Tuesday, 12 July 2016

Lemtrada - can anyone help?

I am writing this post on behalf of a friend. It has been suggested to her about going on to Lemtrada infusions but she doesn't know much about it. She reached out to me to see if I knew anyone who was on this treatment so that she could find out about the reality of being on it rather than just reading about it. Unfortunately I don't know anyone who has started this treatment but I told her that I would do a quick blog post to see if I could get any information for her. We all know what it's like to face the daunting task of deciding whether a treatment is right for you or not, I remember when it was suggested to me about starting Tysabri infusions, and these aren't your every day drugs without any risks, we took our time and tried to find out all we could about it.....so it's over to you, can anyone help a fellow MSer?! 

Thanks, in advance! 
XxXxX 


Saturday, 2 July 2016

Multiple Chronic Illnesses and the problems they present!

When you are diagnosed with a chronic illness, that doesn't stop you being diagnosed with another one or two totally different ones!
For example, I have MS but I also have an under active Thyroid and Meniere's Disease both of which are chronic diseases in their own right! 
I have met lots of people who live their lives with multiple health conditions that impact heavily on their lives and it can sometimes be confusing which symptoms are from which illness! 

I was diagnosed with Multiple Sclerosis first and that was in 2002/2003 but a couple of years after that I was diagnosed with an under active Thyroid. I had assumed that the fatigue I felt from the MS had just got worse but a blood test showed that my thyroid was playing up! It was a weird feeling, my body was really doing the dirty on me! So I was put on lifelong medication for that.......it was quite amusing because I was on a few drugs already for the MS but I had to pay for all the prescriptions for that. But then I was diagnosed with Hypothyroidism or an under active thyroid, which means I actually HAVE to be on medication for the rest of my life and so therefore, from then on, all my prescriptions were free! The medication keeps my thyroid under control and so I don't really get any side effects......I have a yearly blood test which lets them see that I'm on the correct dose of Levothyroxine so that keeps it all in check........that's great because the symptoms from my MS were, and still are, proving harder to manage so I don't really think or worry about my Thyroid too much! 
It was a similar situation in 2013/2014 when I started getting some more exacerbated and new symptoms. I started having problems with the hearing in my left ear and then I started getting vertigo and not the afraid of heights type! 
The vertigo I got was awful, it was so violent and disabling and it scared the life out of me. I would feel as though I had just been punched in the side of my head and everything would turn upside down and start spinning. I would have to close my eyes because I just couldn't focus on anything, I would be dripping in sweat, I would certainly feel sick and in the early days, most of the time I was sick.....I would have a bowl down on my side of the bed "just in case!" The nausea and vomiting got so bad at one stage that it would cause me to lose control of my bladder. I lost confidence about leaving the house because I didn't have any warning signs that the vertigo was going to happen.....I still don't and so for a while it had a really negative impact on my life, it still does actually because I can't drive, in fact I haven't driven for over two and a half years. If I had some kind of warning that it was going to happen it wouldn't be so bad because I could prepare myself but no that's too easy for my body! πŸ˜‰
Vertigo is a symptom that is also associated with MS so when I first started having the episodes we all wondered if it was an MS relapse. It was also considered whether it could be a type of vertigo called Benign Paroxysmal Positional Vertigo (BPPV) this is where certain head movements will trigger vertigo. There is a test that the doctors can do with the head to test for that, which they did and decided that I didn't have that type! 
I had been referred to the ENT department - Ears, Nose and Throat department because of the hearing difficulty I was having in my left ear. It turns out that I only have about 30% percent hearing left in that ear and I also have horrible tinnitus in it too. The tinnitus is horrible because with me it is constant. It sounds to me like I have rushing water going past that ear but on the inside......the volume of it will occasionally change but at the moment it is set to loud and that just makes it harder to hear too! I have been told that the hearing I have lost in my left ear is permanently lost now so I have a hearing aid to help me. 
I was then referred to an ENT consultant to try and sort out the vertigo. It took a while to come to any decisions but eventually after some tests and time and the combination of the symptoms I had, it was decided that I did actually have MΓ©niΓ¨re's disease. The hope is that the vertigo will burn itself out eventually and I will admit that it isn't as bad or as frequent as when I first had it but I do still get episodes a few days of every month which is incredibly frustrating. I still don't get any warning either so driving is still off the cards.....for now but I'm determined to get it back......one day! πŸ˜‰

So I have a list of symptoms from the three illnesses that I have, that takes a lot of energy and effort to manage on a daily basis and those symptoms differ every day. I do try to not let it get me down, which can be easier said than done, but I have the support of my amazing husband, who keeps me positive and cares for me each and every day, my Dad is great support to both myself and Martin and I have an army of wonderful friends who keep checking up on me and it's no exaggeration to say how much my spirit gets lifted by a message of support or someone popping in for coffee! 
It's those little things that keeps me going, keeps me smiling and keeps me positive, so thank you! πŸ˜šπŸ˜‹πŸ’–πŸ˜‹πŸ˜š

XxXxX 



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! ;-)
XxXxX 



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! πŸ˜―πŸ˜‹πŸ˜― 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?!?! 😜
XxXxX

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! πŸ˜‹  

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 ferrys......it 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 work.......it was a great way to wake up lol! πŸ˜‹

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 me.......it 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 worse.....my 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 water.......so 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 times......it 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!! 😜 

XxXxX 





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!! πŸ˜‹
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

Hello.......it'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 Julie....my 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 me......as you can imagine he hardly left my side during that time......unless Julie, my PA, was there instead.....so 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 wanted.......it 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! πŸ˜‹
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 flooring.....it 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 point.......it 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 WERE MOVING!!

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! πŸ˜‹
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