Thursday, 24 December 2009


Hi everyone,

I just want to wish everyone a wonderful christmas.
I really hope that everyone who has or is affected in some way by, Multiple Sclerosis, is able to have as stress free and as symptom free, Christmas as possible.

I am going to make a pledge, that I am going to get back to updating my blog on a far more regular basis next year.
I started this blog in February this year and I have been fortunate enough to have met some amazing people and forged some great friendships. I appreciate all the support, help and advice that you have all given me, over the past year and I look forward to taking these friendships forward to the New Year.

May 2010, be a happy and healthy one, for us all.

Lots of Love and big Christmas hugs to everyone,
From Amelia, Martin, Barnaby, Kit Kat!

Monday, 7 December 2009

"Open & Honest"

Hey look at this, two posts in as many days!!!
I want to ask for some advice. I probably already know the answer, but it doesn't hurt to ask anyway!
I am really struggling with a strange sensation all over my body. It feels like all my nerve endings are flickering. It is so hard to explain, but it feels to me like I have put my hand in an electric socket and all the nerves have gone haywire.
It is a sensation that I have had on the odd occasion over the years, but generally it would go away once I went to sleep and I would only feel it on the odd night. At the moment though, I seem to be feeling it night after night. I thought, a couple of weeks ago, that it might be subsiding, as it was getting less frequent but now it is doing it almost every night again.
I went to my GP, but she said she didn't really know where to go with it now. I have been quite unlucky with the pattern my MS has gone. I have experienced pain right from the start and it has been really hard to manage. My GP admits that I probably know more about the condition than she does! So she advised me to go back to my MS team, the MS nurses etc, and see what they suggest. My concern, is, that I told one of the nurses about this flickering of my nerves, last time I went to have my Tysabri infusion. But because it was starting to subside, the nurse said that it should just go away now. I was a little downhearted because I was afraid it may return and it has, so now what do I do?
I know that I really need to phone one of the MS nurses, but I guess I know that they will say that there isn't much they can do or suggest, so, I'm thinking, what is the point of bothering them? I don't like making a nuisance of myself either.
I'm also struggling with a couple of other symptoms at the moment. Fatigue is hitting me quite hard but also, I am having trouble with my water works.
This is quite hard to talk about and it feels weird to be talking about it on my blog, but when I set out to do this blog, I said I would be open and honest. Unfortunately bladder problems can be a big issue for people with MS, so I'm not going to pretend mine don't exist.
The problems I am having, are, that I need to go much more frequently and when I need to go, that usually means right then. I haven't had any proper accidents, but there have been some near misses! It also doesn't feel as though I am emptying my bladder fully, when I do go.
I have been tested for infection but it has come back all clear, so I believe that this is being caused by the MS.
When I spoke to my GP, she said, that if the results were that there was no infection, then she would look at getting an ultra sound done, so that they can see if I am emptying my bladder or not. If not, she said there were things that could be done, but that we would cross that bridge when and if we come to it!
When I put these things together, I do wonder whether it equals a relapse, but I don't even want to go down that road!!
Am I burying my head in the sand.............maybe, but I never know when things are different and I need to tell someone or when things are just due to a change in the weather or something like that!
When you have symptoms, like pain, day in and day out, I believe that it impairs your judgement after a while.

On a lighter note, I had to post this photo, it had me in stitches!
It is of Kit Kat, our little baby girl. She had jumped into an empty box that I had put on top of our stove, and she looked really cute, so I decided to take a photo. I got a couple of her lying in the box, but then she sat up and just as I was taking the photo, she yawned - priceless eh?!!


Sunday, 6 December 2009

Cars, Singing and CHRISTMAS!!

Yet again, I feel the need to apologise for the lack of posts over the last couple of weeks! I just don't know where the time is going at the moment.
It's not that I am really busy, but I think Martin and I are taking time to get used to our 'new' life.
That's not a bad thing at all! We are really enjoying things now. I certainly feel much less stressed and a lot more calm since Martin finished work. It's so nice to have him around to help me with things. Especially things like having a shower, it makes such a difference not to have to plan it all around when he will be here because of work! I also feel that we are making progress with the house. There are lots of plans for after Christmas, the spare room is such an embarrassment right now, so that is top of the list! But it is good to be able to make those plans and know that we will be able to follow through on it, instead of just hoping we might find the time some day!
We have been very lucky, because we have been able to sort out the financial side of things relatively quickly. We were both under the impression that it was going to be after Christmas before we had it all sorted out, but we are well on the way to being there now. It's not all done but it's a lot further along than we expected, which is a relief and going to make Christmas a lot less stressful!
All in all, I think I can say from the both of us, that this has been the best decision we could have made.
So I just want to say a big thank you to Martin, again, for giving up his job for me. I feel very special & very lucky!

As I have said, it has been a busy couple of weeks and the build up to Christmas is always an exciting one for us - we LOVE Christmas!
One exciting thing we have done, is order our new car! I finally made a decision and we have gone for the Nissan Note, Acenta 1.6 litre automatic. We went back to the Nissan dealership and I was able to see the car again. I got in and out again and just had a quick look over it and it just confirmed for me that we were making the right decision. So we put the order through!
It is so much fun to be able to order a brand new car, something I never thought I would be able to do!

