Pam's Perambulation

Today is World Sjogren’s Day.

Rather belatedly it has occurred to me that it might be a good idea to write a blog sharing my experience.

It is not a fun disease (which are?!) because it affects so many different of the body, often several places at once, sometimes, just for fun, they wait until you think you might have got on top of one for another to take over, and they go round in circles.

This picture is helpful in explaining it.

The main focus of the campaign this year by SjogrenEurope has been fatigue. Whatever other elements of Sjogren’s are flaring, the fatigue is debilitating and drags you down. It’s hard to know sometimes if the fatigue makes other things feel worse of the other symptoms just wear you out – probably both, but this was my day today (which is probably why I’ve only just thought to do this!)

Fatigue from an autoimmune disease just overarches everything. It is so much more than just being tired. It stops me doing most of the things I would want to do. You cannot “push through” this fatigue, or I can’t, if I try I just get very dizzy or crash. My energy and capacity to do pretty much everything is about 45 minutes – and there’s only really one block of that a day.

I’ve written about it’s effects on me before, but I will just outline them again here in this context.

The fatigue and just the exhaustion of the illness in general, and indeed just the illness itself affects clear thinking (often called brain fog), makes my balance very uncoordinated, and my spatial awareness is shot. It also makes me struggle to process what I have heard and what an appropriate response to that might be, and word finding – which is why this blog is much neglected these days – I’ve had to ask Mr P several times what word I want. And even when I can I can’t always work out how to spell it or type or write the letters in the correct order. It has taken a lot to type this. It is hard to concentrate, which is really annoying when you used to be able to think and express yourself clearly (well all things are relative!)

Besides the fatigue and it’s friends, anywhere in my body that should have natural lubrication has very little. If you don’t want the graphic details you might want to stop there…

I have incredibly dry eyes which make focus difficult and I am incredibly light sensitive, I cannot cope with any bright lights. I have everything in dark mode. It also makes me struggle with focus and especially reading things that are the wrong colour contrast (there’s a word I can’t think of) or line spacing for me. My eyes are also incredibly sore, it’s like permanently having sand in them, day in and day out, night in and night out – excruciating if I don’t keep them topped up with eye drops at least once an hour. At night I put ointment in them (no easy task when you are also allergic to lanolin! Finally someone has started making a lanolin free ointment in the UK for which I am very grateful) but waking up in the night because your eyes are so sore is not fun.

My nose is really dry, which makes it bleed, sometimes spectacularly so.

My mouth is very dry. That in itself causes problems with teeth and I regularly need dental treatment (yet still have to pay for it all even though I rarely go six months without another part of another tooth falling out and needing attention). This also causes problems with swallowing. Food sticks and drags and it is not unusual for me to choke.

I’m sure my recurrent chest infections are well documented. I have rarely gone more than six days between 14 day courses of antibiotics since last November. I find breathing hard work and get out of breath doing the slightest thing\ My breathing is considerably worse than it was even a year ago. This is all just totally exhausting and debilitating.

I get a lot of pain in my joints. Especially my hip, hands and feet. My fingers have very little feeling in them, which can make life very awkward at times. I regularly drop things and cannot feel hot or cold in them. This makes it tricky and unwise for me to pick up hot things making getting myself a meal impossible. It also makes it difficult to lift, balance, carry or cut anything.

My skin, pretty much everywhere is incredibly dry and if I don’t slather it several times a day with various lotions and potions, and sometimes even when I do, it itches beyond distraction and cracks.

So all in all Sjogren’s is a complex, multi-systemic illness. There is no cure, just medications that can help some of the symptoms sometimes. My delivery from the pharmacy comes in a very large packet.

It is classified as a rare disease, little known and mainly effects women. So once a year it is worth shouting about.

There is research, but only by the very interested. No one is going to become world famous finding a cure for it – though those whose lives are affected would leap with joy – well if their joints weren’t too stiff and they had the energy 🙂

Thanks for reading and being willing to listen and learn.

~ by pamjw on July 23, 2021.

Posted in community, disability, life, Rants and Ramblings
Tags: chronic illness, fatigue, sjogrens, World sjogrens day