“There comes a point where we need to stop just pulling people out of the river. We need to go upstream and find out why they’re falling in.”– Archbishop Desmond Tutu
When the pain, illness or injury first occurs, we get to work to address the immediate issues. We try get to a space where our bodies feel more safe and stable. Once they are somewhat manageable, we then need to investigate and work on finding the source.
In the first stage, we start to get our symptoms under control and stabilize. Our progress is linear at this time, we started from a rough space and then we gradually feel better and manage.
This stage can be really difficult when dealing with other people’s expectations of your recovery. It is assumed that you are healed and can carry on as before. Managing the symptoms is not the same as a long term solution or cure. We might be able to manage better but the problem is still occurring upstream and we are doing enough to keep afloat in the river.
Once we start going upstream to find the continuous, recurring problem, that’s when our progress becomes a tangle of ups and downs, backwards and forwards, and plateaus.
We trial new medication and treatments. Sometimes they work, sometimes they don’t, sometimes it’s a short term fix and other times we don’t know the effect for a long time. We lose some of our stability that we had when we had our symptoms under control, but the goal is to eliminate as many symptoms as possible and that means digging into the problem.
It can be extremely hard to explain this to people who have not been through the process before. You get asked questions like ‘Are you making any progress?’ and ‘Do you need to see a new doctor if what you are doing isn’t working?’. These are valid questions. Long term solutions can take a while to work out and stick, and giving up halfway through the process doesn’t give you solid answers. Everything can look like a failure in the middle.
We need to remind ourselves and people asking us questions on our progress that it is a trial and error process. Sometimes you win, sometimes you lose. Every trial however, gives you answers you didn’t have before, both positive and negative. If a treatment doesn’t work out for you, it was worth trying rather than wondering and worrying that you could have done more. If it does benefit you in some way, then it may lead you to similar treatments that could work really well for you.
My progress has been very much like peeling an onion layer by layer. We get a clue, try a treatment and proclaim “This is it! The centre of the onion and all the issues stem from this core problem!”. I can’t tell you how many times I have gotten my hopes up only to find there is another layer of onion underneath. Onion layers are also deceptive – there are the thick visible onion layers and then there are the transparent onion skin layers. It is very rare that you can pull off an entire thick onion layer at once – most of the time, it is tiny transparent onion skin layers that gently lift off. They are like the medical symptoms that go by unnoticed or dismissed because they aren’t a ‘big’ issue. Other times, it may be a slight reduction in symptoms, for example, what was constant vertigo, now only happens in certain situations and in general it has changed to dizziness. It can also be a combination of simple issues that when put together cause major problems for you. It is rare that a huge gain in progress happens, most of the time it is little improvements that build up.
Every piece of information, whether it has positive or negative consequences, is vital for your progress and working out what is going on upstream or in the centre of the onion. If you haven’t already, read my post on starting a health diary and how beneficial it has been for my progress.
Collecting information is the progress in the medical world. The more we know, the more we learn about ourselves, the more that we (with the help of medical practitioners) can get to the core issue.
Take heart and take notes, I’ll keep the light on.
One of the most transformative things that I have implemented in my medical journey was to start a daily diary.
As soon as things get tough, you know you are going to need a few people to lean on. Who is on your team?
The pharmacist is probably going to be a frequent person you’ll see when managing a medical condition, so it is reassuring to get to know them and their services.
One thing I am constantly being asked is ‘what do I do all day if I am not working?’. Here is a little insight into my daily life and health management.
A few words on driving, medical conditions and compromises.
I have learnt that time and expectations are two very dangerous things to try to predict and manage. Now we are all learning that with COVID-19 too.
As someone who has had to take extended periods of time away from the workplace, social and community situations, it can be a mixed bag of emotions when you are returning back into those spaces and amongst a lot of people. I’m sharing my thoughts on the reintroduction process today on the blog.