oh ooh oh, it hurts!

I can’t help it, this song just always springs to mind when my hip is at its worst. Of course younger readers will no doubt know the Miley Cyrus version of the song.

It’s that heavy weighted feel that overwhelms, with each step a cracking sensation as hairline fissures shoot through my hips of glass, I am just one step away from absolute agony as my hips implode into shattering, chattering, splintering shards that stab and skewer through my legs. Each careful footfall pre empts the empty glass bowl about to hit the solid ground with a mighty smash.

It can be a terrifying feeling that you are about to disintegrate and so I think of this song and visualise youth and freedom and fun, I let the tears of pain roll and I survive.

Chris.xx

Vomitous Mass

Well, I have been meaning to share on the topic of vertigo and sickness for some time; I’ve certainly chosen a good day for it as I was sick a little in the street earlier and can feel the retched bile rising, my whole-body swaying and the uncomfortable, curdling, heat soaring.

It can be hard to explain my daily symptoms as the memories fade rapidly, but it is easy in the moment of experience but of course then I am so taken over by the symptoms that writing about them is difficult.

So today is a sick day, as most days are. I take medication daily to control the vertiginous nausea yet still it overwhelms me. It is much easier to think of the times when I don’t have these vicious putrid sensations. every now and again I raise my head and think, hang on, something is different, before realising I do not feel sick at all. These few occasions are most usually following a long period of inaction or full bed rest. generally speaking if I move I want to hurl, even though I am empty and dry.

I really would like people to understand this feeling, the best scenario I can come up with is it is like when you were made in school to run around in all weathers, through mud and slime around and around, in the name of ‘cross country’; healthy exercise deemed appropriate by sadist P.E teachers, they standing watching in their snow suits while we freeze in our shorts and gym skirts,(Skirts for gym, whose perverse idea was that?) near the end of the torture, most pupils would be bright red, doubled over and feeling sick.

I already had my illness back then and so would’ve been hobbling round the track feeling I had a broken ankle or dislocated knee or other such injury while being determined to finish, trying hard to out run as many as I could. Or maybe like finishing a 100 metre sprint or your first ever HIIT or spin class at the gym; that sudden, all absorbing physical reaction that burns hurts, takes your breath away, you want to hurl violently, the heat and the sweat and the swaying, the intense dizziness and urgent need to sit down, lie down, pass out.

Maybe that does it, maybe I am describing this clearly and everyone can associate, I hope so.

Just in case I include a poem I wrote some years ago.

Vomitous Mass

Each day,
Every step,
Moon sponge walk,
Rightside Lean,
Ferry go round,
Sea sick sway,

Hurl,
Gurgle,
Whirl,

Gag,
Retch,
heave,

Swirl,
rumble,
tumble,

Hot sweat flush,
Cold shiver,
Taste of tang,
stomach acid pill
Procholorperazine!

Hunger forces food in,
despite the distaste,
instantly regrettable,
Back to bed

Keep going,
breathe shallow,
swallow down,
gassy burps,
Back to the bathroom
Release,
Cold porcelain pain.

When I read this poem to a group, the members made the assumption I was writing of a hangover, oh how I wish this was the case. A hangover has nothing on this; in truth I have in the past deliberately consumed alcohol to the point of drunkenness just to escape these wretched symptoms. A hangover is self inflicted and therefore controllable, waking feeling sick and linking it to a definitive cause can be easier than the constant confusion of this illness .It saddens me though to be misjudged as a drunk,.

‘Walk a mile in my shoes’ I ask in my head, knowing few would make it.

Stay strong, Chris.x


	


	





	

		
Random day
	


	
	

		






So it has been far too long since I sat down to write anything, I have been preoccupied with practical tasks and life has been moving along at speed; don’t ask me what I have been up to, I have no idea and couldn’t answer without much pondering and even then it seems strange even to me that I haven’t found the time to put thoughts to the page. 





