In this month’s linkup party hosted by A Chronic Voice, I’m talking about researching, reusing and recounting when you have a chronic illness. This means being your own investigator, attempting (and failing) to count meds and the oh-so-controversial plastic straws. You can read A Chronic Voice’s post for this linkup here.
The prompts for this month are:
I’ve been chronically ill for a little over two and a half years. About 18 months ago, I became my own investigator. I was desperate to find out what’s wrong with me, so I started researching and googling to try and work it out. Unfortunately, this didn’t work. What I have didn’t show up in any of the symptom checker results.
I still research things, though. When a doctor told me he thought I have Ehlers-Danlos Syndrome and dysautonomia, I researched those. When I was paralysed, I tried to find out what was going on. In June when I first started having seizures, I was googling symptoms of dysautonomia to see if seizures were a symptom (this was before I had my autonomic testing which showed I don’t have dysautonomia). When I was diagnosed with Functional Neurological Disorder and Non-Epileptic Attack Disorder, I researched those.
I research everything because I need to know what’s going on in my body. I research everything because I need to know what I can do to help myself. Google isn’t always a bad thing.
Almost everyone nowadays is trying to be more eco-friendly, myself included, but (and please don’t hate me for this) I’m going to talk about plastic straws. Up until a few weeks ago, I was using metal straws in every drink I had. It’s so much easier and less painful for me to use straws than to keep tipping my head back to drink – there’s also less chance I’ll end up tipping it down myself when my arms get tired or have a seizure because I don’t actually have to hold the glass, I can just rest it on the table and drink through the straw.
That was until I was in so much pain I couldn’t eat or drink. Now I have to have a Fortisip (nutritionally complete drink) twice a day so I get in calories and don’t get dehydrated or malnourished. The pain has triggered my seizures, so I have to spend every day lying in bed so I don’t hurt myself again. This means I can’t sit up enough to drink my Fortisip – or any other drink – without a straw. I have to use a plastic straw because it’s the only one that bends enough and doesn’t hurt my muscles when I try to drink. Using a plastic straw means I can pierce the foil of the Fortisip and create a seal tight enough so it won’t spill everywhere when I have a seizure while drinking.
Knowing how many tablets you have left is pretty important because you need to know when to ask for a repeat prescription. Annoyingly, counting is one of the things I struggle with due to brain fog. I have to count and recount and then recount again, just to make sure I haven’t under- or over-counted.
It’s not just brain fog that means I have to recount everything – my distorted sense of time makes me recount everything, too. Sometimes I think it’s March, even though it’s September. Sometimes I think I’ve been sick for two years, even though it’s been over two and a half years. It can get annoying and upsetting, but it’s something that happens so I just have to deal with it, hoping it will eventually go away.
If you enjoyed this post for A Chronic Voice’s linkup party, you can read my other linkup party posts here.