Help Terri & Tom

*PLEASE SEE UPDATE

Hi, I’m Terri. As most of you know, Tom, my partner, is not in the greatest health.

At age 30, he was diagnosed with ankylosing spondylitis which affects his spine and hips, reducing his mobility and making everyday things painful.

His heart (he does actually have one apparently ) goes into atrial fibrillation probably once a month in recent years. Initially he was put under and his heart was shocked back into sinus rhythm, however as of late this has been managed with medication.

But I’m asking for help following the most recent issue. On Saturday 25th March, Tom was not himself. He was chatting utter rubbish on and off through out the day and I knew something wasn’t right. I videoed one of the conversations in the hopes I’d be able to convince him to go to hospital but I couldn’t. I suspected he could be dehydrated following a tummy bug he’d suffered on Thursday however that wasn’t the case at all. I sent him up to bed around 8.30 whilst I took Olly the collie out for his final walk. When I came back at 9pm, I went up to check on him and he was really hot. I got him to take his hoodie off and he went straight back to sleep. Within seconds I heard the most horrendous noise and with that, he went into what they call a tonic-clonic seizure which lasted 5 minutes.

Cut to the diagnosis… after CT scans, MRIs, EEGs, a lumbar puncture, bloods and MOCA tests, it’s been confirmed that he’s suffered from a type of encephalitis which is an infection in the brain.

The medication he takes for his AS is called adalimumab and it compromises his immune system which means he’s more likely to contract infections and diseases and in typical Tom fashion, he doesn’t do things by halves

I’m asking for help because going forward, I’m already using all my holiday allowance at work and any extra time I have to take off after that, and days off I have for appointments will be unpaid.

I have to be with him firstly because he is still a high seizure risk and secondly because of the effects it’s had on his memory; he’s unable to recall/communicate important information, he still doesn’t fully understand the details of what’s happened to him. He’s unable to drive and we’ve been advised that whilst he’s still on IV treatment at home he shouldn’t be left unsupervised. Add our young son and a crazy dog into the mix… I just don’t want to be in a position where I have to pick between working to pay my bills or taking care of my family.