What Keeps Me Going

I actually wrote this a week ago, but have been too knackered to proof-read & post it. So yeah, pretend you’re reading this a week ago… Or not. Same pills today.

“That’s a lot of pills!” exclaim my friends when I see them in the evening and they see me take my evening painkillers. This is true, but I’m held together by a lot more.

There’s a trend of people with chronic illness posting photis of their pills – although it may look like “sicker than thou” behaviour, it’s actually a response to people who see us functioning and berate others who don’t have the capacity and/or backup to do the same. This isn’t a positive attitude, or other such inspiration porn nonsense getting us through, it’s a shit load of pills, coping strategies, and people who carry us (sometimes literally). So let’s take a look at today as an example…

This morning started at 6am with a cup of coffee, overpowering nausea, and vitamins! Heart rate 56, blood pressure 86/62.

A hand with a variety of vitamin tablets

Due to the joys of Ehlers Danlos, I simply don’t digest or hold onto vitamins so need to take high doses to gain any effect. Other times, my stomach holds onto drugs for a few hours then digests them all of a sudden with the next dose. Because there’s nothing scarier than your stomach having a parasitic grudge against you. This morning contains:

  • Multivitamin with extra iron
  • Cod Liver Oil with glucosamine, both of which are good for joints, reduce inflamation, and tissue repair
  • High dose vitamin E to bolster immunity and improve circulation (useful for keeping POTS in check)
  • Evening Primrose Oil – because of lady things

Couple this lot with a naproxen to dull the aching and I was ready for breakfast. As usual, it’s a cinnamon pastry swirl thing which is basically the only thing I can eat in the morning without wanting to vomit.

Mr Geek gets me washed & dressed, then I can paint my face. Being over-tired at the weekend sparked off my rosacea, so beneath the foundation is a layer of Rozex – this stuff is miricle cream for rosacea in general, but it attacks the evil deep cysts that appear when nothing else does. It’s a mild antibiotic that restricts blood flow around the skin, sort of like acne cream but for inappropriate immune responses.

A hand hoding a used tube of Rozex cream

Cup of coffee #2 comes into work with me & raises my blood pressure higher than the previous undead level. HR 65, BP 102/73.

Work is a welcome distraction and despite feeling a bit overwhelmed right now with marking coming out of my ears, getting into some meaty project work took my mind off wanting to hurl. At the same time, I also kept sipping frim my bottle of diet coke which is another good way to settle stomachs…. And yes, I know diet Coke is the root of all evil, but I’m not being sick, so meh.

Lunchtime rolled around & I looked at my snack pasta & made a face, so opted for the bottle of slimfast in my bag. I’ve tried the medical ones & build up shakes, but I can never stomach them. Slimfast works for me, so I’ve stuck with it. Add in some Naproxen as a pain relief desert because my neck is sore & my back is in icy pain. HR 96, BP 91/65 (eating carbs doesn’t suit me but how else do I get through the day?!)

Final lesson of the day started with a mild headache from trying to (and failing) listen in big conference centre meetings*. As the lesson went on, the lovely flashy lights started and the right side of my face thumped. Metaphorically limping back to my office, I could’ve cried when my lovely colleague signed to me to ask if I was ok. The pain in my head was pulling my hearing levels down further & the brain power needed to lipread was too much. I was really lucky to catch the migraine early and attacked it with a Sumatriptan and Dihydrocodeine as what had been one side of my face was now in my spine (see my migraine post for why all the big drugs). I could literally feel the fog lifting. Bliss.

Unfortunately, post headache I’m tired & foggy and by the time I get home at 5pm I can’t function verbally or focus enough to lipread. The girls & I head up to bed to watch Bob’s Burgers & rest.

After I’ve semi-napped, Mr Geek brings up tea of grilled salmon & vegetable rice. It’s bland enough to et, but tastes nice. For the 4th time this week, we eat dinner in bed as I’m too exhausted to sit at the dinner table.

Evening drugs of:

  • More Dihydrocodeine – opiate painkillers that control my baseline joint pain well
  • Gabapentine – this is technically an anti-epilepsy drug, but it works well on the nerve damage pain.
  • Vitamin D – massive doses of this reduce joint pain, increase energy (ha), improve bone density, and make me a little ray of sunshine
  • A few others to deal with the ahem.. side effects of the opiates

Around 11.30pm my neck pops so hard that it triggers my spine being an arsehole again so Mr Geek measures out a safe dose of liquid morphine to at least help me sleep.

