VIDEO TRANSCRIPTION OF NIAMH’S PATIENT STORY:

My pain feels like somebody kneading really hard into my lower back, the whole time. When it's really bad, when I'm having a really bad day, it's absolutely excruciating – it's like somebody piercing my hip with a needle, a long needle of some sort.

My pain started in 2009, I was writing a piece of my PHD at the time and I noticed that I had a lot of discomfort when I was sitting. So I changed my movements, I changed my chair and things improved for a little while. And on and off over two years I was getting bouts of pain here and there. I had been told to exercise, I had been to the doctor, several doctors, different varying degrees of being dismissed. At the time I had explained what was happening and people told me that everybody has pain etc. But in 2012, by trying to exercise and make things better, I attended a spinning class, which was probably the worst thing ever I could have done and that's when really started to get very bad. I was living in Mayo at the time, my Mum came to visit me and she knew how bad things were and she was worried and she took me to see my old family GP. And for the first time there was somebody who took me seriously, who understood that I was in agony and knew I need to be treated. At that point I was sent for a MRI scan which showed there was some difficulty around a disc and that's when I got a diagnosis.

It's pretty bad in the morning. It's difficult to get in and out of the shower, it's difficult to get dressed. If I drop something on the floor, which I do constantly I've noticed recently, it's difficult to bend down and pick things up so I just leave them there until I come home in the evening. Tying my shoes is horrendous in the morning. Then as I loosen up, my medication kicks in, things improve throughout the day. Then it depends on how long I'm sitting and what kinds of activities I'm engaged in, and that's what a typical day is like.
I think the biggest impact to my quality of life is how weak my body has become, I think, I'm only 39 and I'm constantly reminded of that by doctors who say things like 'you're only 39, you know, you should be strong and you should have power within your body'. But if I ever want to go to the cinema, or to a bar or a restaurant, I have to think ahead to 'oh my god I wonder what the seats are going to be like there', will I have to stand – that wouldn't be possible for longer than half an hour – do I have enough medication with me in case the pain kicks off.

If I was to give advice to anybody – knowing what I know now after all of these years of having lived with my condition – it would be to listen to yourself, listen to your body, to get it checked out. To find out, if you can, what the source of the pain is. If a doctor doesn't take you seriously, then find somebody that does take you seriously. And to do whatever works for you, whether its exercise or acupuncture or reiki or whatever it might be but to find something that does work for you. Because personally if I knew now – what I know in 2016 if I knew in 2009 when this started I would have done things a lot more differently and probably I would have taken action a lot more quickly.

If Niamh's experiences are similar to your own, take the 'My Pain Questionnaire' to increase your chances to get a correct diagnose and adequate treatment.