Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Archive for the ‘October 2016’ Category

I’m A Spoonie, Not An Addict

Over recent months’ painkillers and Drs’ willingness to prescribe certain painkillers has been a hot topic in the news and on social media. Every country has different takes on the matter, but patient’s opinions are largely the same: We’re not addicts, so don’t treat us like we are! Now I’m not trying to deny that there are people out there, that for whatever reason, will say and do pretty much anything in order to get their hands-on prescription painkillers; but it’s sad that a handful of people can have such a dramatic influence on the chronic illness society. The majority of us need these medications.

Over the last few years I have had my meds altered significantly. I have met some Drs who didn’t want to prescribe me anything stronger than paracetamol, and whilst I’m always grateful for anything that makes a dent in the pain, I tend to find that paracetamol doesn’t make a huge difference to the agonizing spasms, or dislocated joints. If you have ever dislocated your jaw and then had spasms and tremors aggravate it for hours/days afterwards, you’d know that paracetamol isn’t going to do the job. Throw in pain triggered seizures and you’re in for one heck of a ride…and oh yeah more pain, on top of the existing pain, it’s a vicious cycle. Some Drs I have been under have been more than happy to have an open discussion about my medication, and then offer me a selection of painkillers that they feel are appropriate. I will always choose to start at the less extreme option.

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There is no getting around the fact that painkillers can be addictive, and this is where the problem comes in. I completely understand a medical professional not wanting to provide a long course of pills that have the potential to cause more issues such as addiction and withdrawal. That makes perfect sense. However, there are ways to go about talking through this with patients that are sensitive rather than demeaning. I have lost count of how many times I have been accused of being addicted to pain meds, I’ve had Drs suggest I have counselling for my traumatic past as a replacement for my painkillers. Now correct me if I’m wrong but I fail to see how counselling for previous issues will solve a movement disorder and a genetic connective tissue disorder. I understand that a low mood can cause a patient’s pain tolerance to drop, and that pain in turn can cause low moods, but I still have a major problem with this line of thinking. I’ve given in to Drs on all of these occasions, and have been satisfied in the notes that get sent to them by therapists querying why on earth they thought I needed therapy. Believe it or not I am pretty happy despite being physically flawed.

Patients should not have to worry about admitting to their care provider that they are struggling to handle their pain. They should be sure in the knowledge that their Doctor will examine all the options that are open, be that a change in prescription, a physical therapy referral etc. There are many avenues to dealing with pain that should be explored and there are great patient courses teaching you how to reduce your pain as much as you can without meds. But we shouldn’t be made to feel like criminals for holding our hands up and saying I need help. If I wake up in the morning and I’m in pain then I know that by pacing and with regular breaks in the day that I can minimise the potential exaggeration of pain, however if I wake up with spasms/dislocations or both, then it’s reassuring to know that I can dull that pain to a point where I can function.

There’s no shame in needing help and asking for it.

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This happens too often!

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Duvet Days

Today is the last day of Invisible illness week 2016. I had had good intentions all week to blog daily, however readjusting to uni life meant that I was coming home from lectures and going straight to sleep. For this week I had planned to blog about achieving despite illness, and general spoonie hacks for coping with day to day life. Instead I’ve decided to leave these topics for another day and address the reality of what happens to someone with chronic illness when they catch an ‘ordinary’ bug.

I have spent the majority of today curled up under my duvet feeling frankly rather pathetic. Having caught a sicky bug and then developing a kidney infection I’m not feeling overly fantastic. Instead all my joints have been in a constant state of flare up pain, I have struggled to remain sitting upright for any length of time because my back feels like I have Snow White’s 7 dwarfs performing an irish jig on it; to walk the measly few steps from my bed to the bathroom has involved me gripping on to my walking sticks as I don’t trust my dodgy joints not to slip out of place and add to my already elevated pain levels. This is my reality every single time I catch some sort of acute bug. It sucks. Whenever my partner or my housemate has asked me what they can do to help, I’ve asked for a new body. It’s a silly retort and a bittersweet one at that. For a brief moment I’ll smile, as I know how unattainable that is, and then comes the downwards spiral because there are nowhere near enough words in existence for me to express how much I wish I could just have a new glitch free body.

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credit: Pinterest  – Spoonie Awareness

My mental well-being always takes a blow when I feel ‘iller’ than normal. So finding positives in each moment helps. Today I’m celebrating the fact that I recognized I needed a time out from life, I’m thrilled that I actually managed to change into a fresh set of pyjamas, that hell yeah I managed to walk through the pain with my stick, and sure I only managed a wee while but I still managed to accomplish some revision.

Sure I may be moaning and feeling rather sorry for myself, but I’m over the moon that I still managed all these positive moments. Tomorrow I’ll wake up to a new sunrise, and hopefully experience far less pain.

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