So there you have it. Before you chastise someone for not working through ill health because you see people with chronic illness “coping”, remember what goes into that image you saw. We are excellent actors, but also have a supporting cast of narcotics, and people who feed us, dress us, and take on all the jobs around the house that we can’t do because we’re busy looking like we’ve totally got this.

Even so, I’ve totally got this ok?

…. As a final word, I am a firm believer in science and I am perfectly aware that my headaches are triggered by orthopedic issues. But that doesn’t stop people giving some interesting advice /cures! Here are some of my favourites:

1. Head-TENS – Now I’m all for TENS as part of my toolkit, but I’m not up for electrocuting my heart or my brain.

2. Sex – with a migraine? Ha. Hahaha. Hahahahaha! No.

3. Um.. Pulling the blood from your head! You know, I’m not even sure what’s going on here even with the explanation. The internet needs a child lock.

*please don’t stand in front of windows when presenting. If people are lipreading, it’s nigh on impossible.

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Maths & Empathy Lessons for Politicians

There’s been a bit of a hoo haa on Twitter recently over the changes to how opiate painkillers are prescribed in the US. Not unsurprisingly, it’s left a number of chronic pain suffers rather nervous. And not just in the US, but over here in the UK where we have a distasteful habit of following on America’s heels like a irritating younger sibling.

There’s a lot of political bluster about the whole thing and lots of statistics being used to show what a terrible problem opiates cause. But I have some questions:

Opioids (including prescription opioid pain relievers and heroin) killed more than 28,000 people in 2014, more than any year on record. At least half of all opioid overdose deaths involve a prescription opioid

– CDC

Firstly, there were 318.9 million people in the US in 2014, so 0.0127% of the population died of opiate related causes. And 0.00639% of the population died from prescription based drugs (we can assume the rest were illegal…). Of this, how many were accidental or addiction related overdoses? No? Ok. How many were deliberate overdoses?
Is this a drug problem, or a mental health care issue?

Ok, let’s keep going with the maths (basically because maths is amazing)…

In the same year, there were 13000 gun related deaths. So put side by side:

Prescription Opiates: 0.006%
Gun Related: 0.004%

Now neither of these figures takes suicide & accidental death into consideration, but one has a potential to be used to help those with terminal illness (Just for total clarification, I’m referring to the opiates), so there is the potential statistically that the numbers are skewed as how were those deaths classified? But also, why is the 0.006% an epidemic that must be crushed, but 0.004% can only be solved by introducing more of the metal things killing people?

Ahem, a quick interlude for a nod to ‘Guns don’t kill people’. (Also, US friends – check out their alternate song, Your mother’s got a penis. You’ll thank me)
https://youtu.be/ICG0MuzEYzw

Right. Now that’s done…
Why are people so pissed off by politicians telling chronic pain patients no more opiates? Well, their carefully thought out alternative is over the counter drugs like paracetamol.

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Now before telling me that I probably just need a paracetamol because pain is mostly mental, I’d like you to yank your finger out of its socket. (We’ll start small). Hurts doesn’t it? Have a paracetamol.

Give it 24 hours. Now yank your elbow out. No, actually dislocate it & tear some muscle for good measure. Different arm. Take a paracetamol. And keep working. Don’t expect any handouts. That’s just laziness.

Same day, shift your hip out of its socket. Not all the way, but enough to grind bone against bone. That’s a big one, so you can have ibroprofen & an ice pack.

Next day… You’re not healed? Aw… tough. Go to work. Your spine shifts out. Paracetamol.

Next day, out goes the knee… am I making my point yet? I haven’t even got to the internal organs, muscle spasms, co-morbid diagnoses, & CRPS. It’s crap. The very fact that opiates make my general pain levels bareable means that I continue to be a productive member of society albeit on wheels & a bit wonky. Your alternative is a screaming mess.

This week one of our online EDS community took her own life because she couldn’t go on with the continued pain. She was 23. I’ve found myself several times this week staring at my phone & wondering if there were any signs that we could’ve spotted, or more support offered. But constant long term acute pain does that to you. It makes you stir crazy & pushes you to the point where you just want a break. Her death sent ripples of shock through many communities and it hit home how close some of us are to just saying enough. It would be easy to blame the conduit for her passing – it’s a tangible thing to blame. But the root cause was unmanaged, daily & unrelenting pain. I wish she knew how her loss has rippled through people shed never even met and that each of us empathises and wishes her peace now without any judgement as to why she didn’t fight longer. 

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I think the laboured point I was trying to make there is that you can’t have it both ways. Pain relief, or productivity. With sufficient pain management, we have incredible potential, but left to ‘man up’, there will be more like Sarah.

