The Wet Room Story and photos!

I just want to send out thoughts to all those who have given their lives for us. In past conflicts and ongoing ones. They will all be remembered.

I have had a "tired" day today. I didn't sleep that well last night, but part of that was my fault. I am really enjoying the book I am reading at the moment - Tess Gerritson's Girl Missing - and I was reading until late last night. That doesn't lend itself well to getting a good night's rest!
We also got up fairly early because we had free tickets to go to the cinema and see a film that hasn't yet been released. I was very proud of myself though because I managed to stay awake throughout the film. Quite often when we go to the cinema, I don't manage to keep my eyes open, which gets very frustrating.
Talking about cinemas....does everyone know about the CEA card.
This is the Cinema Exhibitor's Association card.
It is a card that is available for disabled people to apply for. The card allows you to get one free ticket for a person accompanying you.
To apply you must be in receipt of either Disability Living Allowance or Attendance Allowance or you must be Registered Blind.
For more information please check out their website
http://www.ceacard.co.uk/

So I told you that I would finish the story of our Wet Room.
If you look back on my posts, you will be able to see the first part of the story.
In short, we had discussed our needs with my Occupational Therapist & she put a referral in to social services. Between my OT, the social services OT & us, an application was put together. It was a comprehensive application, in which several top pieces of equipment were asked for. It was all equipment, if it was granted, would make our lives a whole lot easier.
It was about nine months from when I had started seeing my OT, to when the application was put forward.
We thought it would be at least six months at the earliest before we heard whether the application had been granted. You can imagine our surprise when within a couple of weeks we had the go ahead for the wet room. And on top of it being fast tracked, we were going to get all the equipment that had been asked for. This included a body dryer, a push button shower, a glide about chair and a Geberit toilet.
The work started on September 28th and we went to stay with my Dad. This allowed the work men to just rip everything out and not worry about needing to keep a working toilet available!
We documented the process, you can see the photos below. I am so glad we did this, because I keep looking at the photos of the bathroom we used to have and I keep realising just how lucky we are.
I can now shower whenever I want to.......as long as Martin is about. But what I mean is that I don't have to plan my day around it. I don't have to limit what I do for the rest of the day after I have had a shower. Now I have a chair so I can sit down and shower. I don't have to climb into the bath, which used to wreck my legs and cause me lots of pain. With having the body dryer, I no longer have to use a towel to dry. This used to cause lots of pain in my hands & over my body. The sensation used to drive me crazy!
And the Geberit toilet is AMAZING! It is what is called a shower toilet or a bidet/toilet. It has made me feel so much more hygienic.
It really has made such a difference. I can't recommend it highly enough.
We really didn't think we would get it, but I am so grateful to my OT, the social services OT, the local council and the contractors who carried out the work.
It really is worth contacting people and asking the questions about what you need and what is possible for you to have. We never thought we would get something as wonderful as the wet room that we have but we got it. And it was fast tracked, so we got it really quickly.
You see some things really are possible!
XxXxX

MS Trust, Open Door publication!

Hey everyone,

Well yet again, I have had some time out from writing my blog.........I have slapped my hands.........and it hurt!!

So those of you who follow my blog or who have read any of my previous posts, will know that I wrote a post a while ago about a procedure that I have started called Peristeen.

Well, the MS Trust read that piece and thought I had tackled it really well. They asked me if it would be OK if they could publish the piece in their quarterly newsletter called Open Door.

I agreed because I had already made the decision to publish it on my blog, so I wanted people to see it. This would get it out there for many many more people to be able to read it. It's not that I want people to know about me, what I want is for people to learn about Peristeen and the fact that there are possibilities out there.

So they took the piece and adapted it.........but only slightly.

I knew that it would be coming out in the November issue of Open Door, but I hadn't really thought about it much. They had asked for a couple of photos, which was fine.......I don't mind getting my mug out there!!

In my mind, I had thought it was just going to be a small piece in the corner of a page. Obviously, I know that the piece is quite long, after all, I wrote it!

But I still didn't expect it to be a big two page spread in the newsletter, with three photos!

Constipation is a difficult subject to talk about, but I am so proud of this piece and I am proud that I have put it out there. If it helps just one person to ask the questions about this procedure or to open up about their own problems and get it sorted, then this will definitely have been worth doing.

If you don't get the MS Trust newsletter, then you can see the piece on their website at the following link.

http://www.mstrust.org.uk/information/opendoor/articles/1011_12_13.jsp

I have to thank the MS Trust. They have made me realise that being open and honest is a good thing and that it is the only way that we can all help each other in the battle against this awful illness.