I have ordered the adaptions for it too. I am having the push/pull brake, accelerator and the quick release steering peg. So I drive with my hands. These are the two adaptions I have had every time I have had a car on the motability scheme. I can't believe that we are onto our third car! We got the first one in 2004 and it is funny how much has changed on the scheme since then.
The first time, we had to pay for the adaptions and for them to be fitted, but now, the ones that I have, I don't have to pay for. We do have to pay a small advance payment, but that is our choice because of the car we have chosen. But when you work out the advance payment over three years, it's peanuts to pay for a brand new car, so I'm not complaining about that!
One new thing, this time, was that we were able to choose our number plate, from a small list that they had available. It was very funny, because I let Martin choose which one to go for. I am quite good at remembering the number plate, so I thought if he chose it, then it might help him remember it! The one he went for has NXO as the last letters. It doesn't stand out on it's own, but I laughed my socks off when I realised how he had chosen that one - he looked for the Star Trek ship's number. We couldn't get NCC, which is the new Enterprise, but he could get NXO, which NX-O1 is the original Enterprise number - priceless eh?!!
We should be able to have the car on our change over date, but it may be a week later, depending on when the car arrives and when they can get the adaptions fitted. It really is amazing, they make everything so easy for you. Once the new car is ready, all you have to do is take the old car to the new dealership, where they will take it in and deal with it going back to motability. And once you have done the paperwork, you drive out with the new car, it's as easy as that!
So roll on 20th January 2010!

Another thing that has been happening, is that I am singing again! The group that Martin and I sing in, How Apt, has got back together again, after a little break. We are working on some Christmas carols and also going over the pieces that we have done before and adding more stuff to that. A lot of promotional information has been sent out to lots of hotels, all over the local area. We have one booking for Christmas Eve, but unfortunately it will be without Martin and I, as we are going down to Bournemouth for Christmas! But fingers crossed, there will be other bookings too. Check us out at
It feels good to be singing again. Each time I come back to it, I realise just how important it is to me, and how much I really enjoy it.
We have also had our first get together, for Closer Than Ever, which is the concert that Martin and I have organised for next June, to raise money for the MS Society, South Devon Branch and Rowcroft.
"Closer Than Ever" by Maltby & Shire is a concert that we put on in 2004. We had four singers, a pianist and a bass player and we raised £1000 for the MS society. This time we are using eight singers, a pianist, bass player and drums and we plan to raise even more money this time.
It was so good to get together and just sing through some of the material again. We just love singing this music, it is fabulous. Every song in it, is a great song.
This is the link to the information about the concert, scroll down to the last item in the programme and that is us!
I also feel quite humbled. I have these friends, who are willing to give up their time and to put in all the effort to perform this, because I have MS and they want to help.
How lucky am I?

Sunday, 22 November 2009

Tysabri Number Six

This week was Tysabri number six.
I am pleased to report that it went better than it did the last time, although it didn't go without a hitch............unfortunately!
I arrived at my allotted time, but had to wait, which is becoming very normal!
There are a group of about six of us, who all go down to Plymouth on the same day. The difference between myself and the others, is that because I have had the portacath fitted, I have to wait for a registered nurse to be able to sort out my portacath, where as the others can get their cannula's done and away they go with their infusions. I'm not complaining though, because I am becoming more and more convinced that this was the right way to go.
Emla cream is a magic cream that nurses put on the back of children's hands, when they have to put needles in, so of course, I have asked to have this cream put on my scar before they put they needle in! It does work though! I realise that I have altered sensations all over my body, but it always surprises me, all the different ways it affects me.
Unfortunately, this time, it took two attempts to get the needle into the port. The first time, it didn't go in properly and when the nurse tried to flush it, nothing happened. So she took that needle out and tried again. This time it went straight in, and hit the back of the port. It flushed well, so she hooked up the infusion. I lay back straight away, this time, because last time, when the infusion went in, it hurt like hell. I really thought they might have to stop it last time, but it didn't happen this time, so I think I may have sorted that out.
The main issue I had this time, was that it virtually knocked me out, almost as soon as it was administered. I really struggled to keep my eyes open. It was very strange. But the good thing about that, was that the time went very quickly!
Once it was finished, Martin was able to drive me home, where, I just crashed out for the rest of the day.
I still can't say whether it is having any affect or not. But I need to keep giving it a chance!
I am still experiencing this horrible flickering of my nerves all over my body. It is such a strange sensation and one that really causes me quite a lot of pain. It is very disturbing.

Some good news though, I have finally got an occupational therapy appointment on Wednesday morning! The lady is coming to the house and hopefully, we will be able to talk about my need to have a wheelchair, but I am also going to talk to her about our bathroom. I want to see whether we will be able to get our bath taken out and a double shower put in, so that I can put a shower chair in there and I won't be so reliant on Martin to help me with a shower. That isn't to say I wouldn't still need his help with washing my hair etc, but it would make me feel just a little more independent.
I really want to sort out a wheelchair though, because I think it would just take the pressure off me. I still think I would push myself a lot to walk places, but when I am in situations where there is a lot of walking involved, it will give me the choice. Then it's up to me to make it eh?!!

So, I am looking at the week ahead. I can't believe we are into the last week of November.
It will be December very soon, which means CHRISTMAS!!
Martin and I get very excited about Christmas! It is such an enjoyable time of year, and we do our best to enjoy it as much as possible.
I cannot believe that another year is nearly passed and when I look back over the passed year and see how much as changed for Martin and I, it is quite bizarre. But I would like to think that we are in a better place now than we were this time last year - long may it continue!

Saturday, 14 November 2009

Another week goes by.......

