ME and me

It was ME/CFS International Awareness Day last week, 12th May, and this is my story. (it’s a long one – you might want to make a cuppa first).

Telling people about my ME feels like a weakness in itself. Trying to describe what life is like with a chronic illness that can’t be seen, treated and isn’t really understood can be difficult. So in truth I just don’t tell people. I let them think that I am flaky with social events, lazy, unfit and overweight due to my apathy and lack of self-control. The reality is different but I’ve lived (and worked) with ME for more than 25 years, have more good days than bad and I am, mostly, in control.

When I was 15 I was doing pretty well at school, was playing hockey for the town and county, taking part in drama clubs and productions and had a good active social life. I had my career mapped out and had already met with the recruiting officers at the WRAC (yep it was so long ago that women were recruited into a different part of the army). They were going to pay me a bursary during my A’levels and if my trajectory continued as it was supposed to would sponsor me through university before I joined Officer training and followed my grandfathers footsteps into the Army as an engineer – focused on getting into the REME. It was everything I wanted; I was going to travel the world, continue playing hockey and use the maths/logic part of my brain whilst using my performance skills to improve my communication and leadership. I was confident, ambitious, happy and healthy.

I was booked to go on my first skiing trip with family friends and had been to C&A (this was he 80s remember) and bought my new turquoise jacket and black salopettes (it’s funny the things you remember, I can clearly see the jacket – I was so proud of it). And then I got tonsillitis, again. I’d had tonsillitis on and off years, it was one of those things that when I got ill/low it flared up. Usually a course of antibiotics and a bit of rest and I was back to normal, right as rain and raring to go. This time was different; I just couldn’t seem to get better. I was exhausted and my glands were badly swollen both in my neck and under my arms. So we went to the GP – not something done lightly in our house (the story of my appendicitis is for another time, but lets just say despite being told it was an emergency and they were very close to bursting the ambulance was refused as no one wanted to cause a fuss……).

Our GP was brilliant, bloods were taken and I was prescribed some more antibiotics and told to rest. I kind of rested, went back to school a few days – a few steps forward a few step back. It was confirmed that I had Glandular Fever and I was expected to recover in 6-8 weeks. Glandular Fever – the kissing disease. I hadn’t been kissing anyone (my heart had yet to recover from the smashing it took when Adrian dumped me and then started seeing Lesley from round the corner) but it was explained that it happened sometimes when your immune system was low.

But I didn’t recover; I got worse. Too tired to make it up the stairs to bed, and then when I was upstairs too tired to get back down (I am an expert at the stair bump – when you bump downstairs on your bottom). I went from an energetic Tigger type to someone else. Nothing was broken, I had no rash or spots, my glands would go down (and up and down and up) but I couldn’t get off the sofa. I was thirsty so much of the time, and drank pints and pints of orange squash. If I wasn’t too tired I would eat, I never lost my appetite and ate plenty but not always at the same time as everyone else, usually when I was awake enough.

I had good and bad times of the day. I was good in the early morning – often fooling myself that I was ok and could go back to school or go out. I would then crash around 11am and not really recover until sometime after 7pm. Sleep didn’t come easy which was strange for me as someone who had always been able to fall asleep at the drop of a hat no matter where I was.

I took more and more time off school and the friends dropped away, moved on with their lives and stopped visiting. I continued to have the blood tests every two weeks and they continued to show that I had Glandular Fever. However, it shouldn’t have lasted this long and I should be recovering. Sometimes my legs just wouldn’t work – I had a constant dull pain like a toothache in my legs. I spent days in bed, I couldn’t read as my brain couldn’t hold the words. Could watch TV or films but couldn’t retain any short-term information. Music was sometimes too loud and conversation too tiring. I wasn’t good company and looking back can understand why my friends stopped popping round. I was boring, ill with this mystery disease that no one understood.

