HANG IT OVER.

So, I wake to a grogginess that just lingers, like my head is inside a fish bowl of jelly, strawberry but not sweet. My mouth and throat feel claggy, metallic, furry, like my tongue has been sucking the metal of a bird cage rather than the gritty bottom of the canary cage itself. A thirst rises from within, water, I need water, I roll and thrust out an arm in search of my water bottle but knock it to the floor. New breath and stretch, time to get up, the dogs jump on me, one licks my neck the other waits for her invitation to kiss my chin. I stumble from the bed, lurch the few steps to the bathroom for a pee that I refer to as donkey pee, when it has waited so long that as your backside reaches the toilet seat it falls out of you, like you’ve never peed before, despite the numerous trips to the bathroom all through the night.

In coming! A wave of nausea floods my body, whoa there, lets get off this ride. Pills, I swallow them down with a gush of water. What is happening to me? I think back to the previous day and night and a flash of memory tells me I expected this, that I knew it was coming.

I trundle around the bedroom, yesterday’s out door clothes are discarded in a rushed pile, as if torn from me and flung away, today’s clothes, last night’s bedwear, serve as todays wardrobe choice, all items chosen for the ability to sleep comfortably but also leave the house without being obviously in pyjama’s. Ignore the mess, move on.

My morning coffee goes through me like a stream through a cavern, bringing no comfort. Food feels like a ghastly thought that spews inside of itself. Still I force myself to shovel in some Oatibix and try to pull myself out of this slime pit.

I walk with the rhythm of the condemned man to the gallows, clunking and swaying and wanting to stop. This day is not starting well, I focus my thoughts forward’ to the days planned actions and in that moment redirect all tasks to the following day. I give up, give in, I need to lie down and stare, my brain feels shrivelled and dying inside my skull shell.

My vision feels enclosed as though something is blocking my sight, I can’t quite make out things and my head can not compute the images it views. The light is too bright, it cuts through my retinas.

So it is back to bed, via the bathroom, the urge to vomit never subsides, the room spins and sways, my body feels curiously bruised and knocked around, did I fall? I do not remember.

Sleep evades me, something inside churns and keeps me awake with eyes wide, day time tv drones on in the background and I wait, wait and wait for this all to pass.

Now it seems that I am describing a state of hangover, the morning after the night before. I wish I was, that would be so much easier to accept and understand, cause and effect. However this is just a day, could be any day, on the previous day, I may have done a little more than I should, or gone to sleep a little later than usual, but I may have done everything right, there is no judging it.

Medications leave my mouth dry, with a constant distaste, that fluid can never wash away. My body collapses in on itself as though I have been pushing it to the extreme. I have not danced the night away, or run through darkened streets with abandon, no such fun for me, no. Exhaustion causes my confusion and memory lapses but I have no secret assignations or excitement to hide., its just me and my M.E.

Cheers, bottoms up!

Chris.xx

All change.

Yes its that time of year again, summer is over and Autumn is upon us. This summer was a washout, sunshine was in short supply and time seems to have flown by. Today I have waded through a torrential down pour, last week, there was hot sun. Well its the middle of September and weather wise, it seems to be any ones guess what comes next.

This is the time of year I aim to knuckle down into some kind of working routine, but so far I am all over the place. I have truly neglected this blog and while today I feel like committing to more regular posts, I know that I won’t do it. My head is divided between a number of projects and disturbing family developments mean my attention is further divided. Christ how pompous that sounds. So here I am trying to explain without giving away too much irrelevant information. Well fuck it! You may as well have more detail!

So I have been working on a creative writing project, trying to develop a work of fiction, its going in waves and currently not at all. My main distraction, my mum had a mini stroke recently and is still recovering, all very scary, she is ok, exhausted mostly, Oh the irony, she finally understands this curse first hand. She has cats, we have dogs and so I must come and go between our homes, in order to spend time with her, its exhausting and just too much and so all to often I am leaving her alone to fend for herself.

