Is anyone else struggling?

I don't particularly like having MS at the best of times but I wholeheartedly dislike the damn condition when the weather gets this hot and sticky! 

Two of my main and most troublesome symptoms are pain and fatigue. The pain that I experience is pretty much all over my body but it's especially bad in my feet, my hands, my legs and my lower back. The bottom of my feet feel like I've been walking on glass and it's caused lots of little cuts all over the bottom of them. It also feels as though somebody has taken the skin off my feet, they've then shrunk it and put it back on my feet but have to really stretch it over the bottom of them because they don't fit. It's that stretching sensation which is horrible. 

My toes feel as though I have been outside in the freezing cold but then come inside to a warm room where my toes start burning.....it's that burning sensation I get all over my toes that is so painful. 

In my lower back I get a sensation that feels as though someone has got a glove on that has hundreds of pins attached to it. They are then stabbing these into my lower back.......not pleasant :-( 

Then we come to my hands. They go bright red and they look quite swollen. It then feels as though someone has taken a razor blade and slashed my hands all over.

Obviously nobody has done any of these things to me, it's just the altered sensations and how they make me feel. Because pain is an invisible symptom, I am always trying to find ways to explain how it feels. 

I have just read back what I've written and I know it sounds a little over dramatic but I can assure you that unfortunately they all feel exactly as I've described it :-( 

In fact, only the other night I woke up in tears because my feet and hands were so painful. And it is the type of pain that just makes you feel sick because it is so intense. I took some Oramorph and eventually managed to get back to sleep but it's not an easy situation. :-(

The other problem I face, which is so much worse in this heat, is extreme fatigue. Now I never really understood what fatigue was until I started experiencing it myself. Like a lot of people, I thought it just meant being a bit more tired than normal, but it's so much more than that. 

I find it physically very difficult to actually keep my eyes open. I feel like I've been hit by a truck and most of the time I don't even realise that I'm falling asleep. Sometimes Martin and I can be watching something on television. I'm fully up for watching whatever programme or film it is and suddenly Martin will pause it and tell me that I'm falling asleep. I normally try and dispute this and tell him to start playing the programme again, but normally within about five or ten minutes my eyes have closed and I am asleep! It is incredibly frustrating! 

One problem that does occur which drives me mad is that Martin and I are very keen on going to the cinema, we've got a membership to our local Picturehouse which means that we get to see free members previews. Every now and then, on a Sunday morning, they will show a film that hasn't been released yet but it's only available to people with a membership. My problem though is staying awake......being in a dark, air conditioned cinema is the perfect conditions for me to nod off! The only thing that keeps me awake is if I have some sweets or chocolate to nibble on throughout the film. It is incredibly annoying because I really enjoy watching films, I just wish I could stay awake for them! 

Just to go off on a little tangent, I think I may have mentioned it before but I want to bring your attention to something called a CEA card. CEA stands for Cinema Exhibitors Card and if you are disabled you can apply for one of these cards and it allows you to take a Carer with you to the cinema for free. So for Martin and I, I have the membership and then Martin gets in free because he is there as my Carer. It is basically so that you have someone with you who can take care of you in the case of any emergency. 

For more information go to their website  https://www.ceacard.co.uk/index.aspx 

And so.....where was I? Oh yes, fatigue! ;-) 

It's a symptom that I really try and fight which is probably one of the worst things I could do. I use up so much energy trying to fight it when really I should save that energy and just plan to have a rest during the day........see I know what I should be doing!! ;-)

We have recently got ourselves into a bit of a routine. We get up as normal and do whatever we need to. Then at some point between around 3pm and 4pm I will go for a sleep for about an hour or so (it's been more than that in this heat though) Martin will wake me up normally around 5pm and then I am able to stay awake for a couple of hours in the evening.

It is a difficult one because I do get the mickey taken out of me and I get told I'm lazy etc. This did affect me to begin with but I don't let it bother me anymore because I know that I am genuine and I have no real control over the fatigue.

I hope everyone is enjoying the sunshine, even if the heat is a little more challenging to deal with! :-)

XxXxX

Relationships and Hobbies

Hobbies are great, as a child they are a way of socialising with friends and a way of finding who you are and hobbies, as an adult, are a great release from every day trials and tribulations! 

