Adjusting to discipline

I started writing a while back about adjusting from chronic illness/disability to what is considered ‘normality’, since it’s not covered very often and a lot of people had questions about it. Like I explained in the first post, “I’ve not been writing because I’ve been doing, and for me writing requires a lot of space to think”, but that’s part of adjusting, too… working out what to make space for and how to do it.

I have a little space now so I’d like to continue where I left off, way back in March.

I found the struggle back then to be with discipline, and not having a schedule really didn’t help with that. I wasn’t using the time I had in a way I considered good, because I was no longer disciplined in making sure the housework was done, getting up at a reasonable hour (etc.) – and that last one is especially hard if I don’t have any specific reason to be up at a certain time! I spent far too many mornings just dozing, in a state of being too sleepy to get out of bed but not actually sleepy enough to sleep. Also, sleep was kinda my default state for almost 9 years. I remember hating sleep so much – I’d rather use time on something enjoyable or necessary than on dozing in bed, but it took work to break out of it.

I was working from home a lot too, both doing housework and lesson planning for tutoring, and they suffered from lack of discipline. I wanted to get them done in a certain amount of time but the push to actually do that was very difficult. I think discipline is a “use it or lose it” skill – I don’t blame myself for that loss, I had no choice, but I still find it a struggle to re-learn.

It’s amazing how quickly you lose it and how long the retraining takes.

There were a whole bunch of other things that I suddenly need to do, too. Eat healthily (since I can actually cook!), exercise, go to bed on time, do laundry. I had to remind myself to do things just because it had been so long since I was able to do them that I forgot that they needed to be done. Going to church on a Sunday felt utterly bizarre, and bathing? Oh yes, bathing. I used to shower every day before I relapsed, and then suddenly I could only bath every… month? Once a week at best, and that was pretty rare. And required supervision. Awkward.  Suddenly I didn’t have that restriction anymore, but I also didn’t have the habit! Don’t worry, I didn’t go for more than a few days without remembering – is it okay to admit that on the internet? – but I just would plain forget that it had to be done. Probably a good job that I like showers so much!

It basically felt like I was learning it all from scratch. But I also had a better foundation, the knowledge that I did actually need discipline (and a schedule), and that I could build my life on top of the things I knew to be important, instead of trying to cram them in at the edges.

Small (5 minute Friday)

5 minute fridayThis post is for 5 minute friday, by Lisa Jo Baker. Write a post on the topic in 5 minutes only, no editing. This week’s topic is:

Small.

Do you ever feel like everything you do is too small?

I do.

I make a small post on this, a small signature on that petition, a small comment, a small word. I feel like all I say and do is small, insignificant, unhelpful. And too, that my world is small. My heart is too small. For all the small things I do, there are so many areas where I don’t even realise I should be doing small things.

It makes me feel small.

But I do do a lot of small things. That small signature on that petition might actually change policy. The small card I send a sick friend might cheer them up. The small post on a topic might resonate with someone elses heart, and suddenly, it’s a lot bigger…

I think about the things that mattered, really mattered, when my world was a small room with a blacked-out window. The small kitten who cuddled against me and cried when he couldn’t find me. The small notes a friend sent me, a window out of loneliness in a very lonely world. The small act of asking how I was.

Then all the small things that make my life better now. My husband doing some small chore. A moment of sunshine in the cloudy sky. Someone making me a coffee. Not missing the bus.

I don’t feel so small, when I think about all the way small things add up to make life better. Or rather, maybe I still feel small – but I realise that small can be good.

Wisdom and words

I spoke on valuing both silence and speaking up, but truthfully, I feel lost in this area. I wish I had the wisdom to know when to speak and when to be silent. To be sure, sometimes it’s obvious – but I feel like those occasions are few and far between.

I’ve noticed some people tend towards keeping silent always. Keeping silent in the actual situation when they desire to speak, anyway, and then ranting about it privately. To be honest I probably tend towards this. Keeping silent when words need to be said can be so damaging, but I know so well how powerful words are, and how powerful still is the rejection of the things of our heart.

