When are you off?

Since Christmas I’m faced with this question “when are you off?”.                       Its usually asked with excitment when you’ve a holiday or a weekend away booked.

When you are in my situation though it means when are you off to London for medical care again?

Ah London the city I know so well by where the different hospitals are located. They are my landmarks.

Its where I spend my days going from a hotel room to a hospital and back again for the last three years now.

Only some of the hospitals I visit

Why, because I was unlucky enough to be born with Ehlers Danlos Syndrome and not only that have secondary co morbities like atlantoaxial instability ,  chairi  autonomic dysfunction and gastropaerisis.

I have been sufferring a lot from the pain and neurological issues from the this.

At its mildest eds can be managed with physio, hydrotherapy, occupational therapy, pain management and with the help of a rheumatologist and sometimes an orthopedic and gastro specialists.

Yes this is available to us in this country. Sometimes we need a good cardiologist to keep an eye on our hearts and aorta. But this is tough when they don’t know what our condition is and the complexities that it brings.

But what happens when things take a turn and become so uncontrollable. You show secondary symptoms that can’t be helped here. There are no actual real experts in this condition in Ireland.

Then you are forced abroad to go to somewhere where there is a multisystemic specialist approach. Its a last attempt to try get some life back as they have tests and management plans just not available in Ireland.

The only people who know how hard it is to travel over and back and over and back continuously when you are ill are the others that do it too. Its a unifying bond we all exhaustingly share.

I go every 3 months. In 2016 I went  5 times. All those times you leave your son your family behind and prepare for the week of hotel to hospital living.

No matter how many times I do it the anxiety before I go never leaves. 

When I get there I know I’ll be fine in the familiarity of my surroundings but I am so anxious leading up to going again.

I just don’t want to face the flight that makes me feel so unwell, all the appointments I’ve squeezed into this one trip, the 40 injections I will have in my neck and skull and the upright mri which is going to take 3 hours long. My last one 3 years ago , leaving me in so much pain I was in a severe state for days after.

Ive had some very bad days the last few weeks and its made me feel quiet unwell. I know people see me differently as they’ve only seen the two days I’ve been outside on social media. 

People see rare good days when I’ve full makeup on

They haven’t seen the sick side. The nights where I’ve been screaming in pain, the hours spent in hospital apointments the last few weeks.  Its just an existence really.

On one of the worst days this month

There has been days where I have thought logically that taking a hammer to my head would release the pain. I can totally understand why one of the headache syndromes I suffer from is called Suicide Headaches.

I just count down the hours until it’s over and have to fight physically and mentally through it. Its exhausting.

From my Neurologists report

So when am I off? I’m going on Monday. It is now Sunday morning and I’ve nothing organized as usual but I will get there I always do.

I try to take the positives out of the situation, I am lucky I have the opportunity to go and access this care. It gives me some pain relief for about 8 weeks. I get to go outside and have a change of scenery. Its a welcome change from being housebound.
When I get home it’ll be like I was never there and I’ll be asked again “when are you off ?” 😊
Z x x 

Thank you as always to everyone who has supported me to get specialist care abroad.

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