A Response To the Response

One of the earliest things I can remember learning about British politics was that the Government are supposed to represent the people. That’s it stripped right back. And right now people are saying a lot about the politicians and how they’re a mud-slinging, lying, abusive set of people (that’s the abridged and clean version) and how horrified they are that they represent us. You know what? Take a look on social media today and I really don’t think politicians are far off in a representation of the British population.

And the future politicians – the children of today – are watching us react and learning how ‘politics’ work.

They are seeing that name-calling is ok, that completely slamming people without understanding two people can actually have differing opinions and it doesn’t make one of them a ***** is ok, they’re discovering that verbal abuse is ok when discussing politics. Someone right now is raising the future prime minister of Great Britain. It might be your kid. It might be a child you have contact with and they look up to you. It might be a younger sibling. Trust me, they are watching how you react, how you deal with this. They are watching you crow over people who have (supposedly) been proved wrong. They are watching you start shouting at people who are crowing. They are watching you type words into Facebook, snap pictures of your angry face on Instagram, they’re taking note of your hashtags. Is that really the kind of politics you want the future politicians of our land to engage in? What words and arguments are you teaching them to hurl in people’s faces?

Is this not an opportunity to demonstrate to a younger generation, who will one day be running this country, that passion is good but so is being kind? Is this the time you can demonstrate to those watching future politicians that when an opponent is ‘beaten’, that is the time to be gracious? No, don’t say you’re happy if you’re not, but don’t call someone a bigot just because they disagreed. Teach those future politicians sentences like: “That’s a fair point – I disagree but I understand your concerns. Let’s see if we can calmly address them” or “I disagree but I honour your point and aren’t you glad we live in a country where we can openly disagree?” Let your younger sibling, your son, your daughter, the toddler who waves to you at church when you walk in – let them see that politics is capable of being a respectful debating situation. Demonstrate it to them.

I’m not asking you to lose your passion. I’m not asking you to pretend you’re excited if you’re not. I’m not asking you to not debate. I’m just asking you to consider the watching eyes and listening ears and realise that if you want politics to change in the future, you’d better start investing in the future politicians and demonstrating to them how to not be a lying, self-seeking, fingers-in-ears person.

I really don’t care which way you voted in the Referendum, honestly. You had a right to vote ‘Remain’ or ‘Leave’ and that was your decision, your choice and none of my business. So I’m not going to write about that. But you are raising, or influencing, the people who will impact my country in the future and I would really really appreciate it if you could raise some future politicians of integrity who know how to be kind and how to fight fair.

Much appreciated.🙂

Becky

New layout, (slightly) new attitude

P1080903I decided to spring-clean the blog which made me start thinking… I feel like everything has been pretty CFS-based on here recently and given I decided that wouldn’t define me, it seems a little counter-‘how-I-want-to-live-life’. So I’ll try and lighten up a little, okay? If anyone has any ideas/suggestions of things they’d like to see, please let me know! I was thinking maybe some foodie/craft-y/look-what-I’ve-found posts but if anyone can think of anything else, bung it in!

The Unwanted Season, Episode 14 (One Week Down: Things I Have Learnt)

Not sleeping doesn’t mean not resting. I have discovered being awake does not mean I have to start tearing around at the speed of light. It means if I do 10 minutes cooking and have to sit down and read for half an hour (with 5 minutes complete rest in that), then that’s ok. It means my plans to drive to the car boot, walk around it, go on to the gym and cook myself an intricate lunch are completely unrealistic. Shocker! It means thinking through what I want to do, axing everything apart from the main one (say, clean the kitchen sink or try a new recipe for tea) and that is my goal of the day. I’m rubbish at it. Lol. No surprise there as that’s how I got into this mess! But I am getting better. When my body starts shaking with sheer exhaustion, I actually listened and sat down and spent the rest of the morning watching a documentary, reading and just staring at the view until it calmed down and after lunch I was able to put the washing on the line. Now if I could learn to hear my poor body before it has to start shaking, that would be even better!

