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.

 

The Unwanted Season, Episode 11 (My Pain and Your Pain)

My pain does not nullify your pain.

Really, it doesn’t.

Someone was speaking to me today and mentioned joint pain and then added, “But I shouldn’t really be complaining of pain in one place when speaking to you.”  At the time I didn’t have a proper answer but mulling it over, I wish I could go back and say this:

“My pain does not nullify your pain.

I’m hurting, you’re hurting, and neither of us is in the perfect body we’ll one day get.

Just because I’m in pain doesn’t mean you’re not.  Just because my pain may be greater, doesn’t mean your pain isn’t worth talking of, sympathising about and praying over because hey, it’s still pain!

Your pain doesn’t hurt our Heavenly Father any less than mine – it still reminds Him that this world is fallen and not how He planned it.  He didn’t want either of us to have to live in a bodies wracked by pain and, ultimately, death.

Please, just because I have a list of various pains that I can rattle off (so far, my elbows are the only joints that have refused to join in the pain fest – long may it last!), it doesn’t mean I don’t care about yours.  It doesn’t mean I can’t wince in sympathy with you.

You can’t measure pain and you definitely can’t measure suffering so we’re not comparing.  You hurt and I wish you didn’t.  I hurt and I wish I didn’t.

So tell me of the lousy week you had, your exhaustion (trust me, I can really give you a sympathetic hug about that one!), the pain in your little finger (because I now know how much pain a little finger can give you), the fact you are fed up with a broken world and some days wish you were already walking on the golden streets of Heaven.  Tell me of how you wish things were different, that there are times you wonder how much more you are going to be able to take without cracking.

Then let’s pray, let’s hug, let’s smile at each other, let’s remind each other we’re going to make it because He said we would, let’s hold each other as we cry our frustration.  Let’s remind each other that we have an awesome God who is holding us together.  Let’s stumble towards the finish line together and hold each other up when the painkillers aren’t strong enough and we wish we could start amputating painful limbs.”

That’s what I wish I had said.

 

 

The Unwanted Season, Episode 10 (My Unsung Hero)

He’s my rock (with a little r),

my emotional balancer,

my carry-you-upstairs-er,

my tap turner,

my hold-you-when-you-fall-apart-er…

…and so many other things and I need to tell you that. No matter how strong I can seem, if I didn’t have Joel next to me and holding me up (sometimes literally!), I would crumple.

God is my strength, He is my Rock (with a big R) and He is my salvation – do not doubt that. But there is no way I could live as I do without an incredibly supportive, caring and tender husband who isn’t afraid to put the brakes on when I get carried away in a brief spurt of energy. He treats me with dignity, even when I have to be looked after like a child. He makes me smile and laugh, even when the reminders of what I am incapable of pile in. He is so encouraging as I make baby steps and chafe at not being able to run marathons yet. He is, quite simply, the most amazing husband I could never have even imagined hoping for.

God knew I would need a strong man to carry me through this season and He has blown me away with who He brought along! It’s funny because I think people look at Joel and see this laidback, semi-serious/semi-funny, diligent, musically talented guy and miss just how awesome he is. Yes, he is all of those things, but this man stepped into a marriage with a woman officially classed as sick (potentially for the rest of her life). He chose to do that and he’s chosen to stay by me, not only dutifully but faithfully and with a love that shakes me when I realise how deeply it’s carved into him.

There was a song written and the chorus said: “When God made you, He must have been thinking of me” which always sounded so big-headed to me! It’s true though – God had to have been thinking of me when He knit Joel together because only He could have known the kind of man I needed by my side to walk through this and only He could have got it so perfect!

To my incredible husband: I love you and I am so blessed that you asked me to be your wife. I promised you in sickness and in health and we know I always try to keep my promises so I live in hope there’s some health up ahead somewhere! May we keep walking together and with God, may we be that threefold cord that is not easily broken. I love you, my cariad, my Joel.

To those who know of someone with M.E. and/or fibromyalgia: give their family a break! These illnesses affect everyone in a family, not just the person who has them. Joel sometimes has to work a 12 hour shift, come home, make us dinner, help me get washed and dressed, massage me, get me into bed and then wake up after a few hours to top up my painkillers (because whoever designed the packaging wasn’t thinking and I often can’t actually get into them!) and ease my body when it goes into tremors.  Then he wakes up at 6.30 to get ready to go back to work. So if he doesn’t appear to be pulling his weight outside of the home (which he actually does a really good job at!), remember he’s not just a husband, he’s a carer and he’s got an awful lot on his plate. The families and particularly spouses of people with chronic illnesses needed your help, prayers and understanding – they are already pulling more than their fair share!

***

And Joel won’t let me post without adding his own thoughts so I thought I’d better let him… 😉

Hello, Joel here. I don’t particularly want to turn this is a festival of mutual praise, but I told Becky she wasn’t allowed to post the above unless I was allowed to tell you the truth about her.

