Let’s talk it over…

Chronic illness is a bitch. The pain, the uncertainty & incapacitating symptoms are all a daily battle. Oh, but there is so much more. More that isn’t really talked about outside of spoonie circles & I thought it was about time that changed.

Obviously chronic illness covers a huge range of conditions & everyone’s experience is different. Thus I talk from my own personal view point with some input from fellow spoonies. Here are some of tricky issues that we’re quietly dealing with.

Travel

I mean any & all travel. From trying to get a bus to a hospital appointment to trying to cross the globe. The world is not spoonie friendly. 


Have you ever sat in those seats at the front of the bus that are meant to be reserved for ‘elderly & infirm’. I’m sure you tell yourself it’s fine because you’ll move if someone needs them, right? Well, you can’t always tell by looking that someone needs that seat. Having to explain yourself & ask a stranger to move is not easy. Thus I have collapsed on buses, cried from pain & just had to get off because I couldn’t stand any longer or make it to a seat further back. Which is a pretty good good analogy for trying to get about with disabilities. It can be hard as fuck without anyone noticing. 

Being chronically ill means planing every single outing in detail. Working out if you can manage to get to a bus stop or from a station to the place you’re actually going. Thinking ahead about stairs & where toilets are. Planning when you’ll need to eat, if you’ll be able to eat & how meds will work around that. Worrying about queues & how slow you move & often you’re going to have to sit down. 

I can’t tell you how many times I’ve not participated in something I wanted to because the logistics were just beyond me. 

Relationships

Whatever your illness there will always have to be that early days conversation about what exactly is wrong with you. In my case I have scars to explain & a whole bunch of fairly scary details to talk about. In the beginning I thought that would be the hardest bit, but it so isn’t.
The worst part is all the normal things that are so much more complicated for me. I am completely aware that sometimes I’m no fun. I say no more often than most people. I have many (too many?) limitations. I’ve adapted to that, but I never know if others will. 

It’s scary & stressful to try someone new. They might well get fed up accommodating me. Every time I say I can’t make a social event or have to admit that I don’t fell well, I worry. Maybe this is the point they’ll decide a spoonie girl friend is just not worth it. The truth is, I wouldn’t actually blame someone for having those thoughts. After all, life is for living .

That’s the real kicker, it’s not a problem that can be resolved. Wanting to live a life that I’m not fit enough for doesn’t make anyone a bad person. It’s just another thing I (we) get to think about when I can’t sleep. 

Side Effects

Sometimes the treatments are worse than the illness. Almost every medication I take produces a side effect that impacts on my life. In fact I take medications to help with the side effects of my medications. I’ve taken drugs that have made me vomit, itch, gain weight, lose weight, have double vision, dizzy spells, palpitations, acne, the list goes on. 


Every treatment one is offered comes with a list of possible side effects. Chronic illness is a constant balancing act. How much relief will I get from my symptoms & will it be worth the new problems it will cause? 

I often illustrate this problem like this.

Severe anaemia can cause itchy skin & angina. 

A blood transfusion & opioids can treat these complaints.

Guess what a major side effect of both transfusion & opiates is, yup, really itchy skin. 

Welcome to the conundrum of chronic illness. What cures me might well kill me to. Fun!

Money

Hardly anyone likes to talk publicly about their finances. It’s awkward & it’s private. I hate talking about money, but honestly with regards to disabilities, someone has to. Having any kind of disability almost always screws you financially. What work you can do is limited. Employers will silently discriminate against you & the current  government will loudly throw you to the sharks. All the while ones disabilities will incur extra costs at every turn. In terms of cold hard cash, illness will cost you. Lots. 


The Embarrasment Factor

Never underestimate the power of embarrassment. All of the things I’ve discussed here can make a person feel really small. Be it feeling red faced about a misbehaving stomach or the facing soul destroying humiliation of having to justify your right to be alive at an ATOS assessment. Humility is a lesson spoonies learn over & over. 


Imagine how you felt the last time you farted somewhere you wish you hadn’t & the feeling of falling over on a crowded street & having to talk to a dr about a really cringey complaint & admitting you’ve failed at something important & having to tell the world that you need help with things everyone else can do. Now imagine coping with some combination of all the above every day. Welcome to my world. 

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Dirty Old Town….

This week I treated myself to a little Irish adventure. Accompanied by Mum and sister I paid Dublin a flying visit. So, what did 3 Scottish ‘girls’ get up to on the emerald isle? Give me a minute and i’ll tell you all about it.

First stop was of course the GPO on O’Connell St. The building itself is impressive, it’s history even more so. The beautiful structure that housed the birth of modern Ireland still bears the bullet holes. I failed completely to get any decent pictures of the landmark due the sheer volume of people attempting to do the very same thing. In lieu of that I offer you a glimpse of the attractive clock the GPO is adorned with.

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A few feet from the historic landmark stands the Monument of Light (An Tur Solais). The stainless steel sculpture is 398ft high & believe me, it’s an arresting sight. If you stand directly below it up look up, which is exactly what I did, it appears to go on forever. I’m a fan of the juxtaposition of traditional architecture & striking modern art. I highly recommend admiring Dublin’s Spire from the cover of the GPO’s pillared frontage. 

Next we cruised through Georgian Dublin on our way to Trinity College. I have long admired the library at trinity. The prospect of floor to ceiling tomes tickled my book loving fancy. The Longroom is that rare gem that exceeds expectations. I was in awe from my first step into the room. The steep spiral staircases, dark shiny wood, Latin & that unmistakeable book smell were intoxicating. I had found my spiritual home. If it weren’t for all the annoying tourists I would have been in heaven.

Dublin is packed with grand buildings, cool fountains & pretty things that catch your eye. 



The Irish charm flows across the Liffey with an array of bridges. Be they an 80million state of the art construct or the iconic ha’penny bridge. My personal favourite was adorned with horse mermaids. Yes, I said horse mermaids. 

Mum really wanted to visit St Patrick’s cathedral & we of course obliged her. I’ve never caught religion so allowed my Lauren to join her on the tour whilst I admired the floor in the gift shop.


From St Patrick’s we strolled past the Christ Church & headed to perhaps Dublin’s most famous spot, Temple Bar. Temple Bar is exactly as you would expect it to be; vibrant & cool. The streets are packed with street art, funky eateries & of course lots of pubs. 

Mum was lured into THE Temple Bar by the strains of live music. Dublin pubs are much like its people; friendly & boisterous. The Temple Bar was no different. The place was packed & the music (Wild Rover & other familiar tunes) was loud. It also afforded me the rare opportunity of taking a pub selfie with my tee total mum. 




Dublin was a joy. It was just what I needed to perk me up. Watch out Ireland, I’ll be back.