Sunday, 26 June 2016

Pain, pain go away, come again.........actually never!

Having a chronic illness means that your life can be very unpredictable. 
It is one of the most difficult things to deal with because you never know, from one day to the next, how your condition is going to affect you and by default, affect those around you. It is also one of the hardest things for people who don't have a condition or aren't around someone who does, to understand. 
I will never forget something a doctor said to me very early on in my diagnosis. He said that "the most predictable thing about MS is it's unpredictability!" He wasn't wrong about that! 

I have to admit that one of the most frustrating things, for me, about having chronic illnesses is when it stops me from doing something. If I have planned something or I'm meeting up with friends, going to the cinema, anything that involves me getting out and living my life but I then have to cancel it or change my plans, that's when I get the most frustrated........I guess it's when I have no control over the situation.....I'm not sure what that says about me though! 

I'm having some issues like that at the moment and it's driving me mad!

Over the past couple of weeks my pain levels have increased again to the point that I am only just being able to function. I had been holding out for an appointment that I was booked in for at the hospital on 14th June. I had thought, wrongly as it turns out, that I was having my Lidocaine infusion. It is an infusion I have that helps with my pain.......I've had two of them so far, I believe you can have them every three to four months, but when I had the last one, just before Christmas, I was just coming to the end of the infusion when I came up in a rash. It was almost like a heat rash, quite blotchy but bright red and it was on my left forearm, my right upper arm and going all across the top of my back. My consultant was concerned that I was allergic to the Lidocaine and decided that he was going to refer me to a colleague of his to get a skin prick test done to check that I didn't have an allergy and that I was safe to have the infusion in the future.  
I actually ended up having a challenge test done which meant I was injected four times (my favourite!!) The first injection I had was just ordinary saline solution, the second one was 1 in 100 of Lidocaine, the third was 1 in 10 and the fourth was 100% Lidocaine. 
It turns out I wasn't allergic to it, which was great from my point of view, because I have found these infusions do make a difference. They don't get rid of the pain but it does dampen it down for about 6 weeks which, as far as I'm concerned, means it's worth doing! I will just point out that we are fairly certain that my rash is a side effect of the new DMD - Disease Modifying Drug, I started last year called Tecfidera or BG-12. 
Anyway I had an appointment at the hospital and I, by process of elimination, had thought I was having my infusion, as I was behind in my treatment because of having the challenge test done. Unfortunately that appointment wasn't for my infusion at all, it was the pre assessment for a procedure I have had to have to put another collar button in my left ear! 
I asked if they could tell me when my infusion would be, because I'm getting quite desperate for it now, and after making some enquiries the reply was "probably not before September!" To say I was disappointed would be a rather large understatement! 

I have to say that the nurses at the hospital were amazing! Everything became really overwhelming and I couldn't see how I was going to get through until September with this amount of pain. It is such a hard symptom to deal with because no one can see it so everything has to go on what I say and I hate that! I am always questioning myself about whether it is as bad as I think it is or would someone else be handling it better than I am? I know I am being silly because ultimately whatever I feel is what I am experiencing......if it hurts me then it hurts! 
I have always, right from when my symptoms first started, tried to put into words what my symptoms feel like. Martin has always wanted to know so it is something I have just naturally done. For example my feet feel as though someone as taken the skin off, shrunken it but then tried to put it back on my foot and they've had to stretch it all over. Or my hands feel as though someone has slashed them with a razor! My lower back feels as though someone has got a handful of pins that they are constantly stabbing into it and it burns. I could go on..........but you get the idea! 

The nurse I was seeing for my pre assessment was great, she could see how upset I was when I explained what had happened and how long I am expected to wait for my infusion. She got Martin for me, made us a cup of tea and rang my doctors surgery to see when my GP was next in! She gave me so much time and never once did she try to rush us or get us out which we really appreciated! 
I saw my GP a week ago and I have to say that here we have another example of wonderful care. We have had the same GP for around 16 years now but more importantly she has seen us through my diagnosis of MS, Menieres Disease and my under active thyroid plus she was like a dog with a bone when Martin was poorly, she never once gave up on him! We have a great relationship with her as she knows us both so very well and she knows that if I'm making a fuss it's for a reason! So when I told her what had happened about my Lidocaine infusion she didn't hesitate and she got straight on the phone to my pain consultant! He is going to see what he can do but he explained to her that the powers that be at the hospital only allow him two, two hour slots a week, to perform this treatment (that's the amount of time you need to do one treatment with recovery) and as it's working for people, the more they want repeat treatments, so, of course, the list is getting longer and therefore the wait is getting longer! I completely understand this, and I know this isn't my consultants fault, but it also doesn't get me the infusion I need and the likelihood is that I will have to wait until September for it. My GP has increased one of my other medications but, after a week, it hasn't really touched my pain which just leaves me wondering what else will?? 

