Wednesday, 18 October 2017

Waiting #thosewhowait #poetry


Waiting. Waiting
Waiting on waiting
Life's next adventure
Could just be passing

Rather than waiting
I should be squeezing
Every opportunity coz
Life's to be living

But life's not like that
Not mine anyway
I'll hit a stop sign
Sometimes literally

Road diverted
Route disrupted
Traffic light red
Danger ahead

Again I'm waiting
Waiting on waiting
For answers to questions
For new life solutions

Sometimes the waiting
Involves a slowing
(Might look like waiting)
If you're not concentrating

But in this waiting
There's action brewing
Internally learning
Adjusting my living

In the waiting
I'm learning
I'm growing
I'm living

XXX

Wait patiently
Is it a virtue?
Feels more like torture
When waiting for you

XXX

Waiting for birthdays
For Christmas or parties
Waiting for letters
Emails, text messages
Waiting for invites
And event invitations
Waiting on appointments
The good and the bad ones
Waiting on results
Nerves ever jangling
Waiting on life
Except for the ending

XXX

I wrote these poems inspired by Tanya Marlow's launch of her book "Those Who Wait: Finding God in Disappointment, Doubt and Delay". See more on her blog tanyamarlow.com






Friday, 14 April 2017

Wednesday, 12 April 2017

Tuesday, 11 April 2017

Lent 2017 Day 42 #rethinkchurch #above


From above we get perspective
Nothing seems so bad
Yet God cares about the small things
And whatever makes us sad


Monday, 10 April 2017

Sunday, 9 April 2017

Saturday, 8 April 2017

Lent 2017 Day 39 #rethinkchurch #blessed



Some people bless with presents
Some bless with their time
Others give their wisdom
Whilst some clean up the grime
All these are important
What matters is to know
We are blessed when we receive
And when we give, more so

Friday, 7 April 2017

Lent 2017 Day 38 #rethinkchurch #voice


You have a voice
But how will you use it
To spread gossip and problems
Or to build up with confidence
We all have a choice
On how we use our voice

Thursday, 6 April 2017

Wednesday, 5 April 2017

Lent 2017 Day 36 #rethinkchurch #hear


Do you listen?
Can you hear?
What does He tell you
You don't need to fear
Truth, hope and love
Listen up a gear

Tuesday, 4 April 2017

Lent 2017 Day 35 #rethinkchurch #breath


When everything gets heavy
And fear is all around
There's just one thing to think about
Breathing in and out

Take away the worries
Banish all the strain
Concentrate on just one thing
In and out again

Monday, 3 April 2017

Lent 2017 Day 34 #rethinkchurch #light


After the dark
Light fills the void
Solutions are found
We are overjoyed

This is the story
We soon will share
Jesus resurrected
Light of true care

Sunday, 2 April 2017

Saturday, 1 April 2017

Lent 2017 Day 32 #rethinkchurch #darkness


Darkness falls
Condenses the air
Nothing to see
No need to stare
Fear grips the heart
Too much to bare
But I have the solution
Calm comes through prayer




Friday, 31 March 2017

Lent 2017 Day 31 #rethinkchurch #with


Reach out and touch 
Do not just stand close
Enter into relationship
With one another
Share burdens
Build dreams
Dry eyes
Together


Thursday, 30 March 2017

Wednesday, 29 March 2017

Lent 2017 Day 29 #rethinkchurch #open


Many doors are opening
Everywhere you look
Doors of freedom
Of possibility
Of calling
Opening
Just
For
You

Tuesday, 28 March 2017

Monday, 27 March 2017

Lent 2017 Day 27 #rethinkchurch #sign


For years I wanted a sign
Something obvious from above
Then I realised I'd been blind
He'd been speaking clearly in love
Not in lightning striking
Or in booming sounds so clear
But through people around me
The one's I'd not stopped to hear

Sunday, 26 March 2017

Lent 2017 Day 26 #rethinkchurch #celebrate


It's Sunday again
Mothering Sunday
A day of joy for some
But pain as well for many

God is our mother
She knows a mother's pain
I remember how she held me
Whenever suffering great strain

