The MS Trusts Continence Question Time

In 2010 I wrote a post here on my blog and it was a post that I agonised over whether I should publish or not. It was a very personal post to me on the subject of bowels so I didn't know whether I wanted to put that out there but I also knew that it could, potentially, help people. I knew that if I'd read a post like it, it could've helped me and that's what I started this blog for so I published it.......little did I know the affect it would have or where it would lead me! :-)

This is the link to that post!  http://talesoflifewithmultiplesclerosis.blogspot.co.uk/2010/08/peristeen-hard-story-to-tell.html

After I'd published the post I received a lot of positive reaction, which was great! The general feeling was that it was really helpful. So I was delighted! 

Not long after I'd written the post I was contacted by the MS Trust http://www.mstrust.org.uk/ They are a charity that was set up to provide free information to anyone affected by MS. They have a quarterly publication called Open Door and they wanted to know if they could put my post into their publication. I was staggered but what a great way to get the information out there. I agreed and with a few tweeks, so that it would fit in the magazine, it was published!

I was very proud, although it had been difficult to write and it was very personal to me, I had decided that it needed to be out there to potentially help other people in my situation and being published in an MS magazine was the best way to do that!

Last year I was then contacted by someone else at the MS trust. They were putting together two booklet publications about the Bowel and Bladder and they were asking me if I would look at them and provide any comments or suggestions. 

I was incredibly flattered, after all I'm not a professional expert in this field, I just happen to have MS which has caused me to have issues that have made me an expert in my own symptoms but if in dealing with my symptoms I have picked up knowledge that can help others I'm more than willing to share that information!

I didn't have to do much, just read through the document and let them know what I thought. I did suggest a couple of things but it was pretty good anyway! 

I guess I'm known in the MS trust as someone they can go to when they are doing something to do with continence because around the beginning of March this year I was contacted by someone else at the trust. They were putting together a Question Time type of panel. It was to be a Continence Question Time. There were to be a few medical experts but they also wanted a couple of people with MS who have or have had issues with continence to be a "real" element on the panel. 

Again I felt very flattered! After all I don't have an qualifications in this field, it's all just what I've picked up whilst dealing with my own symptoms! 

Anyway I decided that I wanted to be involved if I could. They wanted to get us all together and film the session so that they could edit it and put it on their website all throughout MS awareness week, which is 28th April to 4th May. 

I ended up going up to Letchworth for the filming but I was the only person there with MS as the other person couldn't make it. 

It was a long day as I travelled up from South Devon but it was well worth it! There were three healthcare professionals - a Neurologist, a bowel and bladder care nurse and an MS specialist nurse, then a chair person and me! 

The MS trust had put out on Twitter and Facebook what they were planning on doing and asked people to give suggestions of questions they'd like to ask if they were able to sit down with a panel like that and so we had legitimate questions to answer. We each took the lead on a question that was most relevant to us. 

The whole session was filmed and took a good couple of hours and from that they are editing it so that they can put it up on their website www.mstrust.org.uk for MS awareness week. 

When I know that it's on their website I will put the link on my blog here so that you'll have access to it! 😀

XxXxX

Community carers and Direct Payments!

Well, where do I start with this one?

I guess I go back to June 2012 and the time when I had an extremely poorly Martin. He was in and out of hospital (once we'd cut our long holiday short and come home!) and he was literally losing weight in front of me. It was a very scary and stressful time.
It was even harder as Martin was my carer but we found ourselves in reversed roles and as well as looking after him I was having to look after myself too. That was not happening very well at all.
I went to our GP one day to talk about my concerns with Martin and just how poorly he'd become. She also asked how I was coping, I wanted to lie and say I was fine but she saw straight through that and said she was going to talk to their person who deals with social services.
By that weekend I had emergency carers in place. They can come in for up to 7 days to give social services time to find a more permanent arrangement.  

I have to say that as nice as the emergency carers were, I didn't want them there!
They were there to help with my personal care and also to support me with the house too. It was such a difficult situation because I knew I needed the help but I didn't want the help! I guess I went with it though partly to stop Martin from worrying. He was going through enough as it was so the last thing he needed was to be worried about me too.  

Social services and the community matron came here first and they discussed with me what it was that I needed and what support they could give me. I then also had a visit from the district nurse. I needed help from her because I use the Peristeen system but I can't use it on my own. That is the system I use to help me have control of my bowel movements. I hadn't used it for a while because Martin was just too poorly to help me. As you can imagine, because of this, I had got myself quite badly constipated....never a good plan!
The idea of having help with using Peristeen, from health care professionals, filled me with horror but they were fantastic! To them, it is their job, they don't find it difficult at all! 

