What a week!

Wow, what a week I had last week.
Most of you know that my great passion - apart from Martin & Me To You bears - is singing and that Martin & I are part of a group called How Apt.
You can check us out at
http://www.how-apt.com/
We had a couple of events last week. We performed at a street festival, in Silverton, north of Exeter, last Saturday, and then we are performing at the theatre in Brixham for three Wednesday's throughout August. The first one was last Wednesday and then we have one this Wednesday 18th and next Wednesday 25th is our last one.

And so the week began!
We had a big rehearsal last Monday, to make sure we were ready for Wednesday's performance. It was needed and we all felt a bit better after doing that rehearsal, but I have to admit, I was totally shattered by the end of it.
I am my own worst enemy too, as I try to continue just as everyone else does. It's not that I ignore the MS....it's a bit hard to do that, but I do ignore the signs of when I have done too much etc. So I was really struggling on Monday evening.

It didn't stop on Tuesday.
I had to be up early and I was down at Derriford hospital in Plymouth by 8.45am. I had my Tysabri infusion. It was number 15 this month! I was exhausted before the infusion started, but as usual, the infusion wiped me out again.
We were lucky this time. Because we got there at 8.45am, the infusion was up and running by 9.30am. As I said, the infusion wiped me out. It hits me very quickly once it is administered. I was asleep on the ward just after the infusion had gone through. I have to wait an hour after the infusion, to make sure that everything is OK, but I am finding that I am starting to sleep through that hour!
I am trying to be sensible though and use my wheelchair. I am finding it easier to use & because I get so wiped out, it is better for me and for Martin.
I know that using the chair is a good thing. It has just taken me a while to get my head around it. I am still finding situations where I can't do it, but it is getting easier over time! Especially as I have a queue of friends who want to push me in it!
I find that it's not just the fatigue that is the reason I use the chair. Because I use crutches and I suffer with a lot of pain and using the crutches causes pain in my hands, on a regular basis, using the chair means that I can alleviate some of the cause of the pain.
I have no idea whether the Tysabri is working, but I have had an MRI scan and I have an appointment with my consultant in September.
I know that some people really notice when they are ready for their next infusion, but I haven't noticed that. That's not to say that it isn't working for me, but I will be interested to get the MRI results and see if there are any changes.
By the time we got home on Tuesday, I was not in a fit state to do much. I was asleep for a lot of the afternoon and I was in bed early that night.

Wednesday was our first gig at the Theatre, so I tried to have a relaxing day, without too much exertion.
We had to be at the theatre for 4pm, for a run through and sound check. It was decided that I could sit throughout the whole show, if I needed too. I'm not sure whether it was pure pigheadedness, whether I was sub consciously being stubborn or whether it was adrenalin, but I stood for all my songs throughout the evening.
I know that with the correct posture, I am able to sing perfectly well sat down. I spoke to my GP about it as well and I know that this is the case, so this week's gig, I am going to sit down for at least some of the songs, if not all of it! The guys that I am singing with, don't have a problem with it. In fact, I know some of them would be pleased that I was looking after myself....yes Joe, I do listen to you!!
It is just really hard. I guess I keep feeling that I have something to prove.
Which is really silly.
I have nothing to prove to anyone, let alone myself. I know what I am capable of. But it is hard to change my mind set, having performed since I was about five years old. I want people to see my performance and not my MS.
Anyway, the show went really well, we just want lots of people to come and see us! If you are around or near Brixham on Wednesday 18th or 25th August, then come and see us! See the website or the poster below!

Thursday morning, I had a GP's appointment. I had been to see the pain clinic the previous week and I made the appointment, because I knew there was a possibility of changes to my medication. As it happened, there were changes, so it was useful to have the appointment.
I also had problems with my hearing again. I was struggling to hear out of my left ear. Apparently it is an inner ear problem, which is a build up of dust or pollen. It is something I am just going to have to live with!
I am also struggling emotionally with my MS. There is a lot happening at the moment. I am having things changed at home, adaptations etc, I have started using a wheelchair, I am going through an application for a wet room, and this is all starting to affect me.
I don't want to let it get to me and I don't want to feel sorry for myself, but sometimes, that is easier said than done!!

Anyway, I hope everyone is keeping well, or as well as can be!
Love & hugs
XxXxX

Peristeen - A hard story to tell!

I have always said that I will be open and honest on this blog.

So I have decided that I will tell you about the experiences that I have been having over the past few months, to do with my bladder and bowels.

It is not an easy subject for us, as a nation, to talk about, but I think if we were more open about it, it wouldn't then be such a difficult or embarrassing issue for any of us.

I found myself wanting to find information and talk to people, but not really knowing where to go, so that is another reason why I want to talk about this.

I have had issues with my bladder and bowels for a little while now, but it has been getting worse over the last few months. I was referred to the Bladder and Bowel care team at the local hospital, where I had an appointment with a lovely nurse. She put me at ease and made me realise that this is actually quite a common problem. It doesn't make it any easier though!

