Monday, 31 May 2010

Barnaby & Kit Kat, they know just when I need them!

I know I have talked in the past about how much comfort my two cats bring me. They have a sixth sense and just know when I need them. Barnaby has been sleeping at the foot of our bed for the last few weeks, in between my feet & he would come up to my head and give me cuddles during the night! I think it has started getting warmer, so he is not staying up there as much now, but Kit Kat has now taken to sleeping on my back. And it really is a comfort to me!
Here are some pictures of them being very cute. The ones with Martin, are Kit Kat having cuddles with her "daddy"! She is a real Daddy's girl! There is also a great one of Barnaby doing his yoga position!!

Our gorgeous babies!

Sunday, 30 May 2010

Photos - Wheelchair & Closer Than Ever!

I thought I would put up some photo's. I have started customising my wheelchair, but also there are some photo's of our Closer Than Ever rehearsals and the poster that we are using to advertise it - enjoy!

The Tatty Teddy is attached!

Closer Than Ever Rehearsal photos

Align Centre

Closer Than Ever Poster

Coping............or not!

Happy Bank Holiday Weekend!
I have been taking the Diazepam & the Baclofen for two days now and I am happy to say that they really seem to be helping with the spasms. It has knocked me out a bit, but I was expecting that and actually it's not a bad thing. It is forcing me to rest!
I am still having major issues with pain, which is really annoying. But I am able to cope with it a little better now, because I've had some rest. It's amazing how much fatigue can impact on everything. It's not just the physical issue of having to rest and not being able to do much, but it is how it affects you emotionally. It can make things seem so much worse, which of course, just brings you down even more.
I had this problem on Friday. I was so fatigued and in so much pain, but because I was fatigued, I just couldn't handle the pain. I just wanted to sleep so that I didn't have to think about the pain or how I was going to deal with it.
I am glad that I persisted with the Doctors and asked for help. It's not easy to admit that things are hard or to admit that you aren't coping, but when you have done it, it is usually the best thing for you!
I am currently seeing a Psychologist at the moment and I have to admit that it is helping me. It is very useful to be able to talk through "stuff" with someone who has no connection to me. I have to go to them for the appointments and to begin with I was a little apprehensive about it. I didn't like the idea that I was actually "going" to see someone. It didn't feel right to me. But now I realise that "going" to see someone, means that I can leave it behind when I have finished.
I think that this is working for me. I'll let you know in time!

Another thing that happened on Friday, that just added to everything else, was that my new wheelchair was being delivered.
I was chuffed that I was getting a new chair, because the reason behind it, is that I have lost weight, so my original chair was too big now! That feels pretty good, but the whole idea of having a wheelchair, is still a major issue for me.
So when I was feeling really low on Friday, I really didn't think I could handle dealing with anything to do with a wheelchair.
But, I have to say, that I was pleasantly surprised. I was lucky to have a good friend with me, when the chair was delivered and that made it a lot easier to handle. We were able to make light of it and so the situation wasn't as stressful as I had imagined it would be.
The chair itself, is so much better than the last one. It is brand new and it has quite a sporty feel to it!! It comes apart more than the last one, so that it will be easier for Martin to deal with. The wheels come off, along with the foot plates and the arm rests. It is a lot more comfortable than the other one and I'm not squeezing myself in to it, it is still quite roomy.
The really positive thing, is that I can see myself using this chair. I have said to Martin, that I want to go out in it over this weekend, and that is a huge thing for me! I am quite proud of myself for the progressive I have made in my head - now I just need to use it and stop making an issue out of it!
I have decided that one way for me to deal with this, is that I am going to have to customise it!
I am a massive Me To You fan (the grey bear with the blue nose!), so I am going to cover it with stickers and I may have to attach the odd tatty teddy or blue nose friend!!
I will take photos, once I have done it!

Anyway, the Diazepam is kicking in again and I am struggling to keep my eyes open. So while Martin is playing a mad shoot 'em up game on the PlayStation 3, with Matthew, I'm going to go and have a lie down, upstairs!!
Wishing you all a great Bank Holiday weekend, I hope the weather holds for you all!
Love & hugs

Saturday, 29 May 2010

The story of Mike Batt & my cuddle with Rolf Harris!