Keep cool in the warm weather! ;-)

Sunday, 12 June 2016

School Reunion and tackling being Disabled! 2

This post was actually published on 04/06/16 but I had some editing problems which is why it's been published again.....sorry lol!!

So last Saturday I attended a school reunion at the secondary school that I went to from the ages of 11 to 16 years old.......or 18 if you stayed on in the sixth form! 

I attended Torquay Grammar School for Girls from the years 1984 to 1989. I didn't stay on in the sixth form, I left and went to the local collage to do a BTEC National Diploma in Performing Arts. 
I went to the Girls Grammar school because I passed my 11+ exam, it was also the school that my mum had gone to so I was quite proud to follow in her footsteps.....the problem was that I wasn't particularly academic and I had my heart set on going to London, to go to a theatre school and train in musical theatre. The trouble was the grammar school didn't really concentrate on many of the creative elements. There was no drama or dance....there was a choir & also an orchestra, except I couldn't play an instrument! I don't feel that I was encouraged in any of the areas that I was actually good at!
I had wanted to be on stage for as long as I could remember......I was 3 years old when I started dancing, I eventually took lessons and exams in ballet, modern/jazz, tap, national (National dances from around the world) and I would eat, sleep and breathe anything to do with musical theatre!

It's safe to say that I was an active child! In fact I carried on dancing up until I was at least 21. I had fulfilled my dream and gone to a stage school in London doing a three year musical theatre diploma. 
When I finished college I got a few different jobs and I even got my Equity card......Equity is a union for people within the theatre but it's not something you can just sign up to, you have to earn it by working in the profession.......I was very proud to have achieved that! 
I actually met Martin while doing one of the jobs and we moved to London after we'd finished it. We had planned to carry on auditioning for things so while we were doing that, we got jobs ushering at a West End theatre. We ended up at the Shaftesbury Theatre and after a little while working there I was asked to interview for one of the deputy manager jobs.....I got the job and spent the next couple of years as Deputy Duty Manager at the Shaftesbury Theatre, another achievement that I'm very proud of! 
We left London after a few years and ended up back in Devon.....after we'd done a bit of travelling around Europe......We got an Inter-rail ticket and with a tent & a large back pack each, we travelled to France, Belgium, Netherlands, Germany, Austria, Switzerland, Southern France and Italy! 😯😋😯 I will just say that anyone thinking of travelling or taking a gap year, I would really encourage it. Looking back on our lives, I am so glad that we did it because I would never be able to do something like that now. Take your chances when you get them! 
It had never been in my plan to move back to Devon, it just kind of happened and at the time I wasn't sure how I felt about it but as time went on we settled down here, we found somewhere to live and we both got jobs, in fact we managed to buy our own house but we were in that house for less than twelve months when my first symptoms of MS started. It was a scary time because I wasn't able to work for a while, we'd just got a mortgage and the future seemed really uncertain. 

But as always things have a habit of working out and fourteen years on we are in our flat, our "forever home" and we're all very happy here! 

Now back to the reunion, it had been in the planning for some time and I had been told about it last year sometime. I was fairly adamant to begin with that I wasn't going to go. I had shut that door a long time ago and was sure I didn't want to open it! Apart from not wanting to go to the actual school again, I wasn't sure that I wanted people to see me as I am now, after all I'm not the active girl that I was at school. 
The beauty of Facebook is that it connects people, it brings people together, whether they are going through similar things or whether they knew each other in the past, it connects and reconnects! 
I was able to reconnect with a few of my old friends from school, one of which was helping to organise this reunion. She knew how terrified I was of being a part of it. I guess a part of it was that I wasn't the girl they'd remember (but then who was?) but also the way society makes us feel about how we are or what we have done made me scared to show myself.
I'm slightly ashamed to say that I felt embarrassed.....embarrassed about being disabled and yet now, as I write this, I realise just how ridiculous that sounds.......I just knew that I didn't want people to feel sorry for me.......and they didn't! 

In the end I was persuaded to go and I am so so happy that I was! 

