The radiator at the end of the line.....

You know the radiator in your house that’s at the end of the line?.......the one that’s always a wee tiny bit cooler, no matter how many times you bleed it??.......... I feel like that radiator. It’s very frustrating........

If I lived in Belfast my treatment would be quicker and more efficient. It shouldn’t be a postcode lottery....... unfortunately it is, and the north coast is right at the end of the line....... by the time word gets up here, there are so many air pockets, it’s amazing the heating is even on........

As things currently stand, my seizure threshold has lowered due to changes in medications, a sinus infection and from pushing myself a bit too hard.........  

I completely accept I have personal responsibility around some of this, but I also feel it is deeply unfair that I cannot get the same speed and therefore quality of treatment as someone who lives closer to Belfast would get.........

My epilepsy medications need adjusted, as do my steroids. As ever, my ‘multi disciplinary team’ in Belfast are nowhere to be found. Not returning phone calls, passing decisions from one department to the next........

Getting meds changed has involved conversations between at least half a dozen people........  In order to get my anti seizure meds upped today, I am aware of conversations involving (at least!) - at least two different nurses from two different charities , two different ‘dedicated’ oncology specialist nurses, an epilepsy nurse, a neurologist and a GP...... minimum seven people that I’m aware of........ 

It’s like Chinese whispers....... and instills very little confidence in the system. It all also takes time. As a result, I’ve been left waiting days for someone to make a decision (which thankfully a local GP has finally done). During this time my medications remain wrong ..... increasing my seizure risk, leaving me tired, confused, scared and upset.........

I am also having absence seizures where I literally ‘lose time’. It’s disorientating, unsettling, upsetting....... Not to mention the anxiety and position it puts on those around me...........

It’s not right and I’m willing to admit it’s had a negative impact on me that I’ve had to fight very hard through. And still am. Thankfully, as ever, I have huge support from family and friends........

I am combining this with determination and positivity. As of now, I’m resting up. I’m going easy on myself. Thanks to a GP, willing to make a decision, I can now start to get my medications fixed........but it’s taken extra days that it shouldn’t have taken. Putting me at additional risk......

I am on a break over Easter and, thanks to yet more serendipitous timing, hubby is off at the right time too. The next few weeks are about getting medications fixed, resting, and getting myself back on track. Removing the air bubbles and getting the radiator working properly. It shouldn’t take good timing and people going above and beyond...... but I’ll take whatever I have to take to stay well......

My diagnosis and prognosis remain unchanged. I can live with this. I WILL live with this. For many years. It is not my time and I will not let you down. Xxx