2021 drama

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.

Mental Health Awareness Week

This week is mental health awareness week and after the last year and a bit of the pandemic mental health is more at the forefront of peoples thoughts than before.

Much has been spoken about the mental health issues arising from lockdowns, being inside and restrictions on day to day activities but the mental health impact of lockdown lifting and people being expected to resume day to day activities cannot be ignored.

For so many people who have been shielding due to health or age for a year, jumping straight back into being sociable, sitting in pub gardens, going shopping etc is a huge and often scary step. I personally have not been into a shop for a long time, have no desire to go into a supermarket for several months still and as for sitting inside a pub the thought horrifies me.

Mentally not everyone can jump straight back into the “norm” and to expect them to will impact their mental wellbeing.

Let everyone move at their own pace!

There are some brilliant resources online to help with mental health

Mental Health Foundation http://www.mentalhealth.org.uk

Rethink Mental Illness http://www.rethink.org

mind http://www.mind.org.uk

Mental Health UK http://www.mentalhealth-uk.org

Rare Disease Day 2021

So it’s been an odd year but I can’t let rare disease day go by without a post.

There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world, each supported by family, friends and a team of carers that make up the rare disease community.

Rare diseases currently affect 3.5% – 5.9% of the worldwide population.

72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.

70% of those genetic rare diseases start in childhood.

The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also the need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.

As mentioned, due to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.

A disease defined as rare in Europe when it affects fewer than 1 in 2,000 people.

So not all my conditions are rare:
Crohns – affects 1 in 650
Arthritis – so it’s never been fully decided which type I have but it is suspected it’s Psoriatic Arthritis – 0.6% of the UK population.

The “HowRare” Ones:
Primary Immune Dysregulation Disorder – unknown/
Ataxia Pancytopaenia – about 25 people worldwide reported in literature but incidence is increasing very slightly.
Myeloid Dysplasia Syndrome – About 4 per 100,000

All these conditions combined together result in an incidence that is non existent. So as far as we know I am the ONLY one in the entire world with this combination of conditions.

So for myself and others I support RDD

48 hours on from Pfizer jab

So on Monday I had my first Covid-19 jab, it was Pfizer and I have NOT had any issues from it. My arm was sore where the jab happened but other then that I’m fine.

The reason I wanted to blog about this was all the misinformation flying about mainly from anti-vaxxers.

The only side effects I have ever heard about is a temperature and a day or two feeling fluey which I feel is a fair effect from a potentially life saving injection.

People like me who are antibody deficient may very well not respond to the vaccine as wanted, hopefully our T-cells will produce some response but as we do not make our own antibodies we will not get the full protection others may so it is important that everyone offered the vaccine has it to increase herd immunity and help protect those who can’t have it or won’t respond to it as well.

I’ve had to reassure many people that the jab is fine and feels just like a flu jab. I was in and out of the centre in 25 minutes.

So if your offered it PLEASE PLEASE PLEASE have it.

3 years and 1 day

I started blogging 3 years ago. I haven’t blogged as much as I would like but I hope it’s been informative.

Let’s face it 2020 has not gone as anyone planned and who knows when it will be back to “normal”.

After several weeks of feeling mentally rubbish and hating everyone I realised I couldn’t snap out of the mood so increased my antidepressants a week ago which reaffirmed mine and many others thoughts that this pandemic is leading to a mental health crisis.

Whilst I understand at the moment the government is focused on the physical effects and spread of Covid-19 I am concerned at how the future response to this mental health epidemic will be managed.

The go to for mental health treatment seems to be drugs and I am all for them in many situations. Many people don’t understand how helpful these drugs can be but there is another option I believe strongly in.

Talk therapy should not be underestimated, it gives everyone a chance to chat through what they are feeling and learn they are not alone. This view was confirmed by my hairdresser; almost everyone who goes to see her talks about what they have been up to, how they are feeling, what’s annoyed them. If ever there was proof talk therapy is beneficial and people are widely using it this is it. It almost makes you wonder whether hair dressers should receive a therapy fee.

I understand the major restrictions at the moment of face to face counselling but with so many digital platforms available for online chats would it not be worth to have more group counselling session?

Counselling should be available to those affected directly by Covid-19 and for those who have not had it but by starting to treat it now it will prevent an epidemic later,

International Ataxia Awareness Day

It feels like a life time ago I was finally told they thought they had a diagnosis for me; Ataxia Pancytopaenia. My amazing Immunologist thought the symptoms sounded exactly like me but the trouble was that nowhere at the time was able to do the test to confirm it. At the time there was only about 25 people in the world with the condition. This was 5 or so years ago.

Finally the gene mutation was identified, a mutation of SAMD9L and a new diagnosis which explained so much. Unfortunately due to the rareness of this type of Ataxia no progression predictions can be made and it really is one day at a time.

To walk a short distance now I need my stick on one side and someone offering me an arm on the other whilst for long distances I need a wheelchair. If I’m going from my house I use my mobility scooter, which the dog runs along side on walks.

The other day I was picking up dog poo in the garden, lost my balance and ended up sitting on the grass. I nearly sat in dog sh!t and if that doesn’t sum up life with ataxia I don’t know what does!!

Today is about raising awareness of this super rare condition. Ataxia affects only 10,000 people in the UK but for those of us with it it rules our life. Due to my various conditions I’ve always suffered from fatigue but it’s nowhere close to the fatigue from ataxia. I can generally be awake 2 hours before I need to sleep for 2 hours and by 7pm I’m in bed as my balance is too bad to stay up so my life has definitely changed since my diagnosis and progression.

So raise awareness, support anyone affected and try to understand what they are going through even if you can’t.

6 months on

6 months ago I landed from an amazing 2 weeks in South Africa and went straight into shielding and then semi shielding when the official guidance to shield ended.

At first shielding was tough and at times I did find it hard, I’m not very good at asking other people to do things for me so having to rely on others to get prescriptions etc was difficult,but overall the whole not being allowed to go out thing suited my ataxia pretty well.

I had a reason to sit on the sofa the whole time, the dog got even more love than normal (if that’s possible) and I saw family and friends through the window. Goodies were left for me by my front door and I gained a ridiculous amount of weight. Compared to catching Covid-19 and being on a ventilator it was ideal.

Yesterday Boris announced new restrictions and people are already moaning about them but my opinion is that if it’s needed to curb illness and death. Yes it will hurt the economy but compared to a high death toll I think this is preferable. What effect would the deaths of hundred of thousands have?

Not everyone will agree with me, those that do, may not voice it but that is my opinion.

The major new restrictions have caused issues with many who feel the last 6 months have been unfair on them because being limited to going out less, not being able to out for dinner, to the gym, go to new baby groups, go shopping, spend time with others. I however am fed up listening to their complaints, they’re lucky not to have chronic illness and that they did not have to shield

I have always said I don’t mind people feeling sorry for themselves but DON’T compare your minor ailment to mine but in this situation people need to stop complaining.

So life has been different the last 6 months and will be for the forseeable future but let’s all man up and do what we can to help people stay alive.

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.