And it has been quite a mix of emotions.
Last weekend was a really difficult one for me.
I struggled really badly with MS symptoms. The nerve endings, all over my body, went haywire. It felt as though I had put my hand in an electric socket - not that I know what that should feel like. The nerves seemed to be flickering all over my body.
It kept me awake on Friday night. I went to bed, but just couldn't sleep because of the weird sensations and it also felt oddly painful. I experience so much pain, in so many different ways, that it is difficult, sometimes, to work out if it is pain or not. But this was.
I got up, because there was just no point lying there, getting more and more frustrated. I eventually went back to bed at about 4am and got a couple of hours sleep, only to get up again, when I woke up about 6.30am. The trouble is, when you have such a disrupted night's sleep, it has a knock on affect. It did for me, for the rest of the week.
This sensation that I was experiencing, I have had before, but in the past I have been able to go to sleep and it's gone in the morning.
It's been different this time. It started on Friday evening, but after a troubled night, I then experienced it again on Saturday night. And I have felt it on and off all through the week. It hasn't stopped either.
The pain level in my right hand has increased slightly too. Does this mean I'm having a relapse? I have no idea and I have been reluctant to contact anyone, partly because I have Tysabri number six on Tuesday of next week, so I will probably see an MS nurse while I am there. I also haven't contacted anyone, because I never know whether it's a relapse or not, when it's not a drastic physical change. I feel that maybe I'm just making a fuss - please don't shout at me, everyone!
The other thing that has made me think possible relapse, is a change in my waterworks. I apologise to anyone who feels uncomfortable reading about me and my bladder, but it is a common symptom of MS, so I don't feel I should hide it.
I am finding that I am having to go far more frequently and I am never convinced that I have emptied my bladder when I have been. Over the years of my diagnosis, I have suffered with hesitancy, which I do still get, but I have noticed a real increase in the amount of times I need to go. It is making me aware of how much I can drink, before I am going to need to go again. It isn't something that is having a drastic impact on my life, at the moment and I hope it won't for some time to come, but it is something that I need to acknowledge and I guess I do need to let my GP, or the MS nurse know about this change.
As I have said, I have Tysabri number six on Tuesday. I can't believe just how quickly it comes round every month. I still don't feel that I can comment on whether it is having any affect on me. But after only five infusions, I didn't really expect to. I have no intentions of coming off it, at this point in time. I have been through too much, what with the veins and the portacath, so I definitely want to give this treatment a decent chance.
It will be my second infusion with the portacath, so I will let you know how it all goes. I still feel quite freaked out sometimes, when I feel it under my skin! But I just remind myself, that it is serving a purpose and stopping me from having to go through vein hell!

I can say, that we have chosen the car that we are going to go with next! Hooray!
It has been quite a difficult decision this time. Both times before, we had a clear idea of which car we were going to go with, but this time, we really didn't know.
We test drove the Citroen C3 Picasso first. It is a lovely car to look at. It ticked the box for getting in and out and it appeared to have a fair amount of space. It comes as a diesel too, so the fuel consumption is quite impressive. On the down side, it only comes as a manual though, so I would have to give up driving. Martin actually drove it and felt it was a nice car to drive. I had almost decided, in my mind, that this was the car for us. But before we made the decision, we both knew we had to go and test drive the Nissan Note, which was the other car we had short listed.
We were shown around a model in the showroom, which was the exact model we would go for, if we decided on this car. I have to admit, it surprised me quite a bit. From the outside, it doesn't look like it should have that much space inside, but they have designed it very well. It has a split level boot, which the Citroen has. The back seats go down, which the Citroen's do. But the back seats are also on a runner, so you can move it forward or back as you need it. The Citroen doesn't have this.
It has cubby holes all over the car, which again, the Citroen does, but the Nissan has them in really sensible places. There is a cool box in the glove box, when the air conditioning is on. You can lift the passenger seat up to expose another storage area. There are fold away tables, with cup holders, for the back seats. And the bit that clinches it for Martin is, there is a decent audio system already fitted!
Martin drove this one, as well and said that this one felt a little more stable to drive. It comes as an automatic, so I will be able to drive it and it is a petrol engine. This means that the fuel consumption won't be as good as the Citroen. And this is a point that has had me hesitating. But the Nissan has a much better mpg, than our PT Cruiser has, so it will be an improvement no matter what.
The other thing to consider, was, that the Citroen comes with a nil advance payment, but the Nissan model of comparison, will cost us £199.
So after comparing the two models and ultimately, me deciding whether I still want to drive, which I have decided I do, we have chosen the Nissan Note. It will be £199 well spent - I hope! Yay!

Before I finish, I would like to just ask people to send a thought and perhaps a prayer, to three people who are struggling for their lives right now.
I have mentioned, in one of my past posts, about a seventeen year old German boy, called Dustin. He has had numerous heart surgeries, been in a coma and has had to deal with more in his young years, than most of us could imagine. He went to America, to go on a new therapy, in the hope that it would extend his life expectancy, but sadly, it doesn't seem to be working and he has been told he only has a couple of weeks to live.
If anyone would like to read his blog, the link is
He is an inspiration and also an amazing artist, just take a look at the drawing on his last post.
God bless you, Dustin.
And then, there are two people, in Plymouth, who are currently fighting for their lives. Lynsey and David. Lynsey is a friend of ours, who we know through the local theatre scene. They had a car crash last Sunday, which has sent shock waves through the bay. There is a huge support network, which has been set up on Facebook, and there are a lot of people sending positive thoughts and praying for both of them.
Please spare a thought for them, if you would.


Friday, 6 November 2009

Choosing Car Number 3!

Oh, I really wish I could get myself organised and write more posts, more often on my blog!!

