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Psoriatic arthritis: 'It is very much an invisible illness because I look and appear fine'

It is unacceptable to only have access to medical experts and services within regular business hours, writes Sandra Quinn.

Sandra Quinn Journalist and editor living with psoriatic arthritis

I SUFFER FROM psoriatic arthritis. It’s a bit of a pain, literally, and often decides to flare up at the most inconvenient times.

It is the best form of arthritis to have in fairness, as it is not degenerative. It can be treated effectively with weekly injections, steroids, medication to prevent stomach ulcers, pain killers, anti-inflammatories and a host of other things.

My diagnosis

I was diagnosed when I was in college at the age of 19. It is a dehabilitating and life-long auto-immune disease, which when flared up causes severe pain, swelling and reduced mobility in my major joints, with my hips, spine, shoulders and knees being the worst affected.

The disease is relatively well controlled through a strict cocktail of daily maintenance drugs and weekly injections. Then for the flare-ups, which are unpredictable in nature, severity and duration, there are stronger medications, such as painkillers, anaesthetic topical patches (like plasters), anti-inflammatories, steroids and more.

It is very much an invisible illness because I look and appear to be fine and while I may be in a lot of pain, I would often still try to be in good form.

People often tell me I seem fine, not realising that they only see me when I’m well enough to be seen. If I am really bad and in a lot of pain, I will be at home in bed hiding away from the world.

Managing flare ups

So, when it flares up, I have a list (it’s intimidatingly long to be frank) with a secondary bag of medication to match, which I can refer to and there are stages and steps to follow.

I have been going through the motions of the first steps since last week and all was going according to plan-ish, until I woke at 5am on Saturday (never a good sign) and had an upset stomach and bouts of vomiting from the severe waves of pain coming over me.

As it was a Saturday and my own GP practice was closed, I rang SouthDoc and got great medical advice and help. But as they were in Mallow and I was in Rockchapel (both in Cork, but a good 40-minute drive away from each other), it was not practical for me to go there, with the possibility of then having to go onto Limerick to the hospital.

I rang my own GP and left messages. Then I rang the assigned “24 hour” rheumatology nurse specialist, then the rheumatology secretary and then the hospital itself.

No service available until Monday

The upshot of all those calls and chasing people was that there is no rheumatologist on call and the service is not available until Monday.

Armed with that knowledge, I assessed what SouthDoc had told me and started a process of self-medication and dosage.

The options were to self-medicate in the comfort of my own home or go to hospital, where they would only be able to give me pain relief, but nothing to treat the direct source of the flare up, without consulting a rheumatologist.

So, I ask you, is it fair or right that anyone with a severe illness or disability has to schedule their flare ups to tie in with the supposed schedule of Monday to Friday, 9 to 5?

It’s unacceptable  

I think this story will evolve quite a lot, as it is clearly unacceptable in this day and age to only have access to vital medical experts and services within regular business hours.

I appreciate that people need time off and that services have wind down times, but the health system should not be one of those un-manned areas.

Sandra Quinn is a journalist and editor. She’s from Cork and lives in Limerick. You’ll find her personal blog over on www.quinnsquandries.blogspot.ie, while her work has been published in daily and weekly local, regional and national publications.

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About the author:

Sandra Quinn  / Journalist and editor living with psoriatic arthritis

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