30 things you may not know about my invisible illness....

Ok, so it is coming up to invisible illness week and so I decided I would complete the '30 things you may not know about my invisible illness'


I am usually very hesitant to be honest about my pain and actually how hard it is to live in constant severe pain.  I find myself always trying to cover up and hide it and act like there is nothing wrong and like I don't have a care in the world... but that is very exhausting!  

I have opened up a few times in the past and actually the times when I have been really honest with people I have always found it to be a positive and helpful experience.  Plus I know I get frustrated with people for not understanding and wish people did, but how can people understand what I go through and what I live with unless I tell them and am honest and open with them.






So, here it goes...

1. The illness I live with is: Chronic Pain Syndrome

2. I was diagnosed with it in the year: Apr 2010

3. But I had symptoms since: March 2007

4. The biggest adjustment I’ve had to make is: to slow down and pace myself - it has taken a long time and still is for me to realise that I have different limits/stamina/abilities to what I used to and that some things (in fact pretty much everything...) take me a lot longer now

5. Most people assume: I am always completely happy and care free.  Yes I am to an extent but not always and I do cry, a lot.  Life isn't easy

6. The hardest part about mornings are: Realising I have to face yet another day of pain

7. My favorite medical TV show is: I quite like 24 hours in A and E

8. A gadget I couldn’t live without is: My car

9. The hardest part about nights are: When it gets to the point that I have been awake in bed for more hours than I have left before I have to get up

10. Each day I take __ pills & vitamins. (No comments, please) None - pain killers don't seem to be able to touch my pain

11. Regarding alternative treatments I: just started a trial of acupuncture this week which so far has not been fun, but I am willing to try anything to help reduce my pain.

12. If I had to choose between an invisible illness or visible I would choose: Um none? :o)  But if I had to chose probably visible.  If you could see pain and see how much I am in, I think I would be better understood and wouldn't be expected to do quite so much although I don't think I would be wanted to be treated as a patient all the time - I do quite enjoy the normality of my life, however hard I have to work for it.

13. Regarding working and career: I have just finished a National Diploma in Art (there were some rocky times health wise when I wasn't sure I would be able to complete the course but I did :D) and am about to start a degree in Creative and Therapeutic Arts (basically the lead into Art Therapy...)

14. People would be surprised to know: I am in pain 24/7.  It never lets up and not just a slight ache but the worst pain I have ever experienced. Plus it is not just my knee that hurts - there is lots of me, particularly my hips, ankle, back, wrists and hands.  I have not had a single waking moment since March 07 when I have had no pain, and that is tough.

15. The hardest thing to accept about my new reality has been: Pain.  And also the fact that I have a loving saviour who cares for me completely and knows me intimately (including my pain) who is all powerful, who is control of everything, who made the universe, who could take my pain away instantly allows me to continually suffer is a really hard thing to accept.  Some days I have accepted it ad trusted it to him, moved on and that's ok.  Other days though are much tougher and I really struggle to accept it.

16. Something I never thought I could do with my illness that I did was: Learn to drive :o) and I guess be more joyful than I ever was before all the pain and rubbishness...

17. The commercials about my illness:

18. Something I really miss doing since I was diagnosed is: Ok so believe it or not but I would actually have to say sport.  Yeah I know I wasn't ever sporty but I really enjoyed wide games and I loved badminton and netball.  Also really enjoyed trampolining.  I even sometimes really miss running or just the sensation of weight going through my legs normally.  Like it sounds stupid and bizarre but my whole body feels kind of out of balance and all weighted to one side.  There have been times particularly when going down a hill or something when I have just been desperate to chuck my crutches to the floor and sprint down the hill.  Its ok though - in Heaven I'm going to be able to run down huge hills without any pain :D

19. It was really hard to have to give up: My hands!  Using crutches all the time is pretty awkward and means you can't do anything whilst you walk.  Also putting the majority of your weight through your hands every time you take a step really takes its toll - hands and wrists were not designed for that!

20. A new hobby I have taken up since my diagnosis is: Blogging ;)

21. If I could have one day of feeling normal again I would: spend time with people just talking and being able to take it all in, without having to hold back the tears from the amount of pain I am in, without feeling dizzy and like I am about to pass out, without my head feeling fuzzy but just to be able to concentrate completely on what they are saying what their concerns are without having half my mind elsewhere...

