I was diagnosed with VM in February after a week of being told by a number of different doctors that I had a "severe viral infection" or "migraines". Even though I had been experiencing the most severe headaches I ever had (I've never been a headache sufferer) and extreme photophobia. I was finally diagnosed with VM following a CT scan and LP (the most horrific thing ever). I was then sent home! I was told by the doctor as I was being discharged that "as it's only viral, all you can do is take pain killers and rest".
Fast forward 2 months of absolute hell, sleeping 23 hours a day, extreme headaches, inability to walk, photophobia and feeling like I would never be myself again; I returned to work. I lasted 2 hours, left and on my 10 minute drive home forgot where I lived and how to get home! I didn't even recognise my house when I returned home.
I forgot simple things such as my mum's name, the pin to my phone. And couldn't do simple things such as make a cup of coffee or text.
That was followed by seizure type episodes (not 100% that they were seizures) I would know it was going to happen as I would have a tingling sensation at the back of my head. This was then followed by me becoming a drooling, dribbling mess. Then my head felt like it was going to explode and muscle spasms would start. Often started with just my arm, and then it would be both, then my legs and sometimes even my neck and back would be affected. Once I'd come out of that, I'd be in a weird state where I was aware of things going on around me, people, conversations, noises, even the TV in the background but I couldn't respond, communicate or even let people know that I could hear them. I felt stuck inside my own head. This could last anywhere from 20 minutes to an hour and a half.
Following that I was sent back to hospital, and told that I still had inflammation on the brain. And sent home again! I was told I'd be referred to a neurologist. I received a letter a few days later telling me that it wasn't deemed necessary to see a neurologist and my symptoms were "probably from the recent case of viral meningitis".
Fast forward another month, recovery is going well and due to certain circumstances I have to push myself to be ok - that means returning to driving, returning to work etc.
That was 5 weeks ago - I am still in work. I came back full time (WHY?!) and it is starting to really get to me now. I can never manage the 9am start. I often arrive in work between 9:20 and 9:45. I am utterly exhausted, I cannot get up in the mornings. I have been back to the doctors who following blood tests (which were normal) have re-referred me to the neurology department. I am now awaiting an appointment.
That was last week.
This week I have somehow gone back to having memory problems and confusion. I have a total lack of concentration and constantly feel like I've had a couple of glasses of wine.
Last night, the headache was excruciating and I started to have the jolts/muscle spasms again. It was horrible and today I feel a little like I've had a couple of glasses of wine.
Basically I'm looking for reassurance that this is a normal recovery from VM.
I don't feel like I'm the same person anymore, instead of being the happy, bubbly, loud and talkative 19 year old I used to be, I've been replaced by a miserable, grumpy, irritable and argumentative old woman (that's how it feels) sounds irritate me, people irritate me. And it causes a LOT of conflict in my life. Nobody wants to be around me any more. I feel down, depressed and alone a lot of the time. Like nobody understands. People look at me, and I look the same, I look a hell of a lot better than when I was ill and assume I'm better now. "Oh so you're all better now?" Um. No. Not quite. I feel like it is invisible, and that's why in turn I feel alone because nobody understands. Nobody understands that I get upset because this is not me. And I argue with people for no reason and seem to have no control.
I just need somebody who understands what I'm going through to guide me.