Next I had a visit from the manager of the home care company that had been assigned to me. I was pretty terrified because I didn't know what to expect but I was put at ease straight away and assured that my needs came first, what I needed and wanted from my carers was what they would do their very best to provide me. 

I had a care plan that had been put together by social services and the home care company provided a folder with all the information about my needs, my issues and the things I needed help with. 

One of my worries was that I would have lots of different carers sent in to me and I really didn't want that. I wanted to have a core group of three or four people who would get to know me and my requirements. 
To start with I found it very difficult to ask people to do things for me. The best way for me to do it was to write a list and give it to whoever came in, but even that I found quite hard to do. It is hard to sit down and let somebody else do what I felt that I should be doing, but then that is what has got me in trouble before because I would push myself to do house stuff but really pay for it in pain and fatigue later on.

The first few weeks I had my wish of just a few carers who got to know me and what I wanted/needed. Those first few weeks were pretty stressful anyway because we were still pushing for a diagnosis for Martin. He was still incredibly poorly and the Doctors were having real difficulty pin pointing what the problem was so I was actually very grateful to have some extra support both physically and mentally.

Over the following weeks and months we settled into a good routine, I'd have my hour and a half in the mornings and the half an hour in the evenings. This was just while Martin was in hospital. I was spending all the time I could down there and I wasn't getting home until about 8.30pm. I'd then have a visit which was actually really helpful because I had someone to talk to about Martin if I wanted to.
I have to say, at this point, a massive thank you to our friends who rallied around me while we were going through all this with Martin. It's at times like those that you really find out who are your friends and we have some real gems! 

I will also point out that Martin was eventually diagnosed with a mega rare malabsorption illness called Whipples Disease (Nothing to do with the Whipples Procedure which is something completely different). Nothing that he was eating or drinking would stick, it would go straight through or he'd bring it back up. This meant he was losing weight at a ridiculous rate. But they found it and it was treatable.......with antibiotics.....twelve months of them! ;-) After a nearly three week stay in hospital, he was ready to continue on his road to recovery back home! :-)

After the first few months of having the carers in, we had got ourselves into a decent routine. The only issue then was that my carers started to change. Obviously it is a job and people come and go but when you are dealing with people's personal care it is really difficult to have changes in personnel. And I found it incredibly hard, there were only certain people that I could handle helping me to shower for example. It is a very personal thing, I'm still relatively young and so I needed to preserve my dignity as much as I could........and this was one thing I felt pretty strongly about. 

I realised something quite early on. Those carers that came in and spoke to me like another human being, who wanted to engage with me, to understand my illness and how the disabilities affected me, those were the carers that fast became my friends, who I had confidence in and I felt I could trust. It was the carers that came in and you were just a client on their list, it was just a job to do and they didn't really want to know you, they were the ones that I didn't gel with and I couldn't trust with the care when I was vulnerable. As time went on though I had really got used to having the carers there, especially the morning slot. I started to think that actually I wanted them to stay helping me......a complete turn around from when they first came in!! The issue would be whether social services would agree that I needed it.
I had my review from social services this January just past. It went really well and the lady who came, my contact at social services, said she had no reason to stop my care but we would just tweek it a little. 

We have stopped the thirty minute afternoon call as we don't really need that now Martin is able to help out again but she was definitely going to keep the hour and a half for six mornings a week. I also get two social hours a week which is to help me to go swimming but also to do things like going out to places like the zoo or cinema or any similar types of things to enable us to get out of the house more.

The other thing we discussed was a new scheme called Direct Payments. I had heard of it before but I wasn't sure how it worked or how it would affect me. Essentially it puts the control back into my hands. The council give me the money (wages) and I am then the employer. I am given two different rates of pay, one is if they come as an employee, this means that it is my responsibility to sort out their tax and National insurance (NI) or the other rate is if they go self employed, they get a couple of pounds an hour more but they are then responsible for their own tax and NI.
The council also give me the money to take out Employment Liability Insurance so that everything is covered. They then set up an account that I am able to pay my carers wages from. It comes with a card attached to that account so that I can pay for things with the card if I need to too. 
I get to choose who my carer will be and they can be a family member or a friend or you can just advertise for someone! The only thing is that they can't live at the same address as you. 
I'm very lucky as I have a lovely friend who came in at short notice but I trust her completely. We get on very well......she and Martin get on very well too and it feels like a really good arrangement between us both. We are in our third week and so far so good! :-) 

The whole scheme definitely suits Martin and I better than having my care supplied by a company. It is cheaper for the council because the money they give me is a fraction of what they were paying the company. It gives us more choice, more freedom and definitely more control and I can certainly see why they are trying to move people over to this. But I can also understand that it wouldn't suit everyone.

