Feeling a lot better

 Been feeling a bit down just lately. The pains in my back have been quite bad, making it difficult to even stand up straight let alone walk anywhere.

A couple of days ago though thought I would try something which someone recommended a long time ago but which I’d never tried - turpentine oil. It was recommended as a cure all for everything including the IPF so I wrote it off originally as just a quack remedy.

I looked it up again and one of the things it is said to do is relieve pain. I ordered it, and yesterday it arrived. Rubbed some on the small of my back, where the pain is seated. I have arthritis in my lower spine.

Just 24 hours later I feel a lot better and although I’m very stiff still, the extreme pain when I walk has eased. 

I have a feeling that if I can ease the pain to be able to move more freely again, the additional movement will itself lessen the pain, and stop it getting worse.

Have to decide now whether I should be getting out to attend meetings again. By the end of June I have two gatherings I should attend - one an ‘away day’ with the staff of the nursing academy, and an informal day in Cambridge with APF.

The weather is a lot better now, but not blazing sunshine. Makes life seem a lot better though.

Looking for ways to improve access to research studies in ILD

 Wanting to set up a network of clinicians to promote offering ILD and other respiratory patients the ability to register for research studies. These may emanate from any of the hospitals in the southwest, but may also be from around the UK, or international clinical trials.

It is.necessary to involve clinicians as their local hospitals may need to be involved in actually qualifying the patient for the study and often in collecting data and monitoring the patient.

 Another day in the life of an IPF Patient.

Trump no longer in the White House. Not sure though that Biden is any better for the world. 

Here, our government seems to have rolled out a good vaccine programme but I think it’s more by luck than judgement. 

I seem to be pretty much the same as before, but I am noticeably weaker. The pain in my back is bad if I attempt any form of walking. The FVC readings seem to be pretty stable. I’m doing home spirometry and sending figures in once a month.

The support groups seem to be progressing OK, and I’m involved in more and more things at the University.

I’m involved in the PPI group at the Academy of Nursing, Through that am on the PIME group at the Medical School. 

Separately I’m in EPIC which is the PPI group for the respiratory research at the University.

Also involved with Plymouth University through WellConnectedUK a charity group with an office in Plymouth.

Not sure if I’m influencing too much, but they keep asking me now to join things, and for my opinion on things.

2021 Getting worse

 Ah well, 2021 hasn’t really got off to the best of starts. COVID infections and death figures running away. Very serious situation.

Me, I’m ok. Not sure if I should have a vaccination as I have chronic kidney disease and apparently there might be a risk. The vaccines haven’t been tested on people with CKD. 

The children aren’t going to visit until I’ve had a vaccination.

I’m busy with the charity, but also with my role on the PPI group at the Nursing Academy and the medical school at Exeter university. There is a lot of involvement.

Goodness knows what’s going to happen in the USA - all very fraught at the moment. Trump seems to be obsessed with an idea that he’s been cheated out of his second term. All down to the fact that his election rallies were well attended, whilst Biden’s were sparsely attended - but he’s forgotten that this was because of the pandemic. He was encouraging people to ignore the danger as it was fake news. 

Brexit has happened, but because of the lockdown, there hasn’t been any great effect as yet. Time will tell.

DCW is still operational, but a lot of the customers are closed. Luckily there haven’t been any infections amongst the staff. Lucerne, where Alice works, has been hit hard, 60 staff and patients tested positive. 

Time flying... but still shielding

 First of the month, the last month of the year. Did an interview for BBC Spotlight last week, but still waiting for it to be broadcast. It’s about the result of some research at the UNI medical school, led by Anna Duckworth but fronted by Chris Scotton. Chris and I did the interview - me, giving the view of the patient. 

I’m now on the PPI of the Exeter nursing academy, not sure of what the commitment will be, or what it will involve, but it seems quite full on. 

Debenhams looks like it’s going to cease trading which is a shame. Arcadia (Top Shop, Burtons, Dorothy Perkins etc..) has also gone broke... basically the result of financiers trying to run companies, investing in the assets rather than the real trading value of the business.

Didn’t invest in the online world.. where you require a new way of thinking. A lot of people require help and advice when buying clothes, and so small shops with example styles and materials on display, and expert measuring service and then able to order with very short delivery times - and then fine tailoring to make final alterations - all done within a short space of time.

Prices will go up probably, and the nature of the high street will probably change, but the change may not be that dramatic. More technology will be needed, more socialising, fashion displays whilst having a coffee.

Back to IPF and COVID. Increasing evidence that COVID can lead to fibrosis of the lung. Bad news for many people, and increasing pressure on respiratory services in hospitals. 

I‘ll be on my own for Christmas. I‘m quite happy with my own company, and not a ‚social‘ person really - don‘t like party games and such things. There is a lot of COVID about in my social circle - so best to hunker down.

Now a bit later, the BBC interview hasn‘t been broadcast... surpassed by all the breaking news on Cornwall being in tier 1 and Devon in tier 2, a COVID vaccine, and the fisheries causing a no deal Brexit. All still ongoing.

Yes, we have a vaccine, how soon I‘ll get it is anybody‘s guess. I am highly vulnerable, so should be one of the early ones.

Will let you know.

Still shielding

 There is so much unknown about Pulmonary Fibrosis, and a general lack of knowledge about the nature of the disease and how it relates to other diseases.

In medicine not everyone reacts to a disease in the same way. Not everyone gets the same symptoms, and a treatment which helps one person doesn’t necessarily help everyone else.

Currently there are no treatments which stop fibrosis or reverse fibrosis. 

With pulmonary fibrosis, whilst the fibrosis can appear to reduce the volume of the lungs, it doesn’t always do so significantly, and can also sometimes only reduce the volume in the very last stages of the illness. Fibrosis makes the wall of the lungs - the interstitium - less flexible and thicker, thus making it harder to breathe, and making the person more breathless when exerting themselves. 

From observation it would seem that getting the right nutrition is extremely important. Rapid weight loss is not good and can result in a very poor prognosis. I have known several people on Nintedanib who have suffered with stomach upsets, including severe diarrhoea, and not lasted long, I suspect because they have persevered with the medication for too long and their organs have suffered as a result.

I believe that when a patient is being seen by a specialist centre, then that specialist centre should look after the whole health of the patient. Currently there is a game of symptom ‘ping-pong’ with some aspects of a patients health being looked after by a GP, and the fibrosis being monitored by a specialist. The problem being that the GP, who will be asked to advise on nutrition, blood pressure, weight management, cough and other things generally has little or no knowledge of PF and its treatment.

The patient is left with a dilemma in that he doesn’t really know who he should approach when symptoms worsen suddenly. 

Time moves on

There is a new report that shows that if you have IPF and catch the COVID-19 virus you only have a 50-50 chance of surviving, worse if your FVC is less than 80% or if you’re obese.

Sobering thought.

What is annoying is that there are people who strongly believe that there is no virus and it is all a scam to convince people to have a vaccination, have a ‘controller’ implanted, and your mind and beliefs will be controlled from then on. Such utter rubbish, but people are spreading these theories.

It is extremely worrying that there are people like this around and frustrating that there is no point in arguing with them.

I’m still isolating. Reading a lot now. Managing pretty well.

Trying to work out how we can reach more patients with IPF to give them support - if they need it.