The best therapy

I’ve always loved dogs and they have always been a part of my recovery after being in hospital.

Growing up we had Pickle, a wire haired dachsund but she was mums dog so although I got cuddles it wasn’t the same.

When I was 7, Mungo (Pickles son) was born and my first love affair began. Lots of cuddles, licks and good memories.

When I was 13 and recovering from my second operation Elsa (miniature wire haired dachsund) came into my life and made it incredible. Elsa was bred to be a show dog but hated being in the show ring and being handled by strangers (can you blame her). She travelled back from Kent with mum, sitting on the passenger seat and was incredibly nervous so barely came near me when they reached home.

The next day both parents went out to work and Elsa and I spent the day on the sofa with her wedged between me and the back of it. And after that history was written. Wherever I went I had a follower, upstairs, downstairs, inside, outside and even to the loo.

When I went to university Elsa stayed with mum and dad although I loved going home and seeing her and when I first moved to Basingstoke I lived in a first floor flat with no garden so it didn’t seem fair to bring her to live with me, leaving a garden and mum and dads dog Noah (another dachsund).

In 2014 we sadly had to put Elsa to sleep and it took 9 months to feel ready to get another dog. I was living in a two bedroom house with a garden situated near to two parks with plenty of places for walks. My search for a new dog took 2 months, with visits to a shelter near my parents, website trawling as well as searching Dogs Trust and Battersea,

A disastrous trial with a young dog led me to believe an older one would be a better fit and the same day that I decided to postpone my search for a dog the same day I saw the following description

extremely lazy, likes to lie in the sun and sleep inside. Would suit a retired couple

At this point I knew I had to meet this dog and from the moment I saw Minnie Mouse I knew she was perfect for me.

She had a hernia, had been used for puppy breeding, had entropian of the left eyelid and a severe skin infection.

A few weeks later after surgery, spaying and microchipping she was home with me and within an hour had decided the sofa and bed were her domain and she went from one to the other.

Nearly 3 years later I can’t put into words how much she’s helped me. When I’m ill she comforts me, when I’m feeling lazy she’s a reason to go out. She runs next to my scooter and helps me get used to the items occupational therapy have given me.

A lot of people with different conditions will tell of the benefits that animals can give and I’ll be exploring the different organisations that help with these animals in my next post.

The Importance of Family

My family has always supported me no matter what. They’ve always been there to help me when I’m well and when I’m ill.

The past week has given me an opportunity to see many members of my family on both Thursday and Sunday.

On Thursday many members of my family attended the Monte San Martino trust which was set up to thank those who helped the P.O.Ws who escaped camps and travel down Italy.

I first started attending these lunches before my ataxia took hold but life with a blue badge makes it easier enabling us to park outside the venue. Every cloud has a silver lining and this one also had a rainbow as I got to see cousins I rarely see and have a catch up.

I’ve talked before about how much I love my niece and nephew and this weekend we had our first family Christmas with my aunt, cousin, his wife and child.

It may be early for a Christmas party but it’s ideal for me as a get tired so easily so spreading it out works well.

Being off balance meant a bit of “dosy doeing” before sitting down and trying not to tread on toddlers but all in all it was a lovely few days being with family members who have supported me through everything and continue to do so.

Acceptance

Growing up if you had asked me what the one thing I wanted when I was older the answer was simple and one word;

Kids

Being a mum was something I always wanted and dreamed I’d be and a lot of people said I’d be good at it.

About 4 years ago I started to wonder more about this. I sleep 9 hours a night at least and often nap in the afternoon to ensure I continue to function. Fatigue is a daily struggle for me. If I’m short on sleep I really struggle to cope with the day. Even more so now than then. A night back then of staying up chatting and only getting a few hours sleep led to me being able to barely put one foot in front of the other.

I’ve always believed you shouldn’t have kids if you can’t care for them properly and I began to have doubts whether I could.

These doubts and thoughts carried on and led me to stop being friends with people who had children as I couldn’t bare to be around them at the time.

My sister and brother in law then announced they were pregnant and in 2015 my niece was born.

Seeing my sister and her husband dealing with sleepless nights, feeding, sleepless nights, crying, sleepless nights, sick, sleepless nights and poonamis made me seriously consider even more whether I could manage it.

Just under two years ago I had a massive ataxia attack and now struggle to walk, cook, stand up and live. From then on it was decided that I should never be left alone with a baby or hold one whilst standing etc. I can’t pick up a crying baby without falling over or carry one up the stairs when it needs to nap.

So I decided that having kids wasn’t for me, for their safety and my own. It took a while but I eventually came to terms with this decision and accepted it was the right one.

Having come to terms with this and knowing it was the right decision my sister announced she was pregnant again and a few months later my oldest friend did too.

I’m now auntie to two amazing kids

who I love to pieces and spoil rotten with presents galore. But they are so worth it.

So you may have to adjust your dreams to fit your life but you can stilĺ enjoy the outcome.

What time is it?

It’s infusion time!!

Every Sunday i infuse life saving immunoglobulin for an hour to keep me healthy.

In winter I line this up for the Strictly Come Dancing results. It’s a great excuse to do nothing and I know without it I’d be really ill.

People donating plasma and blood are really saving lives so if you can donate and don’t then decide today that you will.

Accessibility on Holiday

10 years ago I decided I wanted to celebrate my 30th birthday at Giraffe Manor. 5 years ago it was discovered my cerebellar was atrophied and 2 years ago my ataxia started in earnest.

