Tag Archives: disability

#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.

Transfiguration and Disfiguration


At our housegroup this week we were reflecting on the Transfiguration.

The first words of the meditation were “picture yourself with Jesus and his followers Peter, James and John as you walk up the steep path that is the spectacular Mount Tabor”.  One of those simple statements that pulls you up short. Well I know Mount Tabor is spectacular, and steep!  I went there many years ago.


Mount of Transfiguration 001
Mount Tabor – The Mount of Transfiguration

And yes, we took the transport up it.  But now I am being asked to walk it and that is beyond me – even with Jesus.  My illness and disabilities make that beyond me.  How I would love to be able to walk up a mountain, or even a hill or a small mound.

And one thought led to another.  If I can’t make it up the mountain, am I going to miss out on the mountain top experience?  If I can’t ever make it up the mountain, to the away day, to the social event, to anything that requires more than an hour of me sitting on a chair, to sit in a room where the lights are too bright, to be in an environment where there is sensory overload, too much noise, to do anything that requires more energy than I have (not a lot), (insert your own difficulty)… am I always going to be missing out on the special encounter with God?

The beauty of the TakeTime meditations is that Jesus takes you aside and asks you to share with him what is on your mind and in your heart. And God listens and speaks.

To me – God is the God of the Mountain Tops, but he is also the God of the Valley Bottoms.  I am with you wherever you are.  You can meet with me right here, as far as you can, or can’t, get. I am here and you are special.

But yet still it feels there is so much to miss out on, so much I can’t be a part of.  Not because of anyone’s fault, but my circumstance.

Is there anything that can be done to help me?  (My church is brilliant at helping me access community and God in ways that I can that fit outside the box – our housegroup is one example of that – but that is not everyone’s experience)

How can I help others meet God?  Perhaps sitting at the bottom of the mountain is the place I need to be to meet others who also have to sit there.

I have no neat answers, just some questions.


Mark 9:2-13 Good News Translation (GNT)

The Transfiguration

Six days later Jesus took with him Peter, James, and John, and led them up a high mountain, where they were alone. As they looked on, a change came over Jesus, and his clothes became shining white—whiter than anyone in the world could wash them. Then the three disciples saw Elijah and Moses talking with Jesus. Peter spoke up and said to Jesus, “Teacher, how good it is that we are here! We will make three tents, one for you, one for Moses, and one for Elijah.” He and the others were so frightened that he did not know what to say.

Then a cloud appeared and covered them with its shadow, and a voice came from the cloud, “This is my own dear Son—listen to him!” They took a quick look around but did not see anyone else; only Jesus was with them.

As they came down the mountain, Jesus ordered them, “Don’t tell anyone what you have seen, until the Son of Man has risen from death.”

10 They obeyed his order, but among themselves they started discussing the matter, “What does this ‘rising from death’ mean?” 11 And they asked Jesus, “Why do the teachers of the Law say that Elijah has to come first?”

12 His answer was, “Elijah is indeed coming first in order to get everything ready. Yet why do the Scriptures say that the Son of Man will suffer much and be rejected? 13 I tell you, however, that Elijah has already come and that people treated him just as they pleased, as the Scriptures say about him.”

Good News Translation (GNT)Copyright © 1992 by American Bible Society 


***Do take a look at the Take Time meditations.  They are a brilliant resource for personal or group use.  We use them at our house group set up specifically for those with chronic illness or caring for those who have as a short and non-demanding group.  No great concentration or sitting for a long time required.  Just support, understanding of one anothers issues, meeting with each other and God.

Double Disability?

Mr Pamsperambulation coined this phrase and encouraged me to write this post.  I guess I’m busy dealing with it, whereas he has to sit and watch it.

What we are really thinking of are the extra challenges of ‘Invisible Disability’ (health issues that severely effect your life, but not necessarily in a way that everyone can see).  Invisible disabilities are many and various and by their very nature, you may not know who is suffering and struggling.  This doesn’t mean that they are worse than very visible and obvious disabilities, just that they bring the extra challenges of people not even knowing you need help, understanding or special arrangements.

“Tourisme&handicap MOULINS” by Jeanlouiszimmermann. – Own work..


Such an example would be needing to use the ‘elderly or disabled’ seat on public transport, and getting accusing looks.  But it goes much deeper than that.

If you need something, you have to constantly ask or explain.  An obvious disability cuts those corners.  You may think I am perfectly healthy.  If you don’t know me well, you won’t recognise the signs that mean I’ve had enough, I can’t cope any more or today is a really bad day.  I may just appear rude, or disinterested.  I may just go home because I don’t have the energy to explain that no I can’t just go upstairs because it’s full down here; I can’t park there and walk; I can’t sit on that chair for very long; I can’t concentrate for more than 40 minutes, however interesting you are; I can’t take part in any activity that lasts more than an hour because it exhausts me – however exciting it may sound; I can’t hang around waiting; I can’t stand in this queue; I can’t keep coming back at your convenience; I can’t talk for very long; I can’t even always find the words I want to string a sentence together; I can’t just go and do that…  And they are just some examples from my problems, other people with other invisible difficulties will have their own.  They may include access to toilets, needing space, help with logistics – the list is as long as the individual people.  And we can’t always bear to have to explain AGAIN, because no one can see them.

Today depression has hit the news again.  Can you imagine how it would be to have to try to gather yourself to explain what that means in your life at this moment?  What you need to help you?  Yet it is very real, and by the nature of the illness often hidden, yet needs understanding and support.  Not all adaptations that need to be made are physical.  Sometimes we need to change the way we say things and the atmosphere we present.

It is true that we never know what is happening in someone else’s life, how it is to live the life they live.  They may appear stroppy, attention-seeking, awkward, distant or any other way of being – but we do not know what they are battling or living with; how much it might have taken them to get up or be where they are.  We should make no assumptions and no judgments.  We should find out what we can do to help, to make life and events accessible (and not promise you will if you haven’t thought that through or don’t mean it); accept what people need to do to make something bearable (that may mean something like lying on the floor – that needs to be OK, not questioned or tutted over); try to help and most of all seek to understand – not necessarily by asking lots of questions, just taking what is.

Disability is hard enough, please don’t make it any harder by your reaction, lack of reaction or failure to understand.  Listen, accept and do what you can to make life as easy and bearable as possible.  Because actually that applies to everyone, not just those who have a ‘disability’.