I started the afternoon off on my crutches but quite soon had to get my wheelchair, we were going on a tour of the school and I knew I wouldn't be able to manage walking that far. While I was sat talking to a friend, Martin had taken my crutches back to the car and he'd brought my wheelchair up to where I was sitting. I don't know why but just that change from using crutches to getting in my chair made me feel really emotional. I was so conscious about getting in and being in my chair and about being different, that it almost took my breath away. But that was all me, no one else made anything of it! I don't like having to use my chair even though I know it is there to help me but having said that, I am much better at using it than when I first got it lol!!! Not one person made anything of my situation and nobody made me feel awkward at all throughout the day....I'm hoping I didn't make any of them feel awkward either! 
We had a fantastic day, catching up with old friends, reconnecting and making plans to see each other again in the future. 
A very special day, let's not leave it another 25 years eh?!?! 😜

I just want to add that it was great to go and look around the school again, after all these years! It was another thing that I'd felt fairly adamant about, I didn't have great memories of it and so why would I want to go and see it again? But over the last 25 years, I am pleased to say that things have changed! The one thing that I will take away from it was that it now feels like a proper school. There were pictures, the pupils art work and school projects all over the walls of the corridors. There has been extensive development and new buildings, a sports hall, gym etc. It's fantastic and a school to be proud of........not like 25 years ago! 😋  

Saturday, 11 June 2016

Finding the right exercise for you!

All through my childhood and into my early adulthood I had always been very active. 
I started going to dancing lessons at the age of three and I was hooked from as early as I can remember.....and I wanted to do it all. I not only went to ballet classes but I did modern/jazz and tap as well as learning national dances from around the world. I was down at my dance studio most evenings as well as the weekends, then I heard about auditions for the local pantomime and I wanted to be involved in that too! I remember I was eight years old and I had auditioned for the junior chorus but I didn't get chosen for that.......however the director asked myself and another girl if we would consider sharing one of the main roles, I was so excited......the pantomime was Goldilocks and the Three bears and I was going to be playing Baby Bear!! 

Paignton Pantomime 1981/82 Goldilocks and the Three Bears! 

That was to be the first of many, I enjoyed it so much that I was involved with Paignton Pantomime for the next nine years too, I went from playing Baby Bear to the junior chorus, then on to the senior chorus and then on to playing principal roles and I have to say it was a wonderful way to get experience plus it was great fun and I made some lifelong friends along the way! 

Junior Chorus! 

Senior Chorus! 

Senior Chorus! 

From dancing my way in to my late teens, when I was eighteen I moved to London and went to a dance college where I did a musical theatre diploma......this involved, amongst other things, dancing every day! 

Keeping active was just a way of life for me! 

Martin and I moved back to Devon in 1999 and once we were settled, Martin decided that he would like to get involved with local amateur groups so that he could be in plays as well as musicals. I would say that for him acting is his first love although he has got a singing voice to die for so I love it when he is involved in musicals! We actually met when we were working together, professionally. We were part of the entertainment crew on one of the cross channel was a huge Stena ship called "Stena Normandy" which carried around 2100 passengers! 

Martin got involved locally first, because he was joining the society's that I had been a part of all those years ago and I wanted him to be known as Martin Southard as opposed to "Amelia's husband". I did go back and was a part of some of the shows as well, up until 2002. 

Performing and rehearsing were not my only forms of exercise though, I also loved swimming. I had been a strong swimmer for as long as I can remember and I know throughout 2001 I used to go two or three times a week, in the mornings, before I went to was a great way to wake up lol! 😋

When I was diagnosed with MS, my mind was all over the place and, to be honest, my diet and fitness were at the bottom of a long list of things that I needed to think about........that's when my weight started increasing. When you go from being someone who was so active, to not being able to just walk in a straight line without falling over, your world kind of falls apart. 
I was so busy worrying about not being able to work, to trying to go back to work and it failing, miserably, that I wasn't thinking about looking after myself. 
I had a big relapse in 2003, which is when I was officially diagnosed with MS. It affected my legs very badly and I've been on crutches ever since. I was referred to see a Physio and as we talked, I told her about my love of swimming but that I hadn't tried it since my diagnosis. She offered to take me, so I went......or at least I tried to go swimming but I couldn't just get in and swim and that completely threw me, so after that I didn't swim again for around eight years! 