Saturday, 25 March 2017

Lent 2017 Day 25 #rethinkchurch #journey


Life is full of journeys
On planes, trains and ships
But the most valuable amongst them
Is the one we take within

Friday, 24 March 2017

Thursday, 23 March 2017

Lent 2017 Day 23 #rethinkchurch #rest


We are all filled with action
Things to do and say and be
But sometimes all we need
Is to be still and rest with thee

Wednesday, 22 March 2017

Lent 2017 Day 22 #rethinkchurch #joyful


Allow your heart to sing
Joy will flow from every pore
Ensure God can hear He's king
Invite everyone to sing some more

Tuesday, 21 March 2017

MS Pain: The Reality

I'm in the second week (feels like lifetime) of the worst pain I've ever experienced thanks to the MS Hug.  It sounds so lovely, a cuddle from MS, but believe me it's torture as the MS Trust explain.

I started off determined not to take any pain killers beyond the neuropathic pain relief I take every day; but within 48 hours I gave in and took the prescribed analgesic and 24 hours later doubled the dose.  At this level I don't actually have less pain, but at least I can sleep through most of it which makes each day more bearable.  

In my windows of consciousness I am spending quite a lot of time thinking about pain and it's causes; it's different forms especially of MS pain and pain relief.  I haven't come to any great conclusions; but thought my ponderings and diagrams (created to help explain my pain to Mike and Rachel) might be interesting to others.  If you'd like actual facts about pain then I recommend Pain by MS Trust.

I'm sure most of you have been asked to rank pain you've experienced in your life.  From 0 for no pain to 10 for the worst pain you've ever experienced.  I never got much above 5 with childbirth but way up at 9 with gallbladder pain.  But this pain, on my old scale, is way over 15 which probably just means I was over-judging the gallbladder pain.  I've been wretching with this pain and a few times have thought I would pass out, it's not great at all.  

I've made my own pain scale diagram to help see the funny side of pain.

  1. Pain
  2. noun
  3. highly unpleasant physical sensation caused by illness or injury. "she's in great pain"
  1. mental suffering or distress. "the pain of loss"

Until the last few months I'd never really thought about pain and what different people might be experiencing every day or when they're in pain.  According to this dictionary definition, pain is a highly unpleasant sensation caused by illness or injury.  But what about pains which are just part of life?  I have had strange physical sensations which I guess might be considered unpleasant.  Have you ever thought about  what you feel and if it's normal?

On a normal day; what do your arms feel like?
How about your legs?
Your stomach?
Your head?

I don't remember a time when my left arm doesn't feel useless.  I mean that it's always heavy and feels dragged down and takes a huge amount of effort to move it.  It's been like that since my teens at least and I put it down to being very dominant right handed and therefore my left arm is a bit useless. 
 Is this normal?  

And my stomach, it has always rumbled and been sore after every meal, that's my normal and I just assumed everyone could feel their stomach moving after meals.  
Is this normal?

How about loosing the feeling on your face?  I often can't feel my face especially my left cheek and forehead and then it will come back and feel strangely warm.  I never even thought about why that might be.  
But now I'm wondering, is this normal?

Perhaps these were and are all symptoms of MS?

MS Pain
I have broken down the various pains and other strange feelings I have experienced into seven forms. 
I think about them as building blocks, with the lower numbers being annoyances which I've got used to; and the higher numbers having a dramatic impact on my life.  The higher the blocks of pain stand on any given day, the worse I feel and the more my day is negatively impacted.



0. Strange Sensations 
The foundations of MS pain are not pains, I have named them as strange sensations like temperature changes or tickling feelings or the current super strange sensation of my knee bleeding.  They are not debilitating, they can be quite entertaining to identify, but they are all part of the pain structure and they do take part of my brain time to process and they can be very distracting.

1. Pins and Needles
I get pins and needles in my limbs all the time, I've even had it in my tongue or in patches on my body.  They are a huge annoyance and a distraction which I can ignore through mindfulness or by applying pressure on points elsewhere on the body.  They bothered me a lot when I first got them, but not anymore.