One of Martin's favourite composers is Mike Batt. He wrote The Hunting of the Snark, which is one of Martin's favourite musicals. He also wrote the wombles theme, which makes him a God in my eyes!!
We found out that he was doing a one off concert in London and the temptation to go proved too strong! We looked into the price of tickets and I contacted Cadogan Hall, the venue, and asked whether there were any discounts for the disabled. Amazingly, there were. We only had to pay for one ticket, as a carer goes in free. It was like everything was pointing to us going.
So we bought our tickets and then sorted out accommodation and transport to get to London. We decided to go via National Express coach. Our return journey cost us £1 each! And we stayed in a Travelodge, which was cheap, but it's standard accommodation, so you always know what you are going to get.
About a week before the concert, I decided that I wanted to try and do something special for Martin. He is so special to me and makes my life so much more bearable, that I wanted to do something that would show him how special he is.
I knew that Mike Batt was on Twitter, so I decided that I would send him a message. I explained our situation, that I have MS and that Martin gave up work last year, to become my full time carer and I explained that I wanted to do something special for him. I told him that Martin is a big fan and that we were coming up to London from Devon, to see his concert. I asked him whether there was any chance that we could meet him. I had nothing to lose, he could either reply, say no or just ignore me, but it was worth a try, what ever the outcome.
Imagine my surprise, when he replied! He said that they had to get out of the venue straight away after the concert, so we wouldn't be able to see him after the concert, but he said that they were having a rehearsal in the afternoon and if we could get there, we could sit in a watch it! WOW! I was astounded! I didn't know what to do with myself! I really hadn't expected that! I didn't want to tell Martin, that was the whole point, but I had to tell someone, so I sent my friend a text - "screaming"!!
I rearranged the coach, so that we could get to London in time, asking Martin, if he trusted me!! I confirmed with Mike, that I had done that & he told me to go to stage door and ask for his assistant! I was so excited! I desperately wanted to tell Martin, but I knew it would be better if I could keep it a secret!
And I managed it!!
We caught the coach up on Monday morning, we checked into the Travelodge and then got in a taxi to take us to Cadogan Hall. I told Martin to get in the taxi, while I told the taxi driver where we wanted to go. Once I had got into the taxi, I asked Martin if he had heard where we were going? He said he hadn't, but I decided that now was the time to reveal what I had done! I was convinced that he had already worked it out, although I don't know how he would have!
So I told him, that we were on our way to watch Mike Batt's rehearsal. He was amazed! He genuinely had NO idea that's what I had planned and he was really chuffed!
It was an amazing day. Cadogan Hall is a wonderful venue. The seats are really comfortable and it is a really great place. Mike Batt had a grand piano in the centre of the stage and he was surrounded by a full 50 piece orchestra and a rhythm section too. He also had two singers, one of whom was an artist that he had 'discovered' called Florence Rawlings.
He didn't rehearse the whole programme, just the items with the orchestra or the rhythm section. But it was a really great privilege to be allowed to be in on that.
The rehearsal finished at about 5.50pm and I wanted to go and thank him for allowing us to be there. He had already said that he would see us briefly before he had to get ready. So we walked down to the stage, the orchestra had left. He turned around and saw us and realised who we were. He came straight over and spoke to us for a few minutes. We thanked him for allowing us to be there, he was so lovely though and said it was no problem to him! It really did make our day though.
The evening performance was wonderful, one of those evenings that we will remember for a long time and a real honour to have been there for it! The surprises hadn't quite finished though!
I was getting the lift back down to the foyer, when I realised who was also waiting for the lift.......none other than Rolf Harris! What a gentleman. He was there with a lady, who he ushered into the lift and then he made sure that I got in OK. It was only a short ride down, but he treated us to some impromptu beat boxing! He stood and held the lift open and ushered me out. He held my hand and asked me if he could have a cuddle!! Imagine my surprise - he asked ME!! I said 'of course' & he said 'but don't tell everyone'!! It was the perfect end to a wonderful day!!
We got back to the Travelodge about 11.30pm and both of us just crashed. It had been a long, but really wonderful day. My surprise had worked and if he didn't know it before, Martin certainly knows now, just how special he is and how much he means to me.

