Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Saturday evening, after a drizzly but fantastic day spent at Ascot racecourse, I found myself lying on my side in the living room in a fair degree of pain after my hip gave way. After a quick feel I was certain that it hadn’t dislocated and the fact I had remained conscious and had not slipped straight into one of my seizures reassured me that nothing too untoward was at play. However my hip, when not spasming, has never been the reason for me falling before, so the fact I was not seizing I felt could not be 100% relied upon. Perhaps my brain had functionally paralyzed that part of my body? Even momentarily, would have been enough, after all my hip had caused me increasing amounts of pain all day.

I still don’t know why this happened. After spending a couple of hours on the floor we eventually got me to my room, and I spent the following day, on bed rest, taking plenty of regular painkillers and ant-inflammatory’s. It is only now on Tuesday that I am walking around without as much discomfort, though I’m still taking regular anti-inflammatory’s. One of the issues I often find with my myriad of medical conditions is judging when to get arising issues checked out. With my bones I usually go by whether the complaint is swollen or not, this is on the advice of a plastic consultant, due to my EDS. However when it comes to the rest of my conditions it can be pretty hit or miss.

When I end up in Accident & Emergency, or when I’m at my GP’s, I often feel like I’m wasting their time because of how often I’m there. The best they can do is patch up the new issue; like sticking a fabric plaster on a cut before getting in a bath. It’s almost pointless because you’re just going to have to stick another one on when you get out, but for the mean time it’ll do. The reasonable part of me knows this isn’t the case, that I need their help and I’m extremely thankful for it. But whilst I’m there I can’t deny that’s how I’m feeling, especially when a lot of appointments involve me battling to receive treatment I need.

Judging when to get checked out is a minefield. So often I leave things until they have reached a point where I probably have made it worse for myself. This seems to be a common issue among people with chronic health conditions. Many of us have accepted that we are chronically ill and that we will have falls or spasms etc., we just don’t want to make a nuisance of ourselves or accept another symptom or injury.

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Comments on: "Judging When To Get Checked Out" (1)

  1. Being able to walk and not having any asymmetry when you compare both sides are promising, but if you want to be sure there is no dislocation you need an X-ray! Although not directly relevant, I know of two elderly people who have walked around with fractured femurs for days…

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