Friday, 11 April 2014

What Do You Miss?

I've never been one to sit and wallow!
I remember, not long after I'd got my diagnosis, having a conversation with myself (as you do!) about having a choice. I could choose to sit and feel sorry for myself about what life had thrown at me or I could get on with my life as best as I could. To me that wasn't a choice....I wasn't going to sit and watch life pass me by. 
Now don't get me wrong I have my moments.......just ask Martin and he'll tell you, but I guess what I'm saying is I didn't give up. I had too much to give to life to watch it sail on past me!

But just recently I realised something that made me quite sad, something that I hadn't really thought about before........I miss going for a walk! 
Just getting up, being out in the fresh air and walking wherever your feet take you. 
Now I can still walk but I need to use two gutter crutches so it takes quite a bit of effort, it is painful and not overly pleasant! I've been on them for over ten years now and it's only recently that I've had this realisation, it's strange isn't it?

I think my recent trip to Letchworth made me realise just what an effort it is for me to walk, having to walk as much as I did between trains and taxi's. One of my friends, who also has MS, gave me a telling off because she couldn't believe that I hadn't asked for assistance. Apparently they have buggies at the main London stations that will pick you up from the train and take you to the taxi's!
I had no idea but then I find that with a lot of things since becoming disabled, they don't always make the things that are available to help you, obvious to you. There were lots of things to do with financial assistance or practical help, which you would think should be readily available to people, that I wouldn't have known about if someone who had been in the same position as me, hadn't told me. 
Going away to Paris was a prime example! 
We had no idea that the MS Society have their Social and Activities fund. That is there for anyone who has MS to apply for a grant to help towards a short break or an activity that they wouldn't be able to do otherwise. It is a fantastic thing and I can say without any hesitation that it has done Martin and I the world of good but had my friend not encouraged us to apply we'd never have had that experience! 
The MS Society also have grants to help with equipment etc. This is also a very valuable service available. 

So many really positive things have happened this year or are going to happen that it feels quite weird! I know that sounds a bit strange but I guess Martin and I have struggled for over ten years without much help or assistance that to be getting it now feels a bit alien! I have found myself wanting to say that we don't deserve it. Now I don't mean that in a shallow way, I think we have just been blown away by the generosity of people and organisations. 
And yes we have had a very difficult couple of years with both of us being very poorly but that's just life isn't it?

We've been to Paris, we have a London trip to plan for, we have had the situation with my carer and going onto Direct Payments, which is working brilliantly and is giving us so much more freedom and opportunities. 
We also have lots of plans for days out and places we want to visit........but none of them will be going for a walk anywhere! ;-) 


Monday, 31 March 2014

The MS Trust's 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 would'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!

After I'd published it 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 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 tweaks, so that it would fit in the magazine, it was published!

Move forward to last year, I was again contacted by the MS Trust. They were compiling two booklets, one for bowel management and one for bladder management. They asked whether I would look at them to see what I thought and to provide any suggestions. I was surprised that they had remembered me and the post I had written and so it was quite flattering that they wanted my input for their project!
They have done a good job with them and the booklets are available for anyone who may have to face these issues. Just contact the MS Trust if you would like to look at them.

Now move forward to the beginning of this year and I received an email from the MS Trust again! This time they were planning to get a panel of people together, both professionals and MS sufferers. They would then, through Twitter and Facebook, ask for people to send in questions, with regard to the bladder and bowel, that they would like to ask if they could sit down with the panel. From those questions some would be chosen for the panel to discuss. This Question Time type panel would then be filmed and it will be uploaded onto their website to be shown throughout MS Awareness week, which is 28th April - 4th May

They wanted to know whether I would be interested in being on the panel?!

It is a topic that is very close to my heart. I have struggled with severe constipation for quite some time now. It started a couple of years after my diagnosis but it took me a while to admit to myself that I was having a problem. 
I have said before, it is a subject that, as a nation, we are really bad at talking about. It isn't a pleasant topic of conversation but we are all the same. It would really help so many people if we weren't so embarrassed to talk about it and to be given a chance to be on this panel was something that I wanted to be a part of.