As a child and into my teens and twenties, I loved dancing.......I know, it's hard to imagine now eh?? 

I did ballet, modern, jazz, tap, you name it and I was doing it. I loved being in shows too, whether it was the dancing school putting on their show every other year or our local pantomime and then on to the local amateur companies putting on musicals, I was involved in it all. 

From a very young age I realised that all I wanted to do was perform! 

Once I'd finished at school, I went to the local college and did a B-Tec in Performing Arts and then at eighteen I got into a dance/singing/drama school in London and off I went to complete a three year Musical Theatre diploma! 

While I was in my final year at college I got in to a company that did touring shows around the country. I started off doing a pantomime with them, around the South East, and I was out of college for about two months while I did that, but doing that got me my Equity card, it meant I was a "professional"! When I left college I got another job with the same company touring the country with two musicals. It was hard work but great fun! 

Over the next eighteen months I did a couple of jobs and then it was 1995 and I was totally unaware that this year would change my life! 

In the second half of the year I got a job singing on a ship.......it wasn't a glamourous cruise ship, it was a Stena ship that went to and from Southampton to Cherbourg in France. I was part of a ten person entertainments team, there were four singers and six dancers and we had three different shows to perform. One was a pop show, one a musical and throughout December we did a Christmas show too! 

The reason that year changed my life was because one of the male singers on the ship was Martin.....my future husband! We were on the ship from October '95 to January '96. We had a great four months on the ship and got very close but being on a ship meant that we were together every day. We made sure that we had time apart though, Martin would go up to the top deck and listen to his radio and I would have time with the girls! 

I loved the time on the ship and we have some very fond memories from our time on there. 

When we came off the ship it was quite strange though, we didn't really know where the relationship was going to go or what our next step was going to be. Martin and I had been together every day and suddenly everything was very different! He went back to his family in Bournemouth and I had come back to my parents in Newton Abbot. 

It was a bit of a test really, it gave us a chance to see if the relationship was as strong as we felt it had been on the ship. 

Obviously it was......we will have been together for nineteen years in October and we'll be celebrating our sixteenth wedding anniversary at the end of this month! :-)

I think it is quite important to have something that you can distract yourself with, especially if one of your symptoms is pain!

I have to deal with a fair amount of altered sensations and pain so I have found that one of the ways that helps me cope with it is to have things that I can concentrate on. It's a distraction technique really! :-) 

Martin and I have always enjoyed watching films together and we also enjoy a wide variety of television series too anything from drama, comedy and even foreign language, if it's written well then we enjoy watching it! The main issue we have is getting me to stay awake long enough for us to watch them! 

Something else that I enjoy doing is making cards. I guess I have always been quite creative, I just didn't realise it until I started making a few of my own Christmas cards......they were so well received and appreciated that I carried on doing it. 

Making cards is a great distraction for me.......until I finish and realise that my hands hurt! But as with swimming, I still enjoy doing it and the after effects are what my psychologist has taught me is opportunity verses cost. It's knowing that what you are going to do is going to have a cost to it. With swimming it's pain and fatigue, with making cards it's mainly pain but also mental fatigue, but actually doing these things are far more of a positive thing than a negative one, even with the after effects. 

I have also found that if I make cards while we are watching something then I have more of a chance of staying awake! ;-) 

This is a sample of a few of my cards! 

XxXxX

New Car! :-)

We are in the position......at the moment.......to have a Motability car. Motability is a scheme where disabled people are able to use their Disability Living allowance (or PIP - Personal Independance Payment) - higher rate mobility, to get a new car. 

Wait a minute, let me start at the beginning!!

When you are disabled, whether you are born with it or develop it through life, you are entitled to apply for a benefit that used to be called Disability Living Allowance (DLA). The government.....in their wisdom (don't get me started!) have decided to change this benefit to something called Personal Independence Payment (PIP) so if you are applying for the first time now you will apply for PIP but if, like me, you've been having it for years, you will be on DLA......until they get round to changing us over! 