And how horrendously offensive to casually place people with chronic pain taking controlled drugs in the same category as heroin addicts taking Street drugs cut with God knows what. That’s not just sloppy science, that’s bad maths. And there’s no excuse for that.

Bad show America. Very bad show.

Testing 123

This weekend is my final chance to make utterly sure that I want to return to my GP and hand back the Tramadol. I’m also going to hand over these blog posts as they are more “at the time” accounts. (Like childbirth, after the event the more unpleasant bits are blanked out).

We decided to wait until Friday night to give tramadol another go at night after last week’s lack of sleep.

I took 100mg at 9.30pm alongside the usual gabapentin. On previous nights I have taken 60mg dihydrocodeine and 2 x 30mg/500mg co-codamol which takes away just enough pain to sleep from 11 ish until 3, then with another 60mg of dihydrocodeine I get through to the morning.

It’s 2.30am and I’ve not got to sleep yet. My right hip is throbbing and my right knee popped out as I turned over. There’s throbbing and pressure pain all down that leg. My lower spine & pelvis is burning, although the sciatica remains at bay. Higher up, my mud back aches as do my shoulders – my left shoulder is sharp and  stabbing as I move (from my collarbone being slightly out and won’t go back in easily). I have a headache that is more of a neck ache that is hitting the back of my head.

I’m on a definite 9 on the pain scale right now. I’m blogging both for reference and as a tool to remain calm. I’m using breathing techniques to control my breathing and remain in control of my pain.

2nd dose of 100mg tramadol taken at 2.40pm.

Ok, dose 2 had more effective. I slept on and off until 7 this time and woke up with my teeth clenched so hard that my jaw aches (it was already sore as it had popped out at school on Thursday ).
4 hours broken sleep is not enough though, and I shouldn’t need to be held like a small child just to get though the pain.

My leg has dulled now, my mid back pain has spread out to my ribs & my elbows have joined in with my shoulders. However, I think now having done this experiment under a number of conditions I can safely say it doesn’t work for me, but I’ve given it my best shot.

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Pain Guineapig

My GP has decided to play with adjust my painkillers as we had discussed this week that I’m developing a tolerance of the dihyrocodeine /co-codamol combo that I currently take (were leaving the gabapentin levels alone as I can’t tolerate any more without becoming a zombie). We’re both of the opinion that maintaining a tolerable level of pain and attacking break through with tens, heat and swearing is much better than trying to deal with screaming agony. I’ll accept that sometimes it can’t be avoided, but let’s not poke a wasps nest when I don’t have an epipen eh?

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Anyway, before we look into any more or any stronger opiates, she suggested trying tramadol. I’ve resisted it before as it’s got an unpleasant reputation for addiction and there’s no telling if it will help or hinder. So it was agreed that I’d try them at 100mg and report back in a week or so, but would hold out until the weekend to take them “just in case they don’t agree with you”. This can be roughly translated as amyltriptelene made you projectile vomit like an audition for The Excorcist, we haven’t a clue how you’ll react.

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I’m pleased that I’ve found a GP who will talk to me like an intelligent person, explains their thinking, and is up front that much of what we’re doing is guess work. I appreciate her honesty.

I took the first dose tonight in place of my usual codeine cocktail and so far so nothing. Aside from a weird potsy feeling (palpitations) and tingling in my calves.

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edit: 2 hours in and the last set of painkillers have thoroughly worn off, but the tramadol has not kicked in and oh God my joints are telling me about it. Mr Geek is sleepy and I have a pneumatic drill taking my SI apart, whilst my legs are burning and my wrists and hands feel like they have hot sand sliding through them. So far, it’s about as effective as a smartie 😦

Morning update: I think we can safely say that tramadol doesn’t make me sick, but equally doesn’t stop the joint pain. 3am – woke up on a pain scale 9 with tears streaming down (I’d dreamt that I’d broken my arms and legs whilst walking the kids to school, but realised when I woke up that it was the pain interfering with my sleep). The only thing I could compare it to is when I dislocated & fractured my elbow – same kind of unreasonable panic inducing feeling, but in my hips, elbows, knees and back. Initially, it didn’t even occur to me to do anything other than curl up and cry. Eventually, I pulled myself together, took some dihyrocodeine and put the electric blanket on and it died down a bit.

I’m not going to write them off after just one dose, but I will vary the parameters. I’m giving myself today to recover and get a handle on my pain levels, then I’ll try swapping them in for a daytime dose.

Endnote : I know EDS is painkiller resistant, but it’s so frustrating that what works for one of us, doesn’t for all. Still, in my own words to my studebts: “Chin up chicken. We’re not beaten yet”