We returned home on Tuesday and by Thursday I was exhausted. It really started to hit me just how fatigued I was. I then became full of frustration. Why is it that we can go and have a brilliant couple of days, but I have to pay for that afterwards? I really suffered very badly in the next 36hours.
I am in the process of changing my pain medication, again. I am continuing with the Targinact, but we are adding in a new drug called Oxcarbazepine. I really struggled yesterday though. I had gone to bed at 4pm on Thursday evening and although I woke up a couple of times and had a drink etc, I didn't get up properly until the following morning. It was quite a restless night though, because I was really struggling with spasms in my legs. I was so restless and couldn't keep my legs still. It was so frustrating and really driving me crazy.
I was so tired and in lots of pain. I didn't make for a happy Amelia!
To top it all, I then had a phone call yesterday morning, to say that my new wheelchair was being delivered. I SO didn't need that at that moment!!
Actually, the chair was delivered, while a friend was with me and that made it all the more bearable. I had shed my tears before it had arrived and then when it turned up, we were able to make light of it. The chair itself, is much better. It is obviously smaller - yay to me for losing weight!! But it is more sporty. It looks more 'cool'! This all sounds very silly, but I am having such a struggle in my own head, with the idea of using a chair, that anything I can do to make it easier for me, is a bonus. I can actually say now, that I can see myself using it. Which is a huge thing for me to say. But saying it and doing it are two entirely different things - I'll keep you posted!!
Anyway, after waiting for quite sometime, I eventually spoke to a GP yesterday, about the problems I was having. I couldn't explain the pain. It was horrendous. I'd say it was easily 11 out of 10. And the muscle spasms, were really freaking me out. I hadn't had it like that before. My legs were just uncontrollable. I just wanted to sleep, so that I wouldn't have to think about it or deal with it, but I couldn't even do that.
Anyway, the Doctor was lovely. She told me that I could continue taking the Targinact as well as the Oxcarbazepine, but she also suggested that I have some Diazepam, to help relax my legs and ease the spasms. I felt better once I had spoken to her, because at least I felt like we had something that we could do.
Unfortunately, when I went to pick up the prescription, it wasn't there! And by this time the surgery was shut........and it is a Bank Holiday weekend.........aaaagggggghhhhhhh!!
I rang the Out of Hours Doctor, who rang me back and I explained what had happened. He was great. He said he would do the Diazepam, but that he also would do a script for Baclofen and that he wants me to take it regularly. It is so great when you come across people who really know what they are doing. He faxed the prescriptions straight over to the chemist, Martin collected them and I went to sleep!!
I still woke up a couple of times, but thankfully the spasms had eased. I am continuing with the Baclofen and will see how that goes, but I have high hopes that it will really help the spasms and I also have the Diazepam as a back up too.

I am worn out now, so I won't do an update for Closer Than Ever just yet, but I will do one in the next day or two..........there may also be an audio file that you can hear too!!!

Wishing everyone a wonderful Bank Holiday Weekend!
Love & hugs

Thursday, 13 May 2010


Hi everyone!
Well, what a week! I appear to be having lots of appointments at the moment. That isn't a bad thing, but it is keeping me busy!!
I had an appointment with the pain clinic, yesterday. It was quite productive. I am to stay on the Targinact that I am currently on, but I can increase it from 25mg twice a day to 30mg and then up to 40mg twice a day. But he doesn't want me to go any higher than that. I am to try that for a week and then if there is no significant improvement, I am to go to my GP and ask about another drug that he is suggesting. I can't remember the name of it at this point!
I have an appointment to see my GP anyway, next week, so I can discuss it with her then.
I also have another appointment with my Occupational therapist, next week. She wants to explore doing some relaxation with me, which I think is a really good idea. I am struggling so badly, with pain and it waking me up at night, so I am not getting any decent night's sleep. I think if I can learn some relaxation techniques, then maybe I will be able to help myself get back to sleep, when & if the pain wakes me up. It's worth a try!!

It's now Saturday 15th May - My brother's birthday! Happy Birthday big brother - Love you!!
May is full of birthdays! Martin's was on the 6th, as well as my friend Claire's Dad - Happy birthday Ian! Then there is my brother's today and mine on Monday! My birthday is a special day though, as I know of four other people who were born on May 17th! Happy birthday to Jeane, Julia, Mike and Jill!!

