Amanda Ellis - Blog
I am Amanda Ellis and I am 17 years old, I suffer from a genetic connective tissue disorder called Ehlers-Danlos Syndrome (Type 3) with chronic pain syndrome. This condition means there is a protein missing from my collagen; therefore all of my muscles, tendons, ligaments etc. are affected. It is severe in my knees, hips, hands, shoulders, neck and digestive system but my spine, elbows, wrists and ankles are also affected. For this reason I am on a blended diet, which is very restricted due to nausea. I also use a wheelchair and crutches and have a very limited lifestyle due to poor mobility and severe muscle spasms in my left leg, which require strong sedatives in resuscitation. Ehlers-Danlos Syndrome causes frequent subluxations and dislocations and severe fatigue, and you are also prone to sprains, strains and ligament damage, which makes life very difficult. Despite all of these problems and difficulties, I stay strong and get through each day by the strength that the Lord my God gives me. It is through this love and strength that I know I can keep fighting and live my life for the glory of God.
Through my condition, I have been through many experiences. My problems first began with constant knee dislocations which led to 6 knee operations and a lot of time in hospital. My muscles spasms began after my 3rd operation, contributing to the further surgeries and hospital admissions. It is during this last year that I have developed the condition throughout my body and started with stomach and swallowing problems. As my problems were getting worse, we searched for a specialist and in August this year, I saw a Professor in Ehlers-Danlos syndrome in London. This was a huge breakthrough, but also a tiring 3 days. Before the appointment I was very nervous but trusted that the Lord would bring something good from it - He did. We saw the top man in the country, who we weren’t expecting to see and it was a NHS appointment not private as we believed which is all down to the amazing work of God. I thank the Church for all of their prayers and dedicated prayer time for this appointment. It meant so much to me and the answer to prayer was amazing! The appointment was a success, the doctor confirmed that I had Ehlers-Danlos Syndrome in all my joints, my skin and that it was also the cause of my stomach problems. It is great to have a definite diagnosis even though I now know it is worse than we initially thought. He was very kind, helpful and listened to what we had to say. He also agreed that I needed intensive physiotherapy and treatment, which is what we hoped for and I just praise the Lord for this answer to prayer. He is arranging for me to come into the adolescent ward at UCLH for an assessment and also wants me to see another Professor in gastroenterology who as an interest in Ehlers-Danlos in London. I was very pleased with the appointment but I was very tired due to the journey and travelling involved. Travelling home the next day, wasn’t quite as smooth, about 30 minutes away from home, I had a muscle spasm on the train which was extremely painful and an ambulance had to meet us at the train station. The muscle spasm was treated in the normal way, sedation in resuscitation and then to AAU. This wasn’t the ending we wanted but I tried to not let the spasm get me down, London had been an answer to prayer and I trusted God and knew that this was just a part of His plan for my life.
I was due to go on a residential weekend for my condition a few weeks after this, it was a difficult decision after the muscle spasm but I decided the weekend was too good of an opportunity to miss. I am so happy that I trusted God would keep me safe as the weekend went wonderfully, nothing went wrong and I learnt so much from the lectures by the specialist doctors and the people I met. From the beginning of the weekend I knew God was with me and there was an amazing sign, the hotel was Christian run and focused on working for the glory of God. There were many amazing people on the weekend, of all ages, to begin with it was quite shocking to see many of the people older than me, in their 20’s or 30’s in electric wheelchairs and covered in braces from head to foot! I looked at them and thought is that going to be me in 5 or 10 years. However when I talked to them, I realised they were still positive and that good wheelchairs and braces are a way of improving life. It showed me that it is better to buy the best aids and equipment, as EDS is a life-long incurable condition, so it is better to make life as easy as possible. Since then, I have been looking at purchasing better equipment aids so that I can make the most of my life and complete some of my goals like attending university. I made some amazing friends who I am still in contact with, which is really helpful as you can chat to them and know they understand. For me, the Sunday morning was a highlight, there was a Positive Workshop for young people running, so I went with a group of teenagers. It was a very valuable experience, a fun and safe environment where we could discuss aspects of our condition but in a relaxed way through games and knowledge of leaders with long term conditions themselves, so are able to relate with what we go through. It was also wonderful to go with other teenagers instead of my parents as it made me feel ‘normal’, everyone was the same as me so I didn’t feel different. I praise the Lord that he gave me the strength to go on this weekend and for all of the wonderful things which happened, without God, the experience would have been nowhere near as special.
The following weeks were really tough as I went through a series of muscle spasms. After having one, I suffered another spasm after only a week. This is unusual and really hard physically and emotionally. I was readmitted to hospital and this was the start of an awful week, during which I suffered another 2 spasms. I didn’t know how my body could cope, being in this much pain 4 times in one week. I had to stay in hospital for 5 days and the pain was horrendous. It was a very hard week for me but visits from my friends and God’s love and strength kept me going. Pastor John’s visits are also a huge help and keep me going, and mean so much to me, as do the prayers and support of the Church. God was protecting me throughout the week and I thank him for bringing me through it. Despite all these problems, there was an amazing answer to prayer, after waiting for quite awhile to hear about the assessment in London, they rang up to say there had been a cancellation and we could go on the Sunday of that week for a one week assessment. We were thrilled and I just thank the Lord for this opportunity. The only problem was getting to London when I was this ill and couldn’t put my foot on the floor. Thankfully, through the greatness of God, the nurses managed to arrange ambulance transport there, making the situation ideal.
The week in London was amazing, the help and understanding from the staff was much better as we were finally with people who know and understand the condition. The ward was specifically for adolescents which was fantastic, as everyone was of a similar age so you could chat and make the experience more fun. The nurses were all really friendly and there was a great atmosphere. The week consisted of assessments with the doctors, physiotherapists and occupational therapists, who were are all really helpful and gave me some advice and tips to try, especially with the spasms, as well as a better understanding of the condition. Another huge difference was that they all understood what they were saying and wanted to take a slow pace, which is what I want as I know from previous experiences that this will be the only path that works. Unfortunately on the Thursday of the week, I had a muscle spasm. The hospital treated it excellently and it only took them a couple of hours to get the sedation, they did not want to see me in that much pain for any longer. Even the way they passed it on to the staff and physios the next day was brilliant. Although another spasm was hard and caused so much pain, I trusted God and believed that there was a reason behind it, it allowed the staff in London to see exactly what happens and will hopefully benefit the treatment I receive. The week was a success and we travelled home safely, I just praise God for the week and the care and benefits he gave me there, I trust that this is all part of his plan and that it will bring improvements to my life. I have been booked to go back for 2 weeks treatment on the 21st November, so now I am just waiting until then.
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