Sunday, 7 September 2014
When you are living day to day with a chronic illness, whatever that may be, you will find yourself, and in my case Martin, going through a lot of ups and downs and the downs can be pretty horrible at times. Because of that it is really important to make sure you have some pretty good "ups" that you can hold on to through the rough patches.
I have to say that Martin and I have had a rough few years.
Twelve years ago I developed MS, which, between the various consultants and Doctors, has been pretty difficult to manage. We had just bought our first house too!
Six years ago we lost my mum to Dementia. That was particularly tough because when dementia is involved you lose the person while they are still alive and then you lose the person physically.
Two and a half years ago Martin became very very poorly and he was diagnosed with a malabsorption illness called Whipples Disease. I thank the histologist, who worked out what was wrong with him, every day because it scares me how close I came to losing him. Thankfully he is fit and well again now....it can relapse but we'll cross that bridge if and when it happens!
Last year I started getting very severe bouts of vertigo and at the start of this year I was diagnosed with Menieres Disease. I am not driving at the moment, I need to use a hearing aid now because of the loss of hearing in my left ear and I'm on even more medication!
So yes, you can say that things haven't been easy!
BUT through it all Martin and I have had each other (and all our wonderful friends!) and that saying "A problem shared is a problem halved" couldn't be truer in our case! Because we have each other it means that we keep each other going and we look to have things in our lives to look forward to or to take advantage of. This has become very important as it is having something to look forward to or to plan for that helps you through the days where you have so little energy you can't even make it out of bed or the neuropathic pain is at a level that you actually feel/are physically sick because the pain is so intense.
I've spoken a lot in the past of our love for the theatre, both doing it and watching it, so that is something that we try to have in our lives whenever we are able to.......or can afford it!
We also love the cinema so that features a lot in our lives.......and there is quite a crossover between that and the theatre these days with National Theatre Live (NTLive) projects that are theatre productions being shown live in cinemas across the country. We have been able to see four West End theatre productions, The Audience, Warhorse, A Curious Incident of the Dog in the Night Time and Skylight and through different companies we've also seen Merrily We Roll Along and Billy Elliot, in this way so far, without having to drive around four hours to London and four hours home again each time!
There are also short breaks and holidays that we have been incredibly lucky to have in the past and will have again very soon!
It is all these sorts of things that enrich our lives and are the things that counter-balance all the down times of living with illness every hour of every day.
This year has, without a doubt, been a pretty good one for us with respect to "doing" things!
Martin and I had discussed between us that we wanted to get out more this year. To take my own advice and to plan things for us to do like going for a drive or going to the zoo. We wanted to make an effort to put those positive experiences in our lives. It can be so easy to get in a rut or a circle of getting up each day and just plodding through, where every day is the same and then you get to a point where you get comfortable just staying at home and you don't want to go anywhere.
We didn't want this to happen to us, so, finances permitting, we started thinking of what we'd like to do! This was made a whole lot easier when we had some amazing input from charities and our local council!
It started off with us getting a grant from the MS Society that enabled us to go to Disneyland Paris for a week! It was incredible and the knock on effect from going on that holiday is still being felt now. I often look at the photographs and have a giggle at the memories we have from there.
When we came back, I started using Direct Payments to organise and pay for my care. I had been having care for six days a week, an hour and a half in the morning and half an hour in the afternoon and this was being provided to me through a care agency who were paid directly through the local council. But there is a scheme now, called Direct Payments, where the council will give me the money to pay someone to come in for my allocated hours. I have someone in for an hour and a half, six mornings a week and I have two hours a week allocated for swimming. I have been lucky enough to find someone who is a friend more than a carer. She comes in for those nine hours a week and helps me with personal care etc. The council have set up an account and they pay my money into that and that is used to pay for those eleven hours a week. It is a great system and it has given Martin and I a greater sense of freedom.
Along with this I was able to organise a respite grant. I had no idea that this was even available to me but it is! I believe it is there for anyone receiving care in the community. I was awarded two weeks worth of money that I can use to give us both - Martin and I - respite, we get the equivalent of the cost of me going into care for two weeks (without me going into care!). We have been able to use this through the year for all sorts of trips, we've done a London theatre trip, we've been to see lots of things at the cinema, including NTLive events. At the beginning of September we were even lucky enough to go to London to see Kate Bush.....her first live performance for thirty five years!
It really has given us incredible opportunities!
It was very strange to start with though, we had gone for so long without getting any help at all and here we were being given money that was to be spent on things for us to do.......it was very weird!! ;-)
It didn't take us long to think up ways to spend it though and as I've said we have been able to do and see lots of things that would never have been possible otherwise!
It has been a great year.......so far and it's not over yet! We have just been on another canal boat holiday, with my dad too, of course! We did what is called the Avon Ring which was a circular route. It started on the Worcester Birmingham canal. Then we went on the Droitwich canal, the River Seven and River Avon, the Stratford canal and back onto the Worcester Birmingham canal. It took us two weeks and was truly wonderful.....Look out in the coming days for my post all about the holiday! :-)
On Saturday we are going back to London for the afternoon. We are going to the Cadogan Hall to see Claire Balding interviewing both Paul Merton and Danny Baker. Both of them have new books out and they are both books that we would want to get, so to hear them talking about them will be fun! I like Claire Balding too so all round it should be a good afternoon! We are lucky too because included in the ticket price are copies of both of the books! ;-)
Whether you have ill health or not, everyone needs positive things to do and to look forward to.......it's what gets us through life........isn't it?! ;-)
Whatever you are looking forward to or are doing at the moment, enjoy it and savour every moment! ;-)