Monday, 16 March 2009

D Day!

So Monday has arrived!
I did manage to get some sleep, which was very welcome. I got up, feeling pretty anxious. I felt that I had a lot riding on today. I ended up in tears in the shower. Everything was feeling so strange. My right leg and arm is getting weaker by the day. I was really struggling to wash my hair etc and drying myself was really painful. I needed a lot of help from Martin, which he gives me with no complaint. It is so frustrating though, being a 35 year old who needs help showering and dressing. Oh well, it gives Martin an insight into the future, when I'm old and grey eh?!!
Martin was with me for the long awaited appointment with the consultant. I am always glad when he is with me, not only for the support, but it is always helpful to have a second set of ears. Between us we have a chance of remembering most of what is talked about. I also believe that this illness is affecting both of us and not just me, so anything discussed should be discussed with us both. 
I had documented my latest symptoms, in as much detail as I could and I was able to hand that to my consultant as I walked in. It meant that straight away, he had an idea of what I was facing, which I, and he, found very helpful. He said that between himself and the MS nurse, they both feel very helpless, as it is so difficult to provide answers to my problems. 
We have come up with a management plan, for the next few weeks. I am to have IV steroids, whenever that can be arranged. He has also given me a prescription for oral steroids, so that if I am not able to have the IV ones until next week, then I can start with the oral ones until then. 
I see myself very pumped up and putting on lots of weight over the next few weeks!
He has also said that he will arrange for an MRI scan to be done within the next two weeks. Then we can compare those with previous scans.
He has already said that he is sorting out the referral to the pain clinic, as that is their area and may have ideas that he doesn't know about.
Once the steroids and MRI are done, we will be in a better position to decide which direction to go next.
I am relieved that I have had the appointment and I feel that I now understand what is being done and why they are doing it. I should find out tomorrow when the IV steroids are on the cards, which will allow me to sort out if I am going to need to start the oral ones or not. At least a plan of action is in place, which I can act on as early as tomorrow. 
That was one of the points that I was eager to put across to the consultant. It's OK to have this plan, but what is going to help me today, now? This is why he has given me the prescription, so that I can get started asap. 
The pain is still as bad as ever, and with the weakness in my arm and leg, I am still in an enormous amount of discomfort. But I feel more positive, which is a good thing. 
I also explained that I have started my singing again. He thinks this is a good thing! I am well aware that I will feel pretty rubbish with the steroids, but I will be at those gigs. I have a lot of understanding friends around me and they will look after me. 
The important thing, that I am aware of at the moment, is that I need to rest. I am not very good at recognising that, or acting on it. But, I want to be able to do myself justice when I sing, so I will be resting as much as I can!
For those of you asking to hear my voice - If you go to the following website There are some demo songs on there from our group, How Apt. You can't hear me individually yet, but hopefully more tracks will be available over the coming months. 
So onwards and upwards, tomorrow is another day......................... closer to my first singing gig on Friday!!


  1. Hello Amelia,

    Glad you your appoitment went well.
    Hope you get plenty of rest this week and enjoy singing friday.
    Look forward to your next post.
    Take care.

  2. amelia,im glad things went well,now do as you just said and must learn to listen to your body,if you need a sleep,rest,whatever,have it.enjoy your singing.i could join you?? that should lose you 99.999%of your fans in a care,love mort xxxxx

  3. So even if you feel terrible you will be at the gigs? Determination is a beautiful thing, but rest first- and try not to worry too much, that in and of itself is so tiring.

    Having a plan of action takes a lot of the stress and worry out. Doesn't make everything "better" but clearly defined plans should put your mind at rest a bit.
    Peace to you~Mary

  4. Glad your appointment was worthwhile. It is always good to have a way forward defined, isn't it. Take care, hugs