Dare to dream, living with Chronic Fatigue Syndrome & managing expectations

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8 September, 2012 by talungatales


Living with CFS (Chronic Fatigue Syndrome) means constantly battling with what you ‘should’ do, ‘want’ to do, and what you ‘can’ do. The expectations put on you by yourself or others can be a ‘make or break’ deal, a balancing act, between what will make you happy and make others happy. There’s fine line between good and bad management of those expectations in such a way that it doesn’t compromise your health even further. (If you’re not quite sure what I’m talking please read the Spoon Theory – you won’t regret it.)

Chasing ghosts.

It’s been well over a decade since I was first diagnosed. For the first 5 years or so after my condition was given the misunderstood and lacking label of CFS, I fought hammer and tong to work my way back to better health, or at the least prove I wasn’t lazy and could keep up with the expectations of myself and those around me. I eventually learned that fighting was futile, it just used up more energy and made me sicker. There was no point in chasing the elusive cure or pick me up. There isn’t one. Once I stopped fighting and accepted that chronic fatigue syndrome was now a permanent part of my life I began to focus on what I “could” do. My life wasn’t over, it was just beginning a new chapter and I had to learn new ways of doing things.

What does CFS feel like?

Chronic Fatigue Syndrome makes your granny look young.Living with Chronic Fatigue Syndrome is like living with the flu 24/7, coupled with a hangover without the puke. I’m talking about the “mother of all flu’s” not just a garden variety virus which makes one feel a bit off colour. Just so you can understand, I’m referring to where you ache in every joint, muscle and fibre of your body and having a shower is as exhausting as climbing Mt Everest. It’s the kind of pain that leaves me envying octogenarian’s ‘cos they’re more spritely than I’ll ever feel. Some days I’ll wake up worse than others. Brain fog and memoryyyy … what was I saying … ah, yes memory … loss, are constant and inconvenient companions. Even the simplest task of writing a word will fail me as my hand can’t coordinate a pen. My brain scrambles to control muscles, and coordinate the spelling at the same time. The word ‘little’ might become ‘litlee’, ‘littlle’,  or ‘ltlle’ and then I struggle with how to correct it! My otherwise neat handwriting looks more like chicken scratches. There’s no way of really describing how much energy is involved in such simple tasks, which I once took for granted.

Dog on bed

Not even the dog understands ‘wumbled jerds’, he just wags his tail politely.

Symptoms vary greatly on a daily and sometimes even hourly basis. Some days the ‘brain fog’ is relatively light and I can accomplish the bookkeeping, quotes for customers and even a conversation without ‘wumbling my jerds’. Other times everyday instructions to the kids or the dog take on a dyslexic syntax – often leaving the family in stitches of laughter and the dog confused, head cocked to the side and tail wagging politely.

At times I struggle with even the simplest conversation or phone call – a challenge when working in the home office (or bed). “Gee I hope I get this message down correctly”. I try not to let customers know about my illness so writing things down is really important as I can’t rely on my memory any more. A conversation with a friend is bitter-sweet as I find myself feeling overwhelmed – my brain unable to keep up with the multitasking involved in reading body language, listening, remembering a response and then formulating the words into a coherent sentence. I cringe as light and sound sensitivity sets in, each syllable clanging in my ears and making my brain pound against my skull. Symptoms are often worst in the evenings when I need to retreat to bed and often eat alone, enviously listening to the cacophony in the kitchen as the family eats together.

My symptoms are often unbeknownst to those around me – all except my dear OH who can read me like a book. He often sees the signs of a crash before I do. (A bad crash being when I go into a state similar to shock). The disconnection, vagueness, palour are apparently all a giveaway. To others I just appear as antisocial, rude and disinterested. It couldn’t be further from the truth and their misguided, flippant comments cut deep. My illness makes me thin-skinned, but it’s at these times that I try to fake a thick one, sapping more energy!

Whose expectations do you listen to?

If I were asked what the most difficult aspect of this whole scenario is, I’d have to say that it’s being with people who refuse to understand me or what I go through on a daily basis. They set unrealistic expectations of not just me but my family as well. I’m not one for a ‘pity party’, but if you can’t be bothered understanding where I and my family are at, and where our limitations are then please don’t dump your expectations on us. It hurts us. It took me years to accept where I’m at, and still these people, be they family or friends, are unaccepting and critical. My illness impacts on not just me but on my whole family. It’s not just me that’s isolated, but they too.

We both try to be ‘practical’ rather than ’emotional’, a survival strategy developed long ago, as a result of burning myself out every time we had an event to attend. I think my OH felt defeated saying he had lower expectations, but it became easier when we reframed expectations as being achievable ones. Changing our focus from “can’t do” to “can do” made a huge difference. However, others still hold up their high expectations and I doubt they’ll every accept the way things are. That’s their problem. So long as my family and I are happy then that’s all that matters. Deal with it! We’ve had to.

