I got a letter from the hospital yesterday, dated the 23rd of May. My referral as been marked as semi-urgent (whatever that means), and I have a 2 to 6 month wait to see a neurologist. This is not even for the MRI and EEG I’m waiting for… it’s just to see a specialist. I hate the public health system. I really, really do. It’s existence means I cannot get any health insurance cover, which in turn means I have to wait, and worry, for up to half a goddamn year to know what’s going on with me.
I had made my peace with the fact that I was unlikely to ever get any help for my ME and fibromyalgia after writing the blog entry I linked above. But then the seizures happened and now I’m completely at the mercy of the public health system. I need their help because I cannot “just live through” this particular health issue. Seizures have the potential to be dangerous, and knowing why I’m having them could help me prevent them. If they can’t be prevented by changing my habits or whatever, at least I can be put on the right medication. The ones I’m on now seem to be working for the tonic-clonic seizures, but I’m pretty sure I’m still having partial seizures.
I have since come to find that the “dizzy” spells I was having back in January which have continued on since then could have been partial seizures leading up to the big event. Now every time my brain feels like it’s sliding down my head (which is basically what the spells feel like), a feeling of dread washes over me. Sometimes when they happen, I feel the need to move myself from wherever I’m sitting or standing to the floor, couch or bed, just in case.
I don’t even know for sure that these spells are connected to the seizures, but not knowing this is causing me to be so far beyond anxious that it has basically ruined my life. I had to drop out of university. I live in constant fear that I could have a seizure when I’m not near a soft surface without things I could hit my head or any other body part that can be broken around me. I worry that the seizures could make my ME and fibromyalgia worse, especially because the amount of muscle tension that goes on during a convulsive seizure. I feel like I’m still recovering from the first two seizures I had.
And then there’s Sam. I feel like I am letting him down by having these seizures on top of everything else. He understands but I don’t know how long he’ll be understanding for… especially if I’m constantly on edge for the next 2 to 6 months and quite possibly not studying or in employment. I know that even if I loved someone as much as he loves me, I don’t think I could deal with all of the bullshit that goes along with chronic illness and the accompanying mental health issues. I know that says more about me than it does about Sam, but that’s another thing I am fearful of. That Sam will start thinking the way I do about being in a relationship with someone who spun the wheel of bad shit and it landed on poor health.
I’ll admit that I am probably writing this because I am currently battling a low-grade flu which I’ve had for almost a week now. It’s really frustrating me, so I’m doing a lot more thinking about my health in general. I’ll probably be back to “normal” once it buggers off but until then, I’m just going to embrace being an absolute nutcase.