This award comes in two parts. There is the Care component and the Mobility component. Not everyone will qualify for both but that doesn't matter, you can be awarded one without the other.

I was awarded both Care and Mobility at the higher rate and I was awarded it indefinitely.

If you have the higher rate mobility component of DLA and you have at least twelve months remaining of your award, instead of having that money paid to us each week, we can use that money to pay a company called Motability for a car that we will have chosen. 

When I was first awarded my DLA and I was told we could order a brand new car, I thought someone was joking around with us! 

To be honest, I'd never had any dealings with disabilities and therefore knew nothing about what was available to us! 

Martin and I went and ordered the car we had always wanted.......a Peugeot 206......it was October 2003! When we collected it we couldn't believe that we were allowed to drive this brand new car off the dealership......were they mad?!?!

The trouble was, we didn't think about it very much! A Peugeot 206 was a lovely car and was perfectly OK for us when we first had it but by the end of our three years with it I hated that car! It was a regular car and so getting in and out, when you have mobility issues, was not ideal but we hadn't thought about it from a disabled point of view, when we ordered it and we certainly hadn't thought about how I would be by the end of those three years. We look at very different things when we are ordering a car now! 

The Motability scheme was different back then because you had to pay for any adaptions you needed as well as any advance payment for the car, depending on what model of car you chose and which style of that model. You only got one set of tyres in those three years, so if you needed any more you had to pay for them but pretty much everything else, apart from petrol, was covered under the warranty. It would be serviced every year and just before the car goes back it has an MOT which is paid for too. 

There are basic adaptions that you can order for free now. I have a push/pull accelerator/break which is fitted under the steering wheel and a steering wheel ball. The push/pull device is brilliant, you literally pull it to accelerate and push it to break. It means that I don't need to use my feet or legs, I just drive with my hands! :-)

I had no idea what was available to disabled drivers to keep them driving. As a fully fit person I took so much for granted. It wasn't until I started losing things, like my mobility, that I realised just how lucky I'd been. But there is a huge range of things available to keep disabled people driving and therefore keeping hold of that independence that we so crave! 

I have to say that before I got my first Motability car, I had a driving assessment. I had someone who came and talked to me about the difficulties that I had and what would be useful for me. Then we went out in his car, which was adapted with hand controls, so I could try it and see what I thought! It was mind blowing at that point.......driving a car with my hands.......that was insane! ;-)

Since that first car we haven't looked back! 

Next we had a Chrysler PT Cruiser, which, although it was unpractical from a fuel efficiency point of view, it was our favourite for accessibility, comfort and just great style! We like having something that is a bit unusual and something that there aren't so many of on the roads! 

The following car was a Nissan Note......not so rare! This was a great car......it just wasn't the PT Cruiser!! ;-) 

And then we got our latest car, a Ford B-Max, the one with sliding passenger doors! 

We got the Ford in January last year, 2013, and we were delighted with it!

We loved it from the moment we saw it and it ticked all our boxes, it was easy to get in and out of, it had cruise control, air conditioning, reversing sensors and Martins most important requirement......a DAB radio!! In fact we didn't test drive anything other than the Ford, we were that convinced of its suitability. 

Everything was fine with it until October last year, less than ten months on from picking it up.

We had started to notice that when you pulled away in first gear, it would shudder or stutter. We weren't happy with it after we had come back from our holiday last year so we popped it up to the dealership - Ford Vospers Exeter - and asked them to have a look at it. They did and agreed that there was a problem so it was booked in to be repaired. 

It turned out that they had to take out the whole gear box to repair what was needed. They had the car for three weeks and that was the first problem, we weren't offered any type of courtesy car, I had to sort all that out with Motability, who were brilliant, but that wasn't the point!! 

We got the car back and as far as we were concerned that was the end of the matter! 

But no! Around the end of March beginning of April of this year, 2014, we noticed that the shudder was back but this time it was when you changed into second gear! 

We took the car back to the dealership again. Martin went out with a mechanic, who told him that a certain amount of shuddering is to be expected! We've never had a shudder in any of our cars so why should we put up with it in this one?! 

