Cluedo, Yoda and unrefreshing refresher training!

 

After six months off work, I am finally phasing back in and this is why I have been quiet. Blogging has taken a back seat whilst pain and exhaustion come to the fore. Dubious as I was, I thought I would bounce back in, newly acquired assertiveness to hand, breeze through my shifts and all the work that entails then return home to become a model housewife: laundry sorted, dishes done, homework worked through with munchkin. The reality was far different. Within two hours, my back burns up with pain, my shoulders scream out for a massage, my head hurts, my eyes are rolling with exhaustion my fingers stop working and words are not forming properly.

 

 

 

To questions such as “how are you getting on?” I am reluctant to tell the truth. I don’t want to moan or cry or sound lazy. Instead, I offer drinks. A perfect get away from the office, I feel. I hadn’t banked on how painful it would be on my hands to carry more then two cups back to my office in one go: a once easy trip is now a mammoth task involving trekking through waiting rooms, dancing around doctors, avoiding patients and trying to cling on to cups which are threatening to drop at any moment.

 

 

 

This week I have been catching the bus in because I am still not able to drive and my poor little car stands neglected under a tree which taunts Bessie (the car), as it changes in accordance to the seasons – blossom, tree sap, autumn leaves have all fallen whilst my car has sat there. Occasionally Bessie has a wash. For the most part, she is home to greenfly, lady birds and Sandy and Scott, the travelling spiders currently residing behind the wing mirrors. (Fine, as long as that’s where they stay!)

 

 

 

The bus journey is in itself another task. The walk to the bus stop is all downhill. All good unless, like this morning, it is raining. Cue umbrella, head down and disorientation. I soon learnt that, when looking down, it is always handy to learn where trees are or pavements end. The bus, when it arrives, is full of school children announcing how gay everything is: “I got a new pencil case. It’s so gay.” “My mum is so gay.” “My maths teacher is so gay.” I was tempted to point out that they are on their way to an all boys or all girls school (the buildings are next to each other) and maybe the expression used should be rephrased. Once at my stop (the children all get off three stops before mine so five minutes peace is gratefully welcomed), I have a ten minute walk to my office where I instantly land in the morning meeting.

 

 

 

Today I had refresher training. I thought this would be a twenty minute session. It ended up being over two hours. I left feeling unrefreshed! The trainer was brilliant. Patient and funny and somehow, we managed to get Cluedo and Yoda in as a way of helping me remember things. (The brain works in weird and wonderful ways!) Training took me to the end of my shift. My partner picks me up – what a godsend. I instantly crashed on the sofa and slept for two hours.

 

 

 

I always try to see the silver lining in every cloud, but I am struggling to here. Last week I worked two shifts, this week three. None of them consecutive. Next week will be four. I face the consecutive days for the first time in months. I am wondering if I will cope and if I don’t, what happens then? The trials of M.E and fybromyalgia are presenting themselves in different guises. For now though, I am settled. Pyjamas on, laptop on, dinner being served. Tomorrow is another day.

 

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I left my sanity at home

I have been on long term sick due to labyrinthitis, M.E and fybromyalgia. Today I had a meeting at work. Although I was initially excited, as time drew near I started dreading it in a heart dropping, stomach churning way. What if they thought I was faking because externally, I look no different. What if they pushed me to return or allocated work which would, at the moment, be too much? My imagination fired up as non-existent conversations between colleagues in my absence came to mind. “Ere, I bet she’s dragged this out coz her kid’s had the summer holidays, don’t you?” “She’ll have forgotten everything, we’ll have to train her again! Imagine the time that’ll take!” “Have you noticed how quiet it is?!” “She’ll be wanting annual leave next!” I distracted my mind before it traveled further into the realms of the untrue..

I ambled slowly to the bus stop (I am, for now, unable to drive due to symptoms). I felt as though I was in a Victorian novel:

The sky was a blanket of grey, draining the world below of all light and energy. The wind blew icy cold and light rain bit the face of Angel as she pulled her coat tighter around her. “I should’ve let this coat dry after washing it! Now I feel colder than ever” she thought (O.k, that veered from the Victorianesque slightly). She shivered and kept her head down as she battled through the winds. The streets were empty. save a few brave souls, blowing into their hands and marching on to their destinations. Cats lurked down every pathway, glaring accusingly as Angel passed: their whiskers kissed by the fine rain, their eyes bright with the challenge of the day.

The bus stop, when I got there, was busy with people waiting: A lady in her tracksuit smoking to “pass the time.” A young man in a t-shirt bouncing from foot to foot, puffing on an electronic cigarette and swearing profusely, his mother giving him the odd smack on the shins with her walking stick. A young mum rocking a pushchair gently back and forth. Her baby shoeless, coatless, sockless, hatless and blanketless wriggling red toes in the rain. I perched on a wall away from the group and started to plan things to say at the meeting.

