London · Medical and all things EDS · My faith · Truths of a chronic illness

An update from London

Hello everyone,

I am sorry I haven’t updated in such a long time, to be honest I’ve been struggling to find the words to tell you all how London went and I apologise in advance for the complexity of what I am going to tell you, please bear with me as I am struggling to come to terms with the news.

I went to the Royal National Orthopaedic Hospital in London on Monday 28th January expecting a difficult two weeks of initial treatment but with the knowledge that within a year my shoulders would be back in place. What I learnt when I got there was tremendously different; it was discovered that I have a neurological problem which means that the signals which should come from my brain to allow muscles to work is switched off. In short this means that my brain is failing to send messages to my muscles in my neck, shoulders and back to allow them to work and as a result some of the muscles are paralysed whilst the rest of them are in constant spasm 24/7. In turn this has caused my back to twist and the spasmed muscles are crushing my ribs and lungs. In addition this is the reason why my shoulders are stuck out of place since the muscles are not working correctly to allow my shoulder to stay in position.

On my first day in hospital it was explained to me that my case is extremely complex and due to the complexity of this neurological problem there is no guarantee that my shoulders will go back into place or that I will ever regain function of my arms again. You can probably understand that this is very difficult news for me to process, I am still trying to come to terms with this news and this is the reason I am only updating my blog now.

However my team in London are fantastic, I have truly been blessed with the best people who have the highest expertise looking after me and I trust in them and their decisions regarding my care. Consequently I will be going through 2 years of intensive treatment and therapy over in London with the hope of at least some improvement and I will continue to trust in my wonderful consultant who has promised not to abandon me through a very difficult process.

I would be lying to you if I said I have accepted this news and I really am struggling right now. However despite all the craziness and feeling like I am at the limit of what I can cope with, when I sit in the arms of Jesus I know I am okay and that things will be okay. I can rest and trust in the promises of God, in the bible there are 3573 promises and I know God never breaks a single one. Yes I am scared but I am not having to go through any of this alone and I know Jesus will never leave my side. I love a passage I read in a devotional book a number of years ago which I have kept with me ever since:

‘You say, “It’s impossible.” God says, “All things are possible.” (Luke 18:27)

You say, “I’m too tired.” God says, “I will give you rest.” (Matthew 11:28)

You say, “I can’t go on.” God says, “My grace is sufficient.” (2 Corinthians 12:9)

You say, “I can’t do it.” God says, “You can do all things.” (Philippians 4:13)

You say, “I can’t manage.” God says, “I will meet all your needs.” (Philippians 4:19)

You say, “I’m afraid.” God says, “I have not given you a spirit of fear.” (2 Timothy 1:7)

You say, “I’m lonely.” God says, “I will never leave you or forsake you.” (Hebrews 13:5)

You say, “I am worried.” God says, “Cast all your cares on me.” (1 Peter 5:7).’

Over the past number of weeks I have felt many of these emotions but I know I can trust in what GOD SAYS.

f42662c6c63765420ae5009f008b8852Thank-you for always continuing to support me, I am so blessed to have such wonderful loving and kind-hearted people in my life. Not only this but I am also so thankful and happy to have met so many great people during my initial stay in London and I know I have made friend’s for life.

I am still struggling but I think suffering is a meaningful part of life as I know that God will use this situation for good. I go back to London in 8 weeks and after that hopefully a longer term plan will be established. However whatever happens I will be okay because God is right with me and His promises will never fade no matter how much the darkness and suffering becomes.

‘Let God’s promises shine on your problems.’ Corrie Ten Boom.

70a9537af02d2789e09856b862083469

God bless,

Carla xxx

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6 thoughts on “An update from London

  1. So sorry to hear that you haven’t had such good news,but as always after reading your updates I am amazed at your great faith and trust in God. You truly are a remarkable young lady and I pray that you will get the miracle you need. God bless you love Eleanor x

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  2. Dearest Carla you have been very much in my thoughts as of late. It is lovely to hear from you. Im so sorry that you havnt had the news that you hoped for.. This must be a devastating blow to you and your family. Im at a loss for words but trust u will gain strength in the days and weeks ago from God. I pray for you to gain strength and that the Lord will guide you through… Much love
    Mandy xx

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  3. The news received this morning wasn’t what we wanted to hear. A long, hard battle ahead but with God by your side,He will carry you through. Your strength and strong faith continues to bless and encourage all who follow your journey. God is using your suffering to encourage others dealing with difficulties. The psalmist says, “be still and know that I am God’. God bless Doreen and Arthur

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    1. I apologise Doreen for my late reply but thank-you for your kind message, I really appreciate your support and encouragement at this difficult time. Your message was just what I needed to hear today, thank-you! God bless, Carla xx

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