New Year!

Well a happy new year to you all! Yes I know its March and so a little late to say, but this is just how long it takes me to get back into an even routine, enough so that I am able to think my thoughts, never mind share them here. The natural world is bursting to life with spring growth and even the sun has been shining.

Finally I am able to announce, hibernation is over. Now is the time to shrug out of my duvet, my duvet like coat and raise my face to the sky. Vitamin D soaks through from those mild sunny rays and in my soul I feel that summer is nearly here.

For all the talk of global warming and the famous climate deniers, it seems clear in the seasons that the world is changing; Autumn and Spring are loosing out to Winter and Summer. I often ponder, how different I might be if I lived in a warmer climate, although in the past I lived on the South Coast, where it is much warmer than here in the north; I just remember being even more frustrated and depressed that I was trapped in bed while the beautiful days rolled by, the sunshine blinding through the curtains as yet another reminder of my bodies failings.

So how was the seasonal period? I ask myself. Can I even remember now? It seems wrong somehow to work on this blog and yet to have left out a whole period of life. I remember the lovely lead up, the Christmas films the seasonal cheer, the snuggling down against the cold. The raising of hopes for the future, the dreams and aspirations for the new year ahead.

The reality, fighting to stay awake, all the extra chores, the rushed shopping before the next Lockdown. (This another topic I have so far avoided, its on my list.)The extra effort the, enforced joviality and the looming sense of failure and disappointment as the twinkling lights fade and the dark swoops in.

Yes maybe it is best I avoid this festive topic, as I feel me drifting down the rabbit hole here. Let me just say, these national holiday periods can be very tough of those of us with invisible disabilities. All changes to routine and extra expectations can be a recipe for disaster. My advice to all CFS sufferers at these times is to keep it small, rest often and be firm with those around you. It will all soon be forgotten! Sounds like good standard advice for all, now I mention it.

Well I have wittered on enough I feel, no real structure to this one, just trying to get back into the swing of things. My optimism levels are high, the sunshine brings with it a brightness that fills my soul and I feel excitedly, mentally, energised, awaiting all that this year may bring.

Back soon, I hope,

Chris. xx

Background.

I have so much planned for this site and had hoped to have added much more by this point. I realise now that the slow pace is a part of my condition and therefore its something I must accept. So with this in mind I shall condense a background history of my journey through life so far. Hopefully this will add context to my ramblings and give a taste of topics to come, eventually.

I suffer with CFS/M.E, Fibromyalgia, Late Lymes, with an undercurrent of other conditions, Asthma, PCOS, IBS, Neuro impairment etc…

I believe my illness is the result of contracting Lyme Disease, age 10, this is something I only became aware of more recently, it makes sense and I can track and match the initial symptoms to this time period. Maddeningly, this is something I can not prove after all this time, I can tick off all the symptoms on a list of Late Lymes and refuse to give up hope.

Age 10, when I began to fall asleep in school and had constant viral symptoms and weirdness, I was repeatedly tested for Glandular fever and filled with antibiotics. Back then people had barely heard of M.E, so I struggled through my life undiagnosed and pushing myself. My health impacted every significant milestone, missing much of school, I did well enough in exams, but no where near to fulfilling my true ability. I accepted the easy routes, thinking I was just Lazy, being made to feel that was true. A-Levels were a collapse, fail and retake situation, and so I started university late, which too was a collapse, and extend experience, I limited myself to studying Literature as a more manageable course rather than pursuing my real passion of drama.

My total collapse during this period lead me to thoughts of suicide and thus I was diagnosed with depression. I always felt there was something more to it, but the closest I got to an answer from a number of G.P’s, was the declaration, ‘maybe you just need more sleep than other people.’ With this I accepted I was depressed, I surely was after all these years.

I continued my educational journey, completing a P.G.C.E in secondary English, I pushed and pushed through this and it was sheer determination that got me through. Following on from this, I finally found the life I had hoped for, I moved to the south coast and found freedom in my total independence; I survived a year of teaching and passed my NQT requirements, I truly thought I had done it, that I had beaten depression and all was well. That I spent most of my time not working, sleeping, usually still in my clothes, was just a niggle in the background.

In my second year of teaching, my body conspired against my arrogance and shut me down completely. Finally I was diagnosed with C.F.S! It had a title at least and sounded much better than M.E., which most people referred to as YUPPIE flu, but was still a disappointment, having an illness that few people knew about, with no testing or cure, wasn’t exactly comforting, but it was a start.