After talking through my issues, she decided that it would be better to concentrate on my constipation and try and get that sorted, because that may be having an impact on some of the bladder problems.

The first thing that was identified was that I don't drink enough. Keeping yourself hydrated is really important when needing to keep your bowels regular. So I have increased my liquid intake.

It is actually quite difficult, when you don't drink very much, to force yourself to drink more. But I have started drinking more water and I am actually enjoying water now. In the hot weather we have been having, it has been a God send!

We then talked about my diet and as I explained, at the start of the year, Martin and I decided that we wanted to lose weight, so our diet is actually quite healthy.

By the way..............I have lost over two stone so far!!

The nurse decided that the first path to go down was the Movicol path. I was really very constipated and would be lucky if I was going once or twice a week.

Movicol is a sugar and salt mix and the idea behind it, is to soften the stool, which makes it easier to pass. She wanted me to take one sachet, twice a day for the first three days and then go to one sachet a day.

I did this for the first week and it started to work, but then it turned into disaster. It went too far the other way and caused bowel incontinence............I told you this was hard to talk about!

Apart from the obvious, it was a really difficult situation, because it completely knocked my confidence. I couldn't go out anywhere, because I was afraid of what might happen. Obviously I stopped taking the Movicol. I couldn't face taking it and the consequences of that. Also it is not a pleasant tasting drink, even though I had chocolate flavour!!

I went back to see the nurse and explained what had happened. She said that Movicol isn't for everyone, so we decided that I would try increasing my liquid intake even more, eating breakfast and routinely trying to go to the toilet, whether I needed to or not. She showed me the best way to sit on the toilet, to encourage your bowels to open.

For the first couple of weeks this seemed to be going OK, but then for the next couple of weeks, I ended up being severely constipated again. It had been almost two weeks without going at all.

I was in quite a state and so I had to phone the nurse and ask for some help. At this point, because of the severity of the constipation, the suggestion was to take eight sachets of Movicol in one go. This was what was needed to force me to go. Of course, this filled me with dread. I managed to take six sachets. It was all I could face.

The problem, I find, with Movicol, is that there is no time scale as to when or if it is going to work. You take the sachets and then you just have to wait. I took my six sachets and ended up staying in my house for the next 24 hours as I had no idea what would happen.

I did manage to have some bowel movement, but it wasn't the clear out that I had expected. Over the following few days, I did manage to go a couple of times. I had been told by the nurse that if I still wasn't going regularly, then I should take a single sachet every couple of days. This scared me a little because I still didn't trust what it would do to me. As it was, I didn't do this, because I felt that it might go too far the other way again and I just couldn't face that.

The nurse made an emergency appointment for me and I went into the hospital to see her.

I went through every thing that had happened and I asked her whether Movicol was my only option, because it was clear to me that Movicol would not be a satisfactory solution. It was a big ogre in the corner of my kitchen and I couldn't bear the idea of taking it and the consequences that I would have to face.

The nurse then suggested a procedure that may be possible for me to try - if I was open to the idea. I was at the stage where I was open to any suggestions, if it was going to help my situation.

The system that she suggested is called Peristeen. It is what is known as an anal irrigation system. This did scare me quite a lot, but if it was going to work, if it was going to give me back some control and if it was going to make my life a little more comfortable, then I was willing to give it a try.

There is a separate nurse who deals with this system and it was arranged for her to come out to our house & chat to us. An information booklet and DVD was sent out to me, so that I could learn about it before she came out to us.

When she came, she bought one of the systems with her, so that I could look at it and see how it all worked.

It is done on prescription, so the nurse needed to get the prescription sorted out before I could start it. So it was arranged that it would all be sorted out for me to start the following week. The equipment was ordered and I received it. The nurse came out and I started using the Peristeen system.

It is quite scary to start with, because it is not a natural thing to do, but the more I have used it, the more it is becoming just a part of my daily routine.

It means that I am in control, I decide when I use it, so that I am going regularly and I don't need to worry about it. It is all done within about 30 minutes, so no more sitting on the toilet for up to two/three hours at a time. It has helped with the continual bloated feeling that I would get. I still get bloated etc, but it is nothing compared to what it used to be.

I am only about three weeks into using the system, but it really has made a difference to me. It is not pleasant to do and I need Martin's help, which is frustrating, but compared to how I was feeling when I wouldn't be able to go for days on end, this is worth it.

The following link, takes you to the Coloplast website and they are the company who supply this system.

http://www.coloplast.com/products/urologyandcontinencecare/peristeen/userguides/pages/userguides.aspx

I know this hasn't been an easy read, it hasn't been easy to write it.

I debated with myself as to whether I should actually list it or not. But I decided that I should, because I want to be able to help other people out there who may be going through the same as me............I just hope I can!

XxXxX

More Closer Than Ever Photos!

Some more Closer Than Ever rehearsal photos!