The UK versus South Africa

As many of you know I returned from South Africa on Sunday and here is my experience of what the countries were doing for COVID19.

Our flight to Capetown was uneventful with my wheelchair being delivered straight off. We then encountered immediately after disembarking a queue where every passenger was having their temperature checked for one of the covid19 symptoms.

This definitely put me at ease as it was an indication they weren’t ignoring the virus even with the low number of cases in South Africa at the time.

On the 15th a major public address from the South African president announced they were stopping those from high risk countries (UK) entering the country, shutting some border entries and ports.

It was only a few days before we left that major changes were implemented, with no alcohol to be sold after 6pm, restrictions on how many people can be in a restaurant, restaurants shut after 6 and no alcohol to be bought or consumed in public on public holidays.

Arriving back in the UK on 22nd March, no temperatures were taken, their was no social distancing at Heathrow and to be honest apart from announcements on the plane no acknowledgement was made. The only noticeable announcement was from our cabin crew as passengers had taken loo roll from the planes bathroom making me wonder what is wrong with our public and especially glad I was wearing an N95 mask as obviously chaos was about to rule.

I’m now self isolating for 12 weeks due to NHS guidelines and if I do have to open my door I wear my mask.

Everyone should do their bit by staying home and keeping their distance.

Visiting Gate69 in a wheelchair.

A text a few weeks before our Capetown trip my amazing friend Tammy told us she had booked us in to a drag/cabaret theatre evening but that the show was upstairs but no problem as the guys would carry me up. Cue minor panic as I hate being carried in my wheelchair but my wish to see the show won over.

I really shouldn’t have worried!!!!

From arrival I didn’t feel like it was causing a problem as they carried me up the entrance step and lip before asking me if I wanted to be carried to the theatre before or after everyone.

So after everyone else went up two gloriously hunky men carried me in my chair to my seat.

The show was hilarious and I laughed so hard and the girls were so lovely before 2 yummy men carried me back down again when we were ready to go.

Many of you know the fear of letting others be in control of your wheel chair and causing extra work for people so I cannot praise the staff at gate 69 in Cape town enough for making me not feel an imposition in my chair.

More places should do more like this to assist people without them feeling like they’re causing a problem. Many UK places should take note. Gate 69 you’re amazing!

Don’t Rush

This is something I’ve learnt over the last few years. Trying to rush when you have ataxia does not work, it will lead to further loss of balance, tripping up and falling over. Once when the lovely dog walker came the dog rushed back to the sofa so I went to rush and get her. This resulted in me tripping, hitting a cupboard and falling to the floor where I just sat in shock.

So physically I can’t rush, I have to move slowly, take my time and think about what I’m doing.

Last Friday the dog threw up on my lap and in the sofa. In the old days I would have freaked out and rushed to clean it up but nowadays I think about how to handle things so I just sat with vomit on my lap with the following thought process and action

Eww the dog just threw up on me
Ok it’s on my jeans and the sofa blanket
I need to get off the sofa without touching the vomit or spreading it as well as getting the dog off without her trying to eat it.
Get the dog outside whilst stripping the blanket off the sofa and putting it in the garden as my balance was not good enough to deal with it that evening
Get the dog inside, remove my slippers.
Get upstairs and into pyjamas taking care not to get vomit on anything else.
Put jeans in washing machine to get clean.
Put a new blanket on the sofa.

These thoughts and actions may only take the average person a couple of minutes but it took me 15; doing everything slowly and carefully and not rushing.

If I go down the stairs slowly and am not hurrying it really p****s me off when the person I am with tells me not to rush. I can’t rush. If I try to chances are I will fall and injure myself.

So I take my time, do things at my speed and DO NOT RUSH!!

PIP review for Chronic Illness

Last week I had a PIP review to see whether I was still entitled to Personal Independence Payment. This is despite most of my conditions being lifelong and chronic along with my ataxia being progressive.