Anyway, he did agree that yes there was a problem and that he thought it was possibly the same fault as before. It was booked in again and this time we were offered a courtesy car.......a Ford Fiesta! I ended up not going in it because it was low and getting in and out wasn't easy. We also couldn't fit the wheelchair in the boot so it was lucky that we only had it for three days otherwise they would have had to change it!! 

After three days the garage phoned me. I was surprised because I thought it would take longer to fix it but he wasn't phoning me to say it was fixed......quite the opposite in fact! He said that the car wasn't fixed but that we needed to have it back. We should drive it for a further 1000 miles after which the fault would either be fixed or it would be worse! He explained that because they are governed by Ford Motor Company, they tell them what has to be done and apparently because the B-Max was a new model there was no protocol for this fault. They needed us to carry on driving it and report back what happened!

After talking it through, Martin and I decided that we needed to make a complaint to Motability. I wrote a letter and then rang them to see where was the best place to send it. The person I spoke to told me that I could send the letter but they could hear the complaint over the phone if I wanted to which, of course, would be quicker! 

I had no problem with this so I told them all the issues that we had had with Ford Vospers Exeter and our B-Max. The lady I was talking to was very apologetic that we had experienced all these problems. She understood and noted down all the complaints that we had. 

She explained that next the complaint would go through to be looked at and someone would phone me that afternoon to let us know that it had been accepted. It would then be passed on to a complaints handler who would phone us to discuss the issues and look at how they can be resolved. 

I will just point out that they had been in touch with the dealership we had used and had received all the details of us going to them with the problems etc. which backed up everything we had said.

As promised, we had a call that afternoon. The complaint had been accepted and our handler would call by the end of business the following day. 

True to their word we had a call about 1pm the next day. He explained who he was and said that he'd looked at the complaint, that he quite understood where we were coming from and that we had persevered with the problems for quite a few months. 

I was asked how we'd like this to all be resolved. So I said at the very least to have the car repaired fully but I told him that we had lost faith in the car now.

Without any hesitation he said to me that he had looked at everything and then asked how I would feel if he cancelled the contract and we could start again. We were bowled over by this because we'd joked about being able to get a new car but we didn't think for one minute that they would offer that as a solution!

He said he could cancel the contract that afternoon so we could go out and order a car there and then if we had something we wanted! We agreed that this would be the best solution and that's what he did! 

Now normally we don't start looking at cars until we are within twelve months of the contract ending. We don't go and test drive anything until we are within three months of it ending because you can't order anything until three months before the contract finishes. So we hadn't been looking at possible car choices at all! 

We literally started from scratch. We went out that afternoon to look at a few and pick up some brochures. The following two days were spent test driving various vehicles and on the fourth day we ordered our new car! 

I had phoned Motability on the Monday and we ordered our new car on the Friday......not bad eh?! 

So what are we getting? 
We have decided on a Fiat 500L MPW. 

It is actually a seven seater and although we have no need for that amount of seats, when the rear two seats are folded down the boot space is a lot larger. In the Ford our boot is 318 litres but with those seats down the Fiats boot will be 636 litres. This will allow us to have the wheelchair in there but also have space to put other things too which we can't do with the Ford! There are things that we are going to miss on the Ford.......the sliding doors for one but there are lots of things we are looking forward to on the Fiat! ;-)
It's going to be September before we get it.....it may be August, if we are lucky but I'm thinking September! We are really hoping we get it before we go away in mid September as it will be perfect to take three of us plus all our gear!! 

So fingers crossed everyone! ;-) 
XxXxX

This is the car and we are having it in green all over! :-)

Tysabri and it's longevity?

June 30th this year it was five years ago that I had my first infusion of Tysabri.

Five years! 

Firstly where did that time go and secondly, five years........really? 

When I started on the infusions it was a big decision for Martin and I, as it was for anyone deciding to go on this treatment. PML was a big issue. Progressive multifocal leukoencephalopathy or PML causes a serious brain infection that can cause serious disabilities or in some cases it has been fatal. I remember my first few infusions and all I could think about was PML and was it going to happen to me? They now have a blood test they do to check for a thing called the JC Virus. If you test positive for it you are at more risk of developing PML so they are able to keep a closer eye on you or decide to change the treatment. I need to be tested again but my first test was negative for the JC virus.

