Timeline - My Story

Day 3: A diagnosis

Hey again! Just another part from where I left off yesterday! Hope you enjoy reading!

Friendship

Thankfully through all this time of suffering and operations I met my best friend Naomi. We have stuck to each other like glue over the past 4 years, there hasn’t even been a single day which we have not spoken in some form from the day we met, not even when Naomi went to Uganda for 3 months. Naomi has always been there for me. She has distracted me from pain and operation nerves with her funny messages and snapchats, Naomi always has a word of comfort and encouragement when I need it, she has showered me with hugs and kindness and has always been a shoulder to cry on. Not only this but she has even fed me tea and chocolate cake and did my hair when I couldn’t use my arms. Sometimes I felt bad that we couldn’t go and do normal things such as go out for coffee or go shopping and or even just go for a walk. However, the wonderful thing about our friendship is that Naomi accepts me just the way I am.

Naomi has inspired and and challenged me with her faith and shown me that it is okay to tell someone how I feel rather than bottle up my emotions and feelings like I used to. Together our friendship and faith has grown, we know each other almost better than ourselves and we have both changed and learnt from each other over these past number of years. I am so thankful that God has blessed me with such a wonderful friend who has always been with me, a friend that I know I can trust and I know she never has or never will leave my side. I really am so grateful for having such a loving, caring, kind, Jesus-filled and understanding friend.

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This picture here truly does capture our friendship!

Everything was becoming clear

Soon after having my knee surgeries in Bristol I began to have painful joints, including my back, hips and particularly my shoulders. Both mum and I knew there was something more going on than just having “bad knees.” Therefore, mum started researching again and this time came across a condition known as “Ehlers-Danlos syndrome III,” as mum read through the article it was as if she was reading about me, it described me perfectly. Everything was beginning to add up, the symptoms of EDS was starting to explain different things which had happened over my life.

For example, 

1. I was described as a floppy baby and took a longer time before I held my own head up.

2. I never crawled and took a long time to walk

3. I had poorer muscle tone

4. When I went to primary school I couldn’t hold a pencil properly to write due to weakened wrists

5. Having turned in feet

6. My extreme flexibility

7. Tripping over things, being clumsy and poor co-ordination

8. Skin that marked or scarred easier

9. Dislocations and painful joints

It was all becoming clear and everything was beginning to add up. Ehlers-Danlos seemed like the explanation.

A diagnosis

So I visited my GP who at first had never heard of Ehlers-Danlos III, along with many other people in the medical profession. However I was soon referred to a rheumatologist in February 2011 and sure enough I was diagnosed at the top end of the scale for having Ehlers-Danlos syndrome type 3. This came with a mixture of relief, in that I finally had an answer, but also with an overwhelming feeling that there wasn’t going to be a definitive way of “fixing me,” I had a deep feeling of disappointment in knowing that this wasn’t just going to go away as I had always hoped. When I was at the rheumatology appointment the doctor kept using the phrase “no cure”, at first this upset me more. All I could think of was that I would continue on in a life of pain; facing operations, crutches, wheelchairs, braces and physiotherapy for the rest of my life. However I slowly began to see that yes, in worldly terms I have an incurable disorder, but with God, nothing is incurable or impossible, for if it is God’s will for me I can be healed. I absolutely love the verse I shared in a recent post, Psalm 139 which reads,

“For you formed my inmost being; you knitted me together in my mother’s womb. I praise you for I am fearfully and wonderfully made.” 

How wonderful it is that we are all fearfully and wonderfully made, God had every detail all planned out and none of this was a mistake. I began to rejoice that God made no mistake in my faulty tissue, in fact it is not a fault with God, for he intended to make me just the way I am, instead of it being a mistake it was a blessing. Yes, I’ve been through a lot and at times it’s just been plain rotten, I’ve cried and been stubborn and told doctors that they would just have to fix me; but I can also honestly say that I wouldn’t change what has happened me. If I could I wouldn’t swap the last 8 years for a normal teenage and university life because through this all God has changed and moulded me and made me the person I am today. I am thankful that I can share my experience and the comfort God has given me so that I can comfort others in their own sufferings. In fact 2 Corinthians 1:3-4 is the main reason why this blog even exists.

‘…and the God of all comfort, who comforts us in all our afflictions, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.’ 

Operation No. 5 & 6

As the months went by after my diagnosis I continued to worsen in symptoms. Tiredness seemed to increase and dislocations were happening of my jaw, elbows and shoulders sometimes dislocations would even occur daily. Other joints became painful and I struggled even with simple tasks, such as holding pens and writing in school. My shoulders were particularly bad at this stage and continued to deteriorate until the point where I was having 3 or 4 shoulder dislocations daily. During my final a-level year, one day I ended up having 50 dislocations within an hour and was transferred to high dependency in the Royal Victoria Hospital to await surgery the next morning. I ended up spending over month in hospital, lying in traction and having to undergo 2 operations within a few weeks of each other. After my first shoulder surgery I became quite ill and suffered from paralytic ileus and whilst this took a big strain on my body and I lost a lot of weight, I can barely remember this time due to being so sick and therefore I really do think this ordeal was probably more stressful for my loved ones around me. For everything I go through, my family goes through with me and to be honest I think they are the strong ones, not me. They are the people having to watch me suffer, having to wait many times whilst I’m in surgery, losing sleep over me and having to look after me through this all; if anyone is an inspiration it is most certainly my mum, dad and brother.

During this time I had both arms in slings and I think this was something that tested me the most. I had to rely on others for everything, even the most basic of tasks such as, eating, washing and dressing. Up until this point I had been extremely stubborn and wouldn’t allow anyone to help me, so whilst I absolutely hated this situation I really didn’t have any other choice, it was either allow people to help me or go smelly with no food for the next few months!!! I began to become thankful at what this experience was teaching me and I started to see that it was okay to ask people for help. I realised how vulnerable, helpless and weak we all really are as humans and began to see how much I needed to depend on God for strength, for in my weakness God was strong and He carried me through those months of helplessness…

More for tomorrow!

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With love,

Carla xxx

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2 thoughts on “Day 3: A diagnosis

  1. What an inspiration. “If I could I wouldn’t swap the last 8 years for a normal teenage and university life because through this all God has changed and moulded me and made me the person I am today.” Trials are worth it when we realize that we are becoming more like Jesus when we trust Him through it. Who can say that but one who has seen the miracle of transformation as you have.
    Asking people for help is one of the hardest things, at least for me, to do. It is humbling to ask for help but a necessary step in our growth toward maturity in Christ. I’m still working on that one. 🙂
    Bear one another’s burdens, and thereby fulfill the law of Christ. — Galatians 6:2 Continue to be a blessing, Carla

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  2. Thank-you for taking the time to read and comment on my blog. You are completely right, trials are completely worth it to be transformed my the Holy Spirit into the likeness of Jesus. I completely understand your difficulty with asking for help, I struggled with this for 18 years but thankfully, slowly but surely God is working through me on this. I’ll be praying for you too!

    God Bless,
    Carla x

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