Fear and consequences

Family functions are always hard. My dearest OH is turning 50 in a few weeks. I so wanted to organise a surprise party for him but reality checks crept in and I never did anything about it. “Where will people stay? Can I travel to a restaurant somewhere? What if I crash, I’ll have to leave early, then everyone will be disappointed or worse, resent me for stuffing things up. If I arrange something at home will I have the energy to cook? What time of day can I manage? What if I have to withdraw? How will I cope with the noise?”  As it stands my dearest (after pressure from his family) has made his own arrangements for a get together – he’s decided to do so, here at home as I’ve missed so many other family events. I’ve encouraged him to invite a few of our closer friends. The instinctive drive to socialise with people I love, will kick in the adrenalin for a while but we all know that my bodies aversion to stimulation and lack of energy will put me back in my box, and leave me there for a week or six as a consequence.

As it’s on a long weekend and we have a display booked (for our wrought iron business) for Sunday and Monday, it left Friday night and Saturday available. We needed Saturday for setting up the display. I’ve had to let go of any involvement in organising the party as we both know that the evening will be a struggle if not impossible for me leaving my OH with catering for his own party. Maybe I’ll be able to do a soup, and/or a beef stroganoff (in the slow cooker) a day or so beforehand to help? Frustration sets in as I know I’m unable to make a commitment, something that goes against every grain of my being. At least he understands.

Dream new dreams…

I’ve always had two dreams, one to live in the country and the other to have a small business. If it wasn’t for the fact that neither of us was working because of this illness we would probably still be living in the city.

View over the Adelaide Hills, SA

Dream 1: Moving to the country – this is my view every day.

I was determined to chase my first dream and found a property 45 minutes from the CBD, with a semi-detached unit. We sold my house and my mother hers, and moved. Best thing we ever did!

To achieve my second dream, I had to put it in realistic terms. It was simply to work again and be productive. I set expectations of what I could do. When the opportunity arose I chased my second dream, made it eventuate and my dearest is happier for it.

Cutting from Country Style magazine

A clip from an article in Australian Country Style

Even though he’s my carer, my OH is now working in our own home based business doing what he loves. I’m also doing what I’m good at – just slower, with less energy, and at times from bed – cos that’s the only way I can do it. If it wasn’t for this illness we’d probably both be working for other people in jobs we probably didn’t really like. We’re now living a dream doing what others wouldn’t have the guts to give up a job for and pursue, and dare I say “are bloody good at it”. So much so that we employ one person full-time and are no longer dependent on social security. How good is that?

Where to now?

I hope this blurb helps others who may be in a similar situation. The worst you can do is “suck it up” and push on – especially if it’s to meet someone else’s expectations. It will break you and it will break those who really love you. See your life as entering a new chapter. Embrace ‘it’, work around ‘it’ and most of all learn to see how ‘it’ can shape you into a better person. Don’t go by other’s expectations. Make your own and make sure they’re realistic and achievable and most of all allow yourself the opportunity to dream. Learnt a new mindset, a healthy one.

Footnote:  The 50th went well, it ended with my daughter going into labour just as most guest left around 10ish. I was high on adrenalin for the whole weekend – new grandson, a two day show that I could only manage one day at, a whole day helping newly discharged Mum prepare the house (she went into labour early and got caught out) and then the ensuing crash for the next few weeks! Was it worth it, hell yeah! Did I pay, ah ha.

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6 thoughts on “Dare to dream, living with Chronic Fatigue Syndrome & managing expectations

  1. I have trouble with spellings/typing as well!

  2. Thank you. This blog post really helped me, since it touched on a lot of things I’ve been struggling with the past couple of months. I’ve been recently diagnosed with this illness and it’s been a hard adjustment. I feel like I’ve been in the fighting stage for a while now, but you made a good point that that just use up more energy of our already limited energy supply. Another thing that this illness as brought to the for front for me, was my desire to find a job that let’s me have the option to work from home so that I have more of an ability to travel when I feel up for it or stay home and not feel guilty about using yet another sick day when I need to. It’s so frustrating to be right at that edge of energy where you can do stuff laying down, but getting up and going somewhere is too much. It’s really hard for other people to understand that it’s not just someone being lazy.

    • talungatales says:

      A couple strategies which have helped me: drink a couple glasss of Salvital. The magnesium and salts help boost the blood volume a bit. If you’re going out, wear a pressure garment like ‘Skins’. They help to lessen the amount of blood pooling in the legs which in turn helps. Don’t be afraid to get a new job which is less demanding. If you’re looking at working for yourself don’t do it unless you have someone who can pick things up when you fall. My OH handles anything stressful and I direct from the background and do the admin stuff. At my own pace. It’s really important to pace yourself. My doc once said “always do 1/3 of what you think you can do”. It’s been a good rule of thumb. Be kind to yourself.

  3. jeanie bostian says:

    Wow you really put it in words the things I also struggle with! All the above the pain is not so bad for me but the fatigue and fog is constant.

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