Anyway, here I am and another week has gone by.
I am pleased to say that Martin and I have not scratched each others eyes out, by being around each other all day!
In fact........... and I apologise for being soppy..........actually, no I don't - but it just feels even more special to be able to spend time with him and to get things done too!
The first week was taken up with getting applications done for the relevant benefits to apply for. We knew it was going to be a lot of paperwork, but wow, I feel like we have used up a tree's worth of paper! Why do they insist on asking the same questions, over and over, just in several different ways? It is very frustrating!!
I finally feel like we are achieving things around the house. The lounge is looking a lot more organised and far tidier!
We have a lot of pictures and Disney art, that were taken off the walls, so that decorating could be done. They haven't made it back on the walls for well over a year, but finally, we are starting to get them put back up - it feels so satisfying!

The one thing we have been able to do, without trying to squeeze it in on a weekend, is go and test drive some cars.
I am lucky enough to qualify for a car on the Motability scheme.
I thought they were mad, when I was told that I would be able to get a brand new car, to have for three years, after which, I could change it again for another brand new car! I had never had a new car in my life!
This was back in 2004, when I first qualified for the Higher mobility rate on my DLA (Disability Living Allowance).
The first car we went for was a Peugeot 206. At that point, we didn't really think practically, we just went for what we wanted!
I was also astounded, that I could get it adapted, for me to drive it with hand controls.
Drive, with my hands, were they mad?!
It totally changed my life. I hadn't driven for about six months as I just didn't trust my legs, and I knew I would never forgive myself, if anything happened, just because I wanted to drive.
I was told about hand controls, and I was given an assessment, to see what I would need. I was just blown away - I would get my independence back!
I have a push/pull accelerator and brake, which fits under the steering wheel and attaches to the pedals. It has to be an automatic car for the attachments to work. I also have a steering peg, that fits on the steering wheel, to allow me to steer with one hand! But the pedals are still there, so Martin can drive it with his feet, as a normal car.
After a couple of years of driving the Peugeot, things had got a little more difficult for me. By the end of the three years, I was finding it really difficult to get in and out of the car. And it wasn't really big enough, if we wanted to fit any equipment in it, like a wheelchair or a scooter. So a few months before the contract was up, we started looking at what to get next. But this time, we did look around and tried to think practically about it.
For car number two, we decided to go for a Chrysler PT Cruiser. Wow, what a car! We did test drive the Vauxhall Astra too, but there was no contest!
Again it was fitted with hand controls. I felt like a kid with a new toy! It was so much easier to get in and out of and there was so much space in it. It had a lot more room in the back seat area, so I felt like I could ride in the back, should I need to.
This car has been a total joy to own, but the downside to this car has been the fuel consumption. We knew before we took it, that it would be a thirsty car, after all, it has a 2.4 litre engine! But with the price of petrol increasing like it has and with our circumstances changing, financially, it has not been the cheapest car to run.
So now, here we are again, getting ready to choose car number three!
Where as with the previous two, we had a clear idea of what we wanted, this time we didn't. I had been looking around at different models for a while, but there was no front runner. Then I came across the Nissan Note. I liked the look of it, it has a quirkiness about it! I looked it up on the motability website, to find out if we could get one. They have an automatic model and the advance payment isn't too bad.
Then I noticed an advert for a Citreon C3 Picasso. I loved the look of it! Again, I looked on the motability website. We could get this model for a nil advance payment, but it doesn't come as an automatic. I thought about it for awhile and discussed it with Martin. Did I need to drive? I was considering giving up driving. Martin is now my full time carer and therefore will be around to drive me, and since my last relapse, my right hand has not been the same. The sensations in that hand are constantly altered and there is always some degree of pain. I can still drive, but not without discomfort.
I wasn't convinced either way.
So we went to look at the Citreon first. It was brilliant. It was easy to get in and out of, there is a lot of space in the boot and the back seat area. And it comes as a diesel manual, so the fuel consumption is great. Martin test drove it and felt quite comfortable doing so.
We both felt that this could be the car for us. BUT, we still wanted to test drive the Nissan, just to be sure and I needed to be sure about giving up driving.
We went to see the Nissan Note. And I have to say, I was pleasantly surprised. It is quite deceptive, because there is a lot more room inside, than it looks like there should be from the outside! Again it is easy to get in and out of and it feels really comfortable. Martin test drove it and he felt it was a bit more stable to drive. I certainly felt good in the passenger seat.
It comes as an automatic, so they can get the hand controls fitted and I would be able to drive it. The fuel consumption isn't as good as the Citreon, because it is an automatic and it is petrol, but it is still better than the PT!
So we are now left with a dilemma!! Do we go for a manual car that is diesel so has good fuel consumption, but that I can't drive, OR, do we go for the automatic car, that has lots of space and I will be able to drive, but the fuel consumption isn't so good?
We have still to make our decision, so watch this space!!!!

Wednesday, 28 October 2009

Our New Life Begins!