We have a friend, actually we are friends with the whole family and they have a swimming pool. While it was being built, they said to us that, if it would help, they would be happy for us to go and use the pool. I was pretty nervous about it at first but I wanted to give it a try to see if I could rekindle my love for swimming again. The great advantage of going to their pool was that there was no one else there when I went so it was the perfect situation for me to see what I could or couldn't do and not have anyone watching me! 
It was a slow start and I couldn't just get in and swim but I could get in and not need my crutches or wheelchair, in fact, I could walk around in the pool and that in itself was me working my body without any effort! I built up a bit of a routine of different exercises that, because it was weightless, were easier for me to do in the pool rather than out of it......although I always paid for it when I got out of the pool......and that always seemed to surprise still does......ouch!! 😜
Once I realised that I could swim......or my version of swimming........I started going once a week because I was comfortable with what I could do in the pool. I had figured out how to do a stroke that would allow me to swim, in such a way, that would cause me the least amount of pain.....I would do breaststroke arms but my legs would lock straight out behind me. It is something that is so hard to explain to anyone, without it sounding like I'm whinging, but one of my worst symptoms is neuropathic pain & altered sensations over most of my body so going in the pool, while it is a great form of exercise, it still causes me a lot of pain. I don't necessarily feel it while I'm in the pool but it gets its revenge when I get out. I struggle because swimming physically hurts but the neuropathic pain is, for me, a lot skin will feel very prickly and it starts buzzing all over, as though someone has plugged me into an electricity socket.......and that really is "Ouch!" 
I know, deep down, that going swimming is helping me. It is keeping me moving, even if it is still very slow
 and yes, it causes me pain but it also gives me a lot of pleasure. A psychologist I was seeing explained it to me like this, it is opportunity cost. I have the opportunity to go swimming but I also know that it's going to hurt so which is more important to me, which, outweighs the other and for me, the pleasure and mental satisfaction I get while I'm there is more important to me than the pain I feel. Now, don't get me wrong, I'm shattered afterwards and I'm grumpy because I'm in pain but there is a reason for it and that makes a difference! 

In 2012 I decided that I was in a place where I knew what I could do in the pool now. I was happy that I was able to do something and I was enjoying being in the now I needed a challenge. I was talking to my best friend one day and I mentioned that I would really like to do a sponsored swim.....I needed to have something to work towards and a sponsored swim might be a mad enough idea for me to do. She said that it was a great idea and that she would really like to do it too....we could train together and help each other with it. We discussed various ideas of how we would do it and she had heard a saying that was "Walk a mile in my shoes" and that said everything about what we were doing........I wanted to raise money for MS and Joe would do it for The British Heart Foundation. We worked out how far a mile would be in the pool and it turned out it would be 120 lengths, so we would do 60 lengths or half a mile each! We laughed......a lot.......60 lengths.....really.......who's stupid idea was this?!?! 
I knew I wouldn't be able to swim 60 lengths without stopping, that was asking for failure before we'd even started. We came up with a plan, we would do the lengths in a kind of relay, one of us would start by doing six lengths, when they had done those they would rest while the other person does six lengths and we would each do this ten sounded so easy! 😜 
Straight away we decided that we wouldn't have a time scale, we didn't want any unnecessary pressure. We would just train until we were nearly there and then book a date and get some sponsorship! This was exactly what we did.....we completed the swim and between us, raised around £500 which was very satisfying! 

It's been a bit hit and miss over the past few years because of my health but I have managed to go fairly regularly this year, so far and I'm thinking that I'd like another challenge over the coming months so watch this space!! 😜 


Tuesday, 31 May 2016

Newspaper Article

About a week ago I had a phone call, out of the blue, from someone at the MS Trust. I had gone up to their offices a couple of years ago to take part in a videoed discussion on bladder and bowels in MS. They asked me to take part after I had written a piece on this blog about using the Peristeen system. The system is a device to help people empty their bowels and to be completely honest, it changed my life when I was introduced to it around 2010 and I have been using it ever since! 
The following link will take you to Coloplast who supply the Peristeen system. This explains all about it.

The next link is from my blog and will take you to the article I wrote about starting to use the Peristeen system and my experience with it.

OK, so I went off on a tangent there but basically the guy who organised that video a couple of years ago phoned me last week. He had been contacted by the Exeter Express and Echo because they wanted to do an article on the reality of living with MS and had asked him if he could recommend someone that they could do the article on........then he phoned me!! 😋
He asked me if I'd mind speaking to a reporter and doing the article? Of course I said yes! Since being diagnosed with MS I have found that I can't be involved in the theatre as I once had been but because of all that training, I have been told, more than once, that I speak very well about my diagnosis and about my experiences of living with the disease. I guess I might as well put that training to good use and if I can help one member of the general public understand a small amount of what it's like living with a chronic illness.....or in my case three chronic illnesses......then it's worth my while doing it! 

The reporter rang me last Friday 13th May and we were talking for about an hour! When we'd finished I asked if she could email the article to me before she published it. She said she definitely would because she always does when it's an article on someones health. Later that evening I received the email with the article and I was really impressed with it. She had constructed it really well and Martin and I were both very happy with it. It was actually published on their website on Sunday last weekend and the following link will take you to the article......enjoy! XxXxX 

Saturday, 21 May 2016's been a while!

