It’s not over

So many people seem to think the risk of Covid-19 is over, but it’s not.

Social distancing is still enforced, (1 metres plus),masks must be warn on public transport, in hospitals and shops. Personally I think they should be mandatory in offices and should have been made compulsory back in March when lockdown was introduced.

Having been shielding for 4 months I formed a support bubble a few weeks ago with my parents but having been there for 2 nights last week and a contacts husband since testing positive it’s made me think I’m not ready to spend nights away yet.

Last week I had an appointment with Immunology who said whilst they were happy for me to end shielding they did ask me to be very careful and if it’s a choice between a shop and a walk then opt for the walk.

Quite honestly it scares me how relaxed so many people are being. Not social distancing, not believing there’s a risk, basically not being careful.

After the air bridge with Spain was closed and people now have to quarantine for 2 weeks upon returning there has been a lot of complaining. Personally I think anything to prevent the UKs infection rate from rising is a good thing although I do understand why it’s frustrating for people but anything to help stop rates and deaths rising is overall worth it.

So I will still be self isolating as much as possible to reduce the infection risk!!

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.

World PI Week day 2

Today is day 2 of World Primary Immunodeficiency Week raising awareness for those living with Primary Immunodeficiencies (PIDs).

Having lived with this for 32 years it’s a cause I feel strongly about.

These are a group of over 300 different conditions that affect how the body’s immune system works.

People affected by PIDs have parts of their immune systems missing or not working. This leaves them with reduced or no natural defence against germs such as bacteria, fungi and viruses, which surround us everyday.

The consequences are that people with PIDs get infections more often than is normal; they can take longer to get better when they have antibiotic treatment and even then the infections can keep coming back.

This susceptibility to infection is one of the most common symptoms of PIDs. Often PIDs are diagnosed early in a child’s life. However, signs of immunodeficiency can also occur in older children, teenagers or adults.

Having a PID can also lead to other illnesses and life with or without these can be concerning.

With the current Covid-19 pandemic it is an extremely worrying time for everyone and especially so when you have a PID.

Depending on the type of PID a person has and their other conditions many patients may be classed as “extremely vulnerable” and have been advised to “shield” for at least 12 weeks only leaving their homes for medical procedures that are necessary.

Being on immunosupression, having myelodysplasia etc means I’m in this extremely vulnerable category and so I’m not allowed to leave the house except for medical procedures as stated above. Luckily I have so many amazing friends around that I have plenty of people to collect prescriptions for me, get food etc and due to my status my amazing dog walker can still take my gorgeous Minnie out for a walk.

My sister is only 15 minutes away and has done some “essential visits” to me to get/deliver bits but we then chat through the window.

As they are over 70 my parents are classed as vulnerable and are not meant to leave their house so we speak on the phone everyday and introducing them to Zoom has been amazing. Other patients are still “vulnerable” but do not need to take such extreme measures but I reckon if you speak to most PID patients they are shielding as much as they can.

The issue with this is that getting bits if you have no friends and family around e.g food delivery shops. We all know how difficult it is to get a food delivery slot but for those more susceptible to illness complications and no-one around to help them it is a nightmare leaving them with hardly any food or ways to get any.

The one thing this pandemic has shown is how much community spirit there still is around, with groups of volunteers being set up to help those in need. Even I have had 2 calls from the Red Cross to check I am okay and aside from my ataxia stopping me from hoovering the stairs I am.

So what I’m trying to say is do your bit to help others even if you don’t know why they’re having to do what they do, if you have a food delivery slot ask your neighbours (especially the vulnerable ones) if they want to add anything to it and of course don’t forget to clap for carers and keyworkers tonight.

Chronic Illness, Covid 19 and a Hospital visit

So today despite shielding for at least 12 weeks under NHS orders, I had to go to hospital for my Infliximab for my Crohns Disease.

Like many patients I freaked out about this and did everything I personally could to avoid going in, even offering to pay to have a private nurse come out to my house to administer the drug to me.

I ended up having to go in to the hospital for my infusion but they did put me in a side room for it so off I set with my mask and gloves.

I absolutely commend the work of the nurses at the hospital. Before being admitted to the unit your temperature gets taken and you have to fill out a form as to whether you had any Covid symptoms.

On leaving the hospital a patient was bought from A&E to go upto ICU. Security cleared all the halls making all people stand behind doors so the patient could get to ICU quickly.

After that I left the hospital quickly and scooted home where I threw away the gloves I wore, put my clothes in the machine and had a hot shower.

So if you have a chronic illness and have to go to hospital at this time just be sensible.

Shopping during COVID-19

Grocery shopping during this time is challenging.

Those of us classed as extremely vulnerable and vulnerable are being asked to self isolate. My parents are classed as vulnerable and I’m extremely vulnerable due to all my health concerns. Our biggest challenge is we are not meant to leave the house to buy groceries but all the delivery slots are booked up.

So if you have not been asked to self-isolate please don’t use up these slots by booking a delivery as you are depriving someone who needs it.

If you do book a delivery at least ask your vulnerable neighbours and friends/family if they need anything you could add to the order. You can then leave it on your/their doorstep.

Even those vulnerable should be asking any other vulnerable contacts if they need anything in the delivery. In my Friday delivery I am ordering bits for my neighbour (extremely vulnerable) and my parents (vulnerable).

I do understand how mental health can be stopping people going to the shops but in this case ask a friend to go for you, explaining to them why you can’t go. I urge you NOT to book a delivery unless you really have no other option.

If you are on the vulnerable list contact friends and family so you have people you can ask for help. Personally I have set up a WhatsApp group of local friends who can help get prescriptions (and probably eventually milk). Telling them in advance gives them a heads up and asking lots at once increases the likelihood of someone being able to help asap.

Stay safe and well at this time and distant.

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