Tag Archives: chronic fatigue syndrome

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

10 tips to keep your sanity when you have chronic health problems

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Living with chronic health problems and long-term illness can push you to your limits physically, which in turn, can send you over the edge mentally. Having lived with Neutropenia and M.E (Chronic Fatigue Syndrome) for many years now, I can verify that these illnesses have threatened to crack my sanity and spirit like a boiled egg shell hit repeatedly with a spoon.

In order to get through the rest of my life with some semblance of my mental health intact, I’ve developed several ways of coping and getting by that I’d like to share with you today.

1) There’s a lot of advice floating around about ‘accepting’ your situation and coming to terms with it and that’s all very well and good if you can do it. After 17 years of illness however, I am no closer to accepting it than I was at the beginning. I’ve now decided to accept that I can’t accept it and deal with that instead. I believe it’s healthier to feel all your feelings, even if the so-called negative ones such as anger, frustration, bitterness, envy, loss or regret. What I’ve discovered is that these feelings are fluid anyway and it’s impossible to stay feeling any one thing forever. If I allow the feelings to come without saying ‘I should have accepted this by now!’ they usually pass of their own accord and then I can get on with making the best of things.

2) Work out what your physical and mental limits in life are and stick to them. This is a lot more difficult than it sounds, but I’ve learned the hard way that ‘pushing myself’ is no longer an option. I’m done with payback and exhaustion from not listening to my mind and body.

3) In order to achieve 2) do not listen or pay attention to anyone who thinks you should be doing more. This is also a lot more difficult than it sounds but unless someone has the exact same conditions as you which affect them in the exact same ways, they have no place advising you on anything.

3) Forget about rigid time-management and organising your life. I tried this for years after I first got sick thinking it would help me maximise the time when I was well. What happened was that I had to change my plans and alter deadlines so much due to the unpredictable nature of my illness that I ended up feeling like a failure who couldn’t get things done. As difficult as it sounds, ‘going with the flow’ is a better mental approach for me than putting expectations on myself that I can’t live up to.

4) Prioritise instead and then you will be able to live with the lack of order in your life. My priorities are my health/self-care, work, partner, friends and family ( all at the top together ) Sadly, my goals and ambitions have to be lower priority because it’s just common sense that I can’t do everything at the pace I want to. Hence the sporadic blog posts, the years it took me to start getting my writing published and the YouTube channel that I’m desperate to develop, but which is moving along at a snail’s pace. Everything else like housework, decorating, crafts, reading etc is lumped together at the bottom of my priorities because if I kept up with them at the level I would like, the top priorities would suffer. Travel is nowhere on my list of priorities, even though if I was well I’d love to travel more. It takes so much energy that it is permanently on a back burner. Even going away for a few days results in payback and massive exhaustion. Trying to do everything will definitely send you insane.

5) If anyone has the audacity to say to your face they don’t believe your illness exists or that you aren’t really that sick, there are two simple steps you can follow. One is to talk to them and try to educate them about your illness and if this doesn’t work, you can go straight  to step two which is to remove them from your life via the nearest available exit. If that’s too brutal for you, try a gradual ‘phasing out’ so that you see and talk to them a lot less. These people are called ‘naysayers’ and they are one of the biggest threats to your sanity

6) Indulge yourself often. Living with health problems is 20 times more difficult than living a normal life, so regular treats are essential to stop insanity showing up on your radar. For me it’s clothes and I don’t care if I have too many or don’t need any more. I work very hard to keep my job whilst feeling awful and so if I spot a new leopard print item, I’m having it.

7) NEVER compare yourself to anyone else who is well. Comparing yourself to someone who is well is futile and also a bit silly. You might as well open the door to insanity and offer it a cup of tea.

8) Don’t feel you have to put on a brave face worse still, be ‘inspirational’. All of this can take energy and make you more ill from the effort.

9) But don’t moan a lot either, because this can also be very draining, for you and everyone else.

10) ‘Big up’ yourself and remember to congratulate yourself regularly on the achievement of surviving health issues. Not going insane takes considerable effort which can’t be underestimated. I said ‘well done’ to myself nine times yesterday!

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!!

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.

Diet Coke break and awareness raising.

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I thought it might be time for an interval. I assume it can be quite tiring reading about someone’s nervous breakdown so let’s have a rest. I am having a Diet Coke, which is always my beverage du jour.

I will lighten the mood by telling you about a flash of inspiration I had yesterday. It occured to me that there is not enough recognition of people who struggle with long-term mental or physical health problems. I have four lifelong issues. Depression, anxiety, cyclical neutropenia and M.E. I am a very lucky girl. If you have never heard of cyclical neutropenia, don’t worry. Stick with this blog and you soon will!

I’m not saying I don’t receive support because I do. I just think as a society there should be more ways to acknowledge and recognise people who are surviving the feat of endurance known as long-term health problems.

International awareness days/weeks are a great start. However they only happen once a year and usually focus on more common illnesses. For instance, I was glad to share information about Depression and M.E awareness weeks recently, but there is no neutropenia awareness day because the illness is so rare and uncommon. The cyclic neutropenia which I suffer from affects only 2 in a million people. I am part of an online support group and suggested we try and get an awareness day off the ground, but was told by a fellow member we were already lumped under ‘rare illness awareness day’. I’m currently trying to see if there is any way we can get our own day started up.

Spock from Star Trek  said, “The needs of the many outweigh the needs of the few”. I can see that in the case of more common life threatening illnesses such as cancer and HIV, the needs of the many certainly require attention. But why can’t we recognise the needs of the few AS WELL? Surely there are enough resources and interest around to generate some extra publicity for the unfortunate people suffering in their rarity and quietly managing in silence?

My flash of inspiration involves devising a range of greetings cards to support, honour and empathise with people suffering long-term health problems. There is definitely a gap in the market for this. I know there are the basic ‘Sympathy’ and ‘Thinking of You’ style cards but why is there not a specific range which sums up the dreadful scenarios some people go through in life? Death is more recognised in the card industry than long-term health struggles. It is possible to buy every type of card to support different types of bereavement, including details of family member/step-family member or friend on the front with a helpful verse inside, should you not know what to write yourself. ( Actually, I did note one gap in the market here for death of a pet – which I believe can be just as difficult as losing a person.)

I propose something like the following for starters:

“With deepest sympathy on your diagnosis of a debilitating lifelong disorder”

“My thoughts are with you as you continue your struggle with depression”

“Wishing you love and support with the many health difficulties you face”

I know I would be thrilled to receive a card like this. It isn’t easy to communicate to people that you recognise their long-term struggles, so until the little-known or stigmatised conditions get more awareness days/weeks, why not send a card?

I may write to Hallmark with my idea. Or I might just start making them myself.