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! 😋
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! 😋