The anxiety this review causes as the possibility that my benefits may stop is immense and causes ridiculous amounts of pressure. I’ve always said we are lucky to live in a country that helps its disabled and I do think reviews are useful except for those with life-long conditions and those that are going to get worse not better.

Which is why I was so pleased to see this statement https://www.gov.uk/government/news/government-to-end-unnecessary-pip-reviews-for-people-with-most-severe-health-conditions

and am supporting any petitions to scrap reviews for those with life-long conditions.

Myelodysplasia Syndrome Awareness

Today is Myelodysplasia Syndrome Awareness day so I thought I’d tell my story to diagnosis.

A year ago I got hyper. Really really hyper. To the point I decided I was going to South Africa in the new year to see my favourite band. So I ordered a new passport, booked my plane tickets and was just about ready when bamn!! I got ill.

On 4th January I had bloods done at the hospital prior to a drug infusions and on the Monday I got a phone call to say my platelets had dropped to 55!! Nightmare ensued with multiple phone calls to multiple consultants about what to do.

Should I be started on steroids, be admitted to hospital, what course of action should be taken. A referral was made to Haemotology and I was told I couldn’t fly so my holiday was cancelled. After 30 years I should have learnt not to get hyper as I always get ill.

A week later my platelets dropped to 27 and having slept through a million phone calls I woke to mum coming in the front door and telling me they wanted to admit me to hospital to keep an eye on me. 1st year doctors came to my hospital to take down my medical history and left looking scared but with the one request from me to not put me on steroids as I was due to see the Oxford haemotologist later that week.

At 10pm a nurse came in to give me steroids as the doctors had not paid attention to my one request. They also gave me tranexamic acid. The next day I saw a variety of consultants and requested they discharge me so the following day I could go and see the Oxford haemotologist I had been urgently referred to. A visit from the Basingstoke haemotology consultant who agreed to my discharge on the basis I continue on the steroids and tranexamic. So happily I was discharged to Kintbury with Minnie ready for my trip.

I then saw Dr.Quek at the Churchill hospital in Oxford and as I already had a diagnosis of Ataxia pancytopaenia it was suspected I had Myelodysplsia Syndrome (MDS) so was sent for a Bone Marrow Biopsy for confirmation.

Having had a bone marrow biopsy before I knew it was going to be painful but their was another guy their who made it unbearable as he didn’t want to go home but wouldn’t shut up about his diagnosis. With mum waiting in the hall the doctor stuck my hip with a needle and started getting all the bits he needed to send off to various labs.

A few weeks later it was confirmed I had low risk MDS and needed constant evaluation to check my levels. They’re currently 180 so I’m happy.

I have also met a haemotologist in Basingstoke who specialises in MDS so I have a local contact and am carrying on as normal although some days the fatigue gets immense.

Once again the doctors can’t predict how the MDS will progress so I just have to wait and see. MDS normally affects those over 70 and my doctor said because of that it can’t be guessed as to whether it will get worse or stay the same.

If you want to learn more about MDS then do please visit https://mdspatientsupport.org.uk

Help raise awareness

Today is International Ataxia Awareness day 2019.

A day to raise awareness of a neurological condition that they think I have had my entire life.

A condition they generally think of as the love child between MS and Parkinsons.

A condition that is the reason I now drink from a bottle (mum witnessed this reason first hand the other day as I lost my balance, flung my arms out accidentally throwing my bottle into the air and over the back of the sofa before it landed on the floor. Can you imagine the mess if it had been an open glass?)

I remembered last night a cousin of a cousin spending an hour trying to teach me to catch when I was about 9 but that ability after an hour of trying to catch soon left me. At school I was incredibly uncoordinated dreading P.E unable to hit or catch a rounders ball, play tennis, struggle with hockey and completely and utterly unable to balance on the balance beam during gym.

