Recently I took a trip with some of my fellow bloggers to Lisbon. During a chat over coffee with one of the ladies the subject of' 'When I was diagnosed' came up. It inspired me to go rooting though my college boxes when I got home and I found a notebook I had while I was going through the diagnostic process. When I think back to that time I tell myself that I remember every thought and every feeling I had. Well it turns out that I don't. When I was reading over my written ramblings I felt as if it was written by a different person. Life really has moved on so far in the short 3 years since I was diagnosed. I read about the fears I had, the feelings I experiences and the thoughts that came to me. The trauma of the diagnosis had given me such a distorted view of my life and my future. I thought I was fine, but looking back it was an extremely traumatic time in my life. I was wasting energy thinking about something that might never happen. This got me thinking about the advice I would give myself if I could magically send a letter to the past. Here is my letter to me:
Dear Aoife,
You were semi-prepared for today. You prepared for the worst while hoping for the best, and (as you think) 'as usual' it has turned out to be the worst. Turn off your phone for a few hours and give yourself a chance to absorb what's just happened. The outside world can wait. Everything is going to be alright. You are going to regain 20/20 vision, so that lovely image in your mind of yourself with secretary glasses will have to wait for a while.
This is a scary time, allow yourself to feel the way you feel - there is no right or wrong way. Let your family know how you are feeling. They just got the news too… they are all feeling for you and wishing that it was them and not you. But it is you, and you are the one who is glad that it's you and not one of them. They are always going to be there to help out. They will do their best to support you and make sure that life goes on as normal. Share with them; let them know that you are allowing them on this journey with you and that you won't hide any symptoms or feelings from them. They will worry twice as much if they think they have to guess how you might be feeling. Just be open and honest and then they know the situation and they can help you more effectively.
Keep going with college, there are only a couple of months left. You'll have to fight for it because you will be asked to defer, but keep going, you'll do it, don't give in. Do what’s best for you and not what's easiest for someone else.
Don't pre-empt what 'could' happen. So far so good, nothing you were afraid of has happened at this point. Remember that MS could have no affect on you for quite some time. Take each day as it comes and try not to worry so much. You will look back and think it was ridiculous to worry the way you did, and you'll feel like the diagnosis was small in comparison to the emotional turmoil you put yourself through by worrying about something that might never happen.
Forget the idea in your mind of what you think MS is. It's not something that is associated with older people. I know you are scared at looking at the possibilities of the future, but you'll change your mind on this. You will read and research tirelessly and you will begin to love it. Information is power and you will crave it. Get in touch with the MS Society. Engage with the community, they have all been where you are now. Don't be afraid to look at information, you will benefit from reading it and the fear that you have now will turn into knowledge. Instead of feeling like MS is unpredictable you will feel that knowing the possibilities puts you back in control. Instead of focusing on the negative elements of this, look for the good in it. In fact take that as general life advice and not just in relation to MS. It will make you a lot happier!
Trust yourself and trust your judgement. No doctor has experienced things the way you have. Nobody has experienced your experience, so you are the expert here. If you disagree or don't understand something fully, ask, question, interact with your doctor/nurse. They can't answer questions you don't ask. Remember, that you are in charge here, you are taking advice, but your decisions are your own and you need to be the one to make them. You can't expect someone else to make the decisions ahead of you, even though you would like to pass on that responsibility, you really do need to own it. It will make you stronger.
Know that medications are there but it doesn't mean that you have to take them. If you don't want to, discuss that with your doctor. Tell them how you are feeling about it. You don't have to feel in a rush to make a decision on a treatment plan, that all work long-term so don't feel under any pressure to push yourself into a decision. Take your time, relax and breathe.
Aoife
'A letter to Me' was first published on the 14th August 2014.
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