Now, just a day.

Just a quick one to say what’s going on with me. I’m a mess, a giant slug or sloth or such like, I’m surprised to find its Friday, I’ve been in bed mostly my switch has flicked hibernation has triggered. I’m up today but not ‘at em’ and after this I will be lying down again.

I’ve made a list, today I feel the twinkling tingling of energy regrouping, my battery is charging with this I know I have done the right thing. I didn’t collapse I stopped. this is week two.

It’s not so bad, I’ve watched or rather stared at many tv n films in bed snuggled up with the dogs, I washed once I’ve eaten, I’ve done a few really needed chore but the place is a state.

So instead of falling into the pit of despair, I harnessed it, so I’ve written my list of things to do when I feel up to it, today I am getting there, I’ve walked dogs n that’s enough for now,

In this mode I do only the very necessary and something easy that brings me joy,

Joy is the key. Being positive is a must. I tell myself I am choosing to relax, to do things only for myself. That way I don’t feel sorry for myself too much

Every thought of activity brings the word can’t into my head, big letters looming. I can’t, I can’t I just can’t. and there is nothing to do until I can and that will not be far away.

P.S.

I am back in the library, which is a good sign of things going better, I just spent a long time editing this as it was a mess, reflecting the state I was in, I whipped this off at home on the laptop, just to help stop myself from going mad.

Glass eyes or plastic?

My waffle today is on the topic of eyesight and in particular glasses. I just have to ramble this out as this morning my glasses are driving me mad.

Firstly, I got up without putting them on, I went about my morning routine oblivious, quite literally. It was only as I sat down in front of the tv, that I realised, it’s a hazy day for me today so was hard to tell.

Glasses feel weird to me now, I usually wear contact lenses; I keep one pair in for the whole month, sleeping in them day and night, it was a surprise to me that I can do this but since discovering this from a lovely optician some years ago, I have not looked back, literally.

Recently my eyes have been very dry, and I felt it was time to give them a break, I ordered new glasses as my back up pair are unattractive, and I don’t like to wear them in public. I spent the weekend inactive in them, so it is only now I am putting them to the test, what a pest they are, firstly, I seem to have spent the morning up and down stairs to find them. Then they are just weird, now I regret the vain choice, they are narrow, and I can see the world around them from the corners and all around making the world feel very sickly. Then what’s with the steam? outdoors they cloud over and returning indoors even worse, what a pain, and the rain, now I remember why I always carried a cap with a wide peak.

So, thumbs up for contacts, they are a necessity, vision issues are a part of this lurgy and now I remember why I signed up for a monthly scheme to keep me in eyes, yes, I think of them as eyes, I have an astigmatism and so they are weighted and need to be in one place, I spend a lot of time, winking them back into position while this is irritating, compared to glasses I am reminded not to complain.

I spend my life feeling blind as a bat, like a mole coming up into the blinding sun, seeing only to the end of my nose. There is a delay between my vision and my brain processing the image, I see and don’t see, if you get me. Anyway, more of that another day, for now I have vented my frustration at these pretty frames on my face, reminded bigger is better for glasses, but constant plastic stuck to your eyeballs is better still.

Chris.x

The Weekend.

Well on Friday morning, I updated you on my flailing condition, so here is just a quick follow up note. I spent the time since then and in fact the whole weekend, out of action, in bed mostly, I achieved nothing.

I snuggled up in my nest on Friday and into Saturday, various Netflix shows on the TV, don’t ask me which, or what happened in any. I had forgotten that watching requires energy.

I set my alarm and walked the dogs as needed, then we cocooned, it was Bonfire night, so fireworks were exploding each night, one dog is affected by them, so my room has become a dog nest, she can hide all over the room, under the bed, down the side, under covers at the end, I have screened the window, so it is dark, and no flashes made it through and then, well I slept, the sleep of the dead, the nothing can disturb me sleep, the no choice in the matter, battery empty kind of sleep, until…

Here I am again, up and kind of at em, telling you this in an effort to motivate myself, I woke to the same mess I had ignored last week, everything abandoned, like a ghost house. One of the draw backs of such sleep, the work doesn’t get done it just waits like a malign tumour, growing. I drank coffee ate muesli and got stuck in, just doing enough, then running away, getting the hell out of dodge, as fast as I could and here I am.