Saturday 24th October - the day our new life officially began!
Martin finished work on the Friday and that was that!
It was a strange week, because I had my 5th Tysabri infusion on the Tuesday and what a day that turned out to be!
It was my first infusion, where they were going to be using my portacath from scratch. I was a little apprehensive, but I wasn't going to stress myself out. Unfortunately, what did stress me out, was the fact that my appointment at the hospital was at 9.30am, the same as it is every four weeks. But we arrived there, to be met with chaos and to be asked if we could wait in the waiting area outside the ward. There ended up being four of us waiting for our infusions, sat outside in the waiting area.
Unfortunately, there had been a problem with beds over the previous weekend, which had had a knock on affect for everyone else. It couldn't be helped, but it was very frustrating. Especially as all four of us travel about 45 miles or so to get to the hospital in Plymouth, because they can't administer it in Torbay..................yet!!
In fact the majority of us, who are on Tysabri down here, are from the Teignbridge/Torbay area, rather than from Plymouth - daft eh?!
Anyway, at about 12.30pm, I was called through, as they had a recliner chair for me. But the next problem was, that I needed a registered nurse to be able to deal with my portacath. She didn't come along until about 2pm. I then had some cream put on, to numb the area for me. Then about 20 minutes later, the nurse came back. She popped a needle into the port and then flushed it and made sure it was working. Following all that, the infusion was started at 3pm!
I struggled with it to begin with, because it was so painful as it was going through. The pain spread right around the port and up into my neck. I thought I might have to stop it, which immediately upset me, because my first thought was that they would take it out and I just couldn't bare that. Anyway, I thought about how I was positioned when they administered the infusion straight after I had had the portacath fitted. I realised that I was lying down. So the chair was reclined and as the infusion progressed, so the pain subsided.
I was kept for my usual hour, after the infusion was complete, but at 5pm, my day at the hospital was complete and we were allowed to go home!
My Father, who had driven me down that day, had offered to give a fellow MSer a lift home, so we got to the car, we all piled in and I promptly fell asleep. This is fairly typical after an infusion, as the Tysabri tends to knock me out for about 24hrs after the infusion.
But I had successfully managed to get through the infusion, using my portacath. So fingers crossed, it will be less and less painful as we go along with it - only time will tell!!

Once that drama was finished with, we then got to Friday. I must admit, it was strange to wave Martin off for his last day at work. As I know it was strange for him to think he would be driving a bus for the last time! The whole day was quite surreal, because it was the same as any other day and yet it wasn't for us!
The weekend was pretty typical and nothing special. It hadn't really hit us at that point.
The week so far has been filled with trying to get forms to the correct places, filled out correctly, so that we can start getting the benefits that we are entitled to.
It is like wading through thick mud. And the most frustrating part of it, was the fact that we couldn't do anything, until Martin had finished work. We wanted to try and get it all processed, so that the money could start coming through once Martin had finished, but NO! We have to live on nothing for about six weeks or more, while they decide whether we are allowed to have the money or not!! You see our frustration!
But I will say this. Already I am feeling more relaxed. It is wonderful to have Martin around, making sure I am OK and helping me with all those "little" things that I have struggled with for so long. The house is already feeling tidier and we haven't started sorting out all the rooms properly yet. (Or got to the list that I have secretly been making - women are so good at making lists!) But the fact that Martin is here to be able to keep on top of it, feels wonderful.
We are eating dinner at a sensible time, instead of any time after 7.30pm, because he wouldn't get home until then when he was working.
It is already feeling so good.
Long may it continue!

Monday, 19 October 2009

So much to tell you!

OK, so there has been a lot happening in my life, over the past couple of months.
I started on Tysabri, I have given up work, I have had a portacath fitted and the one that I haven't told you about, is that Martin is giving up his job, to become my full time carer.

It has been a really difficult few months, I can tell you that, but when you come to a point in your life where there is a junction and you can go one way or the other, after a lot of discussions, this just seems to be the correct path to take.
It is not something that anyone can just decide to do, and I have to admit, we didn't realise how complicated it would be.
We had to be sure that this was what we both wanted. And to be absolutely honest, it is. It has come down to quality of life.
I had to be able to admit that I was struggling. I was struggling with work, it was causing too much stress, so that had to go. But then I am also struggling with things around the house. And that has been the difficult thing to admit. The fact that I am not able to do the washing up without pain, or do the cooking and cleaning. I am 36 years old, I shouldn't need help around the house. But the hard facts are, that I do.
I was also getting the portacath fitted and I need to go down to the hospital every four weeks for an infusion, so who did I want to help me with all of this. There was only one answer - Martin.
But Martin was already doing a full time job and he was also trying to do all the necessary things to help me around the house. He just couldn't do both.
The turning point came, when Martin had a week off work. That week was wonderful. We were both really chilled. I felt that he was very attentive to my needs, the housework was all done and we just felt really calm.
The solution to our problem seemed clear to us, but we had to see whether it was possible.
The first thing we did was to contact the CAB - Citizens Advice - because we knew that if they didn't have the answers, they would know someone who did! As it happens, in this area, there was an MS advocacy officer. She was able to come out to our house, go through everything we wanted to achieve and then tell us what was available to us.
After a lot of facts and figures whirling around, we had to decide whether it was something we could manage - financially, I mean. We both agreed that there were things that we could do without, so we worked it out accordingly.
We know that it won't be easy. It is a life changing decision and one that we will adapt to. But the important thing is that it is what we both want.
So Martin finishes work on Friday!
I am excited but also a little apprehensive. I am only apprehensive because we can't sort out the financial side until Martin finishes work. But once that is all sorted out, then I know we will be fine.
I had to be sure in my own mind, that this was what Martin wanted and that he wasn't doing it because he felt he had to. I guess I didn't want him to resent me a few years down the line, because the direction our life has gone, has been dictated by the MS. But when we discussed it, we both realised that this is our way of taking back some of the control. We are able to decide what and when and how, before we get to the point where the MS forces us to make these decisions.
I am so lucky. I have a man in my life, that is willing to do this for me.
Thank you Martin.
So Saturday 24th October 2009, is the start of our new life - bring it on!