Never be afraid to talk about your issues, there are always people out there who can help you or who are likely to be going through the same thing as you as well.

I have so much more to talk about!

I have had a busy couple of months with getting my wet room done and going on holiday. So expect to see me a little more on here! My wet room is an exciting little story and I have photos from beginning to end, so that will be my next post!!

I hope everyone is doing OK, especially with the colder weather that is now with us. I look forward to hearing from you all,

Love & hugs

XxXxX

Wet Room Application!!

Well, I said on my last post that I would write a post about my wet room application. Little did I know that the application was being dealt with and would be going through VERY soon!

I'll start at the beginning!

I have been having trouble having a shower for quite some time now. Because our shower is over our bath, I need to climb into the bath to be able to have a shower. That in itself has been a problem for a few years but over the past couple of years, I have had problems standing in the bath, washing my hair, getting in and out of the bath, towelling myself dry...........let's just say, I have had numerous problems with bathing.

I started seeing my Occupational Therapist in November 2009 and in December she put in a referral for social services to come and assess my need for a wet room.

At first, it didn't look good, because social services wanted to try and do as little as possible to resolve the situation - what I mean by that is they wanted to spend as little money as possible. I was quite frustrated by this, because my OT had already done an assessment and come to the conclusion that a wet room was required!

A few months later, I had an appointment with a social services OT. She agreed that a wet room was the best solution and together, with my OT, an application was put together.

This was done after we had all been to a local independent living place, so that we could see what was available and what would be required to suit my needs.

This was worthwhile because we came across some brilliant equipment.

There is the most amazing toilet. It is called a Geberit Aquaclean - check it out at http://www.geberit.co.uk/geberit/inet/uk/wcmsuk.nsf/pages/prod-aqua-1

It can be used as a regular toilet, but it also has some amazing extras! It can wash and dry and it has a sensor flush so I don't even need to push a button! It is self cleaning and looks like a "normal" toilet. I was able to try it (behind closed doors) and I was gobsmacked. I didn't even know something like this was available!

We were also shown a full body dryer. This is ceiling mounted and so I would be able to sit underneath it and get dry without the need for towelling myself and the pain that that has been causing me.

They also had push button showers. These mean that I don't have to turn taps on, which I am unable to do at the moment. It is all programmed on the unit and I then press the button which starts it all off!

It was also recommended that I would need a glide about chair. This is basically a chair on wheels, but it would mean that if I am having a particularly bad day, Martin can get me in the chair and wheel me into the wet room. I can then sit under the shower and sit under the body dryer.

The wet room would have a non slip flooring too.

The idea of all this, just blew me away. To be more independent with my bathing needs and to have equipment that would save me some pain, I just couldn't get my head around it!

So the application was drawn up and checked over. All these things were asked for but I didn't expect to have it all authorised. I know money is tight for social services to do these things.

A few weeks ago, I had the application sent to me for myself and my OT to check over. After a few changes, the application was then sent to the relevant department.

I was under the impression that the process of the application being looked at and gone through would now take up to six months.

I had a phone call last week, someone from the council wanted to come and look at the bathroom, do some measurements etc. We made the appointment, not really understanding what to expect.

The gentleman came last Friday.

He had various forms for us to sign and he was talking as though the work could start very quickly. They have a system now that allows certain applications to be fast tracked. We signed all the forms, still not believing that anything would be happening too soon.

He said he would speak to their contractor and let us know when they would want to come back to our property for the contractor to look. Again, we didn't think that this would be too soon.

You can imagine our surprise when we got a message to say that they would be here on Monday morning (today) with the contractor.

We still didn't really know what this meant or when the work was likely to start, even if it had been authorised.

They arrived this morning and luckily I already had an appointment with my OT, so she was here to check what was going on and ask any relevant questions.

They went up to the bathroom and were measuring up. They were talking about all the relevant bits of equipment and what would need to be done to fit them in.................we have a tiny bathroom!

You can imagine my shock, when I was told that the work will be starting next Monday!

I burst into tears! I have waited so long for this and to be honest, I thought it would be at least another six months before any likelihood of it starting. It also looks as though we are getting all the items of equipment that have been asked for too.

I can't believe it!

To have some independence back and to have all the hygienic items to help me feel so much cleaner (especially with all the toilet needs I have - see my Peristeen post). It's just amazing!

I have the utmost respect for my OT, social services and the people who are carrying out the work!

XxXxX

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!