I was invited up to Letchworth which is where the MS Trust is based. I would be travelling from Devon so it was going to be quite an undertaking because of the distance.
Martin had his own appointment on the same day so I needed to find someone to come with me, there was no way I would be able to manage to travel all that way and back on my own. Luckily my new carer was able to come so we booked the tickets and went up last Monday. 
The panel consisted of a lady from the MS Trust who would chair the session, then there was a neurologist (who specialises in Urology), an MS specialist nurse, a bowel and bladder nurse!! There was supposed to be two of us who are living with MS but the other gentleman couldn't make it so I was there to represent us all! 
We had a selection of about six or seven questions and we sorted out who was going to take the lead on each question.
The cameras and sound equipment was all set up. We got ourselves positioned and away we went!

It really was a great thing to be a part of........I learnt a lot from the three other panelists, they had such an array of knowledge between them but I think I held my own too.......that's where all my acting experience came in very handy! 
We covered a fair amount of differing issues and the hope is that there will be plenty of useful information to help lots of people......we just need to point them in the right direction! ;-)

I will put the link up to the film when it does get put on the website! 

I hope everyone is doing well and feeling positive now that the clocks have gone forward and we are well on our way with Spring!
Wishing you all the very best :-)

Wednesday, 26 March 2014

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


Sunday, 23 March 2014

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

Thursday, 13 March 2014

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! :-)

Wednesday, 5 February 2014

The generosity of people, it puts your faith back in human nature!

2014 is going to be a good year!

It is already quite exciting because Martin and I are off to Disneyland Paris next week and this has all come about because of an amazing lady who is always looking out for Martin and I. She is a remarkable friend who I met over 10 years ago. She has MS herself but she is a rare person who cares a lot about other people and making sure they are getting everything they deserve. 
She was telling me one day about something that the MS society have called the Social and Activities fund. It is a grant that people can apply for to help anyone with MS to do something that they wouldn't normally be able to do. She said to me that I ought to think about something that Martin and I would like to do because I could apply to it. I wasn't sure that we would qualify for it after all we had been away with my Dad last year, but she asked me when was the last time that Martin and I had been on holiday together.....just us. I thought about it and I think it was probably 2005! 
I still wasn't sure that we really deserved anything like this but she got cross with me and said that nobody deserved to go through everything that Martin and I have been through over the past couple of years. 

I thought about Paris because we have a friend who lives there and we had said we'd love to go over and see her and also take in Disney too.......we are big kids like that!! 
Anyway I didn't really think any more of it until my friend and I went for a coffee and she asked me whether I'd decided what we wanted to do! I told her my Paris idea and that to begin with I wanted to do it as a surprise for Martin but I then decided that if we were going to do this I'd really need his help to plan it all. I went home and told him my idea. He was definitely up for applying although neither of us really believed it would happen......things like that don't happen to us!! 
My friend organised for an application to be sent to us and she came round and helped us fill it in. She had also arranged for our MS nurse to write a letter of support and she herself had written one too. 
I had found a deal to go to Disneyland Paris, staying in one of the Disney hotels, with half board and tickets to both parks included but it had to be booked by Christmas day! 
This was all just a few weeks before this Christmas just gone. I remember it was a Wednesday. My friend took the application form and said she would put it together with the letters and get it sent off.........and that was that, we'd done it, but we still didn't really think we would get anything! 

