Tag Archives: chronic illness

Top Tips for Isolation

community, disability, life, ,

I realise I never shared my top tips here – in case they help anyone in this difficult time.  All gained from 15 years with a debilitating illness that keeps me home most of the time. And as someone who is in the ‘shielding’ category, to remind myself when I am beginning to forget them.

As shared on the brilliant website of my friends (lots of other helpful stuff on there too – do take a look)

  • Keep in touch
  • Don’t make all your contacts from within your “tribe” – see other perspectives
  • Always have something life enhancing in your day
  • Still eat as healthily as you can
  • Get whatever exercise you can

– and don’t turn on the TV before lunchtime!

Hope they help!  Stay safe

A Strange and Vulnerable Land

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I have found the last couple of weeks really hard. Not because I am stuck at home, I’m used to that – though I am missing being able to go out for a brief meander when I can, but because social media, once my lifeline and refuge has been taken over. I am not proud of that, but it is how it is.  I have practically stepped away from Twitter (though this will still post there!) and Facebook, which always seemed kinder is becoming difficult too.

All of a sudden people are bored, or triumphant of how they have coped with one week of being at home in social isolation.  I’m sorry for you if it is frustrating and you are missing your ‘normal’ life, seeing family and friends and feel that you have nothing to keep you occupied. I am delighted for you if you have been able to find quality time with your household, have learned something new, or new ways of doing old things or feel your life has been enriched.

But for some people this week will have been absolute hell.  Perhaps the people in their household are the last people they want to spend time with, or are actually dangerous to be with. Perhaps this week has been a final straw emotionally, financially or health wise.  Perhaps it has underlined all that is wrong and it is difficult to see a way out.

And for some vulnerability, isolation and being stuck at home is their norm. For the people who love them they were already sacrificing and giving so much. I commend to you this article by the excellent Chronic Illness Inclusion Project that expresses it better than I can.

It was our life long before this and will be our life long after this.  We always miss out on social events, going out and about, visiting the cinema, taking part in groups, going to the pub and almost anything that involves leaving your home and sitting somewhere else; or if we do it takes such an enormous effort and payback it’s probably seldom worth it.  Yet no one before has offered them such plethora of faith live streaming, invites them to virtual meet ups, checked on how they were doing, offered to do their shopping…

That is our life, we get on with it, we have our own networks that we operate from our sofa or bed. And no one really gives it a second thought. Everyone is, quite rightly, going about living their lives. Few have thought about the socially isolated – until now. Though to be honest it feels as if most are thinking about *their* social isolation, not those for whom it is their normal.

And then this morning I saw this:

It is a fabulous vision, and there will be an after.  I truly hope people have learned and will carry forward lessons on community and healthy ways to live. But not all of us will be able to leave the social isolation behind. It is our ongoing reality.

When ‘after’ comes and everyone has gone back to their busy lives, even with their new insights, will the online connections still be there for those still inhabiting that land? Or will they disappear? Perhaps that is something to think about.

Is your friend, family member or colleague still socially isolated? Are they living in a dangerous place that continues to need your support? Will you go back to hang with your tribe, or will you remember the new tribe and new ways you have found?

I know we are all doing our best in this strange time and place we find ourselves. But spare a thought for those for whom this is not new, or truly not safe and for whom ‘after’ will not be a bright new dawn, but a same old same old.

Thanks.

#RareDiseaseDay- My Experience

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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.

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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…

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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 🙂

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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!

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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.