I read every book I could on the condition, the internet was not then as it is now, decided to become my own expert on it and determinedly began changing my life around it. During this time I was counselled into believing this was a psychological condition, that I was sabotaging myself by occupational health and decided I must resign my full-time position. I think back in horror at the injustice of it all, I should not have resigned and should have received real support.

In amongst all of this I fell in love and ran head first into the comfort and care of an understanding man. I gave up my life and moved again, it was nearer to family and seemed to make sense, despite all my hard work to get away from the area previously. I worked part-time, in teaching and built myself back up to a point of living.

All of the choices I have made were impacted by my health as was this relationship, once my health improved it became apparent the relationship was a mistake, we were completely incompatible, so off I went back into the world alone, although not for long…

I became pregnant with his child as we comforted each other physically, during our break up period. This was a huge shock, my hormonal problems meant that I only discovered at 10 weeks, my body seemed to have already decided and so I took on the challenge to have and raise this child, knowing that I would be doing it alone, which went against, everything I had ever thought I would do, but well that’s hormones for you, I was nearing 30 and my biological clock was tick-tocking loudly.

This next phase of motherhood, brings us to present day. for the last 17 years I have been a mother first and foremost. There have been many obstacles to over come, I continued to work initially and at other times, but it just became too hard. Surviving the benefit system has been a trial, but since finally being awarded PIP more recently, financial pressures have eased. I love being a mum, I had such hopes for my girl and worked so hard to provide a stable and normal home life.

This cursed condition reared its head mightily, as my daughter has inherited my condition, she spent the last 3 years trapped in her bed, together we are making progress. It has been a hard journey, but thankfully times have changed, the condition is understood and taken seriously, she has had the medical support that I myself was denied. Through her diagnosis and treatment, I have learned to be kind to myself, to stop pushing and punishing and to accept.

So here I am, ready to bare my soul to the universe, to explore and share my journey, for hers is another tale to tell and I am leaving her space to tell it in her own way.

For me, this is a kind of therapy, I hear the words I type for others more deeply than the same words spoken to myself. I aim to give a message of hope, of survival and times of triumph. Despite this difficult background I am still striving forward wondering what new adventures lie in wait.

Thanks for reading,

Chris. x

Twister.

Do you remember the game, Twister? I grew up in the 70’s and 80’s, a time before mobile phones and instant tech, a time when boredom was an accepted part of childhood, when parents simply expected you to entertain yourselves, paying little or no attention.

Twister was a stalwart of our generation, try as you might to play it alone, it required a good number of people to get the most from your entangled situations. I am sure it is still around, but for those who have missed out, it is a play mat of coloured circles, with a clock face spinner board, in turn you spin and it directs you to place a body part on a colour, it climaxes in a contortion of limbs, all trying to hang on to position.

I now play my own version of this family game, as I move, Left leg, red! Very red, red for pain and stop! Right ankle, red, and by this I mean right wrist, my neuro symptoms have me say the wrong thing even to myself, as I move around, I identify the red areas and find solace in the green, right leg, green now after a week of red, hence the now red left leg, all that compensating has a cost. I put on another support bandage, swallow pain pills and try to move as gently as possible.

The hard part can be naming the areas anatomically, I know when its really bad, when body parts I can not name are shouting out red to me. Breast bone, red, red! Sternum, red the muscle under arm pit, knew that name once, red red and red! But right knee, green today, so hey.

There is rarely a route cause link to these seeming injuries, occasionally something as simple as carrying my bag differently, did that once and couldn’t raise my arm for a week, was nearly sent for x-ray, suspecting dislocated shoulder. Crossed my legs for a few minutes, felt like my thigh muscle was been flayed from the bone for days following. Such causes can be so slight it can be impossible to avoid, once a red spot is up, your whole body works in overdrive around that area, thus triggering a Mexican wave, of pain around the body.

And so as I try to function, I play my game of Twister, knowing if I played the real game, I would be a collapsed, immoveable heap, remembering that I was never very supple and often found it too painful to play, ironic then that I should be trapped in the Gamemasters clutches and now forced to play daily.

So with fingers, right hand and left, now in the red zone, from typing, I retire back into my support gloves and say goodbye for now.

Chris. x

The In-between.

Well hello there, It has been some time since my last post and thought I should try and add something, so I will explain where I’ve been.

I’ve been in the In-between!

This is the place to get lost in and is a struggle to get out of, not unlike ‘The Further’ of the insidious films.