Not only was PML an issue for me to consider but I also remember my first few infusions for the pain and suffering that I endured. My veins are not great and suggest that a needle needs to go near them and they disappear! 

I have my Tysabri infusion done at Derriford hospital on a ward called PIU or the Planned Investigation Unit. I had been on that ward a couple of times prior to starting my infusions and there were a couple of the nurses that remembered me and I remembered them! One of them was brilliant at canulating people and because I was so difficult to canulate she always made sure she was available to tackle me! The problem I have isn't just that my veins disappear but my skin is ultra sensitive. 

One of my main MS symptoms is that I have altered sensations over most of my skin......it's especially bad on my hands, feet, arms and legs and it can be very painful, in fact it is most of the time. It's a symptom that is very hard to describe and because you can't see it, it's not easy for people to understand it. So having a cannula put in my arm or wrist felt as though someone had got a red hot poker and they were stabbing it into my skin. 

The combination then, of not finding my veins and the pain it caused was a really big thing for me and of the four weeks I had in between each infusion, I would spend at least two of them worrying about the next infusion.

One of the nurses happened to ask me why I didn't have a portacath or TIVAD (Totally Implantable Vascular Access Device) as canulating me was such a problem. I hadn't even heard of a portacath or TIVAD, let alone asked for one! I asked what it was and she explained that it is something that sits under the skin and is connected to a vein. Then when I'd have the infusion the nurse puts a needle straight into the port and the infusion goes straight into the vein that way. 

That sounded incredible! 

I emailed my consultant and explained the problems I was having and then asked him about a port and whether there was any possibility of me being able to have one, because if I couldn't change the canulation situation I would seriously have to think about whether I could continue with the Tysabri infusions. 

He explained to me about the TIVAD and the fact that it could stay in for life as long as there were no infections or problems with it. After I'd expressed my wish that I wanted to go ahead with it, he got it organised and at the end of September 2009 I had my TIVAD fitted and we've used it ever since! 

I would certainly recommend it to anyone who has problems with their veins etc. It has taken all the worry away for me now and the four weeks in between each infusion are much less stressful now! 

Having been on Tysabri for so long now you would think I was used to it and the effects that it has on me. I am used to it in a way but I do find the whole thing slightly frustrating too. I hate actually having the infusion because I don't particularly enjoy having a needle stuck in my chest! I also hate how it makes me feel. I get very sleepy as the drug is actually going in. Sometimes I'm not even finished and I can't keep my eyes open! I always fall asleep in the car on the way home and I can certainly write off the rest of that day plus the following day too. I sleep for the rest of the day of the infusion and I feel pretty groggy the following day. I mostly have the infusion done on a Thursday or a Friday and we know not to organise anything that weekend so that I have time to feel like a human again! 

I never feel any different with Tysabri either. I know a few people who have it who know when they are coming to the end of their four week cycle. They can feel that things aren't working so well and maybe they are more fatigued so they know that their infusion is due and once they've had it they feel better, stronger even.......but I don't feel any of that at all. 

It makes it quite frustrating because I don't really know whether it's working or not? I guess I know it's working because I'm not having relapses and I totally trust my consultant it's just a little frustrating that's all! 

I'm considering whether I can and whether I should take a break from the infusions for a couple of months, would that lower my risk of PML a little bit by breaking up the time I've been on it? I know that if I did take a break I'd be at risk of a relapse but how big is that risk and how bad could the relapse be? These are all things I need to carefully consider before I take such a big step and I wouldn't do it without my consultants full support either so I've written to him to ask his advice! 

I hope everyone is enjoying the weather and not suffering in it too much!

Sending out love and hugs!

XxXxX

Swimming again!

Oh my goodness, I have started swimming again! 

It has been several months since we last went swimming......I'm not even sure if we've been this year.......but hold on, yes I think we have, it's just I know it's been a while since we last went!!

