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.

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.

It’s been a month

A month ago today was my last day employed. The fatigue got to much for me to manage to work even a little bit so I had to stop.

Those closest to me have been so supportive of my decision knowing how much I have struggled the last few months and how stopping work goes against all my beliefs and independence issues.

Others have tried to be supportive but missed the mark a bit with their comments.

So here’s something to remember. If those of us with chronic illness have to give up work it is not something we are choosing but is something we have to do to look after ourselves. We do not enjoy not having something to occupy our brains or distract us from how we are feeling.

IT IS A NECESSITY NOT A CHOICE

I was lucky to work for an organisation that let me work the hours I did but many part time jobs still require 20 or so hours a week which for a lot of people with chronic illness is too many. So before you judge us for not working or say how lucky we are, think about our entire situation.

Last day

Today marks the last day of world primary immunodeficiency week an official week to raise awareness of primary immunodeficiency but in reality those of us affected should never stop raising awareness amongst family, friends, healthcare workers and the public.

I have learnt quite a lot this week in that the anger some patients feel at having this condition outweighs the fact that we can receive treatments for many of the conditions and the benefits this treatment gives us.

I will always be thankful because i know without this treatment and the NHS I would probably not be here today.

Yes to be diagnosed with a rare condition (or 3) sucks but we are so lucky to live in the UK where we receive treatment for it and have access to specialists in the condition we have. Many countries have limited if any access to treatment and do not have Immunologists patients can see and therefore have to travel abroad just for an appointment.

When it comes to treatment and receiving infusions we are lucky to have the option to infuse at home. Until I was 7 or 8 my mum and I had to travel to Oxford every 3 weeks for my infusion meaning i had to take time out of school and mum work. Now I infuse at home once a week when suits me in a time window.

So what I’m trying to say is that yes it can be s**t but we are lucky to live where we live in the time we live.

Day 4

Today is the 4th day of World PI Week and it has been a little stressful.

Although I gave up work at the end of March I always said I would do the facebook for PID UK and unfortunately some patients took against one of the pictures provided by World PI Week.

The picture was of a patients personal quote about how much their life had improved on Immunoglobulin Therapy. Whilst I do not refute that many patients lives are not perfect health wise once they have started treatment I do not accept that no ones life is even slightly better on Ig replacement therapy once they have been diagnosed.

For a recap I have

Primary Immunodeficiency
Crohns Disease
Psoriasis
Arthritis
An exceedingly rare form of ataxia
Myelodysplasia Syndrome

and yet even with these conditions I feel lucky 90% of the time.

If I had been diagnosed with several of these disorders even 80 years ago I would probably be dead.

I could of caught several severe infections that could of killed me or bled to death from my Crohns.

Luckily I have an incredible team of doctors around me wonderful family headed up by my mum, dad and sister and amazing friends.

In my 31 years I have been taken off my infusions several times to see if my immunedeficiency had sorted itself out. Each of those times I was so ill and ended up in hospital and would have died had I not restarted treatment.

So no Ig treatment may not turn your life around if you are a PID patient but it definitely makes it better than if you weren’t to have it.

Day Two

Today marks the end of day two of world pi week so I thought I’d give you some facts and answer some questions.

There are nearly 400 primary immundeficiencies (PIDs).

They are genetic disorders and are NOT contagious (you cannot catch a PID from a patient whether you hug, kiss or sleep with them)

My particular PID has changed names over the years as science and medicine has evolved, when I was young it was just Hypogammaglobulanaemia, then it was Common Variable Immunodeficiency and then Primary Immune Dysregulatory Disorder and now since my Ataxia Pancytopaenia gene mutation was discovered the doctors don’t seem to know exactly what to call it.

I was lucky to be diagnosed as a baby to avoid some of the non diagnosed illnesses that late-diagnosed patients are affected by.

As the image above shows misdiagnosis and un-diagnosis are still massive issues and un-diagnosis can lead to serious health problems affecting a patients entire life.

PID patients are not currently covered by Medical Exemption so we pay for each of our prescriptions, although most PID patients have a pre-payment card to stop our prescription costs spiralling.

I do my infusions into my stomach (subcutaneously) whilst others do theirs into a vein (intravenously). I did infuse into a vein until I went to University and wanted the freedom to infuse at a time suited to me. During 13 years of infusing subcutaneously I have only had one reaction that caused concern and although it means if I go on a holiday for more than 13 days I have to take my infusion gear with me I do find it a lot easier.

So 8 bottles, 4 syringes, 2 needles keep me healthy(ish) each week and long may it continue!!

Today it Begins

World PI Week 2019 began today. This awareness week may not mean much to so many of you but to those of us with primary immunodeficiencies it is an important week of the year; a chance to raise awareness of a condition we live with everyday.

As it happens today was the day I had to do my infusion. This occurs once a week and is an infusion of other people’s antibodies to keep me healthy. For me and so many others this product is our “liquid gold” keeping us well and healthy.

Each week I infuse 80ml/12grams via two needles over 1 hour.