How wrong we were! ;-)

On the Friday of that same week, so just two days later, my friend phoned me. She said we had better start planning properly because we'd been given a grant. 
This was about receiving the best Christmas present ever! And we didn't have long as we'd already thought that if we did get a grant we would go in February!
It didn't stop there because the grant from the MS society only covered the hotel and a few other bits. Martin had decided that he was happy to drive over - he's got to do it all as I'm not allowed to drive at the moment because of the Menieres Disease. It would mean we would have our car with us though which would mean having my wheelchair and a comfortable way to carry all the other things I would need to take like my Peristeen equipment etc. 
So we would need petrol money as well as money for sightseeing etc. My friend then organised application forms to send off to another couple of charities and we've received other funding to help cover these things. 
It really is amazing, my friend is truly amazing because without her we'd never have thought this was possible and without the MS Society we wouldn't be going! 
To be honest I'm still pinching myself to believe that this time next week we'll be on our way to France.............amazing!! :-)

I hope you are all staying well with this appalling weather,
Stay safe :-)

Sunday, 2 February 2014

I got an answer to my question, MS or Menieres Disease?

So last Monday I got an answer to my vertigo question, is it because of the MS or do I have Menieres Disease? 
I have Menieres Disease! 
I guess it's the lesser of two evils........I've had a few people ask me which I'd prefer it to be? Well actually I'd prefer it to just go away so I don't have to deal with it at all but I guess that isn't an option! 

I had a hospital appointment last Monday, they were going to look in my left ear and see if they could see what was going on and if necessary they would put a grommet type thing in the ear. It was all going to be done under general anaesthetic. 

We got to the hospital and I was called through to see the Doctor. Straight away he told us that they couldn't do general anaesthetic today as some members of staff were off sick and it was too dangerous to do without the correct number of people. However he did explain that the test they wanted to do in my ear was perfectly safe and OK to do with local anaesthetic. So they were happy to go ahead with that, if I was happy too. He then explained that they would look at putting in a Collar Button, which is a kind of grommet type device that they put in the ear. He said it depends on what he sees when he gets to look in my ear. 
I agreed that he could go ahead with the test, I have to admit that I hadn't realised that there was a test that could be done to confirm Menieres Disease. I did wonder why it hadn't been done before but I guess we had to rule out the MS etc. 

I was first on the list so there was no waiting around. I was taken into a small theatre room where the Doctor piped a cream into my ear. This was the local anaesthetic. It needed about an hour to work so I was taken to a recovery ward to wait. The doctor had also told me that they wouldn't be putting the Collar Button in today because my ear canal wasn't straight enough, if they do put one in it will have to be done under general anaesthetic.

After they'd finished with the next patient, they came and got me and took me back to the theatre. There was an audiologist in the room along with the Doctor and nurses. The audiologist was there to put some sensors on my forehead. The doctor then vacuumed out the anaesthetic cream and explained that he would be putting a thin probe in my ear. After that there would be some knocking sounds. I didn't need to do anything, just lie there! 

The test itself didn't take long, around 20-30 minutes and it didn't hurt either! The doctor said he'd talk to me after I'd got changed and so I was taken back to the recovery ward again. 

When the Doctor came to see me he didn't beat around the bush he just said that I had tested positive and that yes I did have Menieres Disease. I wasn't really surprised as it was what we had all suspected anyway. 
He said that they would see me again in about a month. 

I'm on Betahistine 16mgs three times a day which he was happy with but that is the maximum I can take so he suggested that maybe I could take less of it at the moment while I'm not having any clusters. I have lowered my dose down to 16mgs once a day for now so that when I do have some attacks I've got somewhere I can go with the medication. 

He told me to try and make sure I have a low salt diet and stay away from caffeine as much as possible! And then there was the usual advice that if I do have any attacks to look after myself, stay in bed etc all the things that you have no choice but to do when you have a vertigo attack. 

I'm doing okay at the moment (I'm touching my head while I write this of course!) My last attack was December 16th. That is really very good! I'm just hoping that it lasts......if not for a long time then at least until after we get back from our trip to Disneyland Paris in a couple of weeks!! ;-) 

I hope you are all doing okay and that the New Year is starting well for you all.

Sending much love and best wishes

Amelia XxXxXxXxXxXxX