Tag Archives: Myalgic Encephalomyelitis

M.E Awareness Week 2015 – 10 Things You Didn’t Know About Living With Myalgic Encephalomyelitis

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M.E Awareness Week 2015 – 10 Things You Didn’t Know About Living With Myalgic Encephalomyelitis

For M.E Awareness Week 2015 I thought I’d give you a little glimpse into the world of M.E…

  • I’ve been living my life with M.E for company since August 2011. It appeared after a bout of swine flu and settled itself at a mild to moderate level quickly afterwards. It’s also known as Chronic Fatigue Syndrome which I much prefer as a label, not least because it’s easier for people to understand.
  • Although chronic fatigue is the headline act, M.E features a whole host of supporting characters such as pain in the muscles and joints, a random inability to control your own temperature and brain fog (technical term for your mind failing to work according to the instructions)
  • 25% of people with M.E are so severely affected that they are housebound, wheelchair bound or bedbound. I’m lucky enough to be able to goad my body into functioning semi-normally, although it is often feels like I’m carrying a five pound sack of spuds on each shoulder whilst a mouse nibbles on sections of my brain.
  • Despite Denise Robertson claiming on ITV’s ‘This Morning’ that “M.E doesn’t last forever”, it can and often does. Only a small percentage of people manage to regain their former level of functioning. I like to think I might be one of the small percentage. As Henry Ford said, “If you think you can do a thing, or you can’t do a thing, you’re right”
  • Living with M.E is like trying to use a mobile phone with a faulty charger. My body battery is never more than 50% charged and if I fling myself around doing too much, my power dies and I’m unable to function. Managing and conserving low energy levels are the key to coping with this condition.
  • The hardest part of having M.E at my level is that you feel dreadful but look fine. Unless you become a chronic illness bore and constantly regale people with tales of bodily woes, it’s difficult to explain to people why you can’t do everything you want and need to do. It’s even more difficult to explain why you can’t do everything THEY want and need you to do.
  • M.E has taught me to prioritise and organise to within an inch of my life, otherwise important jobs would never get done. I was rubbish at this before.
  • It’s also taught me to say goodbye to the futile practices of perfectionism and being competitive. I was never ‘good enough’ before I got M.E, but now I’m happy with the simple things such as holding down my job and managing to put a few decent outfits together while I’m at it.
  • Having M.E has also helped to separate the wheat from the chaff where friends are concerned. Not everyone can cope with a friend who is brilliant at emails but who doesn’t have the energy to materialise in person very often. Luckily, I’ve now got a fab core group of friends who don’t judge me for my methods of keeping contact.
  • You can still have fun with M.E. It’s not as easy and you might have to redefine what fun means, but fun is out there if you look for it. My pre-M.E methods of fun included dance, long walks and endless socialising. Now I enjoy watching dance clips on YouTube and chat with friends online or through emails. I might not be able to walk in the park and look at nature every day, but I can grow plants and look at those instead. I’m currently having a lot of fun trying to get my new Amaryllis plant to grow in a perfectly straight vertical line. M.E might consume my body, but it doesn’t consume my mind or my life!

*This post has also been published on Huffington Post UK’s blog section – you can read it here:-

http://www.huffingtonpost.co.uk/laura-roche/me-awareness-week_b_7252308.html

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The power of small goals

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I’ve always been someone who likes to set goals. They are usually big, if not grandiose and cover all aspects of my life. The timescales set to achieve them are just as ambitious.

I’ve always thought you can achieve anything if you put your mind to it. I think it’s important to know what you want out of life and live to your full potential.

I think this ties in with being a perfectionist. I’m someone who pushes themselves to the extreme.

I’ve achieved a lot in life, but one thing that’s always annoyed me about myself is that I think the goal setting is enough, without planning how I will achieve said goal. I have vague ideas and will generally head in the right direction, but find it hard to work out a logical plan showing how I will get there.

I’m also not very good at accounting for life getting in the way.

Or accounting for whether the goals and timescales are realistic.

The goals are also in a fixed and immoveable state, and I find it hard to be flexible over what would constitute achieving the goal.

Then when there is no sign of me achieving the goals anytime soon, I beat myself up and feel horrible.

For the last 5 years, life has been very difficult indeed. For those who have not read my earlier posts, my Dad died suddenly and I suffered a period of severe Depression and Anxiety. My ongoing health problems (Neutropenia) were even more difficult to manage than usual during this time and just when the mental health problems began to improve, I got diagnosed with M.E.

For those who are not familiar with it, M.E stands for Myalgic Encephalomyelitis and is otherwise known as Chronic Fatigue Syndrome. I can sum up the condition by saying it involves feeling totally fucked all the time. You have less energy than a corpse and your brain becomes enveloped in a thick invisible fog which makes it hard to carry out any kind of joined-up thinking. You are essentially fucked over in mind, body and spirit.

Although the official medical consensus was that the M.E resulted from a bout of swine flu, I’m convinced that it is the result of years of strain from severe Depression and Anxiety.

