Surviving the curve balls of life whilst living with Chronic Fatigue Syndrome

September 04, 2015

Life can be hard. There is no doubt about it. Life throws you curve balls that you didn't expect. These happen to everyone. They are tough, they are effort, and they can cause pain and heartache that you just didn't bank on in your everyday week. You crash your car, the garage floods, you injure yourself at work, you need to move house, the insurance company mucks you around, you catch a bad chest infection, your car number plates get stolen, you need surgery... the list goes on. All not too out of the ordinary things, but definitely enough to cause more than a blip in your week. I've experienced a number of these recently...actually...all of these, and as I have struggled to deal with each one without feeling completely overwhelmed, I feel that I keep being told that they are 'normal things' that 'everyone experiences', and essentially 'what's the big deal?', and I walk away feeling like a drama queen.

Why then are these life 'blips' or 'curve balls' threatening to overwhelm me?

See, I have chronic fatigue syndrome, and with this comes a whole lot of additional baggage that makes each of these 'slightly-out-of-the-ordinary' blips on my life so much harder to deal with. With that in mind I thought I would take some time now to share why this is...why these events/occurrences knock me around so much!
So, here are 7 reasons why this is so...

1. Decreased Rationality
Have you tried making any decision or deal with any change in circumstance or routine whilst functioning on the equivalent of an hour or two of sleep? This is a baseline for someone like me with a fatigue based chronic illness. You are so ridiculously tired and fatigued you are nauseous, and then something happens and someone somehow expects you to make an informed, rational decision about life, and to do so WITHOUT tears! Who are they kidding...I have enough trouble verbalising my regular coffee order each day!?!

2. Cognitive Brain Fog
Along with the decreased rationality comes brain fog. A phenomena where your brain literally feels like you are wrapped in cotton wool, and all clear thinking and brain activity is well and truly grounded. Over the years I have taken pride in being able to manipulate numbers quickly and easily...not any longer...I struggle to now add up my share of a bill in a restaurant...the sort of maths I used to teach my first graders to do! So now something like trying to make sense of bungled insurance payout paperwork, seems as tricky and as foreign as calculating quantum physics!

3. Pain
In the past month I have had a pretty decent chest infection. Some of the symptoms that are experienced with this include pain, fever, headache, fatigue, muscle aches, sore throat, nausea....wait a I talking about a chest infection or chronic fatigue syndrome? These symptoms are my normal everyday experience of life with CFS. So take that as the baseline and add in on top of that all the symptoms (many of them double ups) of a respiratory infection and you will soon understand that what getting an infection on top of a chronic illness might actually look like! 

4. Fatigue
I have a certain (rather small) pool of energy that I can access each day. For me, that energy does not stretch as far as shopping, cleaning or doing my own washing...I use enough energy each day having a shower, eating and trying to make it to countless medical appointments. Each week is planned and managed closely so that I can try make it through the week without any major fatigue crashes. So when you throw in the need for trips to the motor registry for new car number plates, the hardware store for screws for the new plates, phone calls to the police and then to the insurance company, and out goes the window my entire well planned energy conserving week, and in its place comes a couple of days spent in bed.

5. Anxiety and Stress
Then take something like moving house. I have now moved 3 times since having CFS (and 3 times as an adult prior to this). Moving is torture...I am sure we can all agree. Moving with a chronic illness is a nightmare. Why? Because I know how much energy, effort, planning, exertion and physical pain goes into moving, and I know I don't have anything close to that kind of energy...not even if I was to save up all my energy for the month and commit it all to the moving process...I will still be stretched way beyond what I can physically and cognitively do...and so because I know what is ahead of me, and how I know my body will not cope, the stress and anxiety about it goes through the roof. So now not only am I trying to manage my physical energy levels but my emotional levels as well! 

6. Expense
Being chronically ill is expensive...especially when you can't work and are relying on government support, savings, or the blessing of family and friends. So take for instance, me crashing my car the other month. Happens to all of us (some more times than others) at some point in our lives. But if you take how much I was out of pocket for the insurance excess and calculate that I could have actually spent that money on 15 doctors appointments, or 3 months worth of medications, or 135 can see where I am heading...

7. Doubt
When chronically ill, you spend a lot of time second guessing yourself. Maybe this is a result of the countless medical appointments when you have walked away in tears after yet another doctor has not validated your illness purely because the test results 'do not make sense', or after being told again and again by people around you that you 'look well, you must be feeling well'? Am I imagining things? Am I making a mountain out of a molehill? This perpetuating cycle keeps gnawing away at you as you attempt to balance all of the above, whilst trying to tackle the curve ball in the week.
Now, don't get me wrong, I don't want this to be a pity party or a shaming conversation. See, despite these curve balls being plain out a challenge to deal with, they are only part of the larger picture. I am thankful that the hard things in life are nothing in comparison to the certain future and awesome hope that I have. I know that these things are fleeting... 'The pain that you are experiencing does not compare to the joy that is to come.' (Romans 8:18 paraphrased).
I am so thankful for this hope. I am thankful for those walking alongside me who know that life with chronic fatigue syndrome is hard, and who support me along the way, who make sense of my financial paperwork, who listen through the tears, who interpret the irrational me, who drop sushi over 'just because', who give up their free time to help me pack and move, who drive me to countless appointments, who help me with the everyday, and point me to Christ. And who reassure me that I am not a drama queen...and help me to survive whatever life throws at me!

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