The other thing I wanted to talk about today, is my portacath.
I have my fifth Tysabri infusion tomorrow and it will be the first time that we will be doing the whole procedure of using the port.
Although I have had some problems with the wound on my neck, the actual port wound has healed very well. I have a scar above my right breast, but that will fade in time, I am sure. I also have a scar on my neck, which I think will take longer to fade, but again, I think it will in time.
The one thing about it all though, was when we took the dressing off the port area and left it off, I got quite freaked out. I suddenly realised that someone had put a knife to me and planted something in my body. And I could feel it! It is getting easier to deal with but I would be lying if I said I wasn't scared about tomorrow.
I am terrified!
I know, by this time tomorrow, when the infusion is all done, I will wonder what I was worried about, but for now, I am scared.
I know that they will feel around for where it is, they will then pop a needle in - that is the bit I am freaking about! They will flush it etc and once that is all done, they will hook me up to the infusion and away we go.
I know that this will be far less stressful, than them having to cannulate me. That is why I have had this done. So I know that once tomorrow is done and I have got the first experience out of the way, I will be fine. It will be so much easier, for everyone involved.
I know all this, but I am still terrified!
So wish me luck!

Thursday, 8 October 2009


I have today found out that I have won some awards from my dear friend, Herrad.
She is the most inspirational person that I have ever had the privilege to talk to and I feel quite humbled that she has past these two awards on to me!

If you haven't come across her amazing blog yet, the address is

Herrad and her partner, Richie, deal with more in life than anyone of us should ever have to deal with. But they both do so with poise and dignity and I feel truly blessed to have come across them both in the blogging world.

I will, of course, be passing these awards on to people, but I would like some time to catch up on some of my reading first.
Although there are a couple of people, whose blogs immediately spring to mind and so I would like to pass these awards to them straight away.

Living with Multiple Sclerosis is a daily battle. MS is the invisible disease or at least for most people. We fight many emotional and physical symptoms all the time. We need as much support as we can get. However due to the invisible symptoms we tend to not get a lot of support and that brings on more emotional stress which in return brings on more MS symptoms. A Vicious cycle.

Tara's blog is always so bright and sunny and she is constantly trying to educate people about MS. Good on you Tara, and keep at it!

Nat's blog is such a diverse blog. She talks about so many different things that it is great to pop along and see what is on her mind each day! Her wonderful photos of pond life are fabulous!

Lots of love to all the bloggers out there.
It is such a great support network. I am so glad that I decided to start mine, I have found it therapeutic for myself, to actually get things off my chest, but then to get the responses and support from people out there who really care about what is going on in my life and the fact that we are going through it together and we are not alone, is something that I am very proud to be a part of.
Long may it continue!

Tuesday, 6 October 2009

My Work Story!

Sadly, for me, on Tuesday 15th September 2009, I handed in my notice at work.
I am no longer an employee at Asda.
It was a really hard decision, but one that I needed to make, for my own health.

Here is my work story!

I was diagnosed with MS in 2002 and at that point, I was working in an office doing order processing.
From the time I had my tests and all the doubt and uncertainty that went with that, I didn't work for them for almost twelve months. I then decided that it was time for me to try and return. I knew I needed to take it slowly, so I agreed to just go back and do three mornings a week for about 3 hours at a time. I was able to do it for a little while but then about two months later, I had a big relapse. This was when my legs went and I ended up in a rehabilitation centre for about six weeks. I quickly realised that I might be putting too much pressure on myself and so I cut it down again to a couple of hours at a time for only a couple of days a week.
I remember having an appointment with my consultant and asking him what I should do about work. He was not too impressed that I was back at work, no matter how little the hours were. He wrote a letter to my work explaining that, as we hadn't got things under control at that point, it was unrealistic to think I would be back at work within the next twelve months.
As you can imagine, that went down well!!
I was referred to the company occupational health officer, who came and saw me at my house. I remember the meeting, because I have always remembered something he said to me.
He said that the only predictable thing about Multiple Sclerosis was it's unpredictability!
That has always stayed with me because it rings so true!
Anyway, it was discussed that maybe I should think about leaving. Giving myself time to concentrate on me and the MS and also allowing myself time to get my head around it all. I also realised that I was trying to go back to a job that I had done when I was fully fit. It was really hard to put that out of my mind.
So I left my job in the office in 2003.
I spent a lot of time trying to get my head around everything, but really, do we ever get our heads around it?
Time went by. In 2004, Martin and I put on our first concert, raising money for MS. That was something that would take quite a bit of time!

Eventually by about Easter of 2006, I was starting to get itchy feet. I talked to Martin about the fact that I really felt that I wanted to try and get a job again. He was fairly reluctant about the idea to begin with. He felt that, because I had tried going back to my office job and it hadn't worked out, he was concerned that I would be disappointed if it didn't work out again. A fair point, but I just needed to try. I needed to have a purpose. I needed to get out of the house and be in a situation where I had responsibilities again.
There was a new Asda supermarket being built in my town and I decided that I would apply for a job there, as I knew they would be hiring lots of people.
Asda have quite a tough hiring procedure. You have to pass the application form, then you have to go and take part in a group session and then you have a one to one interview.
I was so pleased when I got through all those processes and was hired as a checkout operator.
I was totally upfront and honest about the MS - it's a bit hard to hide the crutches! They didn't have a problem with the fact that I would only be able to manage on the checkouts and of course, it was a tick for them, to be able to hire a disabled person.
I started there on July 12th 2006. I was so chuffed!
I was able, over time to adjust my rota so that I was comfortable with the hours I was doing. I started off doing 14 hours a week, but by the time I had finished I was doing just under 12 hours a week. And my shift times had changed over the three years too.
When I started, I had big ideas about maybe eventually being able to go full time. It quickly became apparent that I was not going to manage that. So I lowered my sights!!
I did think that I would be employed there for a good few years, but that was not meant to be either.
This year has been a difficult one, as far as the MS is concerned. I had two relapses within the space of four months. The last one, I am still dealing with the symptoms, which include numbness down my right arm and hand, along with lots of pain.
Because of the latest relapse, which happened in July, I had been off work from the middle of July anyway. I really wasn't able to manage my duties, even the office duties, which I tried to do, when I attempted to go in for a shift in August.
The problem was, that I was getting myself very stressed about not being at work. I felt I was letting everyone at work down, I was letting Martin down and I was letting myself down. Of course, no-one else thought that, but I couldn't help thinking it. And it was really stressing me out.
I sat down with Martin and we talked about it. We came to the conclusion, that I really needed to put a stop to the stress, because it was just aggravating my symptoms.
So the decision was made. I took my resignation letter into work and saw the people manager, who was so lovely to me. She wanted to give the letter back to me and try and sort out putting me on a different contract, so that I could manage it a little better. I was very flattered, but as I said to her, all the time I have the possibility of a job to go to, then I am going to be pressurizing myself to get up and go to that job. I just couldn't do it any more. She has said that there will always be a job for me though, which is a lovely way to leave.
I was so upset at having to leave because it meant a lot to me to be able to go and work with a bunch of people I really enjoyed working with. But, since I have made that decision and I have left, I do feel as though it is one less stressful thing to have to deal with.
It is definitely the right decision for Martin & I, so now I just need to get on with the rest of my life!!