I had my Tysabri infusion yesterday. It actually all went very smoothly. Having lost weight, my portacath is much more accessible. It is easier for the nurses to get the needle in, so much so, that they are going to use a smaller needle next time and so I am hoping that it won't hurt so much!!
We were finished by 1pm, which was good. I fell asleep on the way home......surprise, surprise!! I got home, had some lunch and then promptly fell asleep! I woke up about 6.30pm, had some dinner and then was in bed by 9pm! And I slept! Which made a pleasant change!!

It's now Wednesday 19th May!
I have had a busy few days. My birthday was lovely! I was a very spoilt girl. Martin treated me to lots of gifts and I felt very special! My friends made it really enjoyable too, we went out for dinner and ended up taking part in a pub quiz, which we went on to win!! We had a really good laugh and it was just what we needed!
I have had a couple of appointments again this week. I had one with my occupational therapist today and she went through a relaxation technique with me. It was amazing. I took to it really well, I found doing the breathing, quite easy. I guess my singing background is coming in handy!! I know it is something that I will need to practice. In fact there are a couple of other techniques
that they want me to try. But I do feel that if I practice, then I will be able to use this as a really useful tool in helping with my pain and sleep. It's a good feeling!!

Closer Than Ever rehearsals are going well. We have another one tomorrow night and we are hoping to have all of us at that one!! The thing I am panicking about at the moment, is that we won't sell any tickets!! I know we will and I know that people usually leave it until nearer the time, but I want to know now, that we will sell them all!! I want to be able to sell as many as possible, because we have two charities to share it between and I want to raise more than the last time we did it!! I know I set myself challenges, but only ones that I feel are achieveable!!

Anyway, I think the relaxation really did work today, as I feel exhausted now, so night night everyone. I hope you are all doing well. There is supposed to be good weather on it's way so I hope that is good news!


Thursday, 6 May 2010

Happy Birthday Martin!

I have to say a big HAPPY BIRTHDAY, to my adorable, wonderful husband, my best friend..............Martin I love you! We went our for drinks with our lovely friends, last night, it was a really good evening and I laughed like I haven't laughed for a long time, so thanks guys!

I have a couple of weeks of appointments coming up. I went and spoke to a psychologist yesterday, and despite my reservations, I actually found it quite helpful. I have spoken to someone in the past, but they have always come to my house. Yesterday I went to a medical centre to see someone and I felt a bit weird about that. But it turned out to be a better situation, because I could leave it all behind once the session was over. I have another appointment next week, so I'll let you know if it continues to be a help! I have another appointment at the pain clinic next week too. I am looking forward to being able to discuss my pain and where we go from here. I am still suffering. Since the weather has changed, I thought things might improve, but I am still struggling, just in different ways. I am currently on Oxycontin, which I think is helping..............just not enough! I am seeing someone at the Bladder and Bowel care unit. It's not something that I am happy talking about, but it is a part of MS and these barriers need to be broken down. We are dealing with my bowels first and then we will move onto the bladder - I am currently taking chocolate flavoured Movicol, oh how I love the stuff!! But I promised the nurse that I would persevere!! I am also going to be seeing my occupational therapist in a couple of weeks. She is fantastic and I feel I have someone who is really on my side. She is going to come and do some relaxation with me, to see if that will help me with the pain. She wants me to try and desensitize my pain too. I am a little apprehensive, but I will give anything a try!! And of course we have Closer Than Ever! Rehearsals are starting to pick up. We have one tonight and there will be a special birthday cake for my birthday boy!! I feel that things are starting to move forward with the concert. We are getting lots of posters and flyer's out there for advertising. I am going to contact the local papers and the radio too, so I'll keep you posted of any interviews!!

Anyway, I wish everyone a lovely weekend, we will be rehearsing for the concert and also a wedding that we are singing at, in a couple of weeks time! Singing, one of my favourite past times!!
Love & hugs XxXxX

Saturday, 1 May 2010

Rough time

Hi everyone,
I am so sorry that I haven't been on here for such a long time, I have been having a bit of a difficult time and I haven't felt physically or emotionally strong enough to write any posts.
I have been incredibly frustrated, but I am determined to continue writing again and getting the support and friendship that I have missed over the past weeks.