I did an interview the other day for a local newspaper......the Exeter Express and Echo.......and I was reminded about my blog and the fact that I hadn't written a post on here for quite some time! I was thinking about it and how much I enjoyed writing posts and so I decided to do something about it! 

There is a good reason why I haven't written on here for a while and that is that last year was a year that turned our lives upside down........for both good and bad reasons. 
The year started off in the worst way possible when we lost Martin's dad. He had a massive heart attack followed by two more and he died on 15th January. That put us in a spin then and we still can't believe he's gone now.

The next thing that happened was that I had a bad relapse. It affected my left side quite badly especially my leg which I struggled to feel and it was unbelievably weak. I had severe difficulty walking anywhere because my right leg was affected too but not as badly as my left side. It meant that I couldn't do anything without help and because our bathroom and bedroom were upstairs I wasn't safe in the house. I needed Martin and PA.....more than I have ever needed them. I had a couple of bad falls and it knocked my confidence quite severely. I saw my consultant while I was mid relapse and he was surprised to see me in my wheelchair......I wasn't able to go anywhere without it, to be honest, it really was a horrible relapse. 
It was during this relapse that my consultant wanted to put me on a relatively new drug called BG-12 or Tecfidera. It isn't as strong as Tysabri (which I had had my last infusion in August 2014) but it is stronger than the Interferon drugs. I had stopped Tysabri because I just wasn't convinced it was doing anything for me but it meant I wasn't on any type of disease modifying drugs at all. So it was decided that I would try BG-12 and see what happened. I am happy to say that I am still on it, I have very few side effects, it is a twice a day tablet so no infusions and it is delivered to me every month.....bonus!! 

The next big thing that happened to us last year was that we found a new place to live! 
A little back story on this, back in 2014 Martin and I had a discussion about our house and what would happen when I couldn't manage the stairs anymore. We lived in a two bedroom, mid terraced house with the bathroom and bedroom both upstairs. We spoke in depth about it and decided that it might be a good idea to try and get ahead of ourselves and go on the housing list now instead of waiting until it was desperately needed. So we did! It meant that we were looking for our forever home, this would be our final move, so it needed to be something and somewhere that we would be happy living in for the rest of our lives! 
Now to cut a long story short.......I will write another post in the future with the longer story in more depth, but for now I'll keep it short! 
We went onto the housing list in January 2014 but spent the next twelve months getting our band changed. Once our band was changed we had a more realistic chance of getting to see properties but we still thought it would take us about twelve to eighteen months to find somewhere we wanted to move to. 
Our ideal would be a bungalow in the same area we already lived. It turns out that bungalows are few and far between, especially ones that are disability/wheelchair adapted.
You get to bid on three properties each week so we made sure we placed bids each week because the housing association needs to see that you have a bidding history.  
Martin and I were bidding on bungalows firstly but also ground floor flats, nothing else was going be suitable really. Ideally we wanted it to be adapted with disability/wheelchair in mind but the important thing was to find somewhere suitable because adaptations could be done at a later date if necessary! As I said, we wanted to stay in the same area, if we could, but we would bid on the surrounding area too because there isn't an endless supply of properties in any borough! 
Of course all of this took on an even bigger significance when I started having my relapse, I was struggling to walk anywhere and going out of the house absolutely meant using my wheelchair. But I couldn't even fit a wheelchair in our house, let alone be able to use one. It's no exaggeration to say that I was unsafe in that house, especially if I was in the house on my own......unless I was in bed. Even if I was in bed, I struggled to go to the bathroom on my own! I had a couple of nasty falls, an especially scary one in the bathroom and that was with Martin keeping an eye on you can imagine he hardly left my side during that time......unless Julie, my PA, was there you can imagine it was so important for us to find somewhere suitable and preferably sooner rather than later. 
We would both look at the list each week and we would agree as to which properties we would bid for. When you're investing that much time and effort in to something it's hard not to get emotional about it and even more so when I was having my relapse. I was a bit of an emotional mess at that time anyway because the relapse had knocked the stuffing out of me......I was so reliant on others to help me with everything and that just wears you down. 
There was a particular week, I believe it was at the end of April and I received a phone call from someone at Exeter City Council. They asked me about one of the properties I had bid on, it was a ground floor flat and they wanted to know if I needed a wheelchair accessible property or just level access. I explained that I definitely needed a wheelchair accessible property and she asked me if we wanted to view this particular flat, she said that we were 4th on the list for this flat but the three ahead of us didn't need the wheelchair accessible bit and this flat would only be offered to someone who needed that. I said yes to viewing it, even though it was in Exeter, after all, we'd be silly not to take a look at it! The lady I had spoken to had explained to me that the people who were currently in the flat needed more space which is why they were moving......that particular statement put Martin and I off, if they needed more space then surely this flat wouldn't be big enough for us either but we still wanted to view it to make our own minds up! The other issue, from our point of view was that it was in Exeter which was around 20-25 minutes away from where we were in the house so we had decided that it probably wouldn't be where or what we actually meant that we had no preconceived ideas and we were so sure that it wasn't going to be what we wanted we weren't pinning our hopes on it at all! 
It was actually another three or four weeks before I heard from the council again. The people who had been in the flat had now left so the council were in the flat repainting it and tidying it up etc but we could go up and see it the following Friday 5th June 2015! I organised for another lady, an Occupational Therapist, who had helped us with changing the band, to come and see the flat with us. She had an unattached viewpoint but she could also look from a professional aspect and check whether things were right or wrong for us. 
Friday 5th June came round but we weren't overly excited, as I've said, we had convinced ourselves that it wasn't going to be right so there was no point getting our hopes up.....was there? 
How wrong we would turn out to be! 😋
We had looked up the address so we knew roughly where we were going......but that's what sat nav's are for isn't it?!?! We met the lady from the council and our OT outside the flat. Martin got me set up in the wheelchair and we went in.......this is when and where our lives changed forever! 
There were dust sheets everywhere because the council were redecorating it for the new tenants but even so we were blown away. The flat was only built in 2012 and it was a purpose built, fully wheelchair accessible flat. The bathroom has a full size bath, a huge height adjustable sink, a toilet and a full size level access shower complete with wet room altro was huge! I went into the next room thinking it was the living room because it was so big but no, this was the one bedroom! The bathroom has two doors, one in off the hallway and one from the bedroom so effectively it is an en-suite bathroom! We then went into the living room and kitchen and I just burst into tears at this was amazing! My OT didn't know what to say, other than it's huge! We were there for around 20 to 30 minutes and Martin and I were happy enough that it was what we wanted and needed so we agreed to take it.......we could pick up the keys and go through all the paperwork the following Friday! Aaaaaaagggggghhhhh!! 

