The Unwanted Season, Episode 12 (Help!)

I am swallowing my pride and asking for your help. Anyone who has any level of interaction with me, I really need your help to survive the next few weeks.

Let me explain… I finally saw a clinical psychologist yesterday who works alongside a physiotherapist in rehabilitating people with CFS/ME. The relief in talking with someone who not only actually understood what I was talking about but was sympathetic and positive about me making a full recovery (with time) was immense but what she has asked of me feels nigh on impossible.

The main cycle I have been stuck in is a rollercoaster of doing too much one day (because my energy, in comparison to my ‘normal’ is good) followed by feeling much worse as a result and having to spend a few days in bed recovering. Even on my good days, I struggle with a ¼ of what ‘normal’ people can manage. If you’ve ever travelled – three hours to the airport, several hours check in, a twelve hour flight where you can’t sleep, getting through passport control, jet lag of a few hours, several more hours travelling from the airport to your hotel where it’s only nine in the morning and you aren’t allowed to sleep until the night – well, imagine that feeling of exhaustion and you get some sort of idea what CFS feels like constantly. And no matter how much you rest, you still feel that exhaustion. It feels like you are dragging chains around behind you, Marley-style.

Apparently, though, the very rest I have been feeling is vital to survival has actually been sapping me.

Our bodies need 8-9 hours sleep a day and any more than that and it starts having an adverse effect – any less than 7 and you also start doing damage. So despite my body saying it was exhausted, giving in to that and sleeping actually prolonged it and made it worse. You see the vicious cycle?

Last autumn I saw a rheumatologist who suggested I regularly went swimming and I have been faithfully doing that. It hasn’t had the breakthrough I was hoping for though and now I’m discovering why.

According to my psychologist (it’s NOT all in my head but they have to treat it under mental health because blood tests/scans all come back fine!), I have two ways of approaching the next few months:

  • Slowly cut back on the time I spend sleeping; or
  • Go ‘cold turkey’ and set a schedule for my day which I rigorously stick to.

And being me, I’m going ‘cold turkey’. This means I have to crawl out of bed at 6.30am each morning and am not allowed to get back into it until the evening, with a set ‘lights out’ at 10.30pm (although I may push that back to 9.30pm!). I am allowed one 20 minute nap if I absolutely have to.

It’s sheer agony.

And I’m not overdramatising.

You are talking to someone who has previously been surviving the exhaustion and pain by sleeping at least 15 hours each 24 hour period – I’m cutting down to between 8-9 hours.

Whilst I am awake I need to do a 7 minute walk in the morning and a 7 minute walk in the evening (which will slowly be built up). I am allowed to do 20 minutes of activity followed by 5 minutes of rest (which literally means sitting still and doing nothing – but not falling asleep either). I have to spend more of my 20 minute slots doing relaxing ‘me’ things. I have had the order from the doctor to be selfish and devote time to caring for myself.

It is really really really hard!

I am surrounded by a house that needs unpacking, cleaning and decorating and I am only allowed to do small chunks of it whilst I have to do largish chunks of reading, crafts, music, etc. Yes, it may sound like bliss but when you have limited energy, trust me, you want to do ‘important’ things (like cleaning the kitchen!). Plus I have spent my whole life wanting to help others and do ‘useful’ things. I am having to completely change my character here!

Day 1 of the regime and by 9 o’clock I was so ready to crawl back into bed. I feel like crying now at 11.30am knowing I am not allowed the nap after lunch which I am craving. My pain levels are ridiculously high (advantage of sleep – if you sleep deep enough, you can’t feel it!). And I have another…9 hours before I can even start getting ready for bed!

So if you see me/speak to me/pray for me – please bear with me over the next few weeks. Apparently it *should* eventually start easing a little but for now, I am in pain, exhausted and not allowed to crawl into bed. If I look exhausted – it’s because I am. Even more exhausted than I used to be previously which is quite impressive! If I look bewildered – it’s because I am. This new lifestyle is counter-character for me and I can’t fully get my head around it. If I look lazy – it’s not because I am. It’s because I am having to retrain my body and mind to relax and rest. Trust me, there is no (bad) thing you could say about me that I haven’t already beaten myself with repeatedly.

So please guys, please help. I’d appreciate it if you could pray I have the willpower to stick this out and not give up. I’d appreciate hugs and encouragement. I’d appreciate it if you’d also support Joel as he supports me through this because he’s the one having to cope with it day in, day out and this is going to be just as hard for him. I’d appreciate you not saying how much you wish your doctor would tell you to do this and have all that restful relaxing time (unless you also would like to take on the pain, fatigue, brain fog and nausea?). I really would still appreciate visitors as long as you don’t mind the house looking a tip. And I’d appreciate it if you just stick with me on this.



Creature Comforts vs. Materialism

I haven’t come with answers today. I’ve come hungry and searching. If you wanted the put-together version, it’s not here.

I was always the one who loved creature comforts. I love my bed, blankets and stuffed penguin. I love dressing up nicely with my collection of earrings and scarves and cowboy boots. I love books and BBC Austen dramas.

Yet I dreamt of African soil and people too.
When the pastor despaired of missionaries going out, I was on my knees crying because I so wanted to go.

I don’t doubt He has called some to go to Africa but for some of us, the call is to live radically in the village we were born in; in materialistic Britain, I can’t help wonder if this is the harder calling. James speaks of true religion and I so often focus on the first part – taking care of widows and orphans – and forget the second: to live unpolluted by the world.

God gave us good things. And yet materialism is a sin I’ve been caught in way too often. Where is the balance? How do we live radically sold-out lives and still finish degrees, do the cleaning, have lunch with friends, buy a new dress?

Where is the balance because I know there is one. I don’t think a God who made butterflies can be accused of hating beautiful things. Yet He also commands stewardship. How can I claim to care for those less fortunate and yet spend money on jewellery? WHERE IS THE BALANCE? What is the answer? Has anyone found it?

Toilet Tube Saga Update

My family think I owe you all an update on the toilet roll saga. Prepare yourselves for comedy over a deeply spiritual post…
So I’ve been faithfully writing quotes and Bible verses for about 5 months now.
The change is quite funny.
Let’s see, in the past few months I have caught myself…
…grabbing empty toilet rolls OUT OF THE RECYCLING because I had a great quote I wanted to share and everyone had been so good at putting them (the tubes) in the bin!!
…writing on tubes my parents brought specifically from their en-suite so I could ‘versify’ them.
…wishing someone would leave one so I could write on it…

Quite a difference from the previous toilet roll monster.
It’s become a family joke.
And honestly, it really doesn’t bother me anymore.
What was a way to channel exasperation has become a way to drop a bit of encouragement into my family’s lives.

Cutting out a bad habit without replacing it with a good is dangerous. Read what Jesus says of a clean but empty room.  Sheer willpower did not win this battle. Turning what was a place of cursing into a place of showering encouragement – that was beyond me. But we have access to the power that enables us to do that! We can win these battles – with some definite aid from the Holy Spirit!

I may write on toilet rolls for the rest of my life just to remind myself that small annoyances are really that: small. And my attitude is often the biggest problem.

My biggest question now: is it polite to do it on someone else’s house?! Thoughts???

Dear Mirror Girl

Hey, mirror girl, I hope you’ve had a good day since I spoke to you this morning whilst I did my makeup.

Do you remember then? You told me I was looking tired and my skin was patchy. You urged me to cover it up with thick foundation so no one would notice how ugly I looked.

You also reminded me that I wore this top last week and how everyone would realise how unfashionable and sloppy I was if I wore it again (and I reminded you the Duchess of Cambridge wears clothes more than once too so I’m in better company than you).

What else did you raise? Oh yeah. How unstylish my hair was and such a boring colour (fyi, I rather like it).

You told me my thighs were too big and my eyes too small.

You said a lot of mean things, really.

But I left you and went off to live my day, leaving you here.

So let’s see what I’ve been doing whilst you’ve been stuck here…

I impacted children’s lives and encouraged them to keep going when they wanted to give up. I celebrated with them when they succeeded.

I laughed with the great group of people I work with and enjoyed time with them.

I kicked the golden fallen leaves and marvelled that even a broken creation could be so beautiful.

I encouraged a friend.

I hugged my boyfriend and heard him whisper I was beautiful.

I fell in love with him all over again as he rubbed my back and eased tired muscles.

I sat at the piano and made music.

I got told what a lovely colour my eyes were (yes, the ones you wrote off).

I whispered secret Christmas plans with my sisters and wrote lists of what to make and buy.

I did all that, mirror girl. Me. The one you told this morning was worthless and a failure.

I feel sorry for you, mirror girl, but I’m not going to let you bully me anymore. My mum taught me ‘if you can’t say anything nice, don’t say anything at all’ – I think you need to learn that, mirror girl.

Maybe then we can be friends and you’ll realise how nice you can be. You’ll realise one encouraging remark is so much better than a cutting, tearing comment.

I hope you learn, mirror girl, I really do ’cause you and I are close and we’re stuck with each other.

Think about that, mirror girl.

Rejecting The Drip Feed

Every now and then one gets plain sick of the drip feed conditioning that has penetrated one’s deeper self. I just tried on a dress, looked in the mirror and immediately, without  thinking, went “you look fat – you must have put weight on”.
Well, get this, world: I’m sick of this conditioning.

Romans 12:2 – “Do not conform any longer to the patterns of this world.”
I’m done with it.
I state categorically to that mirror and to a society obsessed with appearance:
I am not fat.
I eat healthily, I exercise reasonably, my BMI is at the lower end of healthy if anything.
So shut up, mirror.
My weight is fine.
I will not let you define me anymore.

…”but instead be transformed by the renewing of your mind…”
Not only am I not fat, I’m HIS.
I am loved unconditionally, and incredibly, and unbelievably.
He sings over me.
He wants to spend time with me.
Actually, there are rather a lot of people who want to spend time with me, and love me, and are quite happy with my size the way it is (and have recommended I actually put some weight on if anything). And you know what, world? I care a lot more what they say about me and to me than you with your pack of lies.

So world, you lost a follower.
I just unfriended you.