Both the Irish healthcare system and MS have similar flaws: it continuously strives to be better, yet they suffer from a lack of oxygen by functioning in a state of flux, making access to improvement, disabling. Whichever party is elected after general elections, coalitions go on a seemingly endless hunt for increased financial backing as they try to improve their party’s standing by spending more money than the previous one, and in MS’s case, there is an endless search on how to dilute its impact on everyday life.
Politicians lead a busy life. We, as owner of a challenging, progressive neurological illness, get that. What often gets lost in the halls of Leinster House, however, is that behind the names and addresses of their constituents, real tangible people live with real disabling illnesses. People with MS become a routine, a statistic.
From the point of view of the 9000 people with MS in this country, it can be seen as politically correct desensitisation. I am sure we all get that too.
But, allow me just to shake up the humour a bit. I want arguing senators and TDs to know that every single person with multiple sclerosis demands answers to their constant infighting about healthcare budgets and whatnot.
There is a lot we want candidates who came to the gate to know this: without being overly dramatic, living with a neurological illness is like living with a time bomb strapped around your waist. In MS, at any given time or day, we end up either in hospital because a new MS symptom totally blindsided us, or we cry in our own bed at 6pm because we are totally exhausted and in agonising pain despite having set out the day so good.
We want the government to recognise this and make services available that can jump in a short space of time and where needed.
Ergo, life with MS is not all that jazz. It’s not always about being able to finish a mini-marathon or jumping from airplanes – although I have always wanted to do feats like these – people with any kind of illness shouldn’t do these things if a perfect health care system existed.
Our nervous system operates in a different manner than that of most people on this planet. When yours says ‘Let’s go to Paris for the weekend’, ours first lingers around the sound of the words, then slowly gives it some meaning and after a while says, “That’s fantastic, I’ve never been to Paris!” (Note to self, you were in Paris six years ago).
But not that it matters, this is just the cognitive side of life with MS.
The belt around our waist also targets fatigue levels and doesn’t care if or when we fall asleep at dinner tables, at work, at 10 AM or while watching a film in the cinema. It makes anyone a liability at work, at home and in friends and family circles.
Motor functioning, same issue.
Visual symptoms, same issue.
Balance and coordination symptoms, same issue.
Continence problems, same issue.
The list of MS symptoms is that long that even informing local and national services becomes a drag, so you take an emergency list with you that lists all your symptoms, medicines and who to call if or when you are suddenly incapable of recalling every single matter.
There is so much more we want people running for TD or senator to know.
All the talk of how to get to universal healthcare is even more depressing. Once diagnosed, you should automatically be awarded a medical card, as lots of medicines, hospital appointments and GP visits will be a surety instead of just a tiny maybe. You should also not have to fight if your medical card has been cancelled because you suddenly fall outside of the financial bracket. After all, the underlying pretext of universal health care is that healthcare is a right, not a privilege.
People who just heard that their brain and spinal cord is showing degeneration that cannot be cured, and that in 20 years’ time they might progress to the next type of their newly acquired neurological illness, that news is more than just a gut punch. It is a time in your life when you want the health department of your local and national government to come forward with information about the different services you have a right to.
Instead, you go home and sit in astonishment at what you just heard. The one leaflet about MS you managed to grab from the Neuro secretary’s desk does not help you in that moment. It’s not until somebody from the MS society or your specialist MS nurse visits you at home, that you learn what awaits you when you adhere to your treatment programs.
Looking from the outside in, I want my government to know that there needs to be more funding for the Irish MS Society and their MS Care Centre. There also needs to be an increase in research financing and in the recruitment of more neurologists.
After all, we want those in power to know that what they refuse to finance, is a 9000-people strong army of fighters who know their strength and will not stay quiet each time new people stand in front of the gate of power.