Well, it’s time to dance, yes dance, I have started a variety of dance exercise classes, I was going to skip it today and organise the house, then I saw Dr Michael Mosely, on tv talking about the medically positive effects of dance and here I am, signing off for now, so that I can stretch and move to lovely music.

So long for now.

Chris.xx

Pause for thought?

I have reached a pause point. After a number of weeks of being organised and on track, meeting my routine expectations, I have hit a lull. My energy is sapped my thoughts have disappeared; thinking is too much of an effort, as is doing. I am declaring rest time before I fall into the quagmire. I write now with one hand in a support glove, my good wrist splint has vanished, my wrist feels fractured even though I know it is not. The dull aching pain with shooting explosions will cease as magically as it appeared, I have done nothing to exacerbate it, unless writing these few paragraphs is the cause. My glands are up, creating that ghastly double chin look, small rocks in my jaw line, marking time, awaiting the opportunity to expand and begin the roll to viral tonsilitis or flu.

I’m at that point, I move forward, feel a sense of order and calm, even dare to hope, my balloon is rising and then the sharp pin goes in and out and my balloon slowly deflates. Little by little, I feel the power leaving me like the helium seeping out.

I can write nothing but this, I will return home, (I’m in the library, a doctor’s appointment got me out early, that’s another story.) baton down the hatches, turn on the heating and pretend to myself that it is nice to snuggle up on a cold day, that I don’t want to write or dance, or chat or shop, or walk with the dogs, or read, or anything at all. I will put a simple meal together, a rarity (again another story)in itself, eat and sleep and wait and recharge my leaking battery.

Til the next time,

Chris. xx

Hapless Halloween.

Well, it is Halloween today and I just want to moan. After a cold start to Autumn, it is now warmer than it should be, when we want cold dark spooky nights, instead we get sweaty breezy evenings. Clocks were put back and its suddenly dark early, the town’s Xmas lights have been hung in anticipation and fireworks are waiting to rocket.

I dressed up in full costume on Saturday night, ready to attend what was described as an ‘immersive cinema experience’, what a fool I was, standing in a queue of young people dressed as a bride of Dracula, more specifically, Lucy from the novel, with barely a sign of Halloween effort, even my own family had wimped out, my date hid in line with his full head, wolf mask, which he removed once inside. Way to feel exposed and insecure, hopefully my eye mask and wig provided some anonymity.

Well, what a license to print money the event was, a great idea and I could see how to make it into something fabulous, as it was though, in an old seedy nightclub, recently renamed so I had no idea where it was until arriving, it was wholly disappointing. Basically, they played an older weaker horror film while a few people dressed as random Halloween characters wandered around, pretending to be scary (I was much scarier than any of them) and handing out cups of popcorn and dubious hotdogs, all very dark and hard to see. The most uncomfortable seats were made worse by the cold, it was freezing, and I was thankful I had my cape to cuddle into. Still, we had paid, far too much, and we had two and a half hours to make the most of it and believe me I tried.

Why is it these events seem to always disappoint, is it the area we live in, devoid of culture, or is it that my expectations are too high? I just wanted to have some fun. I love horror movies and tried to get into the jump scares of the film, ‘The Conjuring’ but I was cold, in pain and bored. The most smiley Vampire, I gave it my all for my family companions sake, as though I were responsible for this mistake, ‘hadn’t I read the information?’, Well yes, I had, it described, live acting scenes and movie references, how was I to know that meant characters walking around and around? I only paid, I didn’t even book it, it hadn’t been my idea, they all could have read the information before accepting the invite. Why was I left with the extravagant cost of it for us all, I had expected each to pay for their own tickets., now I held the weight of all of their disappointment. Ok Chris, make a joke, hiss like a Vampire, bite a neck, offer a comic commentary to this much viewed film. I tried it all, but there was no covering that this was a failure event, we were glad to leave.