Maybe I could ask for a fan. I struggle controlling my temperature. Maybe they would let me have drinks by my workstation. Maybe I should mention my hearing is now damaged in my left ear and my memory is shocking. Maybe not. The bus came, the group of people boarded and I stayed put. My bus was next. A lady joined me and asked if she had missed the bus. She was relieved to learn that I was waiting for the same one. We watched a postman across the road slip and drop his letters. How long before the red vans, the post boxes and the daily deliveries from, generally, cheery postman become a memory of the past? Will Abi tell her children about it:

When I was a kid, we posted letters in a red letter box to Father Christmas. He would write back, you know. And we got post everyday. If the postman had a big parcel, he would pull up in his red van outside the door. My stepmum was a postwoman for a while, and our neighbour was too. They have some stories to tell about banging heads on hanging baskets, running away from barking dogs and finding pet rabbits on pavements! (all true!)

I digress.

The bus arrived. The clock was now ticking. In exactly fifteen minutes I would be walking off the bus right on the doorstep of work. My heart started beating faster. I distracted myself further by staring out the window trying to get gardening ideas from the properties we passed. I started feeling travel sick. I looked down. I looked ahead. I looked to my left. Nothing helped.

By the time I got off the bus, I felt dizzy, exhausted and sick. I stumbled in to the door frame of my workplace and came face to face with my two bosses. Well, I thought, at least I look ill! My worries were instantly quelled as they both held me and were happy I had made it. Over coffee and a catch up, all my questions were answered and my worries eased. In two to three weeks I will be back at work. In my swanky new workspace complete with new chair and new blinds (so I am more in control of the light in the room). I will be meeting the rest of my colleagues next week and I am told there will be a buffet for the occasion. I do hope there is carrot cake!

I am a notorious deep thinker and worrier. Nothing is ever as bad as I fear it will be and today is a classic example. The results of my worry are, as always, exhaustion. I have spent the rest of today power napping whenever I can. I have longed for pyjamas since the meeting closed. I have wanted to run back to the safety of my home and close the door on the world for the day, safe in my cocoon of home comforts: my partner, my stepdaughter, my space, my cats, my sanity! At home I am, for the most part, calm. I am free to be me. I don’t need to wear the “i’m fine, really” mask. I don’t need to worry about what’s about to happen. At home, I am never alone. At home I have unconditional love and support. At home I am complete.

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Where did that sugar come from?! What was I doing?

It is Saturday. I just found the sugar in the fridge. My phone has turned up in the pocket of a jacket I don’t remember wearing and I know I am supposed to email somebody, but can’t remember who! I have a list of jobs to do in my head: namely hoovering, ironing, bleaching and general tidying. Yet I am sat on the sofa in my pyjamas, my head pounding, typing this.

It is Saturday. Last night people went clubbing, dancing in the dark to the floor rumbling beats of well known songs. Last night people gathered to prepare: music in houses, smells of make up, hair sprays and body sprays. Last night people had no limit to the volume around them.

I was not there. I am not hung over (thankfully!), I did not roll in at five a.m in free flip flops, courtesy of the bible group who help clubbers at the end of the night (God bless them). Clubbers who stagger in feet that have been crammed in shoes too high. Nor was I in the various pubs or social groups on offer. Groups where people meet to talk about love, life and everything.

I have M.E and fybromyalgia. I forget things (they call it fybro fog). I hurt often – everywhere. I have a range of symptoms (leg twitching, light sensitivity, noise sensitivity and sheer exhaustion. All the time!)

I know I look well. I was told so the other day! I hear “but you don’t look ill.” I get the bus with my disability pass and feel the eyes judging me with the general school of thought: “she isn’t disabled!” If only they could live in my body for one day! I know this is one of those illnesses where people may look at me and think I am lazy, but I am not. Yes, I am looking at the jobs which need doing today and feel guilty for not having started yet, but I will start and it will get done. I held down my main job for thirteen years and have worked more or less constantly since (bar the sick time I am now having for current flare – magnification – of symptoms).  Would I rather have a visible illness? I would rather have no illness. Most people with M.E/fybro lived full and busy lives before the illness hit. We all look back and crave what was.

I am lucky. I have a wonderful partner of seven years (who also suffers a lot of the same symptoms), who supports me. I have a wonderfully enchanting, loving and entertaining eight year old stepdaughter. I have a stable job where the doors are open for my return. I have a home, three slightly mental cats, and family and friends near by. My network is strong. Some people with this condition complain of loneliness. I do not feel lonely. 

I feel guilty for not being able to do more than I want to.

 

I am merely typing the dominant thoughts in my head as I sit here. Now they are on page, they are out of my head and I can get up and get the washing on the line.

 

 

In a minute!