Monday, 20 September 2010
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!
Thursday, 16 September 2010
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!
PS, I must just wish my Dad a very Happy 70th Birthday for tomorrow - I love you Daddy! XxXxX