This is the realm between realms, a place, neither one thing or the other. My mental cognisance has been quite steady yet my physical capacity has had it. During these times reading is out but I can watch TV, only light simple things, generally laying in bed as my body will not move. I am unable to sleep for long periods and experience feelings of boredom, yet if I try to do anything, my symptoms raise up and I find myself crying in pain, I try to tidy up but fall over myself, drop and smash things and generally cause chaos, hence the laying in bed with TV on, trapped in a state between full wakefulness and sleep.

And so I name it the in-between, In my head I strain for activity while knowing such desires are futile. Instead I relax, snuggle up with a dog on either side and reruns of Law and Order, so old I’ve seen them countless times, still cant remember the conclusions though, just recognise I’ve seen it before. In my head I write this blog, and wait and wait, sleep and wait.

From this phase it can go either way, up or down, as its nearly Christmas and I am determined to be awake and enjoy it this year, (that’s a goal every year, with limited success rates) I settle into the ‘In-between’ the space between living and ultimate suffering, a comfy space if you can let go and give in to it.

So that’s where I’ve been folks. I’ve learned to think of it as a holiday, though won’t ever be sending, wish you were here, postcards!

So until next time,

Chris x

Mobile Phone

Part Two

I am now using the mobile analogy regularly. It just seems easier as it removes all emotion.

I am an outdated phone, my circuits are fried.

So here are my helpful categories …

Dead

This is full shutdown. Out of action, shutdown, Kaputt, bedridden, comatose.

Nothing can be done here other than make it to bed or some save place before final shutdown. You need a total reboot.

( Believe me I have conked out in some less than ideal places. the floor being particularly uncomfortable.)

Stand by

Ok this may be more tv or laptop but still.

This is a danger period. You may have energy, but you must save it and not use it.

When you feel yourself slipping into this energy wain period you really must retire to bed and rest. Any activity during this phase can collapse you back into the dead zone, worst still those viral symptoms that are always just a slip away are waiting to consume you.

You must be still, enforce inactivity despite feeling some power.

Energy saving mode

This is where you are either rising or falling through the stages. You are able to think, but your body will not follow your instructions. Don’t try to force it, relax into a comfortable space, maybe you can move to a sofa, get cosy.

All unnecessary action ceases. In this mode, do only the immediately important and things that make your soul sing.

Dark/night mode

Visual disturbances go wild, light hurts your eyes, spots, your own psychedelic party.

Limit visionary activity. Dark room, eyes rest.

Charging

Constant feeling of tiredness, running down, you can feel the power dissolving, flowing out of you and all you can think is rest, rest, rest.

Lovely, erroneous symptoms start to get your attention. That right ankle may go or left wrist or a twinge somewhere new and unfamiliar. every symptom heightens.

Short charging periods are needed at regular intervals. Aim to stop yourself from running flat. Manage that charge rate. Listen to your body and plug in. When you are managing well it may only take an hour to reboot, other times it may take days, weeks…you get the pic.

Frozen

Just like with your phone, you have got your wires crossed and signals are cancelling each other out.

Enforce a shutdown and reboot. Reach that part of yourself where you mentally switch off to black, set an alarm, if the alarm rouses you and you feel refreshed, get up and go again. If however you still haven’t reached that switch point, reset the alarm and try again.

Insufficient Storage

Memory, memory where for art thou?

Just as your phone storage is full, so is your brain. The feeling of overload is intense, you can not take in one more thing. You can not find the information you need, you can not remember your last thought.

Mental overload, rest, meditate, visualise sorting though the files in your head, send things off to deep storage, clear your mind of all clutter, focus on the moment.

No signal/data

No connection can be made.

This is another cognitive symptom, this time your ability to communicate is lost. You are trapped within yourself, all you can do is wait for the network connection to return.

Overheating

You left your older model phone on charge for too long in an extended socket, or placed it on a glass table in full sun. whoops it is hot to touch with a warning message.

Temperature control is always erratic, your body changes from hot to cold, out of sync with environmental temperature. You accept this as the norm, you freeze, while others sweat, you boil while they are chilled.

Overheating though is this and more. You don’t notice at first, it creeps up around you; you find yourself removing layers, warmer and warmer, its winter and the cold is terrible for your joints and muscles, you actually enjoy the feeling of warmth you radiate.

Until you realise you have stripped right down, there is nothing left to remove without being arrested, all around you the snow freezes; you can’t quite comprehend it, you just need to feel the cold air, you are hot, hot, hot and not in an attractive way.

You head for rest, the shivers start, you boil until the sudden total freeze, you can not get warm now, eventually you fall into the depths of sleep.

From this state you do not wake, not fully, you are consumed with fever and the delirium it brings, days will pass without you.