Becky is an amazing woman. No matter how tired she is or how limited her energy, she will find something useful to do within her capabilities. On a really good energy day that might be three hours of ironing, tidying half the house [he definitely exaggerates!], and cooking me an amazing dinner ready for my return from work. On a more common low energy day it might just be doing paperwork and updating the accounts (and still somehow scraping the energy together to put delicious meals on the table). Even on the days where she can’t move from bed all day [sadly common], she’ll still ask me to get her computer and will spend whatever time she can on church notice-sheets, house-hunting, story writing, or anything else she can. She insists on being as useful as she can, and let me tell you, she does a very good job of it. My life would be a shambles without her. I haven’t lived in so well-ordered a house in decades. It’s paying off too – we’re at the stage of life where we have to talk to the nice people at the bank about giving us large amounts of money to buy a house with, and today when we went to sign the deal for the mortgage, the adviser said he had never seen any applicants come in with such organised, detailed finances in his whole career. And that was all because of Becky. As is the speed with which we were able to act when we found the house we’re hoping to purchase. As is so much else in my life.

Seriously – she’s a fantastic woman and I am so incredibly blessed to have been given her as my wife. I wouldn’t swap My Becky for anything or anyone.
Back off guys, get your own. This one’s mine, and I’m keeping her.

The Unwanted Season, Episode 9 (The Grieving)

No one told me – or if they did, I didn’t hear – how much grieving is tied in to a chronic illness. A lot of dreams turn to ashes and you have to just watch them go up in flames. Joel held me tight last night as I wept and grieved another dream that I’d been hoping for and praying over for a few months. Watching someone else pick up your dream and run with it hurts. It really really hurts.

It would almost be easier to stop caring, stop hoping, stop dreaming. Become hard and insensitive and make a stone case around me. That’s not how we were called to live, though. Hard, calloused people cannot be used or molded by God and one of my greatest prayers is that this time doesn’t get wasted.

We’re told to be content in all situations and I am trying, honestly I am. I don’t want to be a bitter person that no one likes being around. I try and remain upbeat and spout out lines about how God is using this illness and how He has a purpose. And I do believe that. But sometimes I need permission to grieve when another dream gets smashed or I’m reminded all over again of how little I am currently capable of. I need to be able to cry and mourn and sometimes scream my frustration at a broken body. The Psalms are full of people crying out like that and I think the fact they’re in the Bible shows God doesn’t condemn grief or crying, or even screaming, as long as we don’t use it as an excuse to shut Him or others out. Grief does not mean God has been booted off the throne – it means we live in a fallen world with broken bodies (some more broken than others). Crying isn’t saying God isn’t in control, it’s admitting we don’t have a clue what’s going on and we feel like we’re being pounded by waves that are on the verge of breaking us. Today I have learnt that grief isn’t ungodly. Raising trembling hands to Heaven as tears roll down our faces is not condemned by our Father God. Others may be uncomfortable with it but God isn’t.

I don’t want to end this blog post all bouncy and happy because grief doesn’t just bounce upright and suddenly everything is fine, or at least it doesn’t in my life. Grief means I think I’m doing ok then something happens to trigger it and I’m shoved back into the darkness. But. And there is a massive but. “Now that we know what we have—Jesus, this great High Priest with ready access to God—let’s not let it slip through our fingers. We don’t have a priest who is out of touch with our reality. He’s been through weakness and testing, experienced it all—all but the sin. So let’s walk right up to him and get what he is so ready to give. Take the mercy, accept the help.” (Hebrews 4:14-16 MSG)

We have Someone walking alongside us as we grieve, Someone who can hold us, Someone who knows what grief is.

I don’t want to finish this blog all happy-clappy because reality as Christians doesn’t always involve that but I do want to end it with hope because as Christians we do always have that. Even on days when it’s hard to see hope for our lives down here on earth, we can rest assured, if we cling to Him – because I know He is gripping us tight through it all – we have an eternal hope. Satan can pummel our bodies down here on earth, he can mess with this world and incubate evil but he cannot touch our eternity or alter the fact we are children of a strong, powerful God who will one day call us Home to a place of no more tears, no more pain and abundant energy.

The Unwanted Season, Episode 8 (A New Plan of Attack)

Hope is incredible. It’s a miracle in itself, I’m tempted to believe. Doctors who listen to you and sympathise and give you plans of attack are also incredible and, I’m also tempted to believe, miracles as well! By that count, yesterday was a day of miracles.

The good news: I don’t have rheumatoid arthritis.

The even better news: I may have found a solution to beating this M.E. (that is officially what I have now and I just chose to get the version including ridiculous pain).

The not-quite-bad-news-but-hard-work-news: the next 12 weeks are going to be hard hard work and I am going to need grit and stamina and a lot of willpower.

(Everything that follows is still theoretical at this point).

After seeing a specialist, I have discovered I overworked my body to the point I actually reset my brain! Those years of working, finishing a degree, doing as much as I could at home, being involved at church, maintaining a social life, recovering from never-ending illnesses and minor surgery and dating (the most amazing guy ever, incase you hadn’t got that, who I got to marry) were too much. I thought I could keep pushing my body, whittling away at my sleep, living on high adrenaline constantly, for far too long and I have damaged my body. Not irreparably but definitely badly.

To cut through the medical mumbo-jumbo, our bodies are designed for our nerves, muscles and brains to communicate. The nerves tell our body we’re in pain, the brain listens and informs us and we can then do something about it. Same for muscles, they tell the brain they’re stressed and need to relax and the brain fixes it. The problem comes when you start training your brain to ignore your nerves and muscles and tell them they’re wimps and should be able to take more and should be able to function 24/7. Your nerves and muscles just scream louder to get your brain’s attention. And when he still ignores them, they scream louder. So when you eventually can’t ignore them any more, they’ve learnt to scream so loud, it’s deafening and they refuse to get quieter. That’s what I did. Your body *needs* to be able to relax (apparently we only actually need 20 minutes of deep sleep, where our muscles can completely and utterly relax, each 24 hours but we do NEED that). Your brain, nerves and muscles need downtime. I refused to give it that so have trained my body into a state of hyperalertness where nothing ever relaxes, not my brain, not my nerves, not my muscles. And *that* is what is causing the pain and fatigue.

So now I have a three-pronged attack plan: kill the pain, rehabilitate the nerves, muscles and brain and learn how to sleep properly. Simple, right?! (No, absolutely not!).

Kill the pain: I have been told to stay on medication because in my case, pain does not actually mean my body is doing any damage. It’s just screaming for the sake of screaming.

Rehabilitate my body: I have to teach it to relax. This, as we have discovered, does not come naturally to me! My specialist suggested intensive swimming as therapy. Basically, this uses the muscles which have become very weak, it relaxes them and it tires my body to help it reach the “good sleep”. To rehabilitate my brain: work with a clinical psychologist to learn to pace myself. Not a psychiatrist. The problem is with my brain but it’s not “in my mind”. I am not imagining pain or fatigue, that is very real, he assured me. But my body *is* responding to stuff that barely exists.

And lastly: learn how to sleep properly. This is partly helped by the swimming in giving my body a reason to be tired and sleep. The other side is learning to shut my brain up enough that it’s not constantly jabbering away to my muscles and nerves when I am sleeping.

Whew. It’s a lot and I am under no illusions: these next 12 weeks are going to be hard. I have to push through pain and potentially create even more as I retrain weak muscles. But if I can regain some of my energy and eventually lose some pain it is so so so so so worth it.

God has been my Sustainer this far and He has taught me to cling tightly to Him. I have a feeling a bigger battle is just starting and I’m going to need all of the lessons I’ve learnt over these past few years. I just hope I’ve learnt them right!

Watch this space…

Warning: this blog may contain blood, sweat, tears, meltdowns, anger and fears over the next few months (nothing new, I guess). And hopefully a lot of praise to my God who has held me so far and isn’t going to drop me now. Maybe some progress too!

P.S. Remember: it’s theoretical at this point and only the next few months will show if my specialist is talking sense or not!

The Unwanted Season, Episode 7 (Milli-growth)

My hands moulded themselves around his shoulders and squeezed the muscles, massaging them gently. I used the palms of my hands to calm his travel-tired arms and legs.

He fell asleep and I cried.

For nine months, I have prayed and yearned to be able to massage my husband when he’s tired and sore and for nine months my body has laughed scornfully at the thought.

It’s been a pipe dream, a “one day but not this day” hope that I’ve clung to.

Praise God that all those baby steps healthwise finally got me here. I’m still in the middle of a very long journey but tonight I luxuriate in the joy of being able to do something for my husband. 🙂

The Unwanted Season, Episode 6 (Mundane)

I’ve not written recently because what is there to write?

No miraculous healing.

Nothing’s changed.

Just plodding on.

Slight improvement if you measure in milli-energies.

Doing life as best I can (which isn’t very energy-filled).

It’s mundane at best.

I keep believing in a God of miracles and I am surrounded by mini-miracles.  (Although what is mini about God breaking in supernaturally?!)  But I’m still waiting for *my* miracle, you know, the one where I wake up in a morning and feel energy and still have energy at 1 o’clock and am able to keep going without my naps.

We had a guy come to our church and he stood up on the stage and said, “I’m not healed yet.  I’m still fighting this.  But I could stand up here and say “Look, God healed me” and we’d all be blown away by His power or I could stand up here, not healed, and say “Look, God is faithful.  He’s sustaining me.”  Which is more powerful?”

So I’m standing on my stage and yep, there’s no obvious, miraculous healing yet, but He’s faithful, He’s sustaining me, and there is power in that.  It looks like Satan has won because I’m sick but as long as I keep holding on to my Papa’s hand, as long as I keep believing in that God of miracles, as long as I stand firm on God’s promises and remember He has never broken one yet, as long as that holds firm, Satan isn’t even winning.  It’s a lost cause for him.

Mundane does not mean God has fallen asleep.  It does not mean I’ve stopped praying.  It does not mean my faith is dwindling (although yes, I could always do with more faith!).  If God is God in the valleys when it’s pitch dark and on the mountain tops where we dance in the light of the sunrise, is it too much to believe He’s the God of the hard climb that happens between the two?  I don’t think so.  So my climb may be boring at the moment, certainly to onlookers, but it’s not God-deficient and I pray it never will be.