22. My illness has taught me:  Total dependence on God - 'I lie down and sleep; I wake again, because the Lord sustains me.'  Psalm 3:5

23. Want to know a secret? One thing people say that gets under my skin is: "I know what you feel like/ how hard it is - my knee ect is playing up too!" or "I am like you now with my bad leg!" or "You don't know what real pain is - I once .... and that hurts"

24. But I love it when people: Ask me how I am doing and genuinely want to know the answer (rather than just expecting the answer to be 'good thanks') and when people encourage me to keep running the race and that Heaven is near...

25. My favorite motto, scripture, quote that gets me through tough times is: "It often takes an experience of crippling weakness for us to finally discover God's blessing. That is why so many of the most God-blessed people limp as they dance for joy." 

26. When someone is diagnosed I’d like to tell them: This life is hard but temporary and momentary - never forget that!

27. Something that has surprised me about living with an illness is: Just how much I have to think absolutely every little thing through and just how much it can impact on every single part of my life

28. The nicest thing someone did for me when I wasn’t feeling well was: Sent me a card just with this simple message inside 'I just wanted to write to say how much I feel for you in your ongoing pain - I so admire your courage in always putting on a brave face, when underneath you're still hurting so much.  It pains me to think of your struggle - and as part of one body I am sad with you. I'm praying for you.' and another one I got from other friends just read 'Sorry to hear how tough life is for you right now.  We have been praying a lot for you this week.'  I cannot express how much little things like that mean to me.  Even when people just let me know they are praying  or send me a link to a song they think I might like it really makes the world of difference to a life filled with pain.

29. I’m involved with Invisible Illness Week because: I am feeling very alone right now and needed encouragement.  It has also been a helpful way to be able to talk about my pain and struggles.

30. The fact that you read this list makes me feel: More understood, less alone and like people genuinely care.

Ok so I think my least may seem all seems a bit doom and gloom... I am suffering and yes life in pain is so hard but I am not bitter and I'm certainly not miserable.  Yes, there have been many tears shed and I am sure there will be so many more to come (but after all... "How can God dry your tears in the next world if you have not wept in this one?") but God is so good.  The worse a situation feels the better things around me seem and the more noticeable the positives become.  Heaven is more of a goal then ever - my life is driven with my eyes on Christ and on Heaven, where I know one day I will be dancing pain free with my loving saviour forever!

It is Well

I think the most common question asked by British people is How are you?  And it is one of the hardest questions for me to answer.  People are expecting you to say 'good thanks' or similar, yet how can I say I am good when I am in so much pain? 

My favourite hymn is 'It is Well' written by Horatio Spafford.  The words are amazing:

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

But, Lord, ‘tis for Thee, for Thy coming we wait,

The sky, not the grave, is our goal;

Oh, trump of the angel! Oh, voice of the Lord!

Blessed hope, blessed rest of my soul!

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.
And, Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul

I love the lyrics they are just beautiful!  Spafford wrote this hymn through massive trauma and grief in his life - his only son died aged just 4.  He then had his whole estate ruined in a fire.  To try and get over all the trauma he decided that the rest of his family needed a break.  On their way to England for a holiday the ship his family were on was ship wrecked and Spafford's 4 daughters were killed.  When he found out that his daughter's had all been killed, he wrote this hymn.

Thinking back to the question How are you? I find great comfort in this hymn.  I know that when people ask me how I am, however bad my week has been, however much pain I am in, however rubbish I am feeling I can still answer with the response "I am well, thank you."  Because however big my pain and problems feel I know that God is so much bigger than it all and I can still be well.

Faith and Healing

So yesterday whilst swimming I was listening to Joni Eareckson Tada's book 'A Place of Healing'.  I have only listened to a small amount of it so far so can't really comment much about it.  For those of you who don't know when Joni was 17 she dove into some shallow water and broke her neck leaving her paralysed from the neck down.  Recently she has developed chronic pain as well.  She is a truly inspirational and inspiring women. 