Most of the reason for not going has been my Menieres Disease, oh and it's been confirmed that it is Menieres Disease! :-( 

I had a procedure done in January where they squirted some stuff in my bad ear, which is the left one. That numbed it and once it was numb the doctor was able to stick a probe down it to test what they were looking for. This test would come back either positive or negative and this would give them a better idea of whether I had Menieres Disease or not. My test came back positive, so yes I have got Menieres Disease! 

At that point in January I had only gone a few weeks since my last big vertigo attack. I would go on to have about four months of no big attacks......I had a few wobbles, feeling dizzy etc but nothing big. 

We went to see our GP and I asked whether I could enquire about getting my driving licence back. She said yes because I hadn't had anything much to worry about but before I could do anything about it, two days after seeing the doctor, I had three days of vertigo attacks. I think you call it Sod's law! ;-)

I had come off the Betahistine medication because my consultant had advised me to but after the second day of attacks I started up again to see if it would help........it did! 

As well as going back on the Betahistine, I had rung my consultants secretary to get an emergency appointment and at that appointment we were given some options of what we could do next.

1) We could do nothing and just see what happens over time. 

2) They could put a Collar Button (a type of grommet) in my left ear which would open up the middle ear and hopefully aid with the pressure in my ears. Then just leave that in there for a little while to see what it does.

Or

3) They could put the Collar Button in my ear, which will give them access to the middle ear where they can then put either steroids or antibiotics. The concern with putting antibiotics in the ear is that it can have a very negative effect on the hearing in that ear. I understood what they were saying but my immediate thought was that my hearing in that ear is down around 30% functional anyway so would that really be an issue?? 

The decision was made and we chose option 2! 

I didn't want to sit and wait anymore, we'd been doing that for a while and nothing much had changed. I really felt like I needed to be doing something now, so I decided that I would get the Collar Button fitted and this was done under general anaesthetic. 

The next step was just recover from having it fitted in my ear. To begin with I regretted having it done because it felt quite sore and the ear kept popping. It was really annoying but it only lasted a few days. It made a very strange noise when I held my nose and tried to pop my ears. My right ear popped OK but my left ear made a very strange whistling noise......apparently I had some dried blood left in the ear but that would sort itself out! 

I had three appointments last Friday which were all in the Ear, Nose and Throat (ENT) department. 

My first appointment was actually with a hearing therapist. This was to see if I could get any help with the Tinnitus and the fact that my hearing was so low in my left ear. We spent a while going through the history, it was interesting because while I was being asked about when things had started happening we realised that I had had intermittent hearing loss as far back as around 2010, which could quite possibly have been the beginning of the Menieres. 

Anyway, after she had gone through the history and symptoms etc she went on to explain about Tinnitus and why it happens and what my options were. We have decided that it would be a good idea for me to try a hearing aid. It can be a bit hit and miss as far as Menieres and hearing aids go but we all feel that it's worth a try! 

Throughout all my medical issues I have always tried to have the attitude that if there is a chance something will help, and the medical people I'm involved with recommend it, then I will try it! 

We need to give my ear time to adjust to the Collar Button being fitted so I've got an appointment in about five weeks to have a mould taken for a hearing aid to be fitted. 

The other appointments on Friday had been a hearing test, which showed there wasn't any change and then I saw my consultant, who had put the Collar Button in my ear. He had a look at it and was happy, he has told me to give myself a couple of weeks but then to come off the Betahistine again. I'm sceptical and he knows it because of what happened last time I came off it but he feels that now I've got the Collar button I should be OK.......we'll see!! ;-) 

Having got all the appointments done and being told that as long as I protect my ear by using an ear plug and a cap etc then I am OK to go swimming again! So, this morning, after nearly three months, I was back in the pool! I only managed twenty lengths and I couldn't put my head under the water because although I had an ear plug in and I covered it in Vaseline, I hadn't got a swimming cap so I didn't want to risk it! One is on order for me to have for next week! ;-) 

It was quite hard work and frustrating because of where I had got to last year but at least I was in the pool, which is a really great feeling! I was exhausted afterwards and slept the afternoon away but at least it was for a good reason! :-) 

I have got my Tysabri infusion on Friday so I'm not going to try and go twice this week but we have booked in to go again next Monday morning and I'm looking forward to it! :-) 

Stay well, sending big hugs

XxXxX