Monday, 5 October 2009

It's time for a Portacath catch up!

I am so sorry that, once again, I have neglected my blog :(
I have had quite a lot going on over the last few weeks and lots to tell you about.
Firstly, let me update you all on the portacath situation.
I went down to Derriford Hospital on Tuesday 22nd September. I had been told to go in at my usual time of 9.30 am, but that my 4th Tysabri infusion wouldn't be done until the portacath had been fitted, which would be in the afternoon. What they hadn't told me and I hadn't even given it a thought, was that there was a likelihood that I would be kept in overnight! My Dad had taken me in, so he came back home and Martin was able to put a few things together for me and then come down and see me in the evening.
It was a good job that I was there early, because by about 11.30 am, the porters came to take me down to the radiology department. I didn't really know what was going to happen or how the procedure would be done, which was probably a good thing, because I didn't have time to worry about it!
The consultant radiologist, who was performing the procedure, came and spoke to me and explained that I would be given a sedative, I would still be aware of what was going on but I also wouldn't, if that makes sense!! He said that they would be putting the portacath in the right side of my chest. They would have to make an incision just below my neck and then also further down, about half way between my collar bone and my breast, where the portacath would be positioned.
What I hadn't realised, was that it would be completely under the skin. There wouldn't be any valve or access point left out on the skin. That means that it can't be seen at all, only the scars from the wounds. It was explained to me, that when I go for my infusions, the nurse will feel for the port and when they find it, they will just pop a needle into it - just like a pin prick - and then they will be able to flush it etc and then hook up the infusion. This is great news because I don't have to worry about anything. The portacath itself, only needs flushing every month, and because I have my infusion every four weeks, the nurses will do it for me each time.
The other thing that I didn't realise is, that not only can they put the infusion in through it, they can also draw back blood from it too. This means that I should never have to have a nurse search for my veins again!
So back to the day! After the consultant had talked to me and I had signed the consent, I was then taken into the x-ray room, where there were a couple of nurses and everything was set up. I can't lie, by this time, I was getting pretty scared! They started by giving me the sedative, which they did by putting it straight into the vein in my neck. It hurt like hell and I burst into tears. I am such a big baby!!
They then numbed the whole area and I really couldn't feel anything. I had a nurse holding my hand, just to reassure me, so I shut my eyes and just let them get on with it! I don't think I fell asleep, because I remember people talking around me and there were a couple of times when I felt things going on, but one of the nurses said that I had slept through it!
Anyway, before I knew it, it was all over and I was being transferred back onto my bed. I was taken back outside, where they explained what had been done, but to be honest with you, I was feeling quite out of it at this point. I was told that I should have at least four hours of bed rest. I was taken back onto the ward & after a bit of fussing, I really did fall asleep!
I woke up again about three hours later, when I was able to speak to Martin and get him organised to come down and see me.
There was a bit of confusion, because the nurses weren't sure whether I needed a chest X-ray to confirm that it was in the correct place. But when they contacted the consultant, they were quickly told that he was a radiologist and so therefore was absolutely sure it had been put in the right place!
So all that was left now, was for me to have the Tysabri infusion and this was to be done through the new port! It has to be hooked up by a registered nurse so when she was available, she came along and hooked me up. It was so good not to have to be prodded and poked to find a vein for access. And I couldn't feel it going in at all. This was going to make life so much easier for me.
Martin arrived whilst I was having the infusion and it was so good to see him. I was just disappointed that they wanted me to stay in, after all everything had been done. The portacath was in, the infusion had been done, but they wanted me to stay so that they could keep an eye on me. Looking back on it, I know they were right to do that, even if it did mean that I didn't get much sleep!
I had been given my instructions on looking after the wounds. I had the portacath wound and I also had the wound just under my neck, where the stitches were. They were dissolvable stitches so I didn't have to worry about getting them taken out! I had been very sore for a few days after I had come home. Unfortunately, by the first weekend after the procedure, the stitches wound was really hurting and it appeared to be weeping. I was given a strong course of antibiotics and told to keep an eye on it. The last thing I needed was for the portacath to get infected, because that would mean them having to take it out again.
My Dad was changing the dressings for me and I was also popping to various nurses to get it checked too. I had a swab taken at one point, but the results of that said there was no infection. This, of course, was good news, but it doesn't explain why the wound has been so sore for nearly two weeks now and though that soreness is a 100% better, the wound itself is still weeping. I am leaving it open during the day and dressing it overnight from today, so hopefully that will stop the weeping and help it heal properly.
So there you have it. I now have a portacath fitted in my chest, I can't feel it and I can't see it - apart from the wounds - so that is great news for me!

