Zombies Have More Energy! 

I know I’ve often said fatigue is the hardest thing to explain. I know from speaking with others that Chronic Fatigue is incredibly misunderstood by those that have never felt its effects. The nearest most people can compare it too is feeling tired, and that’s like comparing a whisper to a shout. 

I’m deliberately trying to write this now whilst I’m in it, even though just holding my phone and touching the keypad is stupidly hard work. I feel fatigue every day, it never leaves me, but two or three days a week it overcomes all and I am capable of nothing but sleep. 

I’m just coming through a fatigue flare, I slept around twenty  hours on Sunday, eighteen yesterday and about twelve hours last night. I’ve been awake since 11.30am this morning, though I use the word awake loosely, zombies have more energy! I’ve literally fumbled my way from the bed to the sofa, and here I’ve stayed. I could list a few easy metaphors, walking through water, seeing through fog, swimming through quicksand but none quite capture the completeness of fatigue. 

It’s as if every limb of your body is filled with lead, your thinking is slow and clumsy, you fumble and drop things, and you seem to have suddenly lost the arcane magic that allowed you to coordinate limbs, judge distance and weight. Covering the ten feet from the sofa to the kitchen seems a marathon, and I drop onto my kitchen stool to rest before attempting to lift my arm and switch on the kettle. 

I suppose the nearest obvious experience to understanding fatigue is the flu, but please know I mean Influenza, not your last bad cold. Flu is actually an apt comparison, as actually very similar processes are being undertaken by the body. 

Our immune systems are fabulous and complex, and most of the time they are incredibly efficient. So with an enemy to defeat, for example the flu virus, the immune system does two things. One – attacks the virus, and two – shuts down all non essential systems so all energy is diverted to repelling the enemy. Simple and to the virus, deadly. 

However with RA our immune systems are unfortunately badly confused, and they daily try to ‘repel boarders’ that are actually our own selves. So the shutting down or fatigue, is constantly being ordered to allow us to heal – except its not needed. 

RA is of course just one potential cause of my fatigue, I also have Fibromyalgia, and my GP believes Chronic Fatigue as a separate diagnosis. I’m kind of past the point of minding at the label, I’d just like a cure please. 

Interestingly I’ve today received a letter from the Centre for Fatigue Services at the Royal National Hospital for Rheumatic Diseases in Bath. I’ve an appointment in the next few weeks. Both my GP and I are quite intrigued, she has no idea exactly what they offer or do as I’m the first patient she’s managed to get through their screening process (Nine vials of blood for tests).

I’ll certainly update you on the what and the how after I’ve been to see them, and if I need a reminder of how fatigue feels on bad days I can refer back here 😉 

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#rablogweek 4 – The Pain of Pain Meds 

The pain of pain meds – Pain medication prescriptions are difficult to obtain and scary to use. What horror stories do you have because of new laws? Maybe you have been treated badly at the pharmacy or by family members? Tell your story today.

I saw today’s prompt and it immediately reminded me of how lucky we are here in the UK. I’m sure many patients here are unaware of just how difficult it is for our fellow patients, in America particularly, to obtain pain meds, or even just their RA meds. 

I’ve never walked into a doctors appointment thinking how much is this going to cost me. I’ve never been refused pain medication. I’ve never had to choose between getting this month’s meds or buying food or petrol. I’ve never had to be drug tested before being prescribed the next months pain relief. Unfortunately all of these are everyday day realities for RA sufferers in the US. 

I’ve posted previously about pain meds, and no doubt will do again, it’s a topic that is unfortunately treated with disdain and judgment by many, including the more ignorant amongst our  journalists and politicians out there who happily call us addicts with no knowledge of the very real decisions we take daily about our pain relief. 

I often think the biggest misapprehension about pain meds is that they take away the pain.I wish! What they do is dial it down. Think of it as listening to music really loudly, then turning the volume from 10 all the way down to 2. It’s still there in the background, but at the lower level you can work around it, and get on with your day. 

Second annoying misapprehension? We’re all getting high. Cue loud ironic laughter from across the chronic pain community. I have never gotten high from a pain med, not even opioids which I use daily. I’ve been nauseous, and occasionally even vomited.  Not exactly tempting me to up the prescribed dose or take extra for a laugh. Yet that is my choice when my pain is really severe, I can take oxycodone and stop wanting to cut a limb off, knowing that instead I’ll feel severely nauseous for the next hour.

But – at least I can get my medication. My GP prescribes my pain meds without fuss.  I’m guessing this is because we have a good doc/patient relationship, we discuss regularly how I’m doing and she knows I don’t overmedicate or abuse my pain meds ergo I have no problem with getting them. 

I honestly don’t find using pain meds scary. Maybe because I see them simply as one of the tools in my RA toolbox, they sit there alongside heating pads, voltarol gel, my RA meds, compression gloves, wrist splints, crutches, meditation, aromatherapy etc. 

I also don’t buy into the addiction BS that the press tends to throw around. I don’t know the figures for the UK, but I do know in the US addiction rates among patients who are prescribed opioids is less than 4%. Opioids just aren’t the big scary med they are made out to be. I worry more about the potential effects on my liver. 

So, yes, I will continue to use my pain meds, and I will do so without any shame. I will also continue to try and educate anyone who chooses to judge me, or anyone else,  for making an informed and rational decision about how I manage my pain. Walk a mile in my shoes…..