However whilst ataxia is a daily struggle trying to stay upright and balanced and we don’t know what the future holds I carry on and am doing some things I never thought possible (Giraffe Manor, Alaska etc))

As my type of ataxia is so rare we don’t know how it will progress

Currently I slur my words, choke on nothing as well as food and drink, can’t balance or co-ordinate my walking or even attempt to skip, run etc.

One of my most frustrating symptoms is the ability to not “find” the word I want to say resulting in me saying “goodbye” when I mean “hello”, calling polar bears, snolar pears for a month or just getting really angry searching for the word in my mind.

I currently don’t have constant tremouring or shaking of my body, the inability to walk at all, dizziness or uncontrolled eye movements (although I used to).

So we don’t know what the future will hold but with my doggy by my side as well as friends and family I shall carry on for the time being.

Accessing Rocky Mountaineer

I blogged yesterday about how I had found the accessibility so far in Canada and I touched on the amazing staff on the Rocky Mountaineer who took me up and down in the elevator for breakfast and lunch as well as bathroom breaks.I wanted to introduce you to our amazing hosts who really have gone above and beyond to help me.

First up is Aimee

She and the others have really been amazing but she does definitely stand out in her thoughtfulness (she also laughs at dad’s jokes so we don’t have to which is perfect for the rest of us.

Second is Kyle

Along with Aimee, Kyle spends a lot of time in the dining cart helping keep us fed and watered (wined in mum and dad’s case) but again he’s been so helpful and whenever I got brought down for food early he and Chase would always point out things of interest so I didn’t miss out.

Next up is Chelsea

Chelsea has provided us with snacks, drinks, facts as well as keeping morale up during the waits. Again she laughs at dad’s jokes and humors him.

Finally is Darren

As a South African I loved him from the start even if he has lost his S.A accent. Again he provided us with drinks, snacks and informative facts along the 2 day journey.

All 4 of these amazing people have been so helpful and put me at ease with nothing being too much trouble, resulting in me enjoying the trip rather than worrying.So to them and all the Rocky Mountaineer staff all I can say is thank you for a memorable trip and helping make a rare girls dreams come true.

Accessing Canada

I hear a lot of travel horror stories from people with impairments and disabilities so having been in Canada a few days so far I thought Id write about my experience.

We arrived at Heathrow terminal 5 on Tuesday and checked in with no problem and i got to stay in Wilbur (wheelchair). We did unfortunately encounter a complete jobsworth at security who has an issue with my immunoglobulin but his manager was brilliant and soon we were through security and after a bit of chilling we made our way to our gate to be ready to board. On leaving our seating ready to board dad forgot my immunoglobulin but luckily the other passengers yelled at him. That was the last time he was in charge of it!!

I was able to stay in Wilbur until the plane door and the air hostesses etc were so helpful it was lovely. They stored the feet of my wheelchair and immunoglobulin in a cupboard and Wilbur was taken to the hold to be returned to the plane entrance on landing.When we landed the air hostesses told me to stay seated and they would let me know when Wilbur was waiting for me so I didn’t have to stand for long and we got to use the express security line as I was in the chair.

Having flown into Calgary we drove to Banff and our hotel the Fairmont Banff Springs. Brilliant hotel with ramps instead of steps in a lot of places but I still had a few issues I will be writing to then about.Neither the bar or the check in desks or concierge desks had any lower wheelchair user parts to them so they were far above my head, if I had had to sign something I couldn’t have.

In the bedroom they had made up the sofa bed for some reason so my wheelchair could not get past so we had to put it away which wasn’t too big an issue but it was half past midnight at this time. I’m lucky in that I can still walk short distances but those who cannot leave their chairs would have been unable to get past or transfer to the bed which was really high.