Socialising with this illness is hard, sitting still for any period of time, concentrating and paying attention is all a herculean effort at the best of times, I have mostly given up on attending events of any kind, it’s just sometimes, you can’t say no, sometimes you don’t want to say no. This was one of those yet now I am left with a heavy heart, the disappointment and exhaustion of it taken a heavy toll.

Our male companions had no difficulty letting their negative opinions out, the critical descriptions of the obvious, as though we are blind, I see yet I raise my positivity, to make the best of a bad lot, for people who like and care for each other should be able to have fun no matter what their surroundings and it is this that haunts me. I am most irritated by my date’s inability to see past our predicament and enjoy my company regardless, yes, its uncomfortable, yes, it is too cold, yes everyone else are drinking alcoholic fishbowls and we don’t drink, yes, it is disappointing but still, shouldn’t we have fun together?

Hapless as our Halloween event was, people are still decorating their houses and this year it seems more are doing it than ever before, (a result of the Cost-of-Living Crisis?) why do we try so hard, make a fuss, because the more we put in, the more we get out. It is that simple.

Right now, I am left wondering, if I put in more than I see in return? Time will tell I suppose, I know I must keep trying and doing and hoping. If I am forever to be the Fancy dress freak in amongst a queue of blandness, so be it.

Chris.xx

Sausage Sizzle

It’s the start of a new year and far from BBQ season, and yet I still think of sausages sizzling. My fingers swell and remind me of the childhood song sausage in a pan,

‘sizzle, sizzle, sizzle sizzle, sausage in a pan.’

They feel fit to burst, the pressure a constant symptom. I watch them swelling and fattening and feel they will split apart at any moment, burst open like a bursting sausage on the BBQ. The heat grows, intensifies, movement becomes rigid, they lay out in front of me like alien digits, useless red skin straining against the inflammation, ugly deformed, making my hands feel huge and incongruous to the rest of my body, as though they were sewn on by Frankenstein.

They dangle at my side, I feel the blood rushing down, pumping and filling them as though they are an empty marigold, cleaning glove, growing solid and stiff. In my pocket I hold them up to soften this feeling, the claw is on its way, beware the claw, no activity for the hands today, yet how is that possible? My hands move instinctively to the myriad tasks that are implicitly needed.

Once or twice a year I treat myself to a nail treatment, I have acrylic nails fitted, my nails will never grow to any pretty length, this is something I learned from my teenager, nice nails. the process is an endurance, it hurts, the technician will man handle me, no matter how hard I try to hold or bend my old crone fat sticks, they pull and sigh and seethe politely, annoyed at my inability to manipulate my fingers to their bidding.

This suffering is worth it when the next day I see my hands around me and feel for once that they actually belong to me, the long nails ease out my perspective and I can look at them without seeing the pain. I have never yet, returned to a nail bar to have them removed, rather I cling to them until the point they either fall off or grow out. Vanity, I know but just a small attempt at normalcy that warms my soul.

As I am no longer working, in the traditional sense, yes, parenting and caring count as work I know, I simply cannot justify this beauty treatment expense, each birthday a kind Aunt sends me a monetary gift and I use this for nails as an annual treat, they last well into the xmas season and bring vain cheer to me. Other times I admit it, I blow money to feel good.

Mostly I decorate my own real nails as often as I can, in an effort to recreate this, force myself to make that effort so that I can save myself from the hideousness I feel when I look at my hands. In making an effort I am valuing myself and taking time and care for myself, so it’s an important little ritual to me.

Meanwhile my fingers seem to bubble and hiss as my skin stretches and knuckles inflame, but I will not be defeated, I will have control of these extraneous bangers.

(I found this in drafts and finally edited it, hence the New year reference, honest if not speedy.)

Chris xx

Phillip Pirrip! (PIP)

Forgive this literary reference, it just comes to my mind when I think of the subject of, yes you guessed it, PIP!

Personal, Independence Payment. My only advice on this topic, if you don’t have it, haven’t applied ever, apply for it now, right now, no hesitating!

It is not means tested and so it is not linked to your household income, if you are chronically unwell you are entitled to this. It is like a golden ticket, it opens doors to other benefits and support, mostly it gives you a sense of validation and helps with acceptence.