Fingers crossed this is a permanent arrangement for us! ;-) XxXxX

  

Photos from Disneyland Paris Feb 2014

Here are just a handful of the photos that we took when we went to Disneyland Paris in February thanks to the MS Society.

We had a wonderful week and that was very special but the lift it gave us wasn't just in that week, it has continued since we got home because of these photos........we have been able to look at these and remember what a fantastic time we had, so the positive feelings have continued! :-)

Thank you so much MS Society and also a couple of smaller charities that also helped with funding, we feel very blessed! :-) XxXxX

Planning, Preparation and Disneyland Paris!

One of my biggest problems since being diagnosed with MS is that I don't know how to plan. I keep going until I drop instead of looking after myself and making the most out of my days!
So, as you can imagine, getting ready for our holiday was quite challenging! There was so much to do before we went but it was working out what was the priority that I found quite tough!
I'm my own worst enemy too because I have to do everything myself, for example, packing, I couldn't let my husband do it otherwise I'd worry that we didn't have everything so I got it all put together in piles but then I did ask one of my carers to help me with physically packing it........even that was tough going though because no one else can pack the same as you do yourself can they?!?!

I've always found looking after myself quite difficult. As children, my siblings and I were always taught to be independent and to stand on our own two feet and that is what I always tried to do. I was working two jobs when I was diagnosed and I always remember thinking, when I was signed off sick and couldn't even think about going to work, that if someone had come along and said that I couldn't work, I'd have snapped their hand off at the chance but when you are in the position where you physically can't go to work it's a totally different feeling. I guess because the decision has been taken out of my hands. Because I physically can't do the work and being in pain and having fatigue that means I can't keep my eyes open no matter how hard I try, the decision is actually taken out of my hands. I haven't sat back and thought "you know what, I'm not going to bother working any more" it's been a case of "you can't work anymore" it makes all the difference in mentally accepting the situation you are in. 

So we went to Disneyland Paris and what an amazing time we had! 

There were a few decisions that we made when we booked the holiday which were really good decisions! Taking the car was one,  it meant that we weren't relying on the free buses that were available and I had taken my wheelchair so having the car just made that so much easier. 

I have a blue badge so we didn't have to pay for parking at Disney and we were able to park  as close to the parks as possible which made everything a lot easier too. 

We had booked the hotel for a week although most people who go to Disneyland Paris tend to go for 3 or 4 days. But that decision was a good one too because it gave us plenty of time to do everything without having to rush to fit it all in. This was probably one of the biggest advantages that we had. We had time for rests if we needed it and that was a great help.

We had been told that when we got to the parks to go to the Disneyland Park first and go to a place called City Hall, which is basically their customer services place. I was told to take my blue badge with me and this would get us an access pass. It is a card that tells the ride staff what type of mobility issues you have,  for example whether you are wheelchair bound or whether you can transfer out of your chair onto the ride, that sort of thing. I can transfer so that meant I was able to go on most of the rides! But having that card was a Godsend. It meant that we didn't have to queue for any of the rides. We had to wait maybe five or ten minutes but not thirty to forty minutes or over an hour on some of the rides and that made all the difference to our enjoyment of the parks.

The only problem we had and it wasn't really a problem was that we had wanted to go into Paris to do some sightseeing. There were some excursions that went from the hotels that would have been the easiest way for us to do it. We didn't really want to drive into the centre of Paris! But the first excursion couldn't take my wheelchair and there was walking involved on the tour so I didn't want to do that. Then the second tour could take my chair but it gave you four hours in the centre of Paris as free time and we didn't want to get stuck in there twiddling our thumbs waiting for the coach to come back! So we didn't go into Paris.......but we have been before so it wasn't a huge problem! 

So all in all we had a very successful trip and we can't thank the MS Society and a couple of other charities enough because between them they paid for us to have ten unforgettable days away. And yes those ten days were amazing but the lift it has given us since we've been home has been great too. I keep looking at our photos and reliving the time we had there so it really has made a difference to us.

I would urge anyone who has MS but can't afford to go away or if there's something specific you want to do but can't afford to, apply to the MS Society's Social and Activities fund. That is exactly what it is there for. If it hadn't been for my friend who told me about the fund and encouraged me to apply we wouldn't have these wonderful memories! :-)