I am sitting today in my local library, I have set out the challenge of booking a pc session there in order to make myself, make time for this. I have a notebook brimming with ideas and things I want to share and if I am not strict with myself I may never get on with it. Starting this blog has given me a voice and a purpose and I really want to make more of it. what holds me back though? Why do I seem unable to prioritise this project? 





Oh yes, it is back to that…I have CFS and all activity is hard! Anything outside of normal survival, necessary action is even harder!





Unlike me, if you suffer with this condition, do not beat yourself up for the things you see as failings, as compared to healthy humans, rather celebrate all of your minor acts of life. everything you do is an achievement, anything extra that you do is magnificent.





We will get there, I may not write often but when I do it uplifts me, changes my demeanor and makes me feel good, over time I will learn to channel myself and get into a regular healthy routine.





More to follow…. in time…..eventually!





Chris x

	


	





	

		
Blooming Blooms
	


	
	

		


Photo by Harry Cooke on Pexels.com





So the Cherry Tree Blossom is beautiful, our tree waves its pink fingers in a friendly announcement, Spring is here, summer not far behind.





Here’s the thing….





Allergies!! Aaarrgh! I am allergic to everything!





A few weeks ago I put myself to sleep accidentally for four days, how on earth you may well ask. Stupidly I had moved a small bunch of Carnations, from the well ventilated kitchen into the living room. They were my daughter’s birthday flowers and they were so colourful and pretty I just couldn’t resist giving them pride of place. Big mistake, the air flow moved their lovely scent around the house and upstairs to my bedroom. I was like Dorothy in the poppy field and just fell into a drowsy overwhelming state of sleep. Eventually I worked out what I had done and moved the vase of endlessly flourishing flowers outside, and with that the spell was broken and I was able to awake and return to life.





So lets talk allergies, I am allergic to all scented products, flowering plants, trees, grass anything that grows and all pollen types. Just changing washing powder can put me to sleep; over time, I adjust to mild scents and seem to build up a tolerance, so I am ok so long as I do not change products. My symptoms can be an inordinate drowsiness with dreamy drugged feeling sleep to follow, sneezing, wheezing, eyes streaming is another lovely reaction and throat swelling, cold and flu onset feeling. To add to all that, my skin itches, skin rashes flare and inflame with a feeling I need to scratch myself out of my very skin.





I take prescription anti-histamines daily and this helps with my skin reactions, but each springing spring my other reactions explode. Throughout the season I rely on other allergy and hay fever treatments and wait for my body to adjust and stop attacking itself. 





Sometimes it is hard to identify the difference between usual exhaustion and allergic reaction, I tend to know the difference when I wake and feel good to go in the middle of the night, air quality is so much better and I spent some of my earlier years wondering if I were nocturnal. I am out of day/night reversal patterns and so the difference is clear but for those of you trapped in this negative cycle I say, take an anti-histamine at bed time for a few days and wait and see if things improve. Oh yes always take such pills at night as even those that claim non drowsy effects could put an elephant to sleep. Nasal sprays are a good compromise, remember to always pre-empt symptoms rather than battling them head on. Sorry I can not hold back on this advice.





The blooming blooms of my glorious Cherry Blossom tree create a dazing wave of scent that sends me directly to bed. Each morning and throughout the days, I stick a red light therapy contraption up my nasal passages, the light glows out in a cross between other worldly clown or attack of the mini Lightsaber  but strangely, thankfully this does work well.





At this point I am hearing the purist cries of other sufferers of this maddening malady, telling me of local honey, magical herbal treatments and the like. Believe me I have tried all and now I am sticking to my current regime as it works for me, so much so that I write this from the shade of my garden surrounded by nature budding and bursting and down right beautiful, with no unwanted effects. Yes I am awake and as alert as I can be.





 My message to others is to fight through the initial and ongoing difficulties and embrace nature in all its forms. Fresh air is the best remedy!





Well that’s me wiped out for now, back sooner than before, hopefully I am in a pattern now. I am off to lounge and rest and watch the birds collecting for their nest builds.





Take care and enjoy the sunshine,





Chris xxx