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.
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.
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.
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.
How Rare? 