The bathroom had one rail by the loo and two in the shower. Reception provided me with a shower chair when asked but I still struggled with the lack of rails and the shower curtain did not reach the floor so the floor of the bathroom got wet and slippery so I used a spare towel to help me get from the shower back to the bedroomThursday morning we were booked to board the Rocky Mountaineer and as most travellers in wheelchairs will tell you I was apprehensive but I really needn’t have been.They had a lift to get me onto the train and once I was they had another lift to get me up and down to the top deck. As breakfast and lunch was downstairs I used this lift several times and I have to say it was incredible service.

Nothing was too much trouble for the lovely staff who helped me and I never felt like an inconvenience needing assistance like other places and people can make you feel.

It’s only been a few days but the service for those with Mobility Impairments in North America seems better in so many ways than in UK but we shall see if that continues.

Things it could be…

MS, Lupus, Parkinsons, Motor Neurone disease.

6 years ago today a Neurologist came into my room to tell me the head MRI that had been ordered by an Endocrinologist who had noticed I had Nystagmas was abnormal. She gave me a list of conditions it could be but said she didn’t really know and that they’d send me for a second MRI with contrast to check all the vessels etc and that she’d be back the following day to discuss it with me.

I never saw her again and it was my Immunologist who finally diagnosed my ataxia and the genetic abnormality causing it.

Growing up I could never hop on one leg, ride a bike or catch a ball. My ex pointed out when walking up curbs I always lifted my foot double the height of the curb to make sure I didn’t trip up it. When I was 21 I could feel my balance worsening and joked with my flatmate at the time that it was because I was going out clubbing and dancing less than I use to.

As I got older I attempted dance classes with ballroom, latin american and specifically Salsa and found them to be more and more difficult so the ataxia does make sense looking back.

I refused to see Basingstoke neurology again and instead saw a wonderful Neurologist in Oxford who eventually referred me to my current Professor after my amazing Immunologist read a paper on Ataxia-Pancytopaenia and thought it fitted me completely.

So after exome sequencing, the mutation SAM9D-L was found. Unfortunately it’s so rare it can’t be predicted how I will progress but losing my balance sideways is totally boring and irritating.

I see my professor once a year although I can get in touch with him as needed. I’ve joined a load of Ataxia groups on facebook and groups regarding wheelchair holidays and accessibility.

So six years ago my ataxia journey started properly and having a name for the stumbling, losing balance, choking, speech slurring and inability to walk makes it easier to handle but walking normally would be even better as my body had made too good a friends with the floor and walls.

Steps….

So everyone is talking bout the death of the high street and as much as I try to shop in my local stores I am a big user of Amazon for several reasons.

Yes it’s quick and easy and with Amazon Prime I can get most items delivered the next day, however the main reason I use it is the inaccessibility of so many shops. Steps everywhere is the first and biggest prevention and is a prohibitor not just for those using a wheelchair or mobility scooter but those who still walk with sticks and crutches but find steps a big problem.

So many high street shops (mainly independants) have at least one step at the entrance which immediately means I can’t even consider going in to them. This inaccesibility leads to me ordering online instead or going to a shop which I can get into.

At least these shops identify to me quickly they are not suitable for me to go into even if they are missing out on my business.

Worse than this though is the shops that make you think they are accessible but once you enter then you realise they aren’t and even trying to get out you know it’s going to be difficult often resulting in knocking into items etc.

For me the worst experience of this was in an H&M where there was so little gap between the rails that I couldn’t look at any of the clothes and on trying to leave, my wheelchair sent many items of clothing to the floor.

Shops nowadays also try and fill every bit of floor space with stock so it may look accessible until you are in there and the end of a shelf which you’ve identified as a perfect turning spot has a load of extra stock making it completely impossible to get out.

Payment tills are also a problem as this is when shops try to upsell things you don’t really need. This is fine but means there is limited room for wheelchairs and scooters to get past and if there is a customer between the til I need to get to and me then all hope is lost as there is rarely enough room.

This post if by no means meant to be a moan but an explanation as to why so many of us with mobility issues do so much of our shopping online, it stops immense worry and inability to access shops.