We picked up the keys the following Friday but there was no pressure as to how quickly we moved in. Obviously we wanted to move in as soon as possible but we still had our house to pack up......our two bedroom house that we had lived in for nearly 14 years, to pack up......and I was still mid relapse! 

To cut the story short again, we actually moved us, our big bits of furniture and the cats in....with a lot of help from our wonderful friends.......on Sunday 28th June although Martin, bless him, had been doing daily trips up to the flat taking as much as he could each time! Remember that we were going from a two bed house to a one bed flat so a lot of things got given away, given to charity or thrown away! 
We still have boxes to be unpacked now but we said all along that we were not going to unpack things until they had somewhere to go......I didn't want to unpack and then have to move it all again because it wasn't in the right place. We knew this meant it would take some time to get it all unpacked and straight but we didn't mind that, this is our forever home so we have time to get it all sorted! 

I cannot actually believe that we have been here for almost twelve months........especially when I look around and see how much still needs to be unpacked! But the main surprise is just how settled we are......we really love living here.......and we settled pretty quickly too, which is a good indicator that we've picked the right place eh?! 
We had a lot of help from friends and my Dad, in fact my Dad has performed miracles at different stages over the past eleven months.......from helping us pack and move, to helping us unpack, putting up shelves and putting together furniture, we couldn't have done any of it without the help of my Dad! 

Martin and I have looked at this move as a new chapter in our lives. We knew that moving would be a big upheaval but we wanted to do it while I was still active.......of course we hadn't planned for me to be in the middle of a relapse but you have to just go with it when you are dealing with a chronic illness that can flare up at will! 
Yes we have sold our house and yes we live in a new area now but we have a wonderful flat that has given me back some independence. Everything is on one level, we have a small garden, the cats love it and I have got an electric wheelchair.......what more can a girl want?!?! 😜 

Stay positive, good things can happen! 😋

Thursday, 4 June 2015

A bad start to the year, a death, a relapse and a new medication-Tecfidera BG12

Yet again I have neglected my blog for a long while and I never mean to do it, it's just that circumstances take over, months go by and my blog suffers 😞 

This year started out ok, we'd had a good Christmas in Bournemouth with Martin's family and we were feeling quite positive for the year ahead but then the unthinkable happened, Martin's Dad had two catastrophic heart attacks and on 15th January he passed away, surrounded by his family and loved ones. It was awful and unbelievable, he was only 63 years old, how could that happen? He had had a stroke last year and was recovering well but something we didn't know was that having had a stroke it made him susceptible to having a heart attack. 
The things we were most thankful for were that he didn't suffer and we'd been there at Christmas, in fact Martin and his two sisters had been with their Dad all at the same time for the first time in a long time and I had suggested taking some photographs of them all. Little did we know that they would be the last photos of the four of them together. Devastating. 

