I did it!!

I have finally sung in public, once again, and it wasn't a disaster!!

In fact, I have had only positive comments and lots of encouragement. :))))))

Friday came and I woke up a little disturbed. I have been having hearing problems in my right ear, because it is my right side that has been affected by this latest relapse. But on Friday, I realised I was having problems with both the right and left ears. Inside, I was quite worried but I didn't want to show it, so I carried on as though everything was OK. 

Apart from my hearing and being in pain, I felt quite excited about the prospect of singing again. The evening itself, went quickly. We weren't on until the second half, so about 9pm, but we had to be there early to do a sound check and get our head microphones. We are singing with a 40 piece orchestra, so we need the mics, to be heard!  

Everyone involved did really well and we made a great sound - even if I say so myself! 

My only concern, was whether I had sung mine in tune!! Having dodgy hearing is the worst thing that can happen when you are trying to sing! But apparently, all was well, and my solo was a success.

I must admit, that by the end, I was exhausted. The whole build up and anticipation had really taken it's toll. But mixed in with that was the satisfaction that I had achieved what I had set out to do. 

I proved that even with MS, and also being in the middle of a relapse, I was able to do something I loved and I pulled it off. 

I couldn't have done it without the constant support of Martin. 

And, of everyone involved in the concert. They have all been amazing. Nothing has been too much trouble for them, they just want me to feel comfortable. That in itself, means more to me than anything. 

We had our second concert last night, which too, went very well. Unfortunately, I stumbled over some of the words. According to everyone else, it wasn't noticeable. But to me (and Martin) it was obvious. It wasn't a major blip and I covered it up, but I knew I hadn't been perfect, so I was disappointed in myself. 

Our next ones aren't until next Thursday and Friday, so I have a few days to relax now. Followed by our first How Apt gig on Sunday. www.how-apt.com I have a rehearsal for that tomorrow. I really need to make sure that I am confident with lyrics for that gig. I am involved far more with that one, as there is only five of us singing, so a lot more responsibility! 

We have had some publicity for it already. Follow this link and this should take you to an article that was in our local paper. 

http://www.thisissouthdevon.co.uk/entertainment/Singers-new-group-making-Debut/article-785420-detail/article.html

Altogether I am very happy. It has given me the confidence to believe that I am capable & able to continue singing in the future. 

From the MS side of things, I would be lying if I said it was easier than I expected. 

It was and continues to be a struggle. But I figure, if I can do it while I am in the middle of a relapse, then I should be OK to continue doing it anytime. 

My pain is still pretty bad and the tingly numbness hasn't subsided yet. I am taking the oral steroids and have my appointment for the infusions, which will be a week tomorrow for three days. I have also had my appointment through for the MRI scans, which will be done next Friday morning. So things are moving forward now. 

I am making the most of this time now to rest. I keep being told that I need to listen to my body and ensure that I get enough rest, so I am trying to be a good girl and do just that! There is a first time for everything you know!!

XxXxX

Rough day

It's been a rough day today.

I have spent most of the day in bed. I had to get up and drop Martin down the road for a lift, but I came back and went straight back to bed. It was quite scary because I genuinely couldn't keep my eyes open. It is fatigue at it's worst and I have never had it this bad before. I didn't actually get up from bed until about half past two, but that was only because I had to! 

The last couple of days I have be riddled with pain too. I'm not sure whether the pain has caused the fatigue or the fatigue the pain, or of course, it may just be MS!

Nothing much has changed as far as the relapse goes, apart from feeling weaker by the day.

So it's an early night tonight and more rest tomorrow. 

I have a friend from work coming over for coffee, in the morning, which will be good. 

And then it's performance day number one tomorrow night! The first time I have sung solo, in public for about 3 years! I am looking forward to it though.

So rest is vital and my bed is calling me back!

Hope you have all had a glimpse of the sunshine, that we have had here in South Devon today. Spring must truly be on it's way - hooray!!

XxXxX

Our little munchkin, finding anywhere she can to explore!!

Steroids

Things are a bit tough today. 

I woke up really early, in quite a bit of pain and that pain has been pretty persistent all day. I did go back to bed for about an hour and a half, but it wasn't enough. I am feeling really exhausted, which on top of the pain is making me feel quite lethargic. The right side of my back feels twice it's size today - I feel like a hunchback - no comments please!!!

I had a few things to sort out yesterday, like the steroid prescription. I think the pharmacist thought I had got it completely wrong, when I put in the prescription! But after a lot of explaining, she was able to establish that I did need 500 mg a day for 5 days! Obviously it had to be ordered so I won't be picking it up until tonight. 