I have learned this from experience, I have been the proud person, in denial and always thinking I will get back to a career in teaching, that I can earn enough money part time and I don’t need it. It’s simply not true, if you are ill, you are entitled, it’s that straight forward.

Do not be put off by the system, ring the number and your claim starts from that date. Use the Citizens Advice Bureau if you can, they can do it all with you, it’s more difficult now, they are only doing online and phone support since Covid, but do not be put off. Other agencies, can help also.

My first and second claim were turned down and it was 10 years after my first claim that I was awarded this support. I regret waiting so long, during this time I struggled on with only health benefits, raising a child while ill and alone and frankly I could not afford to heat the house never mind walk around one supermarket and buy what we needed and have a taxi home. I am unable to drive, for those of you who are car dependent there is the Motability scheme attached to PIP also, I have no experience of this and so can’t advise.

I heated the house only when my child was home, all day through winter months I would wear hat gloves and sleep under numerous blankets and quilts. This condition requires warmth and warm air, my PIP award felt like a gift from the universe, I put the heating on, for me, just for me and cried at how little value I had in the world. This financial support has changed my life and our household, it validated my condition with the recognition that I am classed as being in need of help. It allows me to pay for help at home, from garden work to cleaning, whatever we need within reason.

With this magic letter I claimed a free bus pass, now that I could afford to pay the bus fare, I don’t need to, this in itself has been a major help, now I jump on and off from one stop to twenty. I sit in the priority seats, the first you come to, with confidence, I have a disabled toilet pass key, I call myself disabled and embrace myself. No more the vicious fight within; someone has assessed my symptoms and condition and has decided I am entitled to help, what a huge turn in my tide, I am no longer, undeserving, malingering poor, that Dickens shone a light on in a cruel and misunderstanding Victorian era. I am in need and supported, deserving of the status and money this award brings.

So don’t be me, if you don’t have it already get that application done, if you are refused at first, appeal that decision, keep going until you get it. Your illness has already made you disabled, this award merely supports you as you deserve.

Go for it and expect great things in life.

Chris.xx

The literary reference is of course, the character Pip, from Dickens’ ‘Great expectations’.

There’s no point crying over spilt milk.

Ok, so this title is misleading, my milk isn’t spilt, it’s lost!

I arose this morning and happily poured out my bowl of morning muesli, I had missed it yesterday as I had forgotten to buy my milk, leading to an extra shopping trip. With confidence I open the fridge and reach for it only to find it is not there. Whoops now what did I do with the milk? Well, my brain has no idea, I remember buying it, did I lose it at the counter or leave it behind in the store? No idea, my mind is blank.

This loss of memory function is another fun feature of my lurgy, I search the kitchen, look in the freezer to see if I mistakenly put it there, I find the receipt, I definitely paid for it. I ring my mum, did I leave it in her car? all to no avail, damn it I am addicted to muesli and was looking forward to it, I give up looking, find a carton of soya milk and reluctantly pour that instead.

I have issues with dairy, have never liked milk so have tried the alternatives, from soya, to water on my oats, sweetened, unsweetened etc. Currently I am settled on lactose free milk and find it doesn’t bloat me as normal milk does and my addiction to varying cereals continues. Useful food group, easy to prep and eat.

I sit with my warm soggy muesli, forcing it in while finding it quite unpleasant. I have no way of knowing what I did with the milk. Memory loss is a constant problem, I have lost shopping bags filled with food, lost house keys as soon as I’ve used them to enter, left doors open all night, you get the picture. People make jokes about getting older and happens to us all, but I am up there with the elderly on the verge of dementia, and it is not fun. I use lots of memory tricks and routines to help, but times like this the milk is lost, accept, buy more and put it where it goes in the fridge.

Now as I return my dishes to the kitchen, what do I see? Yes there it is, in plain sight, sitting on top of the washing machine, just there on the side, in the centre of the kitchen. Boldly, unashamedly unaware of the trouble it has caused.

Chris.x

To the pain….

To the pain, means that every moment of everyday I raise a toast to the pain.