In the introduction to her book she talks about how she regularly gets told that God wants to heal her she just needs more faith.  She was talking about a particular incidence when a man who had heard about her, met her. He wanted to see her healed and asked her if it could be sin that was standing in the way of her being healed.  To back himself up he read to Joni Luke 5:18-19 (Some men came carrying a paralysed man on a mat and tried to take him into the house to lay him before Jesus. When they could not find a way to do this because of the crowd, they went up on the roof and lowered him on his mat through the tiles into the middle of the crowd, right in front of Jesus.)  He then reminded Joni that the man was healed and told her she could be too if she would only confess her sins and have the faith to believe it.  Joni knew that she had no sin she hadn't dealt with and she knew that she had a clean slate before God.

She told the man that she really didn't think it was a matter of faith but to him it just didn't add up - as a Christian who has faith and believes and whose sin has been forgiven didn't God want her well, want to heal her?  He told Joni that it must be a lack of faith - she was still in her wheelchair after all these years!  Joni asked the man to open his bible up again to that same passage.  Now in Luke 5:20 it says"When Jesus saw their faith, he said, “Friend, your sins are forgiven.”  When Jesus saw their faith - the faith of the paralysed man's four friends.  She simply said to him 'The paralysed man didn't have to do anything it was down to his four friends.  The pressure's off me, but on you!'

I loved this idea of a way to answer people when I get into awkward conversation's about faith and healing ect.  I can just flip the idea and when they are telling me I need more faith I can turn around and say 'Where's your faith?'

 

It is by grace you have been saved!

I have had countless people say to me 'God wants to heal you, you just need some faith!'  Well I would have to disagree with both parts of that statement.  I don't believe that God wants to heal me, yes I agree that ultimately he does, but not right now.  Why? Because the moment God wants to heal me that is it, in that second I will be healed.  It isn't a matter of well if you have enough faith, or a matter of well if enough people pray then you will definitely be healed.  God is not a God who works on works.  He isn't swayed or persuaded by things that we do.  He doesn't submit to peer pressure if enough people ask for something.  No, he is God and he does what is right and what is best and we have to accept that, which is an incredibly hard thing to accept in the face of suffering.  Have I fully accepted that? No, not yet and again I think that it will be a life long process to accept it.  It is one HARD lesson.


Please don't think that I am suggesting that means we don't need to pray because yes of course we should and yes God listens and yes God always answers but that answer is not always yes.


Also have more faith.  I don't believe that you can 'have more faith'  One verse that sums up the idea of faith for me is Ephesians 2v8 "For it is by grace you have been saved, through faith - and this is not from yourselves, it is the gift of God."  Faith is not down to me (and what a relief - if it was I would have failed a long time ago!) It is a gift God gives to us by his grace and so by people saying to me 'you need more faith', they are actually saying that God's grace is not enough for me.  God is a perfectly just God and he does not give some people a tiny bit of faith (meaning they only have a tiny bit of grace) and then leaves them to work it out themselves to make up the missing grace.  No, the verse above follows on by saying "not by works, so nobody can boast."


I think that I used to find that quite a scary thought and from talking to other people I don't think I was alone.  The fact that we couldn't do a tick list of "jobs for God" to try and earn his favour and earn our way to him was quite a hard thought to get our heads round.  We like to be noticed for our hard work and we like to earn our way up and we like to earn people's favour.  I found it hard to think that there was nothing I can do to "make God like me".  But now the more and more it feels as though my body is failing me; the harder it is becoming to carry out daily life I am so glad that there is nothing I can do to earn God's favour.  I am so glad that I am saved through grace alone.  I am so glad that no matter how much or little I can or can not do physically God still loves me the same.  I am so glad that I do not have to work to earn God's favour.  He takes me as I am - a wretched sinner and slowly day by day changes me to be more and more like Jesus.

Passing through, passing through...

For any of you who know me very well at all you will know that I love Colin Buchanan and just how much I do.  For those of you who don't know who he is (poor, deprived childhoods you must have had!!) he is a Christian Australian kids song writer and he does a lot of songs where he puts bible verses to music.  Although I should have long since outgrown Colin I definitely have not!  Thanks to him and his songs I know so many pieces of scripture by heart and it is such an encouragement to randomly get a song in your head which is actually a bible verse/passage.

One of his songs (regrettably I cannot find it on YouTube anywhere...) is called Passing through.