As far as the IV infusions go, I have had a call from the TAIRU unit at Torbay hospital, which is where they do the infusions. They had wanted me in next weekend, but as I have 3 concerts, Martin gently reminded me that the combination of steroids and doing anything just doesn't go. So we have arranged for me to have them from Monday 30th March for 3 days, because I have the oral steroids to keep me going. If I hadn't had the prescription for the oral ones, then I would have seriously had to think about pulling out of my singing commitments. I feel quite relieved that it is all sorted now and I can still sing!

It is frustrating that the resources aren't available to allow people to get the treatment any quicker. By the time I get the infusions, it will have been about three and a half weeks since things started going from bad to worse. That is quite some time to wait - or is it? Luckily I have the oral ones to take in the meantime, but this is my point about how do we get through now? Is this 'normal' for people to have to wait for treatment that works more effectively the earlier it is given?

Enough of the moaning, I have my appointment booked, I have the prescription ready to start tomorrow and I have my singing commitments starting on Friday and I will be there. 

I know some people have questioned that I am still going to be singing, even though I am in pain and discomfort, but if I stopped doing everything because of my pain, then I wouldn't be doing much with my life. 

Yes, it will be hard. Yes, it will be a challenge and yes, I will be in pain. I never said it was going to be easy. But that is what life is all about isn't it? I have too much to give in my life, to not at least give it a try. That isn't to say that I am not listening to my body. I am trying to be sensible - ha ha! 

I am resting as much as I can in preparation for the activities at the weekend.  I am not working at the moment because I have recognised that I was taking on too much. (You can all get back up off the floor now!!) And the fact that half of my body won't work properly, meant that I am unable to work satisfactorily anyway. It is disappointing because a part of me feels that I am 'giving in' to the MS. But the other part understands that I am actually doing what is best for my body. My head is such a conflict zone!

I have the final rehearsal tonight, with the full orchestra, for the Show Boat concert, which starts on Friday. I am a mix of emotions right now, but none of them are the terror I thought I would be feeling. I am actually excited, a little apprehensive and slightly scared, but not terrified! I have such great support from everyone involved in the event, that no matter what happens, I don't feel that I will be letting them down. So fingers crossed everyone!

I have to just add a note especially for my dear friend Jane Rowell and her family. Jane's mum sadly passed away yesterday after a battle with cancer. I lost my Mum a year ago on March 2nd and my heart goes out to her at this difficult time. When I was newly diagnosed, I remember Jane telling me that her Mum did reflexology. I never did take advantage of that, and I feel very sad about that today. 

There are lots of people thinking about you and your family today, Jane. Martin and I are just two of them.

XxXxX

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 www.how-apt.com 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!!

XxXxX

It's Nearly Monday!

Well, what a weekend!

It has to be said that I have struggled all over the weekend. 

The tingly, numbness, is now throughout my entire right side, including my head and face. It feels incredibly weird and I am still in a large amount of pain. My right hand feels like it has been slashed with razors. My feet and lower back are burning and my face feels like the skin has been stretched over it, making my eye and cheek feel very uncomfortable. I also have very muffled hearing from my right ear.

I wasn't able to manage going into work yesterday. On this occasion I had to listen to my body. I'm not sure whether I shouldn't be doing that a little more these days. But I'm really not good at it! 

I have written up my relapse notes, in preparation for my appointment tomorrow. I am really quite nervous about it. I know that sounds silly, but I want to make sure I get the result that I need from it. Ultimately that would be immediate treatment. This is one of the worst relapses that I have experienced and I just want some relief from it now - is that too much to ask??

I will update this, when I can, with news from the appointment tomorrow. 

In the meantime, I hope you have all had a good weekend and that the week ahead is bright and positive for us all.

XxXxX

Strange numbness - but it's painful??

Another day, another symptom.

That's not strictly true. It is an extension of symptoms I already have. 

The tingly numbness that started last week, has now spread. As well as being in my right hand and right leg, it has now spread up my back, up my arm and into my head. All on the right side. Then this afternoon, I realized that it has now gone into my face. It seems to be spreading by the hour.

I really can't explain how this feels. But it is very weird. The pain just on it's own was enough to drive me crazy, but now with this tingly numbness as well, I am climbing the walls. 

My right ear feels as though it isn't there. Obviously it is otherwise my glasses would fall off! But because of the strange feeling around my ear, I also feel as though it is affecting my hearing on that side. 

It's almost as though that side of my body feels twice the size it is. I have felt that with my legs before but not my head. I have just realized that it feels as though I have got a balaclava over the right side of my head???