2. Numbness in limbs
I often loose the feeling in my left leg and I don't think I've really felt below my left knee for about 6 months.  I get bruises on my left foot and have cut myself and not noticed.  It doesn't bother me although I've come to realise I do need to be careful.  More recently I can go numb in the right leg, which isn't funny when the left leg is also being useless; or in my arms which means I drop things. 

3. Shooting pains in limbs
These are like electric shocks and they can happen in any part of the body.  They demand my attention, especially the first few times they happen in a day; but then I can normally distract myself from them.  After an hour though they're tiring and mean I can't concentrate properly and get exhausted quicker than normal.

 4.  MS hug low level
I used to think this was horrid, but since I've had the proper full on MS hug I long for those days.  This lower level hug, once I've got used to it, can be blocked out but that takes energy and concentration, I need to lie down to get any relief of any sort and this is a huge impact on my day.


5. Spasms in limbs
I tend to find them funny in my legs, although means I can't walk safely, but really difficult to deal with in my arms because can't do anything reliably, tend to tense muscles so need to be constantly aware of this and relax, stops my ability to think clearly; 

6.  MS hug with spasms in torso
I can't distract myself from it, every breath hurts, can't get comfortable, pain moves as spasms move and then I find myself tensing other muscles to try and get relief.  It takes all my cognitive ability to relax and cope, pain killers have their own side effects including sleep which doesn't solve the exhaustion and disrupts my day.

7. Headache/Migraine
 I often get a headache, mostly associated with optic neuritis and therefore through the eye balls which affects my vision and really gets me down.  I can't distract myself and can't sleep with this which makes me really irritable.  Sometimes I get migraines, these are impossible to ignore and I need a  complete shut down and sleep for a few hours.   

But that's not the whole picture!
This is....



There's more to pain than just pain.  There's the ability to cope with pain.
I can cope better with any of these types of pain, or buildings of pain, after a good night's sleep.  

How the building combination is made up of these different pains complicates how I feel.  And when they change in a day that means everything is up for grabs.   If I'm ill, especially with a temperature or with swollen glands, then everything is exacerbated. And then of course there's the constant tinnitus which is at two pitches all the time and sometimes as many as four and is really distracting.  Everything is worse in a noisy or busy place because that's too much sensory information to process.

And MS likes to throw in fatigue and exhaustion separately into the mix, and this is like a load pushing down on top of the pain making it all so much heavier and harder to lift off.

And then there's the pains of mental health, both because I'm feeling rotten and that's depressing and because the cause of pain is anxiety inducing and also because MS affects mood.  Put this anxiety and depression into the foundation of the pain blocks and the whole system becomes less stable and more inflamed; an even harder situation to manage.

PS. There's a TBA box on the top.  
I don't know what this is, but I didn't want to tempt fate by saying I had this pain thing all sorted out, so this allows for something I'm yet To Be Advised about.  I'm hoping I never get the memo.

PPS. This is not a pity party.
Please don't think I've written all this by way of getting your sympathy. 
I have written this as a way of trying to understand my own pain and my life and how I can manage my pain to live life the best I can.  I have written it because I have family and friends who want to try and understand what it's like and I hope this might help.  And I have written this because writing and creating diagrams is a great distraction from pain and has been helpful over the last week, although I've been typing too long now and I'm tired and in pain so there I'll stop.

Lent 2017 Day 21 #rethinkchurch #go


Fear makes us stop
Dead in our track
Faith helps us to go
Never look back

Monday, 20 March 2017

Lent 2017 Day 20 #rethinkchurch #afraid


Do not be afraid
It does no good anyway
Better to take an action
The best of these is to pray

Tell what it is makes you fear
Ask for ideas you can face
Listen to plans that will work
Slowly pick up the pace

God will provide solutions
Jesus will make sure they work
The Holy Spirit will be alongside
Soon you'll see hope through the murk

Sunday, 19 March 2017

Lent 2017 Day 19 #rethinkchurch #celebrate


Celebrate every day
Especially on Sundays
That God loves us
Jesus forgives us
Holy Spirit is with us

