Tag Archives: health

The Medication Postcode Lottery

20 Wednesday Mar 2024

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We’ve lived here in this small city for 8 months now, owned the house for 9 months – not that you’d know it with us not even being fully unpacked, rooms half painted and half-finished. Despite our slow progress, it’s been easy to settle into life here. Our neighbourhood is calm but cheery. The right mix of students and families. Norwich doesn’t have an awful lot going on, at least compared to London, so there’s less choice when it comes to gigs and theatre, but at least we have some choice at all even if the University is the largest music venue on offer! It doesn’t lack in independent coffee shops and record stores, either. Change hasn’t been so hard, I was expecting more pushback from my subconscious. Maybe it’s just that our home is so lovely it’s making it so much easier to adapt. At least for the most part. Nothing is ever actually so simple…

I knew when we moved I’d have to shuffle some medical stuff around. A few things would have to be re-referred up here, but some would stay based in London where the speciality centres were. I wasn’t expecting to find myself a victim of NHS postcode lottery, though. My new GP flagged it up almost immediately when reviewing my medication list – “oh, that might be an issue…”. Modafinil. It’s a narcolepsy medication, which my cardiologist prescribed to me off-label near the end of 2020 in the hopes it would help the crushing fatigue and cut through the brain fog a bit, give me more ‘useful hours’ to work with. It’s not a miracle drug but has made a marked difference to me, especially in terms of preventing ‘rebound naps’ within a few hours of getting up (which used to be almost daily) and in the amount of focus I have (already terrible thanks to unmedicated ADHD, brain fog makes it far worse). On Norfolk’s NHS prescription board, however, Modafinil is Double Red listed (I presume based on abuse potential, not cost), which means it can only be prescribed for narcolepsy and must be prescribed by a specialist in this disorder. This obviously doesn’t include me. I’ve appealed to the board twice via my GP, but to no avail. My next options are to wait 6 months for my next cardiology review to see if they can prescribe it to me directly again (unlikely as they prefer your GP to do this after the trial prescription) or to pay for a private GP appt and private prescription (expensive to the point of being unsustainable long term). Getting some kind of delayed reprieve from the board based on having taken the medication successfully for three years with only positive effects is, sadly, unlikely to happen.

So as of now, I’ve been almost three months without the medication that helped me manage a bit more like a functioning person. For a month or so as I was running out I picked the days I wanted to take the Modafinil, based on how long I’d have to be awake or how much I needed to do that day, and took my last dose on Christmas Day. Inevitably I started spiralling a bit as I reached the last dose, anxious about losing what function, what hours of clarity and ability I had. It’s been better than I’d feared, in reality, but it’s been quite foggy and I don’t feel my year really started until mid-February. It’s nearly the end of March now and this is the most I’ve written at once so far this year (two coffees don’t really have the same effect). Before this happened, I had no idea the kinds of medications that could be affected by moving to a different NHS prescribing area; I thought it was something that only affected expensive procedures like IVF, or expensive drugs for very specific cancers. I knew that some treatments weren’t available in all areas; years of hitting a brick wall with trying to get the recommended hydrotherapy in my London borough come to mind. It never occurred to me, though, that I should double check that I’d still be able to take all my prescribed medication when I moved within the same country!

It feels pretty cruel when it comes down to it, taking away something that was helping me be more productive, less fatigued, more me. I feel sometimes like I wasted a lot of those three years taking the medication, not learning or studying or writing enough, when it might have been as un-fatigued as I was ever going to get. I’m certainly not giving up my quest to get it back, but there’s not going to be a solution that’s both quick and inexpensive.

Force Majeure

16 Monday Mar 2020

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Priorities have changed so quickly in just a few days.
Housing? Not important.
Getting mental health support? Not important.
Attending hospital appointments? Not important.
All that matters is staying healthy and not contracting the virus raging around the globe at the moment. I’ve not had a flu or other major virus since being diagnosed with heart failure in 2018 and I don’t want to put it to the test with something so catastrophic to people with existing heart or lung conditions.

I don’t know when normal life will resume. It’s hard to get my head around the scale of this. It’s unprecedented in my lifetime, my parents’ lifetimes, my grandmother’s lifetime. Friends are losing jobs, businesses will shut down due to lack of customers. People I know are going to die. Everyone will lose loved ones. It still doesn’t feel real.