It is too late now, you are on the flu flume, an horrific ride with all of your symptoms triggered as one, throw in a dose of tonsillitis and a chest infection, for the perfect storm and ride it out!

This is often preventable, managing your condition well, will keep this stage at bay, well mostly. When those glands harden and swell, that throat feels scratchy and dry, it may already be too late. Bed rest now, do not pass go, go directly to bed and hope for the best.

Cracked Screen

Whoops, this is the accidental smash, when a phone hits something hard.

Sometimes it will live on, reduced features maybe, that part of the screen now unreactive, but usable generally. Other wise screen may be completely shattered and in need of immediate repair.

Accidents are common with this condition, falls, slips, bumps, whether you have walked into something or simply toppled over. Lack of balance is a common feature, beware and take care.

My favourite comedy moment fall has to be the time I tripped over my own pyjama leg, yes I was wearing them, saving myself from total floor smash and breaking a toe in the process.

All obstacles need to be avoided, slippery surface? Find another way around. Ice is particularly perilous. I can fall over myself in a large empty room, give yourself space to move around, find a wide path through people, keep back from walls, fences. Take your time.

Well I hope my guide makes sense, I think I need to organise it into a more easy to see format but am wary of getting carried away with myself. It’s taken me weeks to put my posts into categories and a menu.

Take good care,

Chris x

Mobile Phone

part one.

So I have started to describe my condition in relation to a mobile phone. so many people ask about my illness and too many say, ‘so you get tired all the time’. It is just too difficult to explain, particularly as it can be so hard to remember them all, so I start with the ones I am experiencing in that moment, the conversation is never long enough.

So the mobile phone, you know the one, the one that seemed all shiny and exciting when purchased but now coming up for two years later, its not so much fun. Where you used to charge it intermittently, now it needs plugging in most days.

A number of strange things happen, you select to make a call, it calls someone unitended at random. Storage is low and no matter what you delete, there still just is never enough room.

You diligently updated and took care of it but now, apps won’t load, your photos have vanished, you cant read your emails, it switches off, won’t switch on, insufficient storage is a repeated message. and you charge, charge, charge, repeat.

Then Nooo! It freezes, will do nothing, just as you really need to take a call, it wont let you. It is as though the phone itself is out to get you, to ruin the calm and order you take for granted in life. you switch off and on again, Ta dah! with huge relief it teases you, it was just a blip, all is okay.

Until, aargh it was on charge all night, but wont switch on. You check the connection, check the lead, do that thing of plugging into a laptop, all to no avail. just as you’re giving up, you try it just once more, it turns on magically, seems charged and working, ten minutes later it warns it needs charging again, and that’s okay as long as it works.

Eventually you ring your provider, you explain the ghost taken over your phone; for more money you can upgrade to the next model, actually they tell you, you’re model is now officially obselete. But oh no, they can not replace it, you are still under contract and have 18 months left to run. How you ask, the phone doesnt work properly. Oh well you can change your package now, just pay the….

So there you are stuck with a phone that is nearly defunct, you charge and charge, unload all unnecessary files and data, you even remove social media, this way you can plod along, using your phone for what it is, a phone, no more. You are trapped!

Of course, most of us in this situation will complain and challenge the provider and most will have some luck when they begin the cancellation process and threaten with trading standards. Life will return to normal, its only a mobile phone afterall.

Imagine it is your body that seems so possessed?

Type Pace.

So I am back! I write this with a timer running for five minutes. I have no plan of what to write, so lets see what comes out. I am curious to see how much I can type in the time limit.

This is my new strategy, true pacing, I shall type for 5 minutes several times today and see how my hands feel. Both are still curled and very painful, I am used to that. Tomorrow I shall do it again and over days I shall gradually increase my time in the hope that I can reach a sustainable pace that causes less hurt. Aargh 30 seconds left! so that’s it from me for now. Back soon. x

Here I go again. apologies that this is a very dull post. Sufferers will know the importance of pacing and the frustration it causes. I often find pacing more depressing than helpful. At my first visit to a CFS clinic, run by a hospital, I was amazed to see leaflets and guides in the waiting room, all about the condition and how to manage it. Never had I been in a room with so much information. None of it was knew information to me, but it felt great to see it all there. One helpful sheet, described breaking down tasks into manageable chunks, using washing as an example…..