Our GP was a rock throughout and when it was suggested to my parents that I might have Chronic Fatigue Syndrome he was brilliant in getting both them and the school information. I remember a few years later when I had moved house and moved GP and I saw my notes and I saw the first early suspicion of the diagnosis – an innocuous ‘CFS?’ written in the notes. CFS was in the news at the time – it was more commonly known as Yuppie Flu and sneered at by many. Myalgic Encephalomyeitis is now more widely known as a chronic, neurological illness that mainly effects the nervous and immune systems. Symptoms include severe debilitating fatigue, painful joints and muscles, disordered sleep, cognitive impairment, irritable bowel syndrome, hypersensitivity to light and sound and depression. I pretty much ticked every box.

The treatment cycle commenced. I was told I needed to do more exercise and force my body to respond – not the best idea I soon found out. I had to eat a clean diet; chicken, broccoli and 7 up, no additives or colourings – this didn’t last long as well as being exhausted I was freaking miserable. Anti-depressants, cognitive therapy, sleep, rest, antibiotics, different antibiotics, just blooming well snap out of it. I tried it all. Over the years I have tried many many different things (reike and reflexology anyone?) but in truth the only thing that has worked is learning to listen to my body and myself and being a bit more selfish. Not going out, cancelling arrangements, leaving the party early, choosing what to sacrifice and what to save up my energy for.

It sounds simple, like energy is a definitive object and you can save and conserve what you need. This is mostly true but then my body will throw a curveball and even when I am well rested and have taken a sensible approach it will just stop.

Now, many of you reading this will know me and have met me. Will know that I work full time in a pretty full on job. Take on extra circular activities, love walking my dog, cooking for and going out with friends, theatre and gigs, football and well pretty much watching any sport going. But you see this all comes at a price.

What you don’t see are the days I go to bed at 6pm and just lay there for hours unable to read or listen to music or lift my head. The weekends I can’t get down stairs and have to re-employ the stair bump. The things I have to not let bother me, the clothes that are left unfolded the projects left unfinished, the books I just can’t focus on for long enough that are piled up.

I love my work so my social life is a compromise. Little things, I can’t go to this drink or that do, I haven’t got to the cinema to see that film I really want to, I gave away my tickets to this gig or that show. Every day I compromise. And those around me compromise too.

In my late teens it meant not finishing my A’levels, not going to university and missing some of the parties, clubs and holidays that I should have been too. In my 20s it meant moving back home with my parents, explaining to London Underground staff and the ambulance why despite looking fine and having not fallen I couldn’t leave the bench I was on at Highgate station without help, always falling asleep when out with friends or sneaking off to bed, never quite finishing things I started. In my 30s it was about the rows with my ex-husband over the mess I would create, how I was too tired to do this or that but not too tired to work.

And now in my 40s its about choices, the endless patience of my amazing partner Fitzpatrick and the understanding of my family and small circle of friends who know that it’s not about letting them down it’s about making choices.

Work has changed too, and the world of work for me is easier now than it was 20 years ago. A traditional 9-5 won’t suit me – I can have weeks where functioning day to day during ‘normal’ office hours will see me produce nothing of value. But the ability to work from home, access files, systems and documents 24/7 means that I can work when I am well – be that 4am or 9pm and no one blinks.

I have ME, I’m not embarrassed but I’m not shouting it from rooftops or wearing it like a badge. I don’t let it stop me but know that it restricts me, and that often the choice is out of my control.

There is no cure, no magic treatment but you know what I’m alright. Yes I’m 4 stone (ahem maybe more) overweight and yes I sometime spend an entire weekend seeing no one other than himself and the dog and barely moving from the comfy chair. But I’m good. I’m living with ME and I’m (mostly) in control. Just bare with me if I disappear sometimes….I’ll be back soon.

For more information and support about ME have a look at Action for ME or the ME Association

More updates from HR Tech Europe 2015

Two more storify’s from HR Tech Europe

The First is a session from Nicole Dominique Le Maire and her view on how reward strategies need to be adapted to reflect different genders in the workplace:

https://storify.com/Pontecarloblue/hr-tech-europe-by-giving-power-you-gain-power

And the second a summary overview of the Costas Markedis presentation on How to make organisations more innovative

https://storify.com/Pontecarloblue/hr-tech-europe-how-to-make-your-organisations-more

The Future is now?

I’m off to HR Tech Europe this week, I’ve been invited as part of the ‘BlogSquad’ so expect lots of tweets, blogs and storify’s from me this week on all things Worky People Tech.