Then there’s the Teenager, soon to be 20 year old, who lives in her room, venturing out to dump takeaway and meal debris around the kitchen and steal away random items, she has started her second year on a college course but is already struggling with the commitment and having mental health woes. Thus she needs extra attention and support from me. I try I really do and I know that both of them would say I do a lot for them but I feel like it is all out of control and just all too much.

Needless to say my own projects have been put to one side, although today at least I am doing this. Today I have timetabled it all in, I have completed some very necessary house chores, before breaking out here to the library, through the floods, next is a ballet class, then home and daughter time, we’ve decided on weekly study meeting to plan her directed study time, all that time out of school has left her with no experience of study skills. Prepare dinner, sort dogs then taxi to mum’s house for the night, so today I should have it all covered. No mention in there of my rest break, I will pop one in somewhere. Today I am determined, tomorrow is another day.

Well so much for my commentary on the change of season, somewhere I was waylaid, never mind , it is a win that I typed at all. Here’s to a life of balance!

Cheers! Chris.xx

Boom and Bust.

Oh those dreaded words, yes its time to face it, Its almost as irritating a phrase as day/night reversal. Theory has it that we must pace and pace and avoid an all or nothing scenario. This is the common thinking. Well here I throw my experience in and say, we need a little boom and bust in order to live.

Yes pushing incessantly and over reaching daily is a no go, but a little managed booming can become a healthy part of your routine. I first had support for pacing when I was mother to a toddler, it was great to talk about pacing and rest breaks but it was impossible in reality. My child would not sit in a state of stasis while I practiced this ritual, no no no, life was upon me and I had to find ways to fulfil her needs while protecting myself. We came to a natural rhythm that worked well until she stopped needing a nap in the day. The key to harmony and life was just a longer pacing period. I would sleep when she did and be active when she was awake. We mixed periods of physical activity with quiet learning, social time and down time. Once she hit three, it all changed, her energy out grew this, but this was when she was eligible for some free nursery care and I then paid to top this up so that she spent her days in nursery school, leading to school and with that the seemingly endless years of the school day, settled in.

I thought life would be easier through the school years but it was not in reality, I returned to working for a few years and everything became intensely hellish. Well enough of the past, back to boom, bust.

There is something to be said for giving your all for a short period and not thinking of the consequences, pay back can be a bitch but we know this and so if we plan in a rest day following a boom day, we can sleep through and come out the other side refreshed and ready to go.

When you spend your time separating the washing into smaller tasks and attempting them over a longer time, you are filled with a negative sense of doom, that your life will always be this and no more and it will be if you allow it to be.

The well meaning professionals who advocate a life lived in coloured sections of time on a daily chart, forget that we are human and as such we need more, we need quality of life or what is the point.

I interrupt this post….

So before I could finish this post, writing from the point of past experience, I experienced my own bust, after an intense time of booming for a prolonged period. Now I am writing freshly from recent memory. I had gradually increased my exercise program and general activity levels, I had reached a point where I felt like a normal person, people were saying to me, ‘you are doing well’ and I thought ‘yes. yes I am’, I was pleased with myself, I was feeling energised and fitter and I liked it. For over four weeks I had kept it up, it felt like a move forward, until yes you guessed it, the bust! No I wasn’t suddenly cured, I am not normal, yes I can do it but only for a short time, one walk, when I had already done a lot and that was it, tonsils fired up in the night and I woke swallowing glass and fevered with flu like symptoms ready to rage. Damn it I had seemed so close to a real life, but no, my body would not let me get away with it any longer.

I lost over a week of life, I rested as soon as I felt my tonsils but after 3 days of bed rest feeling delirious with fever, I pushed myself up and out into the world, just a little exercise I told myself, a stretch and a dance. Once again I blew it, had I have held back as my daughter advised, I would’ve been back to life by the Friday, but instead I set myself back and made myself worse, flu symptoms prevailed and led to a chest infection, I coughed and spluttered and struggled to breathe, sleeping propped up in-between coughing bouts feeling literally claimed by death.

Now another week later, I am still not great but have managed some simple activity, but its back to square one, the drawing board, time to start again and rebuild. I am on a go slow, everything is hard and my head can not focus. I have been writing this post in my head, for days but still I am not sure what I am saying and wonder if I am making sense.