Now on to my MS and a catch up on where I am.

On June 30th 2014 I had been on Tysabri for five years and I was beginning to question why I was on it. I would have the infusion on a Thursday and I had to make sure there was nothing planned over the weekend because it would wipe me out for those few days after it. I didn't really feel any benefit from it either. I had conversations with other people who were on Tysabri who would feel a definite benefit, they would feel when they were close to having an infusion and they would pick up and feel better after that infusion but I never felt those things at all. 
It's true that there was no evidence that I had had a relapse while I'd been on it either so it was with trepidation that I asked the question whether I could take a break for a few months from the infusions. I just felt that I was putting this potent drug into my system, it was taking it's toll on me for a few days each month and I had no evidence that it was actually helping me. The trouble was that by taking a break I was possibly setting myself up to having a relapse, so I needed to make sure that if that happened would I be able to go back onto Tysabri. 
I had a good conversation with my consultant and GP and then Martin and I both felt that we were happy that things were in place for me to take a break, so I had my last infusion on 28th August 2014. We were looking at taking six months depending on what did or didn't happen. 
By the end of February 2015 things were going fairly well, especially having had the emotional trauma of losing Martin's Dad. But in March I started to feel an increase in my pain. It's difficult to describe because no one can see it but it is intense neuropathic pain which can be incredibly painful. My skin was feeling very sensitive, even putting clothes on was getting horribly uncomfortable. 
I contacted my consultant and explained what was going on. He was taking time out for his research and so I would be seeing someone else on his team but he organised for me to have an MRI to check whether there was any activity with my MS. The scan came back that it was unchanged from previous scans. This was positive but I always find it frustrating because, to me, it means there is no evidence to back up what I'm feeling. I have always had an issue with people believing me about my symptoms. So much goes on what I say about how I feel because so many of my symptoms are invisible. I know it sounds ridiculous and there are complicated reasons for why I think like this but I'm not going in to that now! 😉
I had an appointment in March with a neurologist and it was actually quite nice to see someone different. I have been with my consultant since my first big relapse in 2003. He has been so good to Martin and I and when he had to stop doing clinics at my local hospital, I was given the choice, I could stay with him but my appointments would be in Plymouth or I could change over to the neurologist at our local hospital. I knew straight away that I would stay with my consultant as he knew me, no actually he knew us. I'd had his support when Martin was poorly and he's always had my back! But seeing someone different after twelve years was was a new set of eyes on my case! 
First of all he asked if I was on Vitamin D3. I wasn't so he suggested that I start it, at 5000iu a day. He said that he makes sure that all his patients are on it. Apparently there is evidence to suggest that there is a link between low vitamin D3 in your system and MS. I have no opinion either way on it but I am taking it for now to see if it helps to make me feel better! 
The next thing that happened was that for the first time I saw my MRI scans! I have never seen them up to that point so it was interesting to see the lesions on the scans. It was also quite liberating because the consultant actually explained to me that where some of the lesions were was the reason I have trouble walking. And he said he also knew that I have a struggle with fatigue, again because of where the lesions were. It was quite amazing because for the first time I actually saw the evidence that I was looking for that shows me that there is the reason that I have Multiple Sclerosis.......silly eh?! 😉