This period of bleak wilderness was largely defined by a complete lack of control over my moods, health and energy levels. I wasn’t too concerned about achieving the big goals I’d set up for myself, but it was devastating that I seemingly couldn’t manage even the simplest tasks.

It’s always been important to me no matter how incapacitated I am to achieve something every day, even if it’s just doing a sink full of dishes. I hate to feel that I’m just existing. It makes me feel like a useless blob of nothingness. I’ve never been any good at relaxing either; I don’t believe there is an ‘off’ switch anywhere in my brain.

There is no cure for M.E, but I was offered NHS support which involved attending a management programme. Through this excellent support, I started to see that my attitude towards myself and my unrealistic goal setting was actually making everything worse.

I was taught that the more I pushed through M.E, the worse it would get. It was unbelievably difficult to accept. I had to learn the limitations of my energy levels, assess them on a daily basis and not go beyond them. If I did there was ‘payback’, where I would end up fucked for days or weeks afterwards.

It’s only now, 2 years after diagnosis that I can accept it was the wake-up call my body and mind needed. I had to accept I was overloaded with stress and that my body had manifested this as illness. Any unrealistic goal setting, or doing too much had now become a punishable offence.

The therapist I saw during this time helped me see that I didn’t have to constantly achieve things at every stage of my life. She said I had achieved things in the past and would probably achieve things in the future, but for now, maybe I wasn’t able to achieve much.

I realised that if I was going to get through this terrible time, I had to completely change my expectations of myself and what I could realistically accomplish. It was difficult, because it felt like I was changing a fundamental part of who I was. I was worried I would become lazy without the grandiose expectations of myself and the desire to push through problems no matter what. I worried people would think I wasn’t trying hard enough.

At first it didn’t sit well at all. I was signed off work sick and too ill and exhausted to go out much. It seemed my body had came to a complete standstill. I was stuck in the house looking like shit, feeling like shit, surrounded by shit. The fact I had no strength to deal with any of it sent me mental.

There was no way I’d admit to how bad things were or ask for help. My partner knew obviously, but I wouldn’t ask him to do things in the house as I liked the way I did it better.

At heart I am a blitzer – if something needs doing, or if I start a project, I carry on until it’s finished. I sulked and felt bitter that I couldn’t blitz the house and the many other things on my ‘to-do’ list. I ignored the advice I’d been given and did stuff anyway, even though it wiped me out for a disproportionate amount of time afterwards. I wouldn’t do a small part of a job because it annoyed me to leave things unfinished. I felt a sense of entitlement that I ‘should’ be able to do what I want, the way I wanted to. So, for at least 6 months after the M.E diagnosis, I was in a weird state of knowing I had to change, but feeling unable to do so.

The irony is that part of my job involves helping people to break down tasks into small manageable goals. I’m very good at doing this with other people’s tasks, just not my own!

One of the main things pissing me off was that I couldn’t read books the way I used to. In the past I could finish a book in a weekend, but now it takes 6+ months. I have to keep re-reading the first chapter because I’ve forgotten what’s happened. I decided to try the ‘Quick Reads’ series, which were much shorter and manageable. One book I read was called ‘How to Change Your Life in 7 Steps’ by John Bird (founder of The Big Issue) He talked about the concept of tackling goals in 3% stages. It didn’t matter what the goal was, just estimate what 3% of it was and do that much every day.

I had a go, even though it felt silly. I wanted to re-organise the bedroom but was reluctant to tackle it in case I did the whole thing and ruined my energy levels. I deduced that 3% of it constituted the piles of shoes everywhere. Half an hour later I’d finished arranging them into hanging organisers and the floor was clear. The incredibly difficult part about this was stopping. I felt desperate to carry on with another task and it was mentally painful to resist.

The next day I made a pile of clothes for the charity shop. The day after I tidied some drawers. After a week I could clearly see improvements and I began to feel a sense of satisfaction with my achievements. It’s still not finished a year later because it needs decorating from top to bottom, but I know one day it will be.

Another area which bothered me greatly was the lack of writing progress. Everything had ground to a halt when my Dad died, yet I still hankered after the big goals. I wanted to finish a book I’d started, complete a home study course in freelance writing and become a published writer. My therapist suggested I write 100 words a day of anything and see where it went. I remember feeling almost offended when she suggested it; this seemed like such a shitty little goal which wouldn’t go anywhere. But in the spirit of John Bird’s 3% approach and the success of the bedroom project, I began to try. I started early drafts of this blog. I was so pleased when my first blog post came together, even though it took months to write. I realised that my goals connected with writing – to connect with people, engage with them and make a difference in some way, were happening as each post was uploaded. I got instant comments and feedback which verified I was on the right path. I’d been so focused on the elusive ‘publishing deal’ that I was unable to think flexibly about different ways I could achieve what I wanted with my writing.

I think I still have a long way to go. I constantly feel as though I’m having to un-learn everything I’ve known thus far. M.E is a thankless condition, but it’s taught me valuable lessons about listening to my body and working within my limitations.

I’ve learned never to underestimate the power of small goals. I’ve also realised there is a lot of enjoyment to be had on the journey towards goals. Now there are no deadlines, no timescales, just ideas, small steps and progress in the right direction.