There is no one point of pain to focus on, when you identify one sharp pain, a dull throbbing one will be beating the background tempo, the overwhelming presence of hurt with no beginning and no end in sight is a constant and now you only notice the few blissful moments when you realise, it doesn’t hurt, before you take that next move and aaargh!

I realised recently that I have posted much about my symptoms and maybe this is quite depressing, so decided its time to add some positive tips on how to cope.

Pain relief, a contentious issue but my advice is to take it. I remember my first experience of Tramadol so clearly, I felt I had taken a magic potion and was freed from the crucifying agony. I was experiencing severe back pain then on top of the usual and all movement was a vehement torture, I vividly remember the sudden dulling of the pain followed by no pain and knew then that I had suffered enough, I had been brave but now it was time to stop the punishment and accept the medication. This is an opiate and that is scary, but just think of a woman in labour, there are those who opt for no drugs, I was one of those until it started, but who would advise a pregnant woman to go without gas and air at least. The pain is expected and so are the drugs to help manage this.

I am allergic to ibuprofen and so my choices are limited, if you find a pain reliever that helps, take it, carefully and respectfully and with your Doctor’s advice.

People have all kinds of advice for you generally, small suggestions such as taking magnesium or vitamin D, to varying diets, cutting out something and avoiding processed foods to hypno therapy and strange expensive medically dubious courses. There is always a someone to tell you they had it but cured themselves with juice drinks etc. Don’t let it get you down, in fact don’t even listen to it. Saying that now, how do I go on to give you the gems of my own wisdoms, well I am going to, so there. hopefully you will read enough to know that I write only from my wide knowledge and personal experience and have no magic answers to follow.

I will start with this.

it is hard, it will be hard and when you think you can take no more, it will get harder.

Accept this.

When you are crying with agony and confusion just accept, it’s hard, fucking hard!

Smile through the pain when you can, cry when you can’t.

Chrisxx

GET moving!

Yes, it is time I started sharing, treatments and helpful knowledge with you all.

Exercise is the most important part of my condition management plan. this may shock some of you, but exercise creates energy and that’s what we lack, so harnessing the power of the right kind of exercise with pacing and care is so important.

Now don’t go thinking about running a marathon, or 100 press ups, every morning, think small and start with minutes. This is where the GET comes in, Graded, Exercise, Therapy!

Now if we lived in a decent world, we would access a personal trainer with anatomical and medical knowledge, who would work us through a personally designed programme, with support. this would be the ideal treatment, we are entitled to such from the NHS along with dietary assistance, but hands up how many of you have been referred for any of these.

Maybe you are a lucky one, with an actual CFS clinic existing and operating in your area, for most of us we are left to negotiate the demonic depths of this diabolical condition alone, with merely the notion of such treatments.

Following a physical treatment plan is hard enough, having to devise the plan from our own imaginings in the first place is beyond hard. There will be those amongst you who lived their lives with exercise at the core, for you this sudden lack of ability may seem tortuous, but you must forget all you knew and start again from the beginning, as if Newborn to the world.

In my world I exercise daily, I started from nothing and built up over years, now I can almost look like a normal person exercising at the gym. Looks are deceptive.

Remember pacing? This is a must, if you are starting your own exercise programme start in seconds, up to minutes, from one, two and up to three. Less is more, make each small amount a part of your daily life, never be tempted to go for it, that way madness lies.

Yes, it is frustrating beyond frustrating, depressing too if you compare your efforts to other well people, but over time, in time, you can do much.

So, my recommendations? Stretching, gentle movement, repeatedly. Pilates was my lifesaver, I joined classes, my first goals were to get there, lying down is the perfect exercise, and I would do a little and rest, now years later, I can do all kinds of exercise and it is part of my life.

Major tip, if it hurts stop! Never work through the pain, your body is telling you to stop. Separate that all over general pain and get used to working with it.

Always do too little never too much. a little can be increased, too much can put you out of action and send you back to the beginning.

Exercise however you choose, indoor, outdoor, find what suits you best, find your own limits, most of all enjoy it, only do things that you like. Don’t miss who you were, think of who you are going to be, a warrior, survivor of CFS.

Good luck.

Chrisx