Posted in Archive, October 2016

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!
Posted in Archive, October 2016

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.

Posted in Archive, October 2013

Ambulance Trip

After two weeks of no seizures, and no ambulance trips since July, my seizure free luck ran out yesterday. Having had a fantastic day at college, I collapsed outside my house after my legs went into a bad spasm. I feel sorry for my poor friend who took me home that day as it was not a nice experience for her.

I gave my body a good whack on the ground when I collapsed, triggering my seizures. Normally with my Non Epileptic Seizures I come round, even if it is just for a second, between them. However yesterday this did not happen, I remained unconscious in between. Luckily my younger brother and one of younger sisters were at home, so they were able to bring pillows, blankets etc out  to keep me warm whilst my friend kept me safe.

An ambulance had to be called, thankfully I always tell everyone that I have a letter from my neurologist in my handbag instructing paramedics and doctors on what to do. This letter meant that the paramedics quickly administered diazepam to me. As I was remaining unconscious and had been unconscious for so long I was given oxygen and taken to the resus unit at the hospital, where I was monitored for several hours.

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I feel sorry for the first doctor in charge of me as he was very unsure of my condition and therefore seemed to feel frustrated as he was unable to help me. My body being its usual unhelpful self did its typical vein disappearing act. It took the poor man seven attempts to get a line in me and bloods out of me.

Despite this incident ruining my good streak, I am still viewing it as progress! Hopefully these blues and twos trips to hospital will continue to be less and less, until they fizzle out completely all together. It may take time, but it will one day happen. I am so thankful for my letter from my neurologist, I am sure with it out I would not have received diazepam so quickly, and that was much-needed to help bring me round.

I am now home and shall be spending the next couple of days recuperating from yesterdays events.

Posted in Archive, January

Today’s Support/Research Group and Dystonia Update

This evening I went to a group that my GP signed me up for. It is designed for people with chronic pain symptoms, to help give them coping mechanisms that they can learn to use in daily life. The group is also for research so we were asked to answer questions, and give them our life and medical history, so that they can compare the results the group gets at the end of the 12 sessions to the answers provided at the beginning.

At the start, I must admit I was a bit dubious about the group, the leader seemed a bit mad, and everyone there was a fair bit older than me. I was also concerned with how much I would be able to take part in, as I am in wheelchair. However by the end of tonight’s session my concerns were long gone. I had managed to take part in everything, when they did walking activities, I copied their upper body movements, and swayed about in the chair. The other people their were lovely and I have a good giggle with them all. We also focused on our posture and did breathing exercises which I found to be very relaxing. The two hours flew by, and I cannot wait for the next session!

Today has been a rather positive day. After six hours of calling, I finally managed to get hold of my Consultants Secretary, who has promised to chase him, and have him contact me ASAP, I am hopeful that he will, but I shall just have to wait and see. I have had no Non Epileptic Seizures at all today which is fantastic and my head and body are feeling much better.

My local Riding for the Disabled stable phoned me today, and as long as my Non Epileptic Seizures stay calm, then I shall hopefully have my first RDA lesson next week! I am rather excited!

Posted in September

Who is in control?

One normally feels in control of their body, if they want to pick up a pencil or smile they can do see without a second thought. So who is in control of mine?

In July I lost control of my mouth, then in august I lost control of my eyes, and now in September I have lost control of  the majority of my face, my right arm and hand. So who is in control?

Dystonia is a neurological condition so therefore it is the basal ganglia that is in control of me, or at least that is what the medical profession say. Personally I have an image of a tiny little alien bouncing around inside my brain with a wicked grin on its face, cackling away to itself whilst deciding what part of my body is going to do what today.

So little alien if you can hear me, as much as I can understand that what you are doing in there must be a hell of a lot of fun, could you give me an hours break? Just so my muscles can relax.

xx