A few people have told me recently that they are on the look out for a way to help me. I REALLY appreciate that and feel loved by that 🙂 … and I have some very special friends who actually live in countries like China and India and have access to all kinds of alternative resources… as well as friends who live in the UK, the USA/Canada and Australia… so in many ways I am very spoilt. I also have a fantastic team of doctors caring for me, and we live in an era of amazing access to information over the Internet and I personally have a specific education that allows me to understand how the body works and many of the medical terminologies etc (Biochemistry).
But how does one search through all these ideas and should you suggest them to me or not?
So here’s the thing. There is no cure for EDS. It’s one of those things that one is born with. You can’t catch it from me, you can’t take it away from me (believe me, I VERY much wish you could!). But some people just want me to try.
Treatment for EDS is purely palliative which is a scary word for many people. Mainly because they associate the word palliative with dying. With terminal illnesses. And for most people this is the context in which it is most widely used. So that fear is understandable. But palliative does not only apply to cancer patients:
When I was diagnosed I was told that there is nothing that can be done for me. This was not cool, and I was pretty annoyed, mostly because I had pretty much worked out what was wrong with me myself at the same time, and had already found a few sites on the web where people with EDS were supporting each other. I hadn’t read much on them because I didn’t want to go down some tangent and get myself worked up if EDS was not what I had, however, once I got the diagnosis I went straight home and resumed my research and there is a ton of stuff out there ON palliative care for EDS.
….. and there are a TON of ideas on exercise (or not), painkillers (which ones, when, for how long), how to get better quality sleep, how to preserve our joints and strengthen our muscles… and a list of helpful things that is pretty much endless… And many of them need trial and error, many work for some and not for others, some are applicable to my particular case but may not be for others and vice versa, … and so we have a real life puzzle or maze to work through.
But to do it, to know what works and what doesn’t and at the same time to conserve my time effort and money, we need to be methodical and we need to be thoughtful and purposeful. If I try two new things at the same time and feel better as a result then which one caused it? If I take it for a few days and it doesn’t help then why throw it out if it is a long term strategy? I need to take one step at a time, and follow each one through to it’s conclusion (unless there are adverse side effects).
Because this process is slow and exhausting and requires doctors and specialists and referrals and so on, there is much emotional and financial stress involved as well as juggling the different priorities and strategies. So we need to prioritise the things we try into those most likely to succeed, most researched, “most likely” in all kinds of ways, to be at the top of the list. This list is already pretty long, and so anything that my kind and helpful friends add, needs to go at the bottom of the list.
This is where this can come unstuck. People tell me as if they have single handedly found me a “cure”, and when I don’t respond with the same enthusiasm, they usually respond in a way that is some form of deep hurt and rejection, which isn’t fair or helpful to me.
To these people, please know that I am keenly aware that you are trying to be helpful, and that you really do care for me. But please also know that your suggestion that I try drinking 2 litres of carrot juice each day, starting from tomorrow, is a problem for me because:
- No matter how remote the chance is of it making a difference, I cannot start a new trial of anything while I am in the middle of another one.
- Both myself and the specialists and doctors who I work with are working extremely hard on my care, even though it is “just” palliative. We have access to an unbelievable amount of information in the world (and they have even more access than you or I), and so if carrot juice will “fix” me, then we will see that out there too and will add it to the list.
- When you bring me a solution that I “have to” start right away, there is an implication that I am not already trying something, …anything, …all the time.
It would be so helpful to me if you have a thought or idea that you think might assist me, if you first find out where I am and what I am doing, and incorporate your idea into where I am at, make it a discussion rather than a solution, instead of shoving it down my throat and being deeply offended that I didn’t take it on board.
I would love it if you would like to work with me as a team member, but please be aware that you are just that, a team member out of a massive team of online and real life support and research.