So we had to put more effort into planning my dream. Giraffe Manor has one wheelchair accessible room so once we decided to go sooner than my 30th we booked the room and arranged the rest of the holiday around it.

Our biggest thing was making sure the hotels were wheelchair accessible for me and for this reason we used a travel company who said they had the knowledge to ensure we stayed in hotels that suited me.

Arriving at our first hotel, a lift took me up to the lobby and everything was wheelchair accessible except for our room which had a bath and not a walk in shower. If you’ve ever met someone with ataxia you will know they cannot stand in a bath to shower so I resigned myself to strip washing for 36 hours.

The next morning I discovered mum and dad’s room had a shower so spent breakfast happy in the knowledge I could get clean. Wheeling to mum and dad’s room we discovered that their door way was not wide enough for my chair. Luckily I can still walk short distances but if I couldn’t I’d have been stuck not being able to shower.

Overall the accessibility at the Ole Sereni was lovely and I really appreciated that the staff always asked before pushing me as a lot of people just push me without asking which is highly irritating and makes me feel really helpless and lacking in independence.

During the week we had a lovely guide called James from Southern Cross who was so helpful and meant my first holiday with Wilbur (the name of my wheelchair) went without a hitch.

Giraffe Manor was as incredible an experience as I had hoped with such helpful staff. My amazing friends ven arranged a surprise photoshoot and the help I received during this was incredible with a chair even being bought out so I didn’t have to be photo’d in Wilbur.

On the last day at the Manor I had the pleasure of meeting one of the general managers who listened to my two suggestions of a non slip mat and hand rail in the shower but these being my only comments for the two night stay was pretty incredible and the kindness of all the waiters and staff more than made up for these two things.

Nairobi (253).JPG — Some of the Giraffe Manor staff who made our stay amazing

The accessibility at our final hotel was appalling. It was not the hotels fault but the travel companies as they were in charge of finding us suitable hotels. The entrance to the hotel was down a flight of steps which I cannot do so James had to take us round to the “wheelchair entrance” of the hotel. This turned out to be the service entrance and involved getting the chair over a sewage grate, down a steep uneven slope and along the back entrance to get in the hotels back door.

An hour after we should have been able to check in my mood had dropped as we sat in the bar unable to go to our rooms and this really should have been a warning to me for the rest of our stay.

Having finally got into room my bad mood continued as we once again discovered that the chair couldn’t get into the bathroom and the lip of the shower was so low more than a two minute shower caused flooding across the whole room turning the bathroom into an ice rink which for a girl who is already unsteady on her feet was appalling.

So we decided to explore the hotel in attempt to boost my mood. I really wish we hadn’t. I’ve bullet pointed the issues to save time.

The only way to get the wheelchair to the restaurant for breakfast, lunch and dinner was through the garden as the inside route involved a flight of stairs.
The special restaurant we wanted to go to on the Saturday night was up a flight of stairs so I couldn’t get to it.
The loo in the restaurant was up 8 steps so I was taken out to the pool loo.
Dessert was up a level so my amazing friends and family had to get me pudding
The sofas were up a level so I couldnt easily get to them to relax.

A combination of foul mood and torrential rain led to me and my friends getting room service Thursday night as I would have got soaked wheeling through the garden.

This experience along with the staff telling me off for wheeling myself in my chair and just taking over led to a not great last few days.

On Sunday morning I asked for the manager to come and see me. An interesting ten minutes later she had reassured me that the refurbishment they were currently doing was to make the hotel wheelchair friendly with a new entrance, special wheelchair rooms, loos etc so I will be heading back to Serena Hotel to see how it has improved.

Hopefully this post will make you all realise how important accessibility factors are to those of us who cannot run, jump or even walk.

However even with these issues I had an amazing holiday thanks to mum, dad, Siobhan, Tammy and James.

Neuropsychology

Today I went for a neuropsychology appointment to check my cognitive function as my memory has worsened as my ataxia progresses.

The problem is I haven’t had this test before so can’t compare the results. Overall the results were good with a few areas showing a reduction in ability but the doctors don’t know if these areas have always been deficient or whether it is recent.

So I’m having to go with my own knowledge and that of my families that my memory has reduced in ability and I’m not storing information as well as when the ataxia did not affect me.

So I will carry on and try not to multi task as like a man I can’t anymore!

So one thing at a time and the next thing is eating a big slice of cake!!

Absent Minded

Over the last few years as my ataxia has got worse my memory has also declined. I regularly forget names, numbers, day to day things and turning off the hob.

As the weather cools I thought it would be nice to make some soup and spent hours simmering chicken bones, garlic and celery to make a nice stock. I then added swede, carrot and potato for a lovely veggie soup.

Leaving it simmering on the hob I went and sat down promptly forgetting about it and setting a timer. Having fallen asleep I was abruptly woken by the smoke alarm so leapt up, fell over, staggered to kitchen, fell over, turned off hob, fell over, turned off smoke alarm and collapsed in a heap on my sofa.

Burnt veggie soup

If anyone wants to bring me homemade soup they can!!

Welcome to my blog

I’ve lived my entire life with a rare disease and now I’m living with a second one. Growing up the hospital was my second home and I felt it was time to share my story. Over the coming days/weeks/months and years I will slowly be sharing parts of my life that have shaped how I live and manage.

This blog is not to make you feel sorry for me but to raise awareness of rare and genetic disorders. Raising awareness leads to better understanding and treatment from others in both a medical capacity and a day to day capacity.