There hasn't been one single thing that has happened, but a combination of lots of things, that has caused me to find life a bit more difficult than usual!
I had my Tysabri number 10 which I found quite difficult because I had a headache that lasted for about 10 days. We don't think it was anything to do with the Tysabri and when I look back on it now, I think it was the start of a virus/cold/sinusitis that I came down with just before Easter. I was suffering with it for a couple of weeks and it really knocked me for six. It started as a cold which then went on to become sinusitis. I have never suffered with that before and it really wasn't pleasant!
I had to put off Tysabri number 11, because I really wasn't well enough to make the trip to Plymouth for the treatment. It was postponed for a week, but I still wasn't well enough, so I didn't go down until the following Friday, about 10 days late. I now have to change my day and go every four weeks from that Friday.
Interestingly though, I didn't really feel anything, even though I was late having my infusion. I didn't feel like I was desperate to have the infusion. Which makes me wonder whether the Tysabri is actually doing anything? I will still continue with it and give it more time, but it has put questions in my mind.
I have been struggling with pain quite badly again. I have changed my pain medication. I am no longer on Tramadol, but I am now taking Oxycontin. The change over was quite difficult. I had been taking Tramadol for quite some time and so it took a little while for my body to get used to not having it any more. The Oxycontin was a straight swap, but I had to start off on a low dose, so I have been struggling a lot to get it right. The Oxycontin is a 12 hour slow release tablet, but I am also able to take a lower dose tablet called Oxy Norm, in between the 12 hr release tablet, for break through pain, if I need it...........I have needed it!!
I have another appointment to see the pain clinic in mid May, so it will be good to go to that and see where I am with the pain management. I am having issues with waking up in the early hours of the morning, with severe pain in my hands. It is not a pleasant experience and is having a real impact on my fatigue too, because it is seriously disrupting my sleep patterns.
I am also now seeing a nurse at the Bladder & Bowel care, who was lovely and really made me feel at ease. She has decided to deal with the bowel issue before making a start on the bladder problem. It is another area where I feel there is finally a plan in place, to try and make the situation a little easier for me.

Our lifestyle change, where we have been making an effort to lose weight, is going really well. As of last Monday, I have lost 32 & 1/4lbs (2 stone, 4 & 1/4lbs) since January 4Th! I still have a long way to go, but it is a good feeling for what we have done so far. Martin has lost a stone and a half too. Together our house is over 50 lbs lighter since Christmas!! It has made a big difference to my portacath. It is a lot easier for the nurse to find now and the past two times that I have been for my infusion, she has been able to get the needle in first time. The portacath is much more prominent now and I wonder if I might have to have it moved - I don't even know if they will do that? I am certainly not going to stop losing weight, just because of the portacath though!!
I am now able to wear clothes that I have bought in the past & not ever been able to wear! I have still got a lot to lose, but we are doing it properly, we are eating healthily and it is coming off slowly, so we have a fighting chance at keeping it off!

We have eight weeks to go before we put on our fundraising concert - "Closer Than Ever".
We have started rehearsing now and it is going well! We are all enjoying what we are doing although there is a lot of hard work being done! We have had the poster/flyer designed and printed and I am busy sending out lots of letters to businesses to try and get some advertising to pay for the programme and raffle prizes for the night. There is a lot to be done to put on a show like this, it always seems like such a good idea when you are planning it with 18 months to go, but now there is only eight weeks, it is getting a little scary!!
It is giving me something to focus on though, which is essential for me. I like to have something to get my teeth into and it gives me a purpose, which is always a good thing.
I love this show, so much. It has amazing music, which feels really great to sing. I am really excited about doing it, but I am also terrified too. I am starting to question my confidence and whether I will be able to pull this off. That is where I am so grateful to our friends for being involved with us, they all help me and we work so well together - it is a real group effort!
If any of you have the opportunity to come and see this, then please do - it really is worth it!

Anyway, that is enough from me for now, but I promise, I won't leave it for so long for my next post!
I hope everyone is keeping well and looking forward to the brighter, warmer weather!