Monday, 21 September 2009


............... is the day for my fourth Tysabri infusion.
BUT before they do the infusion, I am going to be fitted with a portacath!
The normal procedure for the Tysabri, is to be cannulated and then the infusion is hooked up. The infusion normally takes about an hour and then once that has all gone through, they keep you there for an hour afterwards, to make sure there are no adverse effects. Then you can go home - where for me, I fall asleep for quite a long time!
My one concern, right from the start, has been about the cannulation. I am a nightmare to cannulate. Apparently, I have tiny veins and they are buried very deep. But it is not only the fact that they can't find my veins. Once they find them and put the needle in, I experience a huge amount of pain. My skin is incredibly sensitive but also, I suffer with painful, altered sensations as well. So putting a needle in, is just torture for me.
I have had three infusions so far. The first time, they had three attempts, which I considered a success. The second time, the nurse tried three times, then they called a doctor, who tried twice and she couldn't do it. She went off to speak to someone else, who suggested putting my hands in hot water. Apparently, this is not allowed anymore, but needs must. After the hot water, the doctor tried a couple of areas and eventually got it done. At this point, it was suggested that maybe they should consider putting a line in.
After going away and thinking about it, I decided that I would like to go for that, so I got on to my MS nurse, to try and arrange it. I went down for my third infusion, thinking they had arranged for this to be done. They had, but they weren't sure whether it was necessary! I went ahead with the cannulation, once again. They did the hot water thing and the nurse eventually found a vein to try and she managed it, but not without an enormous amount of pain to me, again. This time, the infusion was quite painful when it went through too, but I put up with it because I didn't want to be cannulated again. This made me realise that it was only going to get harder over time and my veins would eventually give up. Another nurse asked why I hadn't had a portacath put in.
So when I got home, I contacted my consultant and asked him, if it was possible for me to have this done? He said it was possible, but again questioned whether it was necessary, because of the small risk of infection when you have a portacath constantly in your body. I explained that it wasn't just because they can't find my veins, but the pain that goes with it is becoming unbearable. I want to continue with this treatment, but if I am going to do that, then I need to have this portacath. I was getting to the point, where I was getting really stressed about the cannulation a couple of weeks before it was being done and when you have an infusion every four weeks, then that is quite a lot of stress!
So it was decided that it probably was the best thing for me. My consultant asked the MS nurse to arrange this for me.
It has been arranged and I am to have the portacath fitted tomorrow!
It will be done by X-ray, but apparently I won't know anything about it - I hope that means that they will put me out!! Once the port has been fitted, then they will go ahead with the fourth infusion.
I have no idea where the port will be. I'm assuming it will be up on my chest somewhere? And of course, it will need to be looked after very well, so that I don't get any kind of infection in it.
I am glad that this has been arranged for me and it will take the stress out of the infusions for me. It will also mean that if I need steroid infusions in the future, I will be able to those without the worry of the cannulation.
But I have to admit, now that it is happening tomorrow, I am a little bit anxious - so fingers crossed for me, please!!

Wednesday, 9 September 2009

Portacath update!

It is two weeks yesterday, until my next Tysabri infusion. It will be infusion number four.
I phoned the MS nurse today to get an update on the progress of sorting out a portacath for me. They phoned me back and said that it is all organised. They have spoken to the Doctor who will be putting it in and he will do that on the day of my infusion. Apparently, it will be done via X-ray, but I will be out and won't know it is happening - which is fine by me!! I don't know how long the procedure will take though.
Once the port is fitted, they will then do the infusion. It will be a long day, as they won't be doing the portacath until the afternoon, but that's OK. At least I know now!!
Now that it has been organised and everything is in place for it to happen, I am a little bit scared!! But scared in a good way. I know that this is the right thing for me and if I want to carry on with Tysabri, this is what I need to do that.

I have only had three infusions, so I don't know whether I should be feeling any different yet, or not. But I don't!
I have had quite a difficult week. Fatigue has hit me very hard and I have been struggling for any energy. The pain, as always, has been an issue. And the numbness and pain in my right hand and arm, don't seem to be going anywhere.
I spoke to the MS nurse about that, today. Martin had wondered whether the Tysabri could have been a reason why the numbness has happened, because it happened just ten days after the first infusion. I can see where he was coming from. But I believe that the relapse was going to happen anyway and it just coincided with the start of the Tysabri infusions. The nurse agrees with me too. It just backs up the fact that I need to be on something, like Tysabri, to help combat these relapses.

I have been feeling quite low and frustrated about everything lately. And then of course, I get upset that I am feeling like that, it is a vicious circle. I know it is easy to get caught in a downward spiral, so I am determined not to let that happen to me.
I am looking at the positives that I can hold on to.

I have my singing, of course! We are just starting to get things moving for the concert that we are putting on next year.
Don't worry you will hear all about it over time, but just to let you know, we are putting on a concert for two nights in June 2010.
The money we raise will be split between the MS Society, South Devon Branch and Rowcroft. That way we are hoping we will attract more people to come and see the show and therefore raise more funds for the charities.
The last two concerts we have done, we have raised £2500 altogether. So we are hoping to raise a good amount to share between these two worthwhile causes.
As well as doing it to raise money, it is something that I get a lot out of. The singing, of course, is something I love to do, so that always gives me a lift. But because we are organising it, there are lots of things to take care of. It is a project that means a lot to Martin and I and does a lot to keep my spirits high!
I'm really excited about it now and I wish we could start rehearsing tomorrow - patience Amelia!!