Relapse or No Relapse??

When and how do you know when you are having a relapse??

I have always had an issue with this. I have symptoms every day and yes sometimes it can be really obvious when you are having a relapse. One of my first relapses in 2003, I lost my mobility. I couldn't move my legs properly and from that time onwards I have had to use crutches. I am also using a wheelchair, at times, now too (with much reluctance!).

That relapse was very clear to me, but I have had plenty since then that I am unsure whether you would call them a relapse or not.

I had one in June that I was sure at the time was a relapse. I had increased pain & fatigue. I started getting really heightened spasms and had to start on Baclofen. It was at this point where my constipation was very bad and I had to start on the Peristeen system (see my Peristeen post).

I had an MRI shortly after this started and when I got the results at the beginning of September, I was told that no new lesions had shown up. This of course is good news, but it made me question whether I was making all my symptoms up?

At the end of August, I have started having more increased symptoms, which I am now sure is a relapse (it is still ongoing). It's just a shame I can't have another MRI scan as I feel sure something would show up!

This time I started off with a weak bladder. I felt the need to be going to toilet a lot more frequently than normal. This started at the beginning of a week. On the Friday of that week, I had really bad pain in my eyes. The eye sockets were painful, it felt as though they were bruised. Also when I moved my eyes, I felt pain and quite sick. It also gave me a really bad headache. This continued over the weekend and then on the Sunday, I started getting a really bad spasm pain in my right hand. I found it really hard to use my right hand for anything because of the spasms, and the pain I experienced in that hand was quite unbearable.

It then proceeded to affect the whole of my right side. I had a shower and when Martin washed my back, you could have split it in half. The right side was numb but painfully so, where as the left side was the normal altered sensation for me.

I have since been feeling worse. My right leg feels like I am lifting around a ton weight. I am really fatigued and experiencing heightened pain...................again!!

Another thing I know is that I have been really busy lately! I have been doing a lot of singing which, of course, is something I love, but has that contributed to how I am feeling?

And have you noticed how the Doctors leave all the decisions to us? I know that we have to have the right to choose but sometimes, I just want someone to tell me what to do!!

I do find it really hard though because I am still questioning whether I am actually having a relapse??

Does anyone else have this problem?

I hope everyone is well and not suffering too badly with the change of seasons. I am going on holiday in four weeks so I am really looking forward to that. And how important is it to have things to look forward to?

We are going on a Canal boat holiday again, as we did last year. It's a different time of the year this time though and we are going on a different canal. This year we are going up to Chester and on to Ellesmere Port - starting from Audlem.

I had a decision to make as to whether to take my wheelchair with me. I have decided to take it, because I don't want to have any reason as to why I can't do anything!! We are going to explore Chester city, go to Chester Zoo, go to the Blue Planet aquarium and go to the Boat museum at Ellesmere Port - I am really excited!! The distance of the canal and the number of locks are fewer than we covered on the Llangollen canal last year, so we know it will be a nice relaxed time!

Can you tell that I am REALLY looking forward to it!!

I will write another post very soon, because I am going through an application process to have our bathroom converted into a wet room. It has being ongoing for a few months already but the application has been sent off now. I have someone coming tomorrow to do a statement of needs/costs, so that the grant can be looked at and then they will look at our finances.

I will write a separate post about all this as it is quite a complicated process!!

Sending best wishes to all MSer's out there, I hope you are all keeping well!

XxXxX

PS, I must just wish my Dad a very Happy 70th Birthday for tomorrow - I love you Daddy! XxXxX

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!

£3780 RAISED! YAY!!

