I apologise that I haven’t got updating sooner on how my consultation went on Monday at the Royal National Orthopaedic Hospital (RNOH) in London. The reason for this being that I was not well enough for such a journey, I’m not going to lie, it was tough and I ended up back in hospital when I arrived home. My body just wasn’t strong enough to cope with such travelling.
However I’m now recovering at home and still trying to process all the information. I am sorry if this seems like a confusing or negative post, but please understand I’m struggling right now and I have a lot to deal with. I thank-you all again for your wonderful messages of comfort and encouragement and I apologise that I haven’t got replying yet, I will though in time.
Overall the appointment had a positive outcome, however I really do have mixed emotions about the whole situation. Initially I will require a 2 week inpatient assessment, this will include having an examination under general anaesthetic, meeting the whole team of specialists who will be caring for me, such as, orthopaedics, rheumatology, pain team, gastroenterologists, physiotherapists, occupational therapists and whoever else required to help me.
My consultant Mr Lambert was very nice and understanding. We had a very good chat about everything, he talked to me on my level and didn’t treat me like a child. He made me feel very relaxed and I knew I could trust this man with my care. He even gave me names of some medical research books to read in order for me to gain a deeper understanding on some of the theories on what could be going on with my dislocated shoulder. The head physiotherapist was also in the consultation and was very accomplished and friendly. They both understand EDS and have a plan on how to treat my dislocated shoulder as well as my entire body and all the complications that EDS brings to my life. I have a lot of confidence in the team and they want to take over all my care from now on.
I will have to stay in London quite a bit, especially for the first year, possibly for a number of weeks at a time. None of this will be a quick fix and I will not be cured of EDS. However the plan is to get everything set in place and have treatment and rehabilitation in order to manage EDS more effectively. My dislocated shoulder could remain this way for a long time and my muscles and nerves will need to be trained in order to try and hold it in place. I will recieve care for my whole body, being educated on different ways to manage my day to day living with a chronic illness and I will also be taught how to relocate all my own joints. The consultant was honest and warned me that I have a long and difficult journey ahead but he thinks I will cope as according to him I have guts!! – not so sure about that! haha!
To be honest I gained so much information, both good and bad, that I’m completely overwhelmed. I don’t think I’ve got my head around it all yet but I know I need to accept the journey I have ahead of me. Don’t get me wrong, I am thankful for this opportunity and that I will be cared for in the best place possible. But right now I am upset and fed up. I just want to get back to some kind of normality which I know won’t happen. I want to have a shoulder in place, legs that work and a body that functions as it should without pain. I don’t want to spend long period of time in hospital away from home, but I know this is what I need and therefore this is another part of my life I will just have to accept.
I’m sorry that I can’t explain this any better, it’s all very confusing and I’m still trying to come to terms with it all myself. This news is both good and bad, but I pray that God will give me the strength and grace to focus on the positive and get me through this. I am thankful for this opportunity to gain help, it will be hard, it will be long, tiring, challenging and painful but I won’t be going it alone, I will have God right by my side.
I apologise for not feeling happy about this situation, this is not all good news. I know this is what I need, but I am only human. I just want a break from this all. I don’t want to live in hospital, I want to stay at home. I don’t want to be sick, I just wish I was better, stronger and didn’t have to face what I’m facing right now.
Although despite how I feel, I know that I can lean on the promises and strength of God. He will get me through this, I will trust in Him.
‘God, when I lose hope because my plans have come to nothing, then help me to remember that your love is always greater than my disappointments and your plans for my life are always better than my dreams.’
God has a plan for my life, I may be struggling right now, but I will trust and follow Him.