Saturday, 18 March 2017

Lent 2017 Day 18 #rethinkchurch #beloved


We are beloved
More than just loved
We are dearly loved
As God's children loved

Friday, 17 March 2017

Lent 2017 day 17 #rethinkchurch #speak


Speak only kindly
Listen always carefully
Hug very gently
Love extravagantly

Lent 2017 Day 16 #rethinkchurch #presence

Be still
Be strong 
Make your presence calm

Do not fear
What you hear 
But know God had the steer


Wednesday, 15 March 2017

Lent 2017 Day 15 #rethinkchurch #see


What can you see?
And what about me?
Blind I might be
But
God shows clearly
What I need to see



Tuesday, 14 March 2017

Lent 2017 Day 14 #rethinkchurch #faith


We live in faith
Not in certainty
Or knowledge
We live in faith

Our faith is tested
Each day
In many ways
Our faith is tested

Faith grows
Blesses
Sustains
Faith grows

Monday, 13 March 2017

Lent 2017 Day 13 #rethinkchurch #kindred


We are all connected
Families together
Across churches and communities
Countries and continents
Kindred spirits
Following Jesus' example
Excluding no-one
Ever



Sunday, 12 March 2017

Saturday, 11 March 2017

Disabled Access Day: Is your Church Accessible?


Close your eyes and imagine standing on the road facing your church on a Sunday morning.
How accessible do you think it is?

Give it a rating from
Poor     Needs Improvement     Almost there    Accessible

Now go through the questions in each section below and think about accessibility.

Entrance
Can you see the door?
Is it well lit?
Can you see how it opens?
Can you open it with one hand if you aren't very strong or aren't standing up?
Is it open already?

Is the path to the door smooth and without loose trip hazards?
Any holes to fall down?
Is the path well lit?
Is the path wide enough for two people to walk down next to each other?

Are there any steps?
Is there a ramp available if there are steps?
Is this in place?
If not, is there someone obviously making a move to put it in place?


Welcome
Is there someone at the door welcoming people?
Are they smiling and looking pleased to meet you?

As they welcome you, do they ask if you would like large print information?
or help with finding a seat?
 do they tell you about the t-loop?
do they show you where the toilets are?
are they accessible toilets?

do they give you a brief outline of the service and what will happen?
do they perhaps offer to sit with you through the service?
if you don't want any help, do they take that well and go back to welcoming someone else?


Internal Furniture
Are there spaces for wheelchairs?
How many?  3? 4? 10?
Do these locations feel part of the body of the church?
Or are they off to one side and feel isolated?

Are the seats comfortable for people in pain?
If the chairs or pews are hard and narrow;
are there chairs for people who could not sit on them for more than a few minutes?

Is the lighting providing good light levels to everyone?
Do any of the lights flicker?
Are there are dark spots in the building?

Are there any steps or raised platforms in the church?
Are these used by congregation during the services?
Are these ramped to allow full access to all areas?
Can anyone with any mobility or sight disability access all parts of the church they need?


Service
Does the person who opens the service introduce themselves?
Do they welcome everyone?
Do they give an outline of the service?
Do they say it's OK to leave if anyone feels they need to?
Do they point out people who are available to help anyone through the service?

Is the t-loop working?
Is the screen well placed for light levels?
Are the words on the screen in a clear font and large enough for most people to read easily?
Does the screen flicker?

Is the order of service and hymn book well laid out so anyone can read it?
Does the service leader refer to page numbers to help anyone new to find where they are?


After the Service
Does the person closing the service invite everyone to stay for refreshments?
Does anyone offer you a drink?
Do people talk to strangers?

Is there a team of people who give information about the church community to new comers?
Is it OK to say you're happy to say you're just visiting?

Is there space to move around the church?
Is the exit clearly signed?
Are there people at the door saying goodbye with a smile and an invite to return?


Now you've gone through these questions 
(it's not a complete list by any stretch of the imagination)

How accessible do you think your church is?
Give it a rating from
Poor     Needs Improvement     Almost there    Accessible

What action are you going to take to increase the accessibility of your church?

