Wife and encephalitis

[Cowsmart]

My wife took ill with HSE back in May, it was diagnosed to begin with as Covid and to get a test. Nearest testing station was 100+ miles away but managed to get a slot the next day. We drove there and tested, just as we got home my wife had a huge seizure and slumped unresponsive and not breathing with eyes open. I honestly thought my wife of 30 years had died sat there next to me in the car. However after 20-30 seconds she started shallow breathing and a visit by ambulance suggested she had had a panic attack (it was of course HSE that caused the seizure). After 2 days the test came back negative, but my wife was getting worse, so doctor booked her in to hospital for tests. She was taken in via the Covid entrance and only after the hospital test came back negative would they start other tests. ( I was not allowed in due to covid) after 12 hours I received a phone call from a consultant explaining scans had picked up swelling on my wife’s brain and the prognosis was not good, either meningitis, encephalitis or listeria. They took a lumbar puncture and started on antibiotics and antivirals. Came back as HSE. I was trying to work look after the house and expecting a dreaded phone call giving me the worse news. She came home a few days later and completed a 3 week course of antivirals via pill form, as the hospital was causing her more distress. Anyway it is now November and I have just been forced to give my job up. Amy is not the same woman I married, I can come home at 11am to find her drunk with the gas hob on burning food...

Really struggling to cope, money running out, facing eviction, no where to turn... regards Lee

[jmeg24]

I’m so sorry you are going through this. Your story is very similar to what happened with my mom this summer. Are you getting any support from her doctors? Is she receiving any rehab care or therapy?

HSE is life changing. I miss my “old” mom every day. We are just praying she continues to improve and recover over time.

[so_rogers]

So sorry to hear what you and your wife are going through Lee. Is she having any rehab or ongoing support? My husband found my illness very hard and sought support from the Samaritans - I know they helped with giving him an outlet to voice how he was feeling and also for support.

[Sam-b]

May might seem a long time ago but it is still early days for her. Is there a branch of Headway near you? Have a search and see where your nearest branch is...they are helpful.

[Paula-38]

I 'm so sorry to hear about your poor wife and that you are also struggling too. I am well aware that HSE is a life changing illness and that's understandable.

But I personally have had a full lifelong HSE journey but I couldn't say it has changed MY life or nothing. I know as daft as this might seem but there has never been an 'old me' or 'new me' like other people most probably because everyone is different. It was 1977 I had it and there was no antivirals out in those days but I was treated with antibiotics similar to your wife treatment wise and I DID suffer from seizures at the time.

I sincerely hope that your wife gets all the treatment and whatever help that she is entitled to. I totally understand that she is not the same person you married but to me most importantly is that she still has a life to live like the rest of us so "accepting her as a person the way she is now" is the best way to look at it and there is plenty of time and room for improvements as yet because it's still only early days.

I wish her and yourself the very best of luck!

Hope this helps.

[Cowsmart]

Thanks all, just waited 4 months for a Nero psychologist to tell us my wife has severe memory problems. I knew that!