Life is full of ironies. 6 years ago, on the 7th of April 2015, I visited my GP practice covered in blisters and thus started my Bullous Pemphigoid journey proper.
On the 7th April this year I visited my GP practice again, but this time it was for my second Pfizer vaccination.
For the background to this blog post and my Bullous Pemphigoid story please read my post to the British Skin Foundation:
7th April, 2021
The day has dawned bright and sunny though quite breezy. Today I am having my second Covid vaccination. I got a phone call yesterday. The number is private which means it could be important.
Caller: “Is that Mrs Ingrid Thompson?”
Me: “Yes”.
Caller: “Have you had your second vaccination yet?”
Me: “Noooo” (getting excited now)
Caller: “Can you come tomorrow?”
Me: “Ooh yes please. Can my husband come too (he has also been shielding.) What time?
Caller: “What time is best for you?”
Me: “Well my husband will be home from work at about 2.30pm
Caller: “Shall I book you both in for 3.30?”
Brilliant and so easily done. I am aware how lucky I am to have such a good medical practice and how difficult it has been for some to get their jabs. I am so happy. After a year in lockdown, I'll be another step nearer to being able to hug my family and friends.
Once the news sinks in I am excited but nervous all at once. I didn't really have any side effects from the first vaccination, but I have heard that the second dose can give you more side effects.
I don't sleep well over night but then I rarely do nowadays. One of the consequences of PEM.
I have been shielding for a whole year. No human contact with anyone but my husband and the lady who took my blood pressure.
My 60th birthday has come and gone.
My best friend's 60th birthday has also come and gone.
My daughter has moved into a flat with her boyfriend and my son has been on furlough for a year.
Both have had Covid-19 and thankfully come out the other side.
I know it would be different for me.
But things could be a lot worse.
My mind drifts back 6 years to April 7th, 2015 when my journey being treated with Bullous Pemphigoid began, which is also the reason for my year of shielding.
7th April, 2015
I didn't know what the day is like on that day, I was too ill to care. I was covered in blisters. I’d hardly slept at all for days, far too uncomfortable.
7th April, 2021
I get up and get my breakfast accompanied by the faithful Malccy (my cat) as always. My husband, who's also having his second dose of vaccine with me today, has been at work on an early shift, so it’s just me
I have a shower which I wouldn't have contemplated 6 years ago, the thought was horrendous with the blisters.
7th April, 2015
I visited my GP at the same medical practice on the Tuesday 7th. He took one look at my skin and realised I needed help quickly. He got me an emergency walk in appointment for dressings to be applied. I still remember the look of shock on the face of the clinician who came into the room to dress my blisters.
My GP also arranged for a next day appointment at the hospital Dermatology apartment.
7th April, 2021
I put my lucky black cat earrings on and don my PEM Friends badge.
Lucky Earrings!
My husband and I take a stroll up to the Medical Centre (5 minutes) and find we are really lucky. No time for queuing photos like last time, there is no queue. After a quick hand sanitise and forehead temperature check we are ushered straight into the centre to take our seats.
I choose my seat, No. 12, and point my husband to guess which seat!?
My Lucky Seat
Seat 13! Masks and glasses don’t mix well either
We fill in the same form as before and wait. We are informed of the possible side effects.
A few minutes later a staff member who I know and knows me (well over the last 6 years I have been rather a regular customer as it were) gives me the happy jab.
Sitting and waiting in case of reactions
Opposite us is a ninety-year-old hard of hearing lady having her 2nd jab too. Her daughter explains it’s like having her flu vaccination. The staff are very nice to the lady, explaining everything but not patronizing her either.
After 10 minutes we are told we can leave and we stroll home. I put the kettle on for a cuppa and I realise we have no cake to celebrate. Oh well a nice hot cross bun does as well. I feel very tired but probably because I've been holding my breath since my 1st jab and now I can let it out.
I send my proof to my friends and family and my sister askes who is Ingrid Thopson?
Whoops!
8th April, 2015
My husband drove me to the city hospital for an emergency dermatology appointment. I hadn’t slept and I was so sore and itching.
The clinician who saw me was nice and asked the poor student who was with her to count my blisters. The legendary 467 is then established. I didn’t realise it at the time but I was very lucky in some ways as the clinician is one of the top blister and BP experts in the country. She still looks after me today.
She told me I needed to be admitted and I wanted to cry, but I wasn’t sure if it was relief or upset. I know my husband was very relieved as he had been really worried about me. He needed a break from looking after me and he was exhausted. In the end we were both relieved by the admission as we had found out that Bullous Pemphigoid can be fatal. I was young for it as it tends to be a disease for the over 70’s (and I was 55).
My husband went home to get me some nightwear etc. and they found me a space on the ward. A well-meaning healthcare assistant took me to the showers and offered to help me shower. I politely declined the offer of help and then pretended to shower. Those of you with blisters know how uncomfortable showering can be and even after 6 years it still is. My skin is now very sensitive.
8th April, 2021
I wake up tired but that goes with the territory nowadays. I rarely sleep well. My arm is quite painful and tender but that seems to be the extent of the side effects. At lunch time PEM Friends have a usual zoom chat meeting. I really enjoy these and it reminds me what a wonderful and supportive group it is. It also reminds me that not everything about having PEM is bad. I have made some lovely friends.
10th April, 2015
Still sleepless nights but there was always something to photograph in the early hours and I maintained my library assistant worker discipline.
OK so it looks disordered but in true library fashion everything was in the correct category!
The sun has got sunglasses on
I was a bit of a star (sort of) as the dermatology consultants wanted to bring students so they could see me. It’s a teaching hospital so I consented as people need to learn about this awful disease. From their faces I could tell they hadn’t really heard about Bullous Pemphigoid.
They had trouble taking my blood pressure as I had so many blisters everywhere, so for a while they used my ankle.
10th April, 2021
My arm is ok and life is looking up now I am Ingrid “2 jabs” Thompson. My children and their partners are coming round for an outside brunch. There is no way I could have predicted the effect Bullous Pemphigoid would have on my life even after 6 years. For a start it’s the reason for my year of shielding, but I’m safe and life is looking up.
POSTSCRIPT
In the end I spent nearly 3 weeks in hospital in 2015 and my whole life had changed. Medications, side effects, constant tiredness, retirement. The list is endless.
But I’ve made friends and learnt to build a website and taken up photography for mindfulness. This list is also a long one, but that’s for another blog post.
Watch this space.