As you can see from my succinct explanation of ‘worky people tech’ I’m not exactly leading edge when it comes to HR Tech.  I’m a pretty early adopter personally and embrace new tech and ways of interacting with tech quite easily.  I like my boarding pass on my phone, my weekly shop updated from my bed or the bus and delivered each week, using my hands to wave at the TV and change channels or the volume, keeping in touch with a busy mate with regular giggle fests on Google Hangout……

But at work……well I still work in a heavily paper based organisation with reams of paper sent with offer letters and employment contracts, performance reviews are completely paper based, agendas, meeting minutes.  And then the MI or Data (or lack thereof).  The way in which we are slaves to email.  The endless printouts of (death by) PowerPoint presentations.  The meetings, meetings, meetings (not to mention the meetings to decide to have a meeting).  The project management.  The people management,  The recruitment process, The list goes on……

I’m excited to see what could be – the art of the possible, but also to see what’s already there – the changes that have taken place.  I’m excited to see how technology can support other work on improved workplaces and Happiness.

I’m hopeful and interested and ready to be impressed – the blurb for the conference says:

HR Tech Europe is Europe’s most important event on how software, technology systems and collaborative tools are bringing about surmountable change in the way people and organizations work. Learn from the world’s most exciting leaders and disrupters on topics covering HR, technology, talent & recruitment, social enterprise, learning, mobile, trends, strategy and big data opportunities.

So maybe by Wednesday evening I will truly believe that The Future is Now!

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But they’re not real friends are they?

Some of you will already know where this is going to go.

The short answer is yes – some of the people I have met on line are honestly real friends. Yes many are acquaintances and some are passing nods of acknowledgement. A smile, a wave, a virtual high five.

These are people I have met online. People who I ‘talk’ to more often than I talk to my mother or brother and people who I care about, whose opinion I value and who I cheer for, console, commiserate.

I’m part of a community – well several communities is probably more accurate and my life and work are richer and better for it.

My first ‘online’ friends came in 2006 – I joined an online community linked to one of the many diets I have tried over the years.

The thing is the diet didn’t stick but the friends did.

In 2007 I joined Twitter. I quickly find like minded folk and prattled on about anything from football to shoes via women’s rights.

A chat about sewing and knitting introduced me via someone else to a lady who I now count as one of my closest friends. Jewellery making, cosmetic making, many new restaurants , cocktails, exhibitions and plays later we chat a few times a week and make an effort to see each other regularly.

In the early 2010s I started to combine work and social – following a few leading lights in social media and making connections. Now I have a true community of trusted HR and L&D and General work folk who I talk to, exchange views and ideas with, rail against the bollox and laugh. Proper tear inducing belly laughs.

So yes these people are really real friends –

The one who I am trying every cocktail known to man with
The one who shares the most fantastic shoes with me
The one with the acerbic wit – who without I would never have done the moonwalk
The one who likes to MOOC it
The coffee fiends
The Google hangout giggles

All of them and many many more – many of you.

I’m better for the people I’ve met on line (well maybe not the p*rn bots) but the rest of you.

So when they ask if they are ‘real’ friends I just laugh and say they are some of the most genuine relationships I have.

So what?

I’m starting to get a reputation.

I’m not sure it’s a good thing and it’s not about being disruptive or awkward it’s a genuine question – so what?

65% of performance reviews haven’t been returned – so what? Only 48% of employees completed the engagement survey – so what?

We are measuring stuff without purpose – measuring for measuring’s sake and possibly for a little vanity.

Then there was a conversation on the ROI of a certain type of training – so freaking what?

I’m not saying don’t measure (there’s truth it what gets measured gets done). But measure for a reason – do something with the information other than putting it in a freaking pie chart and then ooh’ing and aaah’ing over how good or terrible we are at filling in blooming forms.

My colleagues are starting to preempt me – before AJA’s asks ‘so what‘ we’re doing it because…………

Awesome. If they are thinking about the why and the what next then awesome.

Without reflection, we go blindly on our way, creating more unintended consequences, and failing to achieve anything useful.
Margaret J. Wheatley