This world will try and squeeze you,
And tease you with tasty lies,
This world will try to trick you,
And kick you between the eyes.


All God's children will never walk alone,
All God's children will soon be heading Home.


Passing through, passing through,
On the way to Heaven,
Passing through, passing through,
On the way to Heaven.


Don't let this old world get its grip on you,
God's children are only passing through!


This world is slowly dieing,
but trying to take you down,
This world is on a devil line,
And its time is running out.


All God's children will never walk alone,
All God's children will soon be heading Home.


Passing through, passing through,
On the way to Heaven,
Passing through, passing through,
On the way to Heaven.


Don't let this old world get its grip on you,
God's children are only passing, oh they're only passing through!


Fix your eyes Jesus,
He frees us, from death and sin!
When this world is long gone,
We'll live on, to worship Him,


All God's children will never walk alone,
All God's children will soon be heading Home.


Passing through, passing through,
On the way to Heaven,
Passing through, passing through,
On the way to Heaven.


Don't let this old world get its grip on you,
God's children are only passing, yeah, yeah they're only, only passing through!




I love this song and think that it is such a helpful view to have on life.  The reminder that this life isn't everything - it is only temporary and we are only passing through, that as children of God we are continually getting nearer and nearer Heaven - we are on our way there, on our way Home!

Reflecting on 2011

Happy New Year! I don't really understand why we celebrate new year.  Last night (well technically this morning) it got to midnight and we all said happy new year to each other and I turned to the person next to me and said 'but it doesn't feel any different!' And it doesn't does it?


But New year is a chance to look back at the last year and reflect on it and think about the year to come and what we might want to change and improve.


I wonder when you think back over 2011 what you think? For some maybe it was a great year but I am sure for all of us there were at least some things that just did not go how we expected/ wanted.


I can say for me at least that 2011 has definitely not been an all round great year.  It has been a year of pain and illness.  A year of uncertainty and fear.  It has had many challenges to overcome and many tears have been shed.  But I can also say that it has been a year of great joy and encouragement.  There have been so many lovely times.  Maybe this year instead of having lovely weeks or days or even hours like some past years, it has been more a case of lovely moments - snapshots of pure joy.  Although it has been a year of struggles and a lot of difficulty for me I can look back and see how much I have been blessed.  


I am sure that 2012 will bring many of the same struggles as 2011, it might be a year of healing for me but it might not and either way that is OK because I know that I have my loving heavenly father doing what is good for me.  There are many times when it is incredibly hard to swallow, trust and accept this, but through prayer I will get there.


There is a vineyard song which has the simple chorus:

        Through the sun, through the rain
        You never change
        You are so worthy, I'll lift Your name
        And no matter  what I'm going through 
        I will praise You

I also love the casting crowns song 'Praise You In This Storm'.  The words are beautiful and I especially love the chorus.  I think the words are very fitting for reflecting back over last year and looking forwards to this new one coming.... 
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side

Happy New Year!  If you only make or keep one resolution, make it be to glorify God more and more each day.

Amazing grace, How sweet the sound

Amazing Grace, how sweet the sound,
That saved a wretch like me.
I once was lost but now am found,
Was blind, but now I see.


T'was Grace that taught my heart to fear.
And Grace, my fears relieved.
How precious did that Grace appear
The hour I first believed.


Through many dangers, toils and snares
I have already come;
'Tis Grace that brought me safe thus far
and Grace will lead me home.


When we've been here ten thousand years
Bright shining as the sun.
We've no less days to sing God's praise
Than when we've first begun.


Amazing Grace - what a song! I reckon it is one of the most famous Christian songs there is and there are good reasons for that.  It clearly states just how amazing God's grace is and what it means for people who have it.  

It wasn't until recently that I really noticed and paid attention to the last verse. I was so taken back by just how awesome a thought that is - wow, what a helpful way to think of eternity! I want to spend  10,000 years praising God and still have just as long to do it then when I begun, in a pain free brand new perfect body and a perfect sinless mind.  


I want to see God's glory in full and by it's greatness not be able to help myself but to praise and worship Him.  The best thing? Because of Christ, the baby who came into the world at Christmas time I know that this is going to be my reality, my eternity, and this can be your reality too.