It outlined how to divide the task into sections and complete each over time. Ha, so depressing, if I followed this advice I could spend all day achieving nothing but putting the washing on. Okay so in truth I do always do the washing in stages. Root through wash basket, in the bathroom, usually whilst on the loo, multitasking, weyhey, throw colours one way, lights another and leave for some time. Later I will take the biggest pile down and stuff into machine, dropping some things along the way and always missing one sock, or pair of knickers no matter how well I search them out. Next time I use that loo, always sooner than I think, I either throw the pile back into wash basket and ignore or remove and dump near to washer, … Time up ! Again

Here I go with more ramblings. Do I carry on with the theme of washing? Or something new? Aaah choices! So I will finish the washing first, this is a little like life, everything gets put on hold for a better time, when can cope. So thank goodness for long washing cycles, eventually the beeping machine, calls me to it, I drag things out and throw over the airer and shove in the direction of the radiator. In summer of course I drag it out side and chuck it over the line and airer I keep out there. Everyone comments on my higgeledy piggeledy washing, I say you do it your way, but this is mine. It all gets dry and eventually might make it upstairs and put away. I don’t iron it either! Domestic servitude is outmoded madness!

Okay so into kitchen, thrown into piles, onto stairs, up to my bed, off bed to pile on floor, joining pile on chair and every now and again folded into piles and actually put away. so yes my washing has a long journey, over many days or even weeks. My best advice, buy washer with the biggest drum, buy clothes you like and need in bulk, same for towels, bedding etc. Plan to survive at least a month, without needing to do any washing. Place washing baskets around the house to hide it all away and forget about it, until you really have to. Generally, I do a load or two, every 2 weeks or so and only when I feel up to it.

So this 5 minute thing is putting me under too much pressure to think fast. I will make this my last. Next time I am upping to 10 minutes! Yey! honestly this illness makes every simple thing so complicated. It can feel very depressing and motivation in these circumstances can be hard. I say, find your own levels and what works best for you, even if that seems to go against current medical thinking and treatment plans.

For me I believe in saving energy on all the chores and necessary activities in life, I cut every corner, and recommend you do the same.

Focus on the things you like and enjoy, even love. Our time is precious make it count.

Chris x

Claw Hand.

Proud of myself for finally pressing the launch button, I had forgotten there would be consequences…

Yes following only a short time typing yesterday, throughout the night I was awoken by pains searing through my hands and fingers, yes honestly, life is grand! Now I realise why this blog has taken me so long and will be a very imperfect rambling affair.

To all you regular peeps out there, appreciate the bodies you have and the life they enable, its just not that easy for many of us.

Stupidly today I further compounded the problem by writing a letter by hand, it had to be done, been put off for too long, yes I could’ve typed it but figured a pen would be less painful. how wrong I was.

I type now, with one finger of my right hand, while my left sits in my lap, fingers curled under, unable to move. I call it the claw, as that’s what I think of, as I look down. The wretched, twisted, looking hand of a torture victim in a horror film. Veins popping, pain throbbing, right hand not far behind, I broke the rules.

Fundamental rule for managing this condition!

Ignore your symptoms at your peril!!

Never, ever ignore a pain and press on.

And so as you may understand this is just a brief note, I just had to share this while I am suffering, lest I forget and do it again. Lesson learned, even typing a few thoughts must be paced and increased gradually over time, with much massage and hand therapy in between.

Back soon, here’s hoping!

Chris.x

P.S

Note to my lovely mother,

I didn’t give you the details so that you may correct my grammar, haha.

To the rest of you,

yes I apologise there will be grammatical errors galore.

xx

Leaning Tower of Pizza.

So anyone else know this feeling? You try to stand, but your body seems inexplicably drawn over to one side, you lean out with feet firmly on floor, feeling like, well a leaning tower. I now know that this is bad news, this is me on the way to shut down and the only solution is to lie down as soon as possible. Of course in life we can’t just suddenly lie down, and so it is all to often that this sensation must be accepted while I try to continue with which ever necessary task is in hand.

Oooh the nausea, that’s the fun part, so, while I sway and lurch, head spinning, stomach churning, vertigo building to the point that each step feels like stepping from the highest precipice. For those of you who don’t know this symptom, think of the feeling when you step from the wildest highest roller coaster ride. I meanwhile remind myself that people pay for this sensation, while its free and regular for me.

Picture me lolloping to the right, arms out to brace my fall, each step takes me further to the right and before I know, I’ve hit a lamp post, fence, person or just wobbled into the road. while I feel it happening and see the obstruction before impact, I am completely unable to do anything about it. Nothing I try to change in my movement works, I am out of sync and high jacked by a seemingly alien control system.

Standing still, I imagine I look like the famous leaning tower of Pizza. I take another prescribed pill for vertigo/nausea, relax and lean.

Chris.x