From how to work with your doctor to why you are being failed by the medical system. It’s important to understand the system and the reasons why it fails you as this enables you to fight for better care.
WHAT ARE USABLE HOURS AND WHAT HAVE THEY GOT TO DO WITH CHRONIC ILLNESS?
Usable hours is a way of explaining how fatigue affects your ability to do things. We all have the same number of hours in a day but for someone with fatigue, they only have a limited number in which they can complete tasks.
Above I mentioned how the change in narrative around pain medications is affecting our treatment and part of what has caused this change is the drug seeker narrative.
Unfortunately, it’s true that opiods at one point were over prescribed but this was to people who had no long term need for them. They are after all addictive but what happens when you are someone who has chronic pain that is never going away?
We’ve become obsessed with weeding out the fakers, so much so that we are actually harming those who genuinely need help.
With the rise of the internet and the ability to google your symptoms many have been turning to self diagnosis but what really is it and why is important?
We’ve all heard about doctor google and how you probably shouldn’t just google symptoms as more often than not the internet will tell you that you are clearly dying of the plague, but why is it such a hot topic in the chronic illness community?
Self diagnosis is when a patient uses research to find information on a condition that best fits the symptoms they are experiencing. Often this happens because the patient either doesn’t have access to healthcare or they do but either due to discrimination or fear they are unable to seek professional care.
COVID-19 has ripped through our lives and turned everything upside down but there’s something else going on that until now hadn’t been brought to the public’s attention, and that’s the idea that you can get sick and never get better.
You might have started to see it in the news or online, ‘post viral fatigue’ seems to be cropping up everywhere but what does it really mean and why is it linked to chronic illness?
Post viral fatigue is more commonly linked to M.E. / CFS. Although we aren’t 100% sure why it happens, in a lot of M.E. / CFS cases the patient will become sick with a virus, mostly Epstein Barr (more commonly known as mumps, mono or glandular fever) and after the infection has gone away they are left with the debilitating fatigue and other symptoms.
Why we are now seeing this mentioned in conjunction with COVID-19 is that there are a number of patients, dubbed long haulers, that seem to be having the same issues as M.E. / CFS patients.
Research shows us that it takes between 5-10 years to get diagnosed with a chronic illness. Some stats for specific conditions are:
But what is the driving force between these wait times? Surely not every doctor is useless at diagnosing more complex conditions?
This week I’ve been looking at how you make a complaint to your health care provider.
Surprisingly many people don’t know they can actually make a complaint about the treatment they receive. Like many things with chronic illness this is yet another thing you don’t get told about. So let’s break it down!
There is such a thing as Patient Liaison Teams and they work across the country in GP practices, hospitals and even dentists! They know all the local support groups, work closely with medical professionals and even can help you with understanding your treatment. But most importantly they are who you can go to to make a formal complaint.
But why would you want to?
So it’s been a hot minute since we last spoke and a lot has happened in that time. Don’t worry though this is a completely C word free newsletter! (A rarity in this day and age!!)
Over on the ‘Gram I have been speaking about the ways in which brain fog affects me and the shame that I feel with that. Some of you might not know (or you suspect from my terrible spelling) that I am heavily dyslexic. So much so that I couldn’t read or write properly till I was 7. With that there comes a certain level of shame, having been told for many years that I wasn’t as intelligent as other kids (which is completely wrong BTW).
Oh medication, having been around free range humans (aka those who are not housebound by chronic illness) I’ve been reminded of how much they cling to the idea that medication can fix everything. That when you get sick the doctor’s hand you pills that magically make it all ok again.
Any one who’s been chronically ill for more than a hot minute will tell you this is not the case. That medications come with their own issues and some of them are indistinguishable to the symptoms you are already experiencing, so you are never sure if they are helping or hindering.
I am breaking the cardinal rule of pain club and I am actually going to talk about pain.
It was only the other day, when I was talking with a fellow spoonie friend that I realised to some extent we all actively avoid talking about our pain.
I think in the beginning it’s about not creating too much fuss or even just not really knowing how to handle the amount of pain you are in. But as time goes on I find myself talking about it less and less. It’s not for fear of my network, I have some incredible support both online and offline. It’s more a fear of admitting how bad it really is.