Proper rest is really really really hard. Sitting without letting your mind plan the next 20 minutes is agonising. I am trying various techniques and the current most successful one is lighting a candle and staring at its flame (successful = not spending the WHOLE 5 minutes thinking…). Plus it smells amazing.🙂

Going for a morning walk is surprisingly rewarding. I’ve actually found the morning part probably one of the easier parts of it. It is definitely helped by the fact walking around the Mountain at 7-7.30 in the morning at this time of year is just beautiful and peaceful and quiet. Seriously spoilt by where we live. The bluebells have just come up and it’s generally just stunning and I don’t have to share it with anyone apart from the blackbirds, horses and an occasional seagull.

I am incredibly blessed in my friends and family. I remember seeing a picture of someone collapsing in a marathon and being carried over the finish line by fellow athletes. That is what your prayers and encouragement are doing to me – you’re carrying me. This isn’t easy (like, really really not easy!) but it certainly isn’t as hard as I was expecting and I’m going to lay the credit at the feet of your prayers, your encouragement and our God.

Sleeping through the night is a good idea. This is the first week in a very very very long time that I have managed to fall asleep within 10 minutes of my head hitting the pillow and only wake up (minus my three o’clock bathroom trip) come the morning. Seriously, this is revolutionary in my life! My brain is actually slowly learning it’s ok to switch off as I fall asleep! Guys, this is incredible!!

All coffee makers should come with timers! We bought a timer switch so the coffee maker comes on in the morning. I know some people find caffeine a bad trigger but for me, crawling out of my warm bed into the cold bedroom, the knowledge that there is a hot cup of coffee waiting for me in the kitchen is the strength I need.

Non-ironed pjs, bedding and tea towels is actually ok. The world doesn’t end if you don’t do them. I know, you never realised that, did you?😉 The doctor told me my new mantra has to be: “If a job is worth doing, it’s worth doing badly so it gets done”. Which means if I want to keep us in clean clothes, ironing gets assigned to the strictly necessary (Joel’s work uniform) and everything else gets put on the back burner. It hurts but hey, at least we have clean underwear in the drawer, right?!

God is good. Life may not be good but God is. He hasn’t miraculously healed me but He has showered me with what I call “God kisses” this week – just little things to remind me I’m loved. Like finding some leeks yellow stickered (I adore leeks but they’re far too expensive in supermarkets!) or someone sending me some good news right when I’m struggling the most. Sometimes the lack of a big miracle means we can see the smaller ones clearer.

The Unwanted Season, Episode 13 (Update & Edit)

I have been blown away by the love shown us over the past few days since the previous blog post. Thank you guys!!! I managed to get to church yesterday and, really, for the first time since moving, I realised I was home and with my family.🙂

It is getting a little easier. I have to focus on the next 20 minutes, not the whole day, so I am relearning how to live in the moment! If I focus on the fact it’s … hours until I’m allowed to crawl back into bed, I feel depressed and struggle. If I remind myself all I have to do is walk through the next 20 minutes, I can do it. And I’m actually beginning to enjoy not feeling guilty about sitting on the sofa and reading!

I know there’s a belief going around church that God won’t give you more than you can bear. It’s not true. The verse that gets misquoted is talking about temptation, not trials. It sounds cruel but God sometimes does give you more than you can bear – so you will turn to Him and rely totally on Him. And that is what I have been learning these past few days. When it gets too hard, I turn to Him and pray hard and He does give me the strength to get through the next 20 minutes. It’s hand-to-mouth energy here atm but maybe it’ll teach me to rely on Him 100%.

I just wanted to add a little edit to my last post, and any post that speaks of the CFS/ME: I am not a doctor and I am not healed. Do not take what I say as anything relating to medical advice, or even something to copy. I am sharing my experiences because I believe it might be helpful but it is not a list of what you should or shouldn’t do. I wouldn’t want anyone copying what I am doing unless their doctor has said so! Everyone’s journey with CFS/ME will look slightly different. I am blessed to be at a point in life where I don’t have to work and we don’t have any children so I can really focus on this rehab – others may not be so fortunate. Do what works for your rehabilitation/survival and don’t get too sidetracked by all the other people with CFS/ME. Sure, take their tips onboard but find out what works for you. Take everything with a pinch of salt!

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.