I also feel as though my right leg is getting weaker. It feels like I am dragging it around - like I am dragging a lead weight around. It doesn't look as bad as it feels but it is very odd.

I have also felt, occasionally today, like these symptoms are in my left hand and foot. I am putting that to the back of mind though and pretending it's not happening. If it does progress, I will deal with it then!

I wasn't going to say this but I've decided that I am not ashamed to admit that I'm scared.

As I have said before I am staying positive and carrying on with as much as I can - this time next week, I will be in the middle of my first concert!! 

But, what if this carries on like this. Obviously I am hoping that I will get the steroids soon and that they will have an effect. But I have struggled in the past with steroids not doing much for me. I have them each time, with the hope that this time it will be different, and yes, sometimes, things do slightly improve, but they never go away completely.

In the six years since the onset of my first symptoms, I have not had a single day where I haven't had those symptoms. Some days can be better than others, but they are always there. 

What if these symptoms don't go away? Can I handle this pain, numbness and general strangeness of the change in sensations of my body? I guess that eventually I will get used to it, like I have with all the others, but I still find it scary.

I went into work again today. I am getting quite frustrated that they have this impression that I am just constantly upset. Yes, the last couple of weeks have been trying, but I am not upset about the amount of work I am able to do (or not). If anything I am proud of what I am achieving, even under these circumstances. They don't seem to understand that I am upset because of the pain that I am in. It's that favourite thing of, they can't see it so what am I talking about? 

There is talk of me going in the office, permanently. On one hand that would be good, because I wouldn't be under so much pressure, but part of my reason for taking this job was, that it gets me out of the house, I am on the checkouts, so I have to talk to people. That for me is a pleasure. Do I really want to be couped up in the office all the time?

I am due to go in again in the morning, but I will have to see how I am tomorrow. If this numbness is still as persistent, then I'm not sure I will be able to handle a busy Saturday. Plus the fact that I am exhausted. Just signing in is taking up all my energy, then walking down to the checkouts, it's one challenge after another.

Anyway, one day closer to Monday. That's got to be a good thing!

XxXxX

2 days later!

It's now two days later, from my pretty stressful Tuesday. I am afraid to say that the pain is just getting more intense. My right side is feeling more and more alien and I am getting incredibly frustrated.

On the positive side though, I did have a call from the nurse again yesterday and I have been squeezed into my consultants clinic on Monday. Hooray! I am relieved that I will be able to see him and discuss everything that has been happening. I am going to write it all down so that I don't forget anything once I get there. Martin has arranged the time off too, so he will be by my side. It is still difficult though, as I feel as though I am wading through each day, just to get me to Monday! 

This pain is such a nightmare. I would like to think that I am quite a strong person. I look at the things I am trying to achieve in life and I feel that I am approaching everything in a positive manner. 

The one thing that is driving me crazy though, is being told to remember that it will get better. To think of the fact that things will improve and it won't always be like this. I appreciate that, of course I do. But my argument is, that it doesn't help me now. I can stay as positive as I like but when the pain is as intense and as constant as this is, I challenge anyone to stay positive and cheerful 24/7. When the whole of your right side has this tingly, painfully numb sensation that is causing my hand to feel very weak - writing isn't easy at the moment - and my leg feels as though it is twice the size it is, how do you not let it get to you. I have this weird feeling with my feet and right leg too. It feels as though I have got a sock on or some tights on and I haven't taken them off for a while. Even though there isn't anything on them anyway. You can imagine me trying to take socks off that aren't even there!!

I had a rehearsal for Show Boat last night, it was the first time with the orchestra. I was determined to go because I wanted to make sure everything was OK with my solo. Luckily my solo is the fifth number so we got to it quite quickly. It went well and I feel more confident about it now. But once I had sung it, I had to get Martin to bring me home. I was exhausted and feeling very unwell. I had been to work earlier that day too which probably wasn't a great idea, but I had to go in and explain everything that is going on. They have sorted out me being off on Monday and are primed and ready, knowing that I will need the time off to have the steroid infusions. I was so exhausted by the time we got home last night though. 

I guess this is where I have to manage my energy a little better than normal. But I have so much I want to do right now.  

I haven't had anything on today, so I have been able to just relax and take it easy. I have work tomorrow though. I will give it a go and just see what I can manage. I have rehearsals over the weekend too, but the way I look at it is, that by keeping busy, Monday will be here quicker. I just hope I don't wear myself out too much. 

I know I need to rest but knowing it and doing it is something I find difficult to execute!

Oh well, three days and counting until Monday. I just hope it will provide some hope for me!

XxXxX