I like to think of myself as a ‘Neurologist’s Nightmare’ – a nurse by trade, with an interest in neurology and a diagnosis of Multiple Sclerosis to boot. I can nearly sense the dread before I open the clinic door. I come armed with questions – “But why?”, “But why not” and with new research articles, new treatment guidelines that I want to share and discuss. Education is empowerment – the more we know the more confident we can be in our disease management and in our own health care decisions.
MS & Me
I presume you are fed up hearing about the now, not so novel coronavirus. In fact, I am willing to bet that most of us stopped being cognitively inclined to remember which variant is currently travelling around the world at free will. 'Life with COVID-19' as the government now wants us to call the pandemic, has been a trial of mental and emotional gymnastics since the day Ireland was officially added to the global list of coronavirus-targets.
And 'life with' is simply exhausting.
This year's Mother’s Day is a tough one for me. I lost my beautiful Mam on New Year’s morning after a brief illness. The first of everything is always the hardest. My dad died suddenly last year too, both parents aged 60. It's tough but I want to spend this Mother’s Day remembering all the precious years I had with my mam.
“I have MS, but MS hasn't got me” was the catchphrase bandied about by the MS Community circa the year 2000. Have you got MS or has MS got you?
When I was diagnosed, I fell into the latter camp. I over-identified with having MS. In my own head, I was this tragic creature diagnosed in her prime. Instead of being a person who just happened to have a condition, illness, disease or whatever you want to call it, I became this vulnerable, scared, delicate being. I became an MS sufferer.
Grief is the one thing in life we are all guaranteed to experience at some stage of life. When you lose a loved one, a pet or experience any loss you will experience grief. And for those of us who live with a chronic illness/disability, we face grief on a regular basis.
When you receive an MS diagnosis, acceptance doesn’t happen overnight. For me, there was never a ‘light bulb moment’ nor a precise day or time… in fact, my acceptance has probably been put off for a lot longer than is healthy.
It is really hard to move from denial to acceptance, to admitting to yourself that you may need assistance (whatever form it is); because MS is a progressive and incredibly unpredictable disease, there can be extended periods of time when a person does not need to use a mobility aid (or ever for some people with MS).
In the previous post Joan explained the process of getting the VAT & VRT back when you have a Primary Medical Certificate. I have been a disabled driver for a long time, back when I had Relapsing Remitting MS. Now my illness has progressed and I have had to consider the impact of worsening disability when purchasing a new car.
This blog is a guide for anybody who has been granted the Primary Medical Certificate by the HSE and wants to avail of the Tax Relief Scheme. It details the steps I took to get a Revenue Exemption and buy an adapted vehicle.
I got my Primary Medical Certificate in November 2021. I’m not saying this is the only way, but it worked for me. It took me about two months to complete the process. First of all, take a few copies of your certificate and keep them somewhere safe. It’s a very valuable document! Next, you should read this article about tax relief for drivers with disabilities on the Citizen’s Information site.
Lockdown and Covid have changed me forever.
For the past 10 years or so I have been keeping a similar routine. I'd get up in the morning, have a cup of tea, breakfast and get on with my day. My schedule would be all about spending time with people. It would be getting children ready for school or creche, chats with the coffee guy at my station, watching the bleary-eyed strangers on the train or the lovely woman who always graced the pavement past me on the street when I walked to work. There’d then be the banter with work colleagues as we got on with the tasks at hand.
There are the parts of Christmas I love, like time with family, winter walks, twinkling lights and evenings by a cosy fire. But the parts I like don’t always gel well with my MS. As a result, Christmas can turn into something of a marathon for me and excitement tends to quickly give way to dread when I realise there is no way my body will cope with all the festivities.