It’s nearing the end of the week and I hope that you have found my daily posts helpful and can see just how amazing our almighty God is!
I know that reading a post can be intense every single day, but I am so grateful for all my readers and the lovely comments of support I’ve received – thank-you everyone!! Tomorrow will finish my timeline to the point where I am in my life right now and then I plan to go back to either weekly or twice weekly updates. Anyway, I will now start again from where I left off yesterday…
Thankfully I got the grades I needed despite the hurdles I faced during my a-levels and as a result I received a place to study LLB Law at Queens University Belfast. I was so grateful to get this place and excited that I was another step closer to my dream of practicing law. For a long time now God has really placed the issue of injustice and standing up for the weak on my heart.
“He has told you, O man, what is good; and what does the Lord require of you but to do justice, and to love kindness, and to walk humbly with your God.” Micah 6:8.
There is so much injustice happening in the world even right under our noses. It actually breaks my heart to think of the slavery that is still happening in the 21st Century. I pray that one day I will be able to do my best to use the law to protect the vulnerable. However the wonderful thing is that we don’t need degrees or anything to begin this life-saving work, WE ALL CAN DO SOMETHING TO HELP.
I would really appreciate if you could go onto the following website and see what you can do to help end modern slavery http://www.modernslavery.co.uk
First Year of University
To be honest I was extremely worried when I began university, I still had my Spica cast on and therefore had absolutely no use of either arm. I had to rely on carers to do everything for me, which was extremely embarrassing. I particularly struggled with meal times, it really upset me that I couldn’t feed myself and I felt embarrassed in front of my new flat mates. Furthermore, I was stressed because I faced another operation (surgery No.7) just two weeks into university and was afraid that I would get too far behind. Not only did I face these physical challenges but I also had to deal with the reaction from some of my classmates.
I will never forget my first day of class, we had to turn to the person next to us and introduce ourselves; I began speaking to this person who just looked at my wheelchair and spica cast, then turned his back and ignored me. It was clear that they didn’t want anything to do with someone like me. My first day was horrendous; the reactions from others, the struggles with holding my bag and trying to open doors and get through them without using my arms and trying to operate my electric wheelchair all at the same time. It was a complete nightmare and the sad thing was that no one would help, everyone just watched me struggle and walked on by.
I remember coming home from my first day of class and bursting into tears, it just felt like it was all too much to cope with, I wanted to quit already. I am very glad that I did not give up so quickly and I’m so thankful for some of the people that I have met along the way. However sadly, due to my chronic illness I was just not well enough to stay at university, not only does EDS cause dislocations and pain, there are also many other difficulties, including extreme fatigue and consequently studying at home on days and times when I am able to is better and safer for my needs. Therefore I am currently studying for a foundational degree in Criminal Psychology and will start my LLB Law degree by distance learning through Nottingham Trent in September.
God is the Alpha and the Omega, He is there from the start to the finish; I’m thankful that God was with me when I started studying in 2012 on that awful day and He will be with me right through to the end.
A trip to Bath, England
As you already could have guessed by now Ehlers-Danlos is a very wide ranging and complicated disorder. Sometimes individuals with EDS are hardly affected at all and then others are worse; in fact my specialist physio said that I’ve the worst case of Ehlers-Danlos which she has even dealt with. Not everyone has the difficulties I have, I just unfortunately have an extremely complex and severe case. In addition, there is no treatment or specialist clinics for Ehlers-Danlos in this entire country, the nearest being the Royal National Hospital for Rheumatology in Bath, England. Therefore my consultant in Belfast sent me to this specialist clinic in Bath. I remember travelling over filled with such hope at being able to get some help from this nightmare I was living, but also filled with nerves and fear of the unknown. As I sat on the train that day on my way to the appointment I was listening to music and a song came on with the following words;
“So follow me, I’ll be your river, river. I’ll do the running for you. Follow me, I’ll be the river, river. I’ll move the mountains for you, follow me, I’ll be your river, river. I’m here to keep you floating. Follow me, I’ll be your river, river.” – River by Emeli Sande.
This is not a song by a Christian band, however God was really speaking to me through these words. At this moment I had been filled with worry but God washed his peace over me with these words, telling me not to worry, all I needed to do was to follow Jesus, He would guide me through this appointment and He would do all the “running” for me. God can move mountains, I could rest in the assurance that God was right by my side.
That appointment went well, usually patients are offered 6 weeks of intense inpatient treatment, however because I live in Northern Ireland I was offered just 5 days of treatment to learn different ways to be able to manage my condition better, yes my EDS would not go away, but I had the offer of seeing specialist doctors for advice, a proper medication regime and specialist physio. Things were looking positive.
However, unfortunately this needed the funding approval of the the health board in Northern Ireland who didn’t even approve 5 short days for such a life-changing opportunity. This really upset me, it’s frustrating that no one seemed to understand, yes my condition may not be life-limiting (which I am extremely thankful for.) However I am suffering, it is not fair, instead I have to endure countless operations in the hope of managing some of the symptoms. But I am not going to get better, an operation is not going to simply take away my EDS. Nothing will. I had the chance of a least some improvement on how to help me, yet I am denied this opportunity, denied the opportunity to possibly manage my chronic illness better and live a life with the possibility of less pain, dislocations, operations and hurt.
Although I lost this opportunity, I pray that one day someone will find something to help me and this horrible condition which I face having to live with for the rest of my life. But if my life does continue on the way it is, I will trust in God, for He is Sovereign.