We’re considering decamping to my grandmother’s for the next whenever because there’s so much more space than in this flat, and if my dad gets ill then my gran can still be looked after without risking bringing in outside help. I’m waiting to hear back from my dad, but my cousin has offered to drive us up to so we don’t have to use public transport. We need to find out whether I can get my prescriptions sent up there or if I’ll have to change GP surgery for the time being first though. No point quarantining to stay healthy if I get ill from not having my meds. I feel so privileged that my partner has offered to stay with me throughout this, even though he could go back to his flat or his family home. It’s a huge sacrifice for him, if he stayed alone he would have far more freedom.

Please stay safe out there (or in there!). Practice social distancing, and good hand hygiene. If you or someone you live with has existing health problems, stay in if possible and limit physical contact with each other if you have had contact with others outside. Keep an eye out for your elderly and vulnerable neighbours. This pandemic has already brought out the worst in people, grabbing supplies from each other and hoarding essentials when some have none – now it needs to bring out the best in us.

 

Spoonless in the South-East

03 Sunday Jun 2018

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[If you haven’t come across the Spoon Theory before, click here for a primer!]

I haven’t written since the end of April, which is far too long. I’m sorry. I really wanted to increase the amount I’m blogging (on average once a month), not neglect it again. I have multiple started/sketched out subjects in my drafts, and even more ideas I haven’t even started on.

What’s stopping me? Frankly, I’m just out of batteries. It feels like I’ve had a handful of good days so far this year. Even for me this is especially bad, and it’s only gotten worse in the last few weeks with a huge increase in pain in my neck and hips affecting my sleep. Fatigue, and brainfog, and pain. Not things that are very helpful when you’re trying to hold a train of thought together. As well as useless I feel quite anxious; writing is the one thing I still have of the “other’ me, the me that didn’t see their health washed down the plughole over the course of a few years. I’m scared that if I don’t recover some ground, I’ll have to put the blog on hiatus – and the Patreon with it (after all, people are paying for words and actions).

Not that nothing’s happened at all…. my solicitor is using my negative experiences with the bus company to teach bus drivers what not to do, and I got my Topshop fitting rooms story in the press, even if it didn’t get as much attention (and therefore positive change) as I wanted it to. I just rarely have enough energy at the moment to go beyond the absolutely necessary – which means my twice-weekly therapy is taking up pretty much all my available spoons. I’m still pretty active on Twitter in the meantime, because it’s far less taxing when I don’t have to write more than 280 characters or attempt to stay on topic.

*flops*

 

Diagnostic Curveballs

26 Thursday Apr 2018

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Maybe it’s because when I have discussions about diagnoses it’s usually with other members of the chronic illness community, but I’ve been equating diagnosis with answers for a long time. I’m used to posts where people are grateful, relieved to have a diagnosis of a chronic illness. To be honest, so was I – they gave me answers to symptoms that had been plaguing me since childhood. “You have asthma”; Oh, that’s why I can’t breathe deeply without coughing. “You have Ehlers-Danlos Syndrome”; Ah, that would explain the constant pain and loose joints. “You have POTS”; Yeah, I’d figured that one out too due to the tachycardia when I stand up. But not all diagnoses are answers to puzzles, but puzzles themselves – as I am finding out.

Dear body, please stop.

2018 has been a ridiculous ride of hospitals and new things turning up so far, mostly within a 10 week period. With housing stress and overwhelming anxiety being my baseline this isn’t ideal, but I thought I was coping until a week or so ago. Being diagnosed with heart failure at 32 was a bit of a shock but the fog quickly cleared and I realised it didn’t really change anything except how I viewed my body’s need for rest and recovery (in a more sympathetic light, by the way – I struggled before with the psychological need to “shake off” the fatigue, especially when confronted with articles about other EDS patients who ran marathons or “didn’t let their condition stop them”). You can’t really argue with heart failure. Even I, who likes to argue with everything and everyone, am trying my hardest not to argue with it.

Can’t we have a one-in-one-out policy?

Then came the Central Sleep Apnea, which was more of a surprise. I did a sleep study in November and the results were revealed to me earlier this month. I guessed I had some degree of Obstructive Sleep Apnea, and was prepared to be told to lose a little weight, or to see about getting my adenoids out or something but no – it’s my brain failing to do its basic job of keeping me breathing. *facade drops slightly* Stupid body, stupid brain, why is so much going on at once? Oh well, CPAP therapy trial coming up, hopefully that will improve my fatigue by a fraction…

*MARCHING BAND INTERRUPTS TRAIN OF POSITIVITY TO DELIVER MORE TEST RESULTS*

Oh good, more unwanted news. My prolactin levels are approximately 25 times higher than they should be, which was unexpected considering the lack of symptoms (aside from the occasional uh, leaky boob). High prolactin levels can be caused by stress, a side effect of medications (notably older generation anti-psychotics), or a small brain tumour in the pituitary gland called a Prolactinoma. My GP suspects the latter due to the high levels of prolactin, and the fact I don’t take regular prolactin-increasing medications. There will be a scan soon, with an urgent request sent by my GP, then whatever treatment follows. Whatever it is, I need to get my levels down as prolactin levels that high can cause a loss of bone density which I’m already susceptible to. I’m not overly alarmed, but I am weary of my body ramping up its trickery.