My chest is tight, breathing is laboured and mucus is still rising, but I am able to move and the sun is shining again, literally. Despite heat waves over Europe, here it had rained and rained and turned icy cold, I had to switch on the heating as the air at night was so cold I couldn’t catch my breath. Oh well, it was my own fault, I carried on pushing and enjoying, knowing there would be a price to pay eventually, but as each day passed unhindered, I was able to forget, just in those moments that I was ill at all. The strange pains in unusual places came and I took more tramadol and ignored them, my thought dried and my glands swelled and I carried on, when the tonsils ripped through my throat, I could no longer ignore, I rested but not for long enough, my impatience cost me another week out of life, and with chest symptoms set to continue past that. Full flu and tonsillitis take me out for a month generally so I have been lucky to be able to be back here in the library after just over two weeks. I must think to the positive, yes I must say goodbye to my routine and find a different one but I must not give up finding the very maximum that I can do regularly without causing any pay back.

To conclude, somewhere between these extremes, there exists a moderated, mutual point of balance, it is this we should aim for. Yes plan in peaks and troughs when needed, and at all costs avoid that long term boom. When I think back, the routine I shared with my young child fitted me well so I will think of this as I work out my new routine. It is for all of us to learn our patterns and pleasures and build our lives around them. I will find my own way and I hope that you will too.

Here’s to the boom without the bust!

Chris.xx

Contribution Article by spiritfinder.org.

self-care-strategies-for-chronic-fatigue-syndrome_-improving-your-mental-health-1Download

Self-Care Strategies for Chronic Fatigue Syndrome: Improving Your Mental Health

Chronic fatigue syndrome (CFS) is a debilitating condition that can interfere with everyday activities. If you suffer from CFS, certain self-care strategies may help combat profound tiredness and other associated symptoms such as headaches, muscle pain, difficulty concentrating, mood swings, and depression. Self-care activities can be surprisingly effective at improving your mental health! In this article, Living With Me explores some effective self-care strategies that can help you feel your best in the face of CFS.

Embrace an Anti-Inflammatory Diet

According to Verywell Health, CFS is believed to involve chronic inflammation. Adopting an anti-inflammatory diet could help to ease symptoms and correct underlying nutrient deficiencies. Look for ways to make simple swaps in your diet, like reaching for fruit and nuts instead of chips and soda when you need a snack. Whole grains, vegetables, fruits, legumes, fish, and healthy fats can give you an energy boost. On the other hand, foods with added sugar, inflammatory fats, alcohol, and caffeine can zap your energy, so stay away from those.

Exercise as Treatment

Regular exercise plays an incredibly important role in mental and physical wellness. While exercising may not be the first thing you want to do when you’re experiencing chronic fatigue, movement can actually help your body generate energy. Just be sure to pace yourself as you’re starting out. Start with gentle movements and stretches. Yoga and Pilates are great if you’re looking for classes or online videos to follow.

Practice Good Sleep Hygiene

While getting enough sleep is undeniably important for maintaining consistent energy levels, sleep can also give your mental health a boost. SleepFoundation.org explains that sleep helps the brain process emotional information. Lack of sleep can influence mood and emotional reactivity and is closely tied to the severity of mental health disorders, including anxiety and depression. Practice good sleep hygiene habits to improve your sleep quality:

  • Stick to a regular sleep pattern.
  • Go to bed when you feel tired.
  • If you can’t sleep, get out of bed and read or listen to an audiobook.
  • Avoid alcohol before bed.
  • Keep electronics out of the bedroom.
  • Engage in relaxing activities before bed.

Spend More Time Outside

Spending time in the great outdoors is one of the best things you can do for your mental health. Nature can calm a busy brain, reducing stress and restoring the ability to concentrate and pay attention. And since stress can worsen symptoms of CFS, stress reduction through time spent outdoors can perk up a tired brain. Spending time outside can also help reset your sleep cycle every day, making it easier to fall asleep at night and wake up in the morning. Plus, you’ll soak up some beneficial vitamin D if you can get out in the sun!