So apologies once again for my lack of posts.
You may be aware that we have been doing our fundraising concert - Closer Than Ever and although we did it June 25Th & 26Th, I have been recovering ever since!
It has taken a while to get all the figures sorted out but now that we have, I am so proud to be able to say that we have raised £3780 for the Multiple Sclerosis Society, South Devon Branch and Rowcroft Hospice.
£3780! Wow! I am so grateful to all those involved and to everyone who supported us. We had such an amazing time. It was so well received. The audiences loved it and we had so much fun performing it!
I'm so proud!
I'm proud of what we have achieved for two worthwhile causes. But not only that, I am so proud of what I managed to do. I organised all the front of house "stuff" and I performed in two shows. I was totally exhausted! It took me about two weeks to recover...............or actually am I still recovering??!! But I had done it! And I had enjoyed it! The build up to it had been quite scary. I had begun to doubt whether I would get through the performances, but I had so much support from Martin and all the rest of the cast. It's always scary just before the shows start, we constantly ask ourselves why we do it?! But then the enjoyment of the actual performances, the reaction and encouragement from the audiences and now the fact that I can say that we have raised £3780, made all the stress and the panicking worthwhile!

On top of doing Closer Than Ever, our kitchen floor decided to start sinking! We discovered that one of the pipes up to the hot tap has been leaking and it looks like it has been doing it for a long time, because the floor is about 80% saturated! We are getting it sorted through the insurance company, but it is taking forever! And in the meantime, we have two big wholes in our floor. If it wasn't for the lino, we would have fallen through by now!!

It has been quite a difficult few weeks. Not only did we have Closer Than Ever to concentrate on and the kitchen disaster, but I have been dealing with a few issues with my Multiple Sclerosis too.

I will explain them over the next few posts. Some of the things are not easy to talk about, but I want to, because I want to help anyone else who may be going through the same things as me. I am not looking for any sympathy and I am not doing it so that I can get people to see what I am going through. I hope anyone who reads this knows that. I know how I felt when certain things were suggested to me and I really didn't know where to turn. I hope that by "putting it out there" I can help even just one person.

I had an MRI scan last week, so that my consultant can look at the results and we can discuss where we are with my treatment. I have a follow up appointment booked on September 6Th, so I'll keep you posted!
I am still having my Tysabri infusions. I have had 14 infusions so far. It is a strange feeling, because I am not convinced that I feel any different. I want to be positive about it, I want to feel as though I am going through this for some real benefit. But I don't. I know that some people feel when they are due for their next infusion. As the infusion comes round, they start to deteriorate and know that they are ready for the next one, but I have never had that experience. Does that mean it isn't working, I don't know? How do I know whether it is working, I don't know? Will I ever know whether it is working, I don't know?
I am still having my battles with pain. I am currently on Oxcarbazepine, Targinact, OxyNorm & Ibuprofen for the pain. I am also taking Baclofen for spasms and a couple of other meds for other things! I have an appointment with the pain clinic this week, which I am glad about. I am struggling so much with my hands, especially my right one and of course, I would be right handed!

And the heat hasn't been helping. I appear to struggle in both extremes, when it is very cold or when it is very hot. At the moment, my hands feel as though someone has slashed them with some razors - not that I know what that feels like, but it's what I imagine it would be like!

It makes doing anything really difficult, but of course, I don't stop doing it, otherwise my life would stop. It's like a no win situation.

Anyway, that's enough for now, as my hands are starting to hurt.....a lot! I will be back very soon with more updates though. I will be talking about our new bathroom, my new wheelchair, Peristeen and various appointments..........so watch this blog!

Love & hugs to you all, I hope life is treating you well!

XxXxX

Closer Than Ever Rehearsal Photos!

Hi everyone!
I apologise for my lack of posts recently. I have been having quite a difficult time, as well as being very busy with rehearsals for our fundraising concert, which goes on next Friday & Saturday 25th & 26th June. If you want to know the details, I will add the poster to this page after I have added some rehearsal photos from our rehearsal tonight!

XxXxX

Closer Than Ever - videos from 2004 production!

Here are some video's from a rehearsal we did, for the first fundraising concert of Closer Than Ever, we did back in 2004. It was a great success, we raised £1000 that time.
The first video has Joe McNulty singing One Of The Good Guys and the second video is Joe McNulty, Martin Southard and me! We are singing She Loves Me Not.
Enjoy!!

XxXxX