Slightly on the huh!

I grew up with that saying, used to describe anything and anyone who was a bit wonky, and had no idea that it was unique to Suffolk until I married my Welsh husband and he had no idea what I was on about!

Recently it’s come back to me; ‘on the huh’ is definitely the best way of describing my feelings, emotionally and physically, about my recent unexpected diagnosis of Epilepsy. I’ve always had a tendency to faint; to suffer from tinnitus; and to get weird bubbling anxiety feelings when I’ve got nothing to be anxious about, always put down to a combination of low blood pressure and stress, but an ‘out of the blue’ tonic clonic seizure early in March put me in A & E and a Neurologist has diagnosed Epilepsy. He believes that all of the fainting and anxiety issues were seizures and that I’ve probably been suffering from undiagnosed Epilepsy for years.

So now I’m on medication for life and I’ve been banned from driving on medical grounds until I can go at least 12 months seizure free. Life is suddenly very different and I’m struggling to feel like me. Dealing with the enormity of the diagnosis is hard and I lurch from feeling like my world has been turned upside down to feeling extremely grateful that it’s not anything worse — the scans for a brain tumour certainly helped to put my life into perspective!

But more than the emotional turmoil are the physical and practical issues:

. I’ve been put on Keppra by my Neurologist, 1000 mg a day for now, and the side effects are making me feel extremely unwell — I’m sleepy, having mood swings and my brain feels like sludge; my legs are shaky and weak all of the time; and my hands have been so shaky a couple of times that I’ve struggled to hold a pen.

. Work have been great but I’ve had to drop to working no more than 3 days a week as it’s all that I can manage at the moment — this makes life difficult for my colleagues and leaves me feeling guilty.

. Not being able to drive means that I now rely on public transport and, with the bus stops nowhere near to where I live or work, long walks and a long bus ride have turned my 20 minute drive in and out of work into a 1 hr 30 min marathon and added considerable stress and exhaustion to my day. As stress and tiredness are probably some of my seizure triggers this is really not great but I love my job and need to work to retain some sense of normality.

. My poor husband is bearing the brunt of my emotional outbursts at the same time as his life is also having to change to be the only driver in the house — shopping, trips out, visiting anyone or anywhere, lifts for the kids etc, now rely on him being the driver every time.

. And the bureaucracy that needs dealing with is endless — notifying the DVLA was relatively straightforward but the car insurance and holiday insurance have been a nightmare. After 3 calls to our car insurers, resulting in them twice incorrectly completely cancelling our insurance policy, I ended up in tears and gave up — not like me at all but at a time when I’m feeling so emotionally and physically fragile I just haven’t got the resilience to deal with the idiocy.

. The bus company have been one of my ‘favourites’ — now I’m not allowed to drive on medical grounds I’m entitled to a free bus pass which, as the fare to work is £8.00 return each day will be great to have. To apply I had to send a copy of my letter from the DVLA to the bus pass issuing authority at the local council which I did, they replied saying that it wasn’t the right letter as, although it stated that I’m not allowed to drive because of Epilepsy, it didn’t state that I didn’t abuse drugs or alcohol!!! I rang DVLA who said it’s the only letter I get and that the bus company were mad. I rang the bus pass issuing authority and told them what DVLA said, (without the mad part), and they’re now insisting that I get a letter from my GP to confirm that I don’t abuse drugs and alcohol! I rang my GP and was told that I’d need an appointment to request a letter, for which they’d be a charge, so now I’m going to be taking an appointment from someone who is unwell and needs to see a Doctor just to satisfy a bureaucrat!! Interestingly, the bus pass issuing authority is the same local authority for whom I work but that seems to make no difference.

Two weeks before my diagnosis we got planning permission through for an extension we’ve been wanting to put on the house. We’ve been planning this and looking forward to it for a couple of years now so it’s very exciting but now we have to consider moving house. We expected this to be our forever home, we live in a lovely village and have fab neighbours, but it’s really not an ideal location for me now that I can’t drive as the expensive and long bus route to the local town where I work is a very erratic and irregular service, and my closest family are 3 hours away. But where would we move to? Assuming we could sell our house which is difficult at the moment, do we move into town or do we move nearer to family — both would require serious compromises and upheaval for both of us and for our children.

So ‘on the huh’ really does sum up brilliantly how I’m feeling. Thanks Suffolk for putting so perfectly in to words the wonky, unbalanced, slightly fruitcake, state of mind that I’m in and for giving me a saying that never fails to make me smile!

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