Limit Daily Decision-Making

If you’re facing CFS, the last thing you need is decision fatigue. Unfortunately, our hectic lives require us to make countless decisions every day, which can leave us feeling drained and depleted. Decision fatigue is a state of mental overload. The more decisions you have to make in a day, the more difficult it becomes and the more it can wear on your brain. The easiest way to overcome this issue is to streamline your choices. Make grocery lists, so you don’t have to decide what to buy when you’re at the store, pick out your clothes for work the night before, and cut out things that aren’t important. Don’t waste valuable energy deciding what to watch or where to order your takeout from. Go with your gut and commit to a decision!

While many of these self-care tips may be basic or commonplace, they’re important nonetheless. By making healthy eating choices, getting enough sleep, exercising regularly, and spending time outside, you can give your mental health a boost and make it a little easier to live with CFS!

For more tips on thriving in the face of CFS, check out the other posts on Living With Me!

Sunshine.

Just like that the sun starts shining through the clouds and all seems well, better somehow. The warm rays soothe my aching bones, the air is filled with optimism, I feel like smiling and it feels good. Suddenly the world around me seems open and free, no longer trapped in the house, the garden cries out for attention and the streets glimmer invitingly. Everything does look attractive in the yellow swathes of light, the general grubbiness is highlighted and reflected and raises to pretty even.

I feel the vitamin D absorb into me and I feel alive, the greenery is greener than green, I breathe in its viridescence and the colour fills my lungs. Of course there are downfalls to this summery sun, The pollen count and skin damage, as an older woman I need to keep out of direct sunlight, like a gremlin, I say no to skin cancer and hope that my childhood through the seventies and eighties, when we all slathered ourselves in oil, if we used anything, wont haunt me. Pollen is the bane of my life, my allergies trigger in January and if I am lucky will settle somewhat by the summer. Everything just feels brighter, I feel happier, even my swelling, throbbing fingers can’t detract me from the joy.

Our cold old house is a blessing in the summer heat, its bricks seem as though made of ice, solid, freezing, in winter this is terrible but now in the warm its a neat trick cooling every intense heatwave down to comfortable.

Warmth seeps through the bones and this old body feels it like an internalised heat pad, everything is less creaky and achy so it is no wonder I prefer summer months. Its still hit and miss with sudden rain storms lashing down in between sunny periods, there is no way to know what’s coming when so I jump into the light when I get the chance. I am one of those people who strips down at the first signs of sun, if I see a beach or open water I have to resist the urge to wade on in. Just thinking about the summer ahead fills me with joy. Heatwaves are the new summer climate, I have learned to embrace the sweat rather than swelter from it, and I urge you to do the same, make the most of it while we have it, that icy rain is always hovering.

Enjoy the sun. Chris.xx

Don’t beat yourself.

So this one goes out to my daughter, she inherited these conditions from me and at the age of 19 now is struggling yet determined to forge a life for herself.

Don’t waste time beating yourself up, this illness and other people can do that for you. Your task is to survive as best you can, aim to live happy and free of symptoms as much as possible. It is so easy to blame ourselves, it is our bodies, failing us and so ultimately feels like we are failing ourselves, but no, stop there. Stop that thought. We do not choose this we do not do it too ourselves, we are the victims of a cruel condition and that is hard enough, without fighting and blaming ourselves. Shake the blame away.

No you are not lazy, no you haven’t wished this on yourself, no you can’t help it!

A relapse in symptoms, always brings negative thoughts, it is only natural, we seek to control and minimise the damage, but we can’t

Recently I had my life critically analysed by my 23 year old nephew, he bombarded me with messages telling me how pitiful and stupid I am. After all the time getting to know him, he had missed the point about me and my life.

I am an easy target, my life is small and simple. I do not need to be told how I have failed, how I am surviving yet not thriving and so very far away from any life I imagined for myself. I know all of these things. I wake each day in a grotty old council house on an old estate where I am alien, dependent on state benefits, a lone parent, I see the deprivation first hand, I have made do, made the best of things and even accepted my place, stopped fighting and hoping to get out of this situation. I have stopped blaming myself for my failings I have grieved for the achievements I did not reach, for the life I had in mind. I have said goodbye to all of this, I have let go. My life is as it is, technically, on paper, my failure is clear and yet, life is never that clear cut. Yes all of these negatives are true and yet there is more to my story.