The next thing we talked about was the Tysabri infusions and the fact that I was on a break from them. We discussed how I felt since I'd not been on Tysabri and apart from the increased pain that had started recently, I had been doing pretty well. This was all good but he wasn't happy that I wasn't on any of the DMD's - Disease Modifying Drugs. It meant I wasn't on anything that could help my body fight the progression of the MS. Over the years more DMD's are being tested and approved for use in fighting the disease progressing, mainly for people who have Relapsing Remitting MS. 
There are a group of DMD's called Interferons, these include Rebif and Avonex. Then there is a fairly new drug called Tecfidera - was only granted NICE approval in August 2014 to be used for people who have Relapsing Remitting MS. This one is a bit more potent than the Interferons. Then there is Tysabri which is more potent again. There are other drugs as well, these include Campath and Fampridine or Fampyra. These are all designed to help specific symptoms or to help slow down the progression. MS is such a complicated illness and everyone is affected so differently, which makes treating the disease very difficult. There is no "one drug suits all" with MS. Things will work for some but not others and it really is trial and error to find out what works for you. I have tried several and I'm still looking for my "wonder" drug! 
As the consultant wasn't happy that I wasn't on anything that could potentially help slow down the progression, he suggested that I start on the reasonably new drug called Tecfidera - BG12. It's not as strong as Tysabri but he felt it was better that I was on something rather than nothing......we agreed and so he set up for me to see one of the MS nurses with a view to starting this drug. There were several plus points to this medication, it is a capsule that is taken twice a day, so no nasty infusions......and the medication gets sent directly to your door, so no trips to the GP or hospital, which sounded good to me! 
I met with one of our MS nurses who went through everything about Tecfidera - BG12. I needed standard blood tests done to check everything before I started the drug, the prescription gets sent to a company called Alcura, who are the people who manufacture the drug and they send it directly from them to your home. It took two and a half weeks between me saying I would try it to it arriving on our doorstep! 
There are side effects with this medication, as with most medications, and there is also still the risk of PML - Progressive Multifocal Leukoencephalopathy, when taking BG12 but it's not as high a risk as with Tysabri. You also have to be tested for the JC Virus, this is a specialised blood test that is done and sent away to see if your positive or negative for the virus. If you are positive, it means that you're at a higher risk of developing PML but there has only been one death in the UK from PML and, as I understand it, that person didn't have MS. The general side effects from BG-12 are that it can give you gastrointestinal problems and hot flushes. The nurse said that if you take it with something that has fat and protein it can help to stave off some of the gastro issues and she suggested peanut butter on toast was a good one to take it with. I have to admit that I like peanut butter so I have been having a piece of that every morning with my capsule. The first morning I took it the only problem I had was a hot flush......I'd never had one like it before.....but I didn't get one in the evening and to be honest, I've only had three or four in the two and a half weeks that I've been taking it. And so far so good, I haven't had any stomach problems so I'm hoping that continues! 
I had been hoping that taking this medication would make a difference to this relapse but that was me clutching at straws. This relapse has happened and none of the DMD's would make a difference to it now, I just have to let it run its course and any damage that's been done can't be reversed now. I knew this, of course, but I was still hoping that it would help. I was explaining it to a friend of mine who asked what was the point of taking this if its not going to help? I explained that like Tysabri and the others, it doesn't change what has been done but it helps to slow down any future progression of the MS. 
One thing with this relapse, something I haven't had for years, is a thing called L'Hermittes sign. This is a typical symptom of MS and is a fizzing sensation that travels down the back into the arms and fingers which is brought on by bending the neck forward. It is the most bizarre sensation and I thought I was going mad when I first experienced this but when I explained it to the consultant, he immediately knew what I was talking about, which was comforting! I had this symptom after my first big relapse in 2003 and it stayed for a couple of years but I haven't had it since. It really does feel like a small electric shock or a fizzing that travels quickly down my back. I had forgotten how annoying it can be just from moving your head forward! 

So as things stand I am waiting to see my consultant, I have an appointment at the beginning of July and in the meantime I am just trying to live the best I can with this relapse and the issues that have come with it. I am working hard with a Physio to try and get my legs stronger. I went to her yesterday and we are already noticing a difference in my right leg. She says she can see that my left leg is working hard but I can't see or feel it myself. I get impatient and I want to see changes immediately but it doesn't work that way does it?! 
And in the meantime, Martin is doing so much for me because I am so unsteady on my legs and I am still pretty much dragging my left leg around. It means that I can't stand for long without my legs giving way and being in immense pain, so I'm unable to do any cooking or sorting out washing or any of the household things......I can't even feed the cats......and because we live in a house, our bedroom and bathroom are upstairs and just climbing those stairs is both time consuming, painful and energy zapping. I have to plan things carefully so that I go up and down them as few times as possible in a day. I really hope I get over this relapse soon and with the least amount of damage possible......fingers crossed! 


Wednesday, 27 May 2015

WORLD MS DAY........27th MAY 2015

World MS Day - 27th May 2015 

Multiple Sclerosis or MS is a chronic illness that affects approximately 2.5 million people around the world. Around 100,000 people live with MS in the UK and it is thought that around 400,000 people live with it in America.
It is a complicated, debilitating and unpredictable illness because it affects everyone differently. There is a long list of symptoms but you will not get all of the symptoms, this is what makes it so could have a room full of people with MS but we'd all be living with a different set of symptoms! It is also why there are a lot of different treatments because what works for one might not work for someone else. 

In the UK there are a lot of charities out there that just concentrate on MS. They will be there for you if you need help, whether practical or emotional, they are all there to give support and lend a hand or an ear if you need them.

Here are just a few of the websites that will direct you to that help! 

The National Multiple Sclerosis Society

The MS Trust -

Good luck and stay strong!