Tag Archives: CFS

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

Home management tips for people with no energy

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One of the most frustrating things about having long-term health problems is managing a house. If I had it my way, I would live in an immaculate palace. The surfaces would gleam, rooms would be tidy and the air would smell of fresh spring flowers.

Sadly, this is not the reality. The amount of compromises you have to make in managing your health condition(s) can be huge and extremely depressing. It never fails to drive me nuts when I have to go through yet another illness period in a house that I am unable to clean. I’ve had to accept I can’t have things the way I want. I’m constantly compromising on the standards I would like to live by.

Ultimately, it’s about priorities and assessing what’s really important. Health has to come first, and if I don’t have the energy or stamina to look after the house, there is no point pushing through it because I’ll only make myself feel worse. In the past I would make myself completely miserable by saying things like ‘I’ve got a messy, dirty home. I’m a complete failure as a human being.’ This just made everything worse. Not only did I have an illness that wasn’t my fault, I was calling into question my whole worth as a person!

Over the years I’ve learned to give less of a fuck about housework and stuff. I’ve also devised a few methods of creating the illusion that the house is cleaner than it actually is. Here are some of my top tips for home management when your body is ravaged by shit that’s out of your control.

1) Accept that you can’t have things exactly the way you would like. This can be difficult, but I re-frame it as ‘I’ve chosen to put my health first.’

2) Establish what you cannot compromise on and prioritise this. For me it’s having the dishes done and making sure the bathroom is clean.

3) Think about what you notice when you go to other people’s houses. I don’t go in looking for dirt and dust. I notice whether a house is comfortable and homely and whether I feel relaxed there. I do notice when a house is super clean and spotless because I feel slightly uncomfortable and like I might get in trouble if I make a mess.

4) Dust is unpleasant, but look hard at where it really accumulates. I’ve noticed that you can only see it on glass, the TV or dark surfaces. So I dust these more often and leave the rest. You will be surprised at how many weeks, or in my case months you can get away with not dusting white surfaces or pine wood.

5) Changing pillowcases once a week gives the impression of a fresh bed without having to destroy yourself changing sheets and duvet covers as well.

6) Keep all plants well watered and attended to. Nothing says trampy home like a wilting or brown-leaved pot plant. A house full of thriving greenery gives the illusion you are more on top of things than you actually are.

7) If you have piles of stuff that needs organising, sorting, sewing or dealing with, hide it in a cupboard until you are able to tackle some of it in small chunks. ‘Out of sight, out of mind’ is possibly the greatest saying applicable to my home management approach.

8) If there are any areas of the walls needing attention, such as patches of dirt, damp or peeling wallpaper, just cover them up or hide them with pictures and furniture until you have the strength to tackle things head-on.

9) Keep a handful of Sympathy or Get Well Soon cards stashed in a drawer. If faced with a prospective visit from people you feel may judge your living situation, whip them out and write them to yourself. Explain that you have been too ill to sort the house out. You must have been if people sent cards!

10) Assess how much guests need to visit. I’d love to invite people more often, but I find it hard to relax when I haven’t been able to clean or tidy the house. Sometimes it’s just easier to go to their house or meet elsewhere. If you haven’t been to my house for a while, or ever – this is why!

11) Buy clothes that don’t need much ironing. I live in soft, stretchy materials and actually can’t remember the last time I ironed anything. If you have to wear shirts, iron only the collar and cuffs and put a top over them. Never, ever iron bedlinen. The creases drop out overnight anyway. Or put a throw over the duvet cover if any residual creasing remains.

12) Assess your laundry situation. Do things need washing all the time? You may think they do, but give them a sniff and you might change your mind. Anything that is not directly in contact with your body can be left for a lot longer than you think. I like a layered look, so I’ll wash a t-shirt and leggings I’ve worn, but not the dress I had over the top.

13) Assess how much shopping and cooking you need to do. It’s a long-standing joke that I eat at the carvery on Tuesdays and Fridays every week. Much as I enjoy a carvery, it happens mainly because I don’t have much energy to shop and cook. The carvery is also a lot cheaper than it would be to buy roast dinner ingredients (£4.19) and it’s a relatively healthy choice. Shopping and cooking also results in washing up; yet another chore which I’ve managed to wipe out with this arrangement. When I do shop, I opt for quick to prepare, healthy items. Then if I’m too fucked to make a meal, at least I’m looking after myself as best I can. My favourite go-to choices are Uncle Ben’s Express Wholegrain rice (microwaves in 2 mins), ready cooked prawns and ready to eat smoked mackerel, salad, tons of fruit – especially chopped fruit salad, vegetables, houmous, natural yoghurt, nuts and seeds, oat cereal bars, fresh soup, rice cakes/oat cakes, Innocent smoothie and muesli.

14) Only hoover the bits of floor you can actually see. Don’t move heavy items of furniture to hoover underneath. Refer to the ‘out of sight, out of mind’ philosophy.

15) Use lamps instead of overhead lighting. Low light = less visible dirt.

16) Change your expectations of yourself and the timescales you give yourself to complete tasks. As I mentioned in my previous post, ‘The Power of Small Goals’, I am a bugger for having lofty and unrealistic ambitions. This also extends to what I’d like to achieve at home. If you would like everything in your cupboards sorted out, as I dearly would, don’t expect you can do it all in one day. Divide up the jobs into manageable chunks and pick one or two at a time. Chip away at the ongoing jobs and you will be surprised at how satisfying it can be to reach a small goal.

17) Open windows daily, even if it’s Baltic outside. It will freshen your home and hopefully blow some of the dust away.

18) If you are too ill and fucked to do anything, it can help to think of the ‘bigger picture’. I remind myself that in the great scheme of things, having a clean and tidy house isn’t that important. I’m pretty good at assessing how much I can realistically do now, so if there is limited energy, I’d rather spend it on doing something more interesting instead.

If any of you have any more tips I could add to my list, please rush them to me on the immediate!!