I live a small life, within my means, I may own nothing of great value, no house or car even, but neither do I carry any debt. I have a degree and post degree certificate, passed A-levels and G.C.S.E’s. I have trained and worked in a professional role and been a respectable and giving member of society. I have known a loving relationship, shared responsibility for a home and I have endured despite the end of that relationship and learned to live independently. I have created a life inside of me and given birth. I have parented my child, given her the things a child needs most, Love, time, attention, stability, I have created a loving home, and provided all we needed. For the past 20 years raising my daughter has been my mission, and I have loved being a mother. Being ill and caring for her while she was unable to attend school for years, trapped together in a small and rotting house was harder than hard, knowing I have contaminated her with this disease, was very far from easy to come to terms with. Helping her with treatment and recovery and education and fighting for her rights, all took a toll, but I have done it. I have achieved all of this while battling firstly with an unnamed illness, fighting for diagnosis and later learning to live within the parameters of this illness.

What I don’t need is to be judged for my struggles, ‘don’t kick a dog while it is down’ goes the saying. I am the easiest of targets, but what my nephew failed to understand is that I have judged myself more harshly than any other possibly could, I know my journey and my failure and faced it head on, I have felt the fear, been paralysed by it before putting it aside and getting on. Yes I have failed at some things, never made it to those markers in life that signify success yet am alive anyway and that’s just it, the lesson of the older, we face it all and we still live to face the rest. All his attitude highlights is his own failings, I have faced the darkest darkness and I am still standing and gently now trying to step forward. He has all of this yet to learn and so I forgive him as I forgive myself.

Yes, beating yourself with a stick is pointless, allowing others to beat you is pointless, shame, blame and guilt are all damaging emotions; so don’t allow them to settle in your head. See them, say them, and cast them out. Life is what and how we make it, each and every single day. Happiness is a feeling and a choice, so choose it, as I do. The path is painful and hard if you let it be, free yourself from negative attitudes and celebrate all your achievements, however small they seem.

Keep smiling, Chris.xx

Lift Me Up.

Well this weeks waffle was easy to choose, It found me. I am trying hard to get into a writing routine and this week got to my local library keen and eager to get on only to discover to my shock horror, that the lift is out of order! Nnnnoooooo! my head screamed! The library is in a new building, one of these all in one council buildings, the stairs are glass and metal and horrible! The computers are upstairs!

Forgive my exclamations, but I can not emphasise my feelings enough. The lift is a modern chamber one of those that is like being in a tube, you press and hold the button and keep away from the walls. I hate these lifts but I hate stairs more.

So I swallow my panic and take a deep breath. Aha, I see there are now a row of P.C’s along the wall, there is hope? But no, further inspection reveals three terminals faced by three people. I must face the climb!

Luckily the stairs are narrow enough to allow me to hold both bannisters, I take hold and will myself up, my knees retaliate with sharp edged jabs, I tell myself I can do this, deep breath and go, go go, don’t think just move. In 9 steps I am at the first bend, another cliff face to climb, I am up before I know, at the final turn and then off and out into the first floor, I adjust myself try not to look pitiful and take a seat at a computer. Yes I made it.

Why is it that lifts are so often placed at the most inconvenient points in a building? Often you have to walk all the way to the end of a shop floor in order to travel up, I guess they want you to see all their wares and don’t realise the difficulty. Its the same with subways and walkways, they make you walk round and around to avoid the stairs, so you have a choice, short intense pain or longer exhausting discomfort. Oh well, now I really am moaning.

I have asked about the lift, its waiting for a part, and waiting and still waiting! I mustn’t let it put me off coming here. Today I am on a P.C. downstairs and it is fine, if not draughty and noisy. Fingers crossed it will soon be back in action.

Cheers, Chris. x

Shadow.