It’s true also though, that many tend towards always speaking up, always objecting. In some situations, to not speak up is to side with wrong, and so they decide to always speak up. But speaking up when silence is better is just as damaging – what you say hurts. Words drive bigger barriers than seas between people, and can do more harm than knives. Why do we sing the songs “sticks and stones…”? Not because words don’t hurt, no – but because we want our words of not caring to hurt the one who hurt us! Sticks and stones may break bones, but bones heal within a few weeks, and I’m still broken over words said to me years, decades ago.

There is a time to speak and a time to be silent, but I don’t trust that I can identify either particularly well. I need a lot more wisdom for that. But I also wanted to explain my thoughts about these things – about how both are so important – because it seemed rather incongruent for someone with a blog (of all things!) to claim they valued holding their peace!

Why I value speaking/shutting up

I ranted on it, so I thought I should be reasonable about it too: (not) shutting up.

I value shutting up. I also value speaking up. It sounds an odd pair to value, but then some people might venture to describe me as odd anyway. Regardless, I hold onto this as a wise saying:

“There is an occasion for everything,
and a time for every activity under heaven:
…a time to be silent and a time to speak” Ecclesiastes 3:1, 7

There are times when it is really important to not speak: The words which bubble up inside will do nothing but ill. The thoughts in your head are too whirling and disjointed to help. The things that come to mind are meaningless. There are times when, regardless of how good and true what you have to say is, the other person is not ready to hear it. The things you say will fall on deaf ears, and all that will happen is your pearls will get trampled in the mud. There are times too when there is nothing better than to listen. Your side, my side, it is valuable and important but right now, the absence of opinion speaks louder than the flurry. Sometimes it is better to say “I am listening”, when you want to say “I disagree”.

There are so many times where it is better to hold your peace.

There are times when it is really important to speak: The fear and worry that tells you to keep your peace is holding back words which will break down barriers and bring healing. The thoughts in your head are exactly what they need to hear. The things coming to mind are timely and Godly. There are times when, regardless of how difficult the circumstances, the other person needs to hear what you have to say – even if what you say falls on deaf ears. There are times too when to not speak up is as good as saying you’re on the side of the oppressor. There are times when you are unable to do anything, and nothing you say is listened to, but you have to say it because if you keep silent you’ll be as bad as them. There are even times when words have power and effect great and mighty change, and you never expected it.

There are so many times when it is wrong to hold your peace.

When I can’t shut up

I can really relate to the whole “no one can control the tongue” thing. I mean, I’m fairly good at holding my peace, of restraining myself when speaking will just make everything worse. Sometimes telling your side of the story just isn’t going to help anything. But sometimes, I can’t shut up.

Especially if I’m angry.

It’s worse because this week, I realise I’m staying with someone who just Does Not Understand what I am saying. I have been trying to get them to understand for most of my life, and I should know by now that it’s a lost cause, but something snaps and I cannot not say something. Even though it’s useless.

…but the government has destroyed the NHS. Do you not understand that? The NHS is GONE. I don’t care if your MP is “a nice bloke”, it’s his party’s policies that are directly responsible for this.

…but people are starving to death in the UK. Starving to death. In the UK.

…but we are supposed to “submit to one another in love”! Where is giving up the place of authority like Jesus did, and serving like Jesus did? What they propose leads to abuse and break up of relationships. It is embracing the curse that we are supposed to be breaking.

…but people are killing themselves because they can’t care for themselves. They are told they are lying and they don’t have enough money to eat or live, and they need care every day which they can’t get, so they kill themselves.

…but that’s not what the Bible says! That’s human rules made to look religious!

…but I don’t care if the BBC reported that, it is a lie. Go look at the figures for yourself. No, actually look for yourself, and work it out in your head. It-is-a-lie. Just because it’s in the paper, doesn’t mean it’s true.

It’s futile and foolish because it all falls on dead ears. Usually I know, I can tell it’s useless to say anything, because they are so set in their ways they won’t hear any of it. But for some reason, here today, I can’t shut up about these things that make me so angry. The things that are destroying our world.

