The gift

The couch has become my refuge. I live from hospital appointment to hospital appointment – traveling hours to access healthcare thanks to our broken system. My paint brushes taunt me but I know there’s no energy to pick them up, to push through and do the thing I love most.

It’s been so hard to see the decline in my health since returning to Ireland. How preventative treatments are left to become emergency treatments, and how patients are often forced into 5- or 6-hour round trips to Dublin or other centres of ‘excellence’.

Our healthcare system is falling apart and those of us most vulnerable and dependent on it are silently drowning while our Government not only watches on but cuts funding and condemns us further.

Our healthcare system is falling apart and those of us most vulnerable and dependent on it are silently drowning while our Government not only watches on but cuts funding and condemns us further.

While thankfully my MS is stable, the knock-on impact of the medication I’m on means I’ve developed Hypogammaglobulinemia. The result has been constant infections.

The icing on the cake is that the Irish model of healthcare is a sickcare system that waits until you break to do anything about the issue it could have prevented. 

I had a simple IVIG in July in Dublin to help my body fight infection. It was meant to be repeated in August at my local hospital in Sligo, but despite countless phone calls and emails and even an A&E visit when another infection got out of hand, the followup was never scheduled. If A&E wasn’t fun enough, my local hospital has no protocol in place for protecting immune compomised individuals and given there was a Covid outbreak I was forced to discharge myself and travel back to Dublin to seek care.

The importance of blood donations

As I continued to worsen, my neurologist in Dublin stepped back in and urgently referred me to immunology. The outcome is that I now have to receive IVIG (antibodies from donor blood) every 2 weeks as my levels have dropped so low. This is likely to be a long-term treatment. 

I started the treatment again in Dublin as we still weren’t able to make contact with Sligo. Not being able to fall into my own bed after the infusion, as well as having to face the drive home, left me struggling with side effects from the treatment for far longer than I should have. It’s no wonder I hit breaking point this month – my poor body is worn out from fighting the system.

When it was clear that months of phone calls had failed, we reached out to a local politician about the delay and within days my next IVIG was being scheduled locally. I could have saved myself months of extra illness and hospital admissions if I’d thought to pick up the phone to a politician earlier! In my naivety I thought we had a functioning health system, but I should have known the only way to get anything done in Ireland is to call a local representative. It’s incredibly sad that it must come to that.

I feel so let down by the health system. However, most doctors and nurses I meet are as frustrated as their patients and I don’t for a minute blame them for my treatment delays. Their hands are tied and they know people are stuck in a system that condemns them to a cycle of sickness. We have so many amazing and compassionate doctors and nurses in Ireland but they are having to firefight.

Denied the safer and cheaper option

In the absence of getting my IVIG for so long, I hate to think what the months of antibiotics have done to my body instead, and the long-term implications – but what choice did I have when our healthcare system denied me the alternative and safer option for so long? If they’d given me my IVIG when it was due in August all these hospital visits and infections could have been avoided and it would have saved the State money!

If they’d given me my IVIG when it was due in August all these hospital visits and infections could have been avoided and it would have saved the State money!

It’s so hard to keep fighting a system that makes you ill, particularly when I’ve lived in Germany and seen how much my health can thrive in a system that puts patients and prevention first. Instead, in Ireland we see the Govt punish the health service in this year’s budget by chopping their funding at a time when they most need to increase it. What’s harder still is that very few people outside of the system seem to care, yet it’s a system we all depend on at some stage.

This week is the first week in a couple of months where I’ve not had to travel to Dublin for a hospital appointment and I can’t tell you how wonderful it is to come home to my own bed, my own home after treatment.

Most of my hospital trips to Dublin this year have required overnight stays and if it wasn’t for the kindness of my husband’s wonderful family putting us up I have no idea how we would have managed.

Unacceptable travel

I think of all the people forced to travel hours everyday for chemo and radiotherapy and wonder what sort of system thinks that is acceptable? The system condemns people who live further afield. 

I have so little energy left and managing the hospital appointments has become a full-time job. I have to live day by day to get through it all. It’s so frustrating to not be able to work or paint but I know rest is more important. Health is absolutely everything and until my antibody levels have recovered, it’s my job to mind myself as best I can given the situation.

So, for those of you who have been asking, I won’t have new art stock this Christmas. I do have some limited pieces from last year on sale again and thank you so much to those who have bought something.

Compassion

I had so many art plans this year and have felt constantly guilty for not pushing myself, but ultimately I know that’s not what my body needs. It’s so easy to think work, even when it’s something you love, like painting, is the most important thing in your life – that you must be ‘successful’. However, my art has never been about that – it’s about doing something I love that takes me out of my physical body. While I absolutely love seeing how my work can bring as much joy to others as it does to myself, my health has to come first. But I think that’s what attracts people to a piece of art – when an artist truly pours themselves into a painting, it is obvious.

I think that’s what attracts people to a piece of art – when an artist truly pours themselves into a painting, it is obvious.

So for now I am pouring my energy into my recovery and that’s okay. There are beautiful things ahead of us in 2024 that I will share with you soon and I want to enjoy every precious moment. So while it’s hard to accept that I need to keep resting, I also know it’s the greatest gift I can give myself this Christmas.

I hope whoever you are, you can permit yourself the same and offer compassion to your body whatever it’s facing. 

Wishing you all a wonderful and love filled 2024