As I walk I notice my shadow, it rears in front of me showing my inner turmoil, no matter how much I try to present myself and hide my exhausted, pained state. There in my shadow it is for all to see. A lumbering, lurching, creature, like Frankenstein’s, no name, creation, as though my limbs are mismatched and sewn together crudely, my gait abnormally hefty, dragging a leg behind. In my mind I am a spritely creature walking briskly, cheerily, enjoying the sunlight on my face, raised optimistically.

Ahead of me the darkness squirms. creeps along joined at my toes, could Wendy have sewn Peter’s shadow back to him if it were like this? I don’t think so. My shadow looms, larger than life, grotesque in the shapes it throws out of me. In this silhouette, my contours are blurred, foggy, leaking out like fingers from the bowels of the pit of despair.

In this vision I see my self as I am, as passers by must see me, I hunch and hide yet I am illuminated into this jerking state of spasm. I smile but my shadow doesn’t show this, if it were to have facial features it would present an ever present scowl. It encompasses me whole devouring all that is light and bright about me.

I must raise up, straighten from my core, adjust my shuffling feet and shade my eyes from this vision, or I will cry and my tears shall drown me where I hobble. I change direction and my shadow stretches behind me, mocking me as I focus on the path ahead, and concentrate on walking straight. I look up and out but see little, just let the light wash over me as I press on. I must not give into the darkness, if my shadow reveals my true self then I must not accept it and must not give in. I look to the light, but my shadow weighs against me, pulling at my soul.

Maybe this shadow is simply the manifestation of my illness, perhaps I am visualising it as I walk? In the right direction at the right angle, I can always keep a step away from it, it is part of me and yet separate, joined only by those few stitches at my feet. I can’t out run it, escape it, but I won’t always see it and I can keep it at bay if I am strong, maybe?

Look to the light! Chris.xx

Coming soon….

Recently, I was contacted by a lovely person from the WordPress community, (Jennifer at spiritfinder.org,)

She has produced an article with tips for surviving with this chronic condition. I am pleased to say she would like to share this with us! The only problem is I don’t yet know how to add a post from a guest, I am determined to find out and soon.

Read it here as soon as I can sort it!

So I’m Back…

Not from outer space but may as well have been. I think I wrote something similar to this in March, optimistically announcing my commitment to working on here, oh well clearly that didn’t work out. So here I am again, hoping that this time my determination and routine will keep me rolling forward.

I sit here now and wonder what I have been up to and I do not know. I remember the year started badly with issues within my wider family taking a toll, I had no control over these events and that’s the thing isn’t it? Life is often out of our control, however much we plan and pace and limit, life calls on us in many ways. Yes we can isolate ourselves and protect ourselves, to do this though we must break away from all we know and all people with a real or emotional connection to us. Yes we can build our lives around this illness, we can segregate ourselves and live only within our own needs and wants and this way we may feel we have control of this condition and are cured. But what cost this quarantine? These actions deprive us of life and humanity, yes we may feel safe but are we living?

Life is messy, unpredictable, demanding, other people are difficult, imposing, loving, caring, helpful and fun, what point if we are alone? If we do not see ourselves reflected through the eyes of others, do we even exist.

Relationships are reciprocal, we benefit from others as they benefit from us, but we must invest in these and be open and giving. ‘Nothing will come of nothing’, we get as we give and so isolation is the wrong way to go. I know this first hand, I abandoned all my connections to people and family, except my child and lived in a very safe yet dark place for a time, before I found the strength to reach out and re-join society.

Then, I have actually begun my official journey into menopause, I say official as I am sure I have been perimenopausal for years already. I welcomed this phase before discovering what all the complaining is about, it is hard. My body is changing and in ways I hadn’t anticipated, my facial skin has become paper thin and dry, I’ve always had greasy skin, but no more. I have raided the stores for products proclaiming help and now have a serious skin care regime, as I’ve never needed before. HRT has rebalanced my moods but I am still adjusting.

Life has a way of catching us out, just when we feel comfortable, things change, change is all around and we must embrace it or perish.

Be prepared for the unexpected, let life flow like a river through you and around you, and as the song says…. I will survive!

Cheers, Chris.xx