Wednesday 6th December - scleroderma, sclerosis, whatever

 (Unexpected rant in blog-posting area!)

Look, this is a scleroderma/sclerosis post, because that's what I've got, and that's why 2000-3000 steps per day is good going for me, and why I obsess about oxygen levels and 6 minute walk tests.

It's about why I'm STILL wearing a mask, social distancing, and getting fidgety if people stand too close. 

It's not a plea for pity, I'm OK, I'm not in pain, just massively inconvenienced. If you are going to get an auto immune condition there are plenty of worse ones.

Please don't feel obliged to read all this. 

I just thought I would explain myself, because these auto immune illnesses are pretty rare (thank God) and so don't appear on people's radar very often. It's because of this relative rarity that I am quite open about having scleroderma. When I was first told, I felt quite alone, as though my world had collapsed, especially as my encyclopedia stated that 'survival was usually around 5 years'. Things have improved; there's still no cure at the moment, but there are more ways of slowing the progression. 

Sclerosis is to do with 'hardening ', and derma is to do with skin, or connective tissue. I've got a form of sleroderma called 'subcutaneous sclerosis', ie hardening of connective tissue inside my body, mainly in my lungs but also in my digestive system and heart. My lungs are slowly developing scar tissue (lung fibrosis) preventing oxygen from passing through the membrane into the blood. I'm lucky; the progress has been incredibly slow since I was diagnosed over 20 years ago and I had probably started on this route maybe ten years before that....

So, practically, what does this mean? I attend three specialist clinics (rheumatology, cardiology, and lung) in two different hospitals. They work together very well indeed to keep me going.

Yesterday I had a telephone appointment with the lung clinic. The regular 6-monyhly review, taking into account the routine lung function tests of a few months ago. All's as well as can be for now, which is what I was hoping to hear. 

Good. 

The other really, really useful takeaway was on the whole question of masks and social distancing.

After 4 years I was beginning to wonder if we had been too strict, too restrictive in our lives. I was losing all sense of what the dangers and risks were. 

'I've had covid, and this new one's no worse than a cold' my friends say. 

'So, are you thinking that maybe it's time you could relax and come out more, come round for coffee?' suggest others.

The answer from the consultant was a categoric 'no'. Because of the medicines I take, I am vulnerable to catching colds, chest infections and covid, and, if I do catch them, my weakened immune system means I can't fight them off as readily. My continued mobility depends on avoiding adding to the scarring on my lungs which these infections could cause.

So, her advice, in the strongest possible terms was

Don't go into pubs, cafes, restaurants. Don't go to places where there are lots of people. Wear a mask if you really have to go into shops, or at the hospital. 

Yes, to meeting people for coffee or meals out in the open air, or going to gardens and outdoor spaces which are not crowded.

In other words, carry on as you have been. I dare not ask for how long!

And of course my husband has to commit to these same restrictions. When he goes round the supermarket wearing a mask, shopping for my father’s groceries, he's doing it to protect me.

What I'm asking, is if you see someone wearing a mask, give them space. 

Don't heckle them (believe me people really do! 'you don't have to wear a mask anymore' they mutter loud enough for us to hear). 

Nobody wears a mask unless they have to, nobody distances themselves from their families unless they have to!

There.

Rant over.

Normal trivia resumes tomorrow!