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Covid and Confusion

There’s a lot of unsettlement in the clinically extremely vulnerable at the moment especially amongst the immune compromised and suppressed.

Whilst the news was focusing on the cabinet reshuffle, a majorly important change occurred. The government ended the shielding programme. So many people are saying that as shielding was stopped back in April it doesn’t really affect us but I can assure you it does.

The governments decision to do this makes those of us affected feel unsupported. Many immune deficient patients have made NO antibodies to Covid despite having had the virus or not and 2 vaccinations. Those on immuno supressing drugs have often only made a small amount of antibodies so don’t have as much protection as the majority of the population. For this reason it is SO important for others to get vaccinated and to be sensible. Anti-vaxxers are terrifying and many of us have just cut anyone who refuses to have the vaccine from our lives.

Going to the supermarket and not one other single person wearing a mask is horrible, any indoor setting where it seems members of the public don’t care about others makes the extremely vulnerable worried so we are still taking precautions.

Until 2 weeks ago I hadn’t been to a supermarket for 18 months but I decided I need to pull on my big girl panties and go. I went in on my mobility scooter, wearing a mask and felt like an alien as no one else was. I managed to be there for 5 minutes before I had to leave as I didn’t feel safe and decided to continue with online shopping.

The second thing to cause confusion is the 3rd primary jab, which is not the booster. This jab is for

Individuals with primary or acquired immunodeficiency states at the time of vaccination due to certain conditions
Individuals on immunosuppressive or immunomodulating therapy at the time of vaccination
Individuals with chronic immune-mediated inflammatory disease who were receiving or had received immunosuppressive therapy prior to vaccination
Individuals who had received high-dose steroids (equivalent to >40mg prednisolone per day for more than a week) for any reason in the month before vaccination.

The problem with this is the majority of patients do not know about the 3rd vaccination and were calling it the booster and to make it worse even the GP surgeries don’t seem to know the difference so it is down to hospital consultants to identify and write to GPs to tell them which patients need it. Obviously the big issue is that there is no reason why patients who did not make antibodies to their first two vaccines should make them to the third.

However it’s not all bad news. Ronapreve the monoclonal antibody to treat those with Covid has been approved for use in the most vulnerable.

“The new treatment is expensive and priority will be given to those patients at greatest risk of becoming severely ill.

It will be offered to those over-50 without the necessary antibodies, and those aged 12-49 who are immuno-compromised – for example those with certain cancers – who struggle to mount an antibody response, either through being exposed to Covid, or from vaccination.”

So good news for those of us who haven’t made antibodies but if you haven’t yet been vaccinated what are you waiting for, not only will you be protecting yourself but you’ll be helping protect others too!!

2021 drama

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So 2021 has been interesting so far, apologies for not blogging for so long but infections galore have prevented me doing anything.

Due to my ataxia I regularly aspirate and because of my immunodeficiency it often turns into a chest infection. Due to the regularity I’ve been aspirating I’ve had a chest infection for months, every time it seems to get a bit better I aspirate again and a new infection starts.

On top of all that at the beginning of July I found out I was in the 40% of immuno comprised people not making an antibody response to the Covid vaccines.

This was followed by my chest infection getting so bad I was admitted to hospital with a diagnosis of aspiration pneumonia. So IV antibiotics and finally a chest CT showed a weird infection they’d never seen before.

There was also a small matter of a heatwave at that time and my side room was like a sauna. I’d nicked dad’s Dyson fan and even that was struggling in the heat and the average temperature in my room was 26 and really humid.

The other issue I had been admitted with was an incredibly sore throat hurting to swallow etc but the soreness was too far down my throat for a normal look to see the problem. I’d even rung my GP on the Friday before I was admitted to ask for liquid paracetamol and the guy I spoke with ended up providing me TABLETS which I could NOT SWALLOW. An emergency referral to ENT and a camera down my throat saw me diagnosed with Supraglotitis which can be life threatening so a jab of dexamethosone and different IV antibiotics fixed that.

Months of antibiotics has left me with oral thrush as well so a mouth wash and a 2 week course of Fluconazole sorted that.

Finally I was discharged and went to my parents to recuperate and a week later I stopped antibiotics and within days the infection was back.