And I’m annoyed. Very, very annoyed. It’s just too much now. My diagnosis list reads like someone typed “fatigue” into Google and wrote down all the causes. It’s getting to the point where I’m scared to talk openly about my health because it’s just so ridiculously hyperbolic at the moment and I don’t want to start causing eye-rolls and “oh great, Nina is talking about their health issues again” with every additional, bloody stupid, and unconnected diagnosis. It’s just more questions (“is this obscure co-morbid condition causing Central Sleep Apnea?” “is taking an anti-emetic every week or so enough to ramp up my prolactin levels?”), when what I’m used to getting from a diagnosis is answers. I feel like I need a chart on my wall like in dramas about over-involved investigative journalists, with each condition and symptom connected by coloured yarn, in order to keep track of what’s going on. And this is on top of the ever-present housing stress. No wonder I have trouble getting to sleep.

Thanks for letting me get that off my chest. Normal service will resume soon.

 

For Valentines Day I got a broken heart.

16 Friday Feb 2018

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Well, I got the answer to why my fatigue has been getting worse and worse even when my pain is manageable, I’m preserving energy by using the powerchair, and my POTS symptoms are relatively well controlled. On Valentines Day I got was a call from my cardiologist. I mentioned being so frustrated with my current level of fatigue, and that I was considering going to a private specialist. “Well, I could refer you”, he said , “but most of the patients I refer there have hypertension due to stress and fatigue due to burnout, they’re working too hard. You’re fatigued because your heart isn’t pumping effectively. Didn’t you get the letter?” (I had not gotten the letter.)
He calmly explained that they’re recently seeing this kind of cardiac fatigue in some patients, but needed to set up a research group in order to work out what’s causing it and how to treat it, if it can be treated it all. He also told me to start taking CoEnzymeQ10 at a very high dose to try and improve fatigue and retain heart function before my next appointment, when we’ll discuss more treatment options for this and the autonomic dysfunction (both very experimental areas at the moment – trust me so be so bloody niche).

fleurs

I told my friend about the CO2 problem, and she decided I was a plant. I live on photosynthesis.

The next day it got scary, as the letter arrived. It’s easier to take daunting news when it’s coming from a lovely, cheery consultant on the phone, but there’s nothing comforting or reassuring about a page of test results. I’m in heart failure which is causing abnormally high levels of CO2 in my bloodstream, as ineffective pumping action means it doesn’t leave my body at the normal rate. I’m glad I got the phone call first, because it meant the results were easier to decode and I knew I wasn’t in imminent danger because of my cardiologist’s tone, but my overall feeling throughout the day was still one of being scared and anxious, and to an extent it still is. I’ve never had to try and take in a diagnosis before like this, I’m not used to answers coming with other implications; when I was diagnosed with Ehlers-Danlos Syndrome I already knew something was wrong and finding out what it was and therefore being able to access treatment options was fantastic. Here, I didn’t know anything was wrong other than extreme fatigue, which I’d presumed was connected to the EDS/autonomic borkery; it might still be connected, we’ll see what the research turns out, although it could take literally years.

Heart failure at 32. Well, I’ve faced tougher things.

Here’s what I’ve learnt in the last day of nail-chewing and sporadic Googling:
Heart failure isn’t necessarily a death sentence, it’s a technical term for when the heart is not pumping effectively – sometimes due to thickened muscle, sometimes due to cardiomyopathy – in my case it’s still a mystery as to what’s causing it, but we know it isn’t any of the usual suspects, and we’re not expecting it to progress quickly.

I think this is going to be one of those “several stages of dealing” things. I’ve felt alienated from my body for the last couple of days, like something about it has fundamentally changed although of course all that’s really changed is what I know about it. Today I’m focussing on what I know:
I know I feel incredibly grateful that back in 2015 my local hospital’s cardiology department referred me to a specialist heart centre because they themselves didn’t know much about autonomic problems. I know I’m not panicking, because my cardiologist isn’t panicking. I know I don’t want to tell my mum. I know what’s wrong now.