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

London: The Toughest Week Yet

Hey everyone, I hope you are all well and enjoying this beautiful weather.

I got back from London on Sunday evening with a sigh of relief and exhaustion as I collapsed into bed. It is not an exaggeration when I say I am extremely happy to be home despite how lovely London is. Last week in hospital was definitely without a doubt the most physically demanding and toughest week of treatment I have had yet. However I got through it, made progress, I met lovely people, gained new opportunities and I’m back home to tell the story; keeping in mind this is all for my good.

From the very beginning I have been told time and time again that this journey in gaining functioning arms, treating a complex nerve and muscle problem and gaining management over severe EDS would not be easy; however I think deep down I pretended it wouldn’t be that hard. I had fooled myself into thinking that gaining the use of my arms again would be a quick fix and therefore when I returned to London last week with very little progress I was disheartened and upset. My progress is literally so minimal that I can’t even see it myself, each step feels as tiny as a grain of sand and now 4 months after beginning treatment in London I still can’t use my arms. On the outside it seems that I’m getting nowhere but when I look deeper I can see the small daily goals and can smile at that progress. For example, despite not being able to use my arms or move them I can now:

– feed myself to eat

– I can go on 30 second walks

– I can sit up straight for 30 seconds at a time

– I can do my own hair

– I can colour in a colouring book

These things may seem very small and at times I get very frustrated that I can’t do more or even that I can’t do the very basic things for myself. Sometimes I think, I’d rather be able to look after myself than be able to colour; but I’ve started to realise that things don’t work like that, big things don’t happen in an instant. Sadly patience is definitely something I lack and I know that this journey is going to require a lot of patience.

We are so adapted to living life in the fast lane, we have instant messaging, emailing rather than post, self check outs at the supermarket and so many more methods of getting things done in an instant. Yet when it comes to the harder things in life, the things that can’t happen in an instant we get inpatient and most of the times I wish I could stamp my feet and demand a quick fix. However in my heart I know God wants my attitude and thinking to be the opposite of this and I pray that God will help me to gain more patience as this journey continues.


Therefore each day instead of focussing on all the things I can’t do, I will focus on what I can do each day and the many things I’m thankful for in my life. I pray that God will change my impatience into patience and the ability to see the good in each day and the progress I make,regardless of how small it is. Therefore although last week was a tough week this week will be different, it may be as difficult physically but through the difficultly I will be thankful for each hurdle since I know that’s bringing me a step closer to getting better. I know that my team in London cannot cure any of this, but I will not give up hope regardless of how impossible and hopeless situations may be at times; I pray that I will remain patient, giving thanks each new day for whatever life throws my way.


“Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.” 1 Thessalonians 5:16-18

f5e34094ecd902f0f2af891f72886296God bless,



2 thoughts on “London: The Toughest Week Yet

  1. So hear of your journey. So many things come to mind as I read. One of those is watching my granddaughter striving, and struggling, to crawl and pull herself up. She falls often but that has not stopped her from continuing to try. As I watch her I am amazed at her perseverance and her stamina to press on to the goal of walking. I am blessed to cheer her on no matter how small the accomplishment or the fact that next time she tries the same task she may fail. So I encourage you to press on to achieve all the goals, no matter how small you think they are, that God has set for you to achieve. I applaud you for your small achievements which are really huge compared to the giant you face in EDS.

    The other thought that came to mind is how blessed you really are having the time to spend with Jesus. The hustle and business of life, a lot do to our own desires and wants, keeps us away from that close intimate daily walk with Jesus. We are too busy to walk and talk with Him on a moment by moment, minute by minute, hour by hour, much less day by day basis. Treasure that intimacy now while you have it. After all it really is all about Him.

    Last thought . . . you are making an impact for Jesus in your corner of the world. Keep seeking, striving and leaning on the everlasting arms.

    Humbly yours,



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