On top of that I managed to develop a foot infection which has not gone despite 3 weeks of antibiotics so I’m now waiting on a referral incase its osteomyelitis. My GP surgery excelled once again last week when I sent another photo of my infected foot and they replied to say they’d ring me in 2 weeks!! So my awesome Immunology team took charge and kicked my GP surgery up the backside resulting in an appointment yesterday and a referral to Orthopedics.

So July and August have not been great but hopefully everything will improve in September.

Minnie has of course enjoyed me reecuperating and the instructions for my foot to sit on the sofa with it up.

Lockdown and stop whining

I have read so many posts and heard from so many people who are bored during lockdown complaining they are only able to go out for an hour each day. Well stop complaining, buck up and spare a thought for those of us with rare or chronic conditions.

Firstly most of us have received letters telling us we are either vulnerable or extremely vulnerable to getting a serious illness/dying from getting Covid 19. These are the underlying health conditions that you hear mentioned in so many news programmes. So we have been told to “shield”. This is of course each persons own decision but we are not meant to leave the house at all, not collect prescriptions or go to the shop for food so we rely on friends/family and online deliveries.

No going outside for an hour, no going on walks in the countryside, confined to the house and garden 24/7 except for when we have to make a necessary trip to the hospital.

Secondly the biggest side effect for many rare/chronic conditions is fatigue so even when the world is not on lockdown we are in our own way. We often don’t have the energy to leave the house. Personally I have been known to work out how long I can make my drugs last without having to go to the pharmacy as I’ve been too tired to go there, or to work out what else I can cook with so I don’t need to go to the supermarket to replenish stock (always have pasta and bacon available).

I am in a lot of ataxia facebook groups where a lot of affected people have joked that lockdown has had no effect on them as they were already locked down. Everyone underestimates the effort it takes for those with neurodegenerative and other chronic conditions to leave the house.

I am of course grateful to so many people who have helped me so far including my neighbours, friends, family (especially my sister and brother in law) however making jokes about how we are having to ask for their help are really not appreciated especially for those of us who find it difficult asking for help and have really had to change during this time.

Tonight the prime minister speaks again but for those of us shielding it makes no difference how much lockdown changes for others as we are still to stay indoors.

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!!

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.

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.

The Need to Rest

The other night a friend asked me how many of the 24 hours in a day I rest to which I replied ’20’. Thinking more about it I think recently that was an understatement and it’s currently more like 23 with the final hour made up of cooking, going to the loo, getting ready for bed etc.

I may have the odd day where i sort and hang out the washing, go shopping, walk the dog etc but these are only on days i feel up to it.

I’m currently dealing with an arthritis flare up affecting my ankles, knees and wrists so resting is high on my to do list.

Today I woke at 9am and by 11am had fallen back to sleep on the sofa and slept for 3 hours.

Chronic illness means you need rest and pain makes it even more necessary, so that’s what I’m doing and what so many others have to do.

We would love to work but can’t, we would love to socialise more but can’t, we would love to do more in life but can’t.

So don’t feel sorry for us but also don’t judge us.

Being Rare for Rare Disease Day

Thursday 28th February is Rare Disease Day so in celebration I thought I’d tell you all about my recent diagnosis of a 3rd rare disease.

On Thursday 14th February I was diagnosed with Myelodusplasia Syndrome. A wonderful Valentine’s present.

In all honesty 2019 had been pretty rubbish up to this point with my platelets dropping horribly low and not being to fly to South Africa, being admitted to hospital and having to go for a bone marrow biopsy (not nice to have, I wouldn’t advise it)

The bright side of this diagnosis is that I’m currently low risk so will just be monitored at the moment with regular blood tests.

If you want to learn more about MDS there are two organisations that offer brilliant information; MDS Support Organisation and MDS Foundation.

Rare Disease Day is an important day day for us rare patients to bring a spotlight to rare diseases.

This year Rare Disease UK have created a campaign “illuminating rare diseases” a great chance for patients to share their stories and rare diseases.

EURODIS the voice of rare disease patients is also marking Rare Disease Day encouraging social media participation among patients.

With 3 days to go please support Rare Disease Day and the patients who cope every day with issues you can never fully understand.