Lent 2017 Day 11 #rethinkchurch #led


Jesus said "follow me"
Sounds a very easy decree
But what it means can be hard to see

Each day in prayer
I say from my chair
"Where you lead I will go there"

Friday, 10 March 2017

Lent 2017 Day 10 #rethinkchurch #free


we take for granted
that we can believe what we wish
but around the world
this is not always how it is
there are people dieing
for not giving up their faith
today we remember
those not free to live in grace

Thursday, 9 March 2017

Lent 2017 Day 9 #rethinkchurch #live


What does it mean to Live?
Feel love
Whilst you Go or Stay
Smile and Laugh
As you Live, Listen
Give Open Invites
And Share your Welcome
Greet everyone in Trust
Appreciate it All

Ask don't Stare

Last weekend we were in a local supermarket and, as usual, most people either ignored me in my wheelchair or tried not to stare while staring none the less.  I am used to it now and with my sight loss I don't even see it happening, but it really bothers Rachel who gets wound up by the behaviour.

But she and I were reminded just how lovely some people can be when two little boys (probably about 3 and 5 years old) ran up to me 

"Excuse me, excuse me; why are you in a yellow chair?"
"Because if I tried to walk like you I'd fall over quite quickly"
"How does it work?"
"I use this joystick to go forward and backwards and left and right"
"Can we have a go?"
"Sorry no, that's not safe, but you can press the horn button if you want"
So they pressed the horn button
And then their mum emerged 
"No boys, no, don't touch, come away, come on"
"Don't worry
I reassured her 
"They are fine"
"Boys, come away, stop bothering her
she said without actually speaking to me.  
And off they went chatting about how clever my wheelchair is.

Rachel and I were so happy to have had this interaction with the boys; it is just wonderful to be able to talk to people and answer the questions they are bound to have.  Rachel summed it up perfectly
"Young kids aren't scared about asking but when they grow up they learn (wrongly) that they mustn't ask because it's rude.  But then they just stare because they are still curious."

She's so wise.  Our curiosity about difference doesn't diminish as we get older, it's just that societal norms tell us we shouldn't ask about people's personal business.  And of course there might be people who don't want to be asked; but I'd much rather have a conversation with people, especially friendly kids, than be stared at or ignored.

So if you ever see me out this is my permission 
in fact it's an invitation 
to ask me anything you want, 
within reason.  


And please don't ever rush your kids away, 
they might just be the highlight of my day.

Wednesday, 8 March 2017

Review: Smart Phone Microscope

I have not been given this nor am I being paid for this review; I am purely writing this after being blown away by the benefits of such a simple and low cost magnifier.



Rachel has always enjoyed using her microscope but it's not exactly easy to carry around and has no flexibility for viewing anything bulky.  I saw smart phone microscopes advertised online and thought they might be fun and useful; and at less than £10 I bought one for Rachel for Christmas.  She opened the microscope on boxing day, put it on her phone and bingo!  She was off looking at the detail of the carpet, her clothes, random food, dust, leaves and more.



About an hour later I managed to get a go and was amazed to find that I could read words on a newspaper using it.  This might not sound that special, but when you're vision is as poor as mine (I'm severely sight impaired - blind - and can't read text below 20 font and even that can be a strain) it's a huge cause of excitement.



I spent the next few days trying out all sorts of text on different types of paper and found the microscope unbelievably easy to use; in fact it was just as good as the Rehan Looky 4 which I had spent £400 on to help me read.  It is small and light, simple to use - you just put it on the phone and switch on the camera - and because of it's low cost you don't have to be anxious about using it.

Don't get me wrong, the looky 4 is far and away a better magnifier and has lots of useful tools including reverse colour and blue and yellow; I wouldn't be without it for reading letters. But for less than 3% of the cost of the Looky this smartphone microscope is amazing and can fit in my small bag for checking small print on packets when I'm out and about.  It even uses the phone light (camera flash) so works in dark places.  In these photos you can see the small print on my eye drops really well magnified.



And if you're more like Rachel and love looking at clothing under the microscope, here you go