Who wants to hear a clanging gong? It’s just off-putting. I want to live a life which shows what I believe, and have an answer ready – not just spout my mouth about stuff in a way which won’t make a difference. I want to bide my time and say it clearly when it will be listened to. I think today all my words are being wasted, but I’m angry about all these issues, really angry, and I can’t seem to shut up.

Sunday Summary (16/06/13)

For anyone following the “ME and You” fundraising in Norway, the research council approved meeting some of the costs of the Rituximab trial! This is fantastic news. You can read about that here: http://www.meyou.no/thank-you-maria-bergensavisen/ and sign a thank-you card to the doctor who has been heading the campaigning, Dr Maria Gjerpe, here: http://www.groupcard.com/c/zMGag9wWEjE

Learning to receive (Abigail Cashelle, Hidden Courage)
http://hiddencourage.wordpress.com/2013/06/10/learning-to-receive/

The Blue Ribbon
http://cfsdocumentary.weebly.com/
http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine
An ME awareness film being produced in America, based on the everyday experiences of real sufferers. The second link is to a kickstarter project for funding it.

Experts reflect on the FDA stakeholder meeting (Joel, Phoenix Rising)
http://phoenixrising.me/archives/16986

Disability project makes music using invisible beams (BBC News)
http://www.bbc.co.uk/news/uk-england-birmingham-22818986

A woman’s voice (Rachel Held Evans, Theoblogy)
http://www.patheos.com/blogs/tonyjones/2013/06/14/rachel-held-evans-a-womans-voice/
On being yourself, not a representative of all women everywhere.

Petition to increase benefits by rate of inflation
http://epetitions.direct.gov.uk/petitions/42863

Petition against the removal of legal aid
http://epetitions.direct.gov.uk/petitions/48628

Petition to give people on Carer’s Allowance Working Tax Credits
http://epetitions.direct.gov.uk/petitions/43362
Carer’s allowance is actually taxable income, but people receiving it aren’t eligible for tax credits…?

Petition to save social care in the UK
https://www.change.org/petitions/george-osborne-save-social-care-let-me-and-all-disabled-people-live-with-freedom-and-dignity

Listen (5 minute friday)

5 minute friday

This post is for 5 minute friday, by Lisa Jo Baker. Write a post on the topic in 5 minutes only, no editing. This week’s topic is:

Listen.

I just saw that topic and inside me a big smile – no, a grin – spread. So relevant. I’ve been thinking a lot about listening the last couple of days. About how I really suck at it (too often, anyway), about how important it is.

My friend Abigail wrote a post yesterday about how she needs to remember her doctors are human, listen to them, be part of their lives, not just spew problems and expect results to be returned within 15 minutes, like a machine in a white coat, and I thought – YES! Yes, that is exactly it. Exactly what I didn’t put into the “tips for dealing with doctors”. Exactly what I should have written about. They are human, they are like us, they are faults and emotions and a desire for dignity and recognition all bound up inside someone trying to help you and low on caffeine, and we need to listen to them as much as we need them to listen to us.

Not just doctors, everyone. They need us to listen to them as much as we need them to listen to us. Engaging is about letting their thoughts in, letting our worlds collide and that precious introvert bubble I built around my heart, if not burst, at least delicately join onto theirs and be moulded by their presence.

 

large cluster of soap bubbles stuck together

Soap bubble cluster by Mikko Saari

 

I realised how bad I am at listening. How I get distracted, I worry, I don’t know what to say and I react. Off the cuff conversations with me go something like this:

Them: Question?
Me: Answer.
Them: Question?
Me: Answer. (etc.)

When what I want it to be is that give-and-take, that open heart, face-to-face, comfortable silences interspersed with deep longings and meaningless chatter. I want it to be all of that, but to do that, I need to listen.

(And to that end, if anyone has any tips for me on how to become a better listener, especially on the asking-questions front and giving responses that engender more conversation, please let me know).