#RareDiseaseDay- My Experience

Today is Rare Disease Day  In the interests of education and sharing information, I decided I would tweet a ‘normal day’ just to give an idea of a day in the life of just one rare disease looks like.  Then I thought I’d make those tweets into a blog to make it easier to share wider.

I was surprised to discover my illness came under the Rare Diseases Unit, but it does.

I don’t sleep well. Apart from,ahem, the obvious results of how much I drink, joint pain and dryness disturb me. At some point during the night I woke up with the inside of my cheek stuck between my teeth – that’s what a dry mouth means. So that’s left a large sore spot in my mouth to contend with. I also wake up in agony(not a word I use lightly) from my sore joints. Mainly my hip. Dry eyes can also wake you up in screeching pain, though the new ointment I’ve got is helpful (but not available on prescription).

First stop when I get up is a drink. I drink all day, usually boiled water as the warmth helps. Then comes a nebuliser for my dry bronchial tubes, an inhaler, tablets that artificially release at least some moisture into my mouth, pain killers and a mucolytic.

Eating is actually really difficult. With limited saliva it is difficult to chew or swallow, anything with rough edges cuts my mouth. If I’m not really careful I choke, which always adds some excitement to the day – and raises the potential for chest infections 😦 

If you don’t have a chronic illness, you may not believe how exhausting having a shower is – even more so washing your hair. But I have to wash my skin with an emollient. I don’t dry myself, just wrap myself in a towel and collapse in a heap somewhere to rest.

When I’ve recovered enough I then have to coat my hands and feet in a strong urea cream. (This makes A Mess and creates a lot of washing) In amongst all this I have to turn the washer on – thought I’d done it last night, but brain fog means I’d set it up, then not turned it on. This kind of thing happens often!

I then need time to recover from getting up. Oh and I have to be very careful what I wear. I struggle with zips and buttons, and seams in the wrong place are a nightmare.

A recent side effect of my meds is my hands shaking, which is adding a whole new excitement and jeopardy to life.

Oh and I forgot cleaning my teeth. My whole mouth is a nightmare caused by the lack of saliva. I have to use special high fluoride toothpaste, but still suffer as teeth aren’t happy without saliva. I have yet another sore tooth that I’m trying not to have extracted. Sprays and gels are available, but the sprays lasts about 30 seconds and the gel tastes disgusting and doesn’t last much longer.

And then there’s eye drops. Despite having punctual plugs (don’t look that up unless you’ve hot a strong constitution!) My eyes are so incredibly dry, which is is very sore. I use eye drops at least every hour, often more. I’m never without a collection of these.


And the post brings a hospital appointment – of which there are many when you have a multi-systemic #chronicillness.

This is one of my recent finds. An absolute Godsend for my dry nose. Really helps with the stuffiness and bleeding – and consequently the sniffing! Oh – also not available on prescription…


Saturdays are a bit different to my usual. The lovely Mr W tries to take me to look at a different view and have a coffee. Living in beautiful Derbyshire helps 🙂


Fresh air is life-enhancing, but exhausting. I do like to walk short distances, but I walk very, very slowly. I struggle with balance, joint pains and my breathing. I use two crutches.

Quick pit stop for the shopping. We buy a lot of pre-prepared foods because energy and cutting peeling are a big problem. We tried grocery delivery, but always ended up having to go out to buy what they’d not brought/ruined.

Now I’m going to sleep. If I don’t sleep for a reasonable amount of time in an afternoon I am useless. My balance gets worse the more tired I am and I can get very shaky.

Afternoon meds – more painkillers and mucolytes.

Evening meal, we call it tea up here 😉  As well as sore thumb and finger joints my hands have a nasty habit of spasming. This cutlery really helps me still being able to deal with some food myself. Otherwise the lovely Mr W cuts it for me.

*I forgot to say in my tweets, most food is pretty tasteless without saliva, which can make eating a necessary chore – but the company is good!


I’ll finish off the rest of how my evening is likely to go now, before I fall asleep! I’ll likely snooze on the sofa, followed by nebuliser, inhaler, painkillers, mucolyte and more urea cream. Night time eye ointment and as a special treat on Saturdays and Wednesdays I have Steroid cream too.

Thanks to everyone for their interest today. I hope its shown how one #RareDisease #chronicillness plays out and effects life. All the maintenance is exhausting – on top of the disease itself.

There’s not much interest in developing drugs for #raredisease because the take up of such drugs would be so small due to rarity. I’m not sure what the answer to that is. But it would be nice if those things that are available to others with chronic illness are open to us.

~ by pamjw on February 29, 2020.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: