The Chronic Diaries: Nikki’s Journey with Spastic Diplegia Cerebral Palsy

Where are you based?

Limerick.

What chronic condition(s) do you have? Please briefly describe what they are?

I have a condition called Spastic Diplegia Cerebral Palsy. It affects my entire body to some extent but mainly affects both legs. They are tight & extremely stiff. I cannot straighten them at all and walk with what’s known as a ‘scissor’s gait’ meaning they are bent & buckled. Both legs are very weak with very little power in them. My left side of my body is much, much weaker than the right. I also have high sensor neural hearing loss which is damage to the inner ear, therefore hearing aids do not work due to this damage. My left ear is worse than my right.

What symptoms did you deal with before you were diagnosed?

Diagnosed from birth. I was born 10 weeks premature. Could not breathe at all. Bleeding on the brain and suspected meningitis. Very, very sick.

How were you diagnosed? What was your journey to diagnosis?

From birth. Spent months in hospital fighting to stay alive. It was touch and go for a long time and I died numerous times and had to be resuscitated. By some miracle I pulled through.

Did this journey have an impact on your daily life? Eg, dropping out of college, quitting your job/getting fired? Etc

From a young age I got around on tripods and crutches as I’ve no balance so I am unable to walk unaided. Walking itself was difficult. I’d tire very, very fast so it made going out for long periods difficult. I’d need to stop constantly to rest. Eventually as I hit my teens I needed a wheelchair full time I just could not rely on walking aids for the rest of my life it became too hard to walk even short distance. I can still take a few steps today but the wheelchair gives me a better quality of life in the long term. School was difficult in terms of taking notes due to my hearing loss. I’d mishear words and there would be gaps in my notes. Also writing was difficult as muscles in my hands tire quickly so I actually needed extra time for exams and things like that.

Are you on any medications?

Not on any medication.

What symptoms of your illness do you deal with on a daily basis (even when on medications)? How do you deal with these?

My symptoms are not too bad. Mainly tight and stiff muscles. Sometimes pain in left leg. There is not much I can do for my Cerebral Palsy but my sole therapy and treatment is exercise… Helps prevent further tightening of the muscles and helps keep me strong.

What occupation do you have? How does your illness effect your job/employment?

I am a full time Irish Athlete. I represent Ireland internationally in Para Powerlifting. My CP does not impact my ability to pursue this. If anything, it helps strengthen my weak areas because training is a big, big part of what I do.

How does your illness impact you mentally?

I have suffered from severe anxiety in the past. Dealing with crowds was difficult for me but overtime I learnt to overcome that especially when I pursued elite sport because it pushes u out of your comfort zone. You’re dealing with the public more and the media so it helped my confidence grow so much.

How do you keep motivated dealing with your chronic condition in your daily life?

I’ve always been self-motivated and determined. This is all I know as I’ve had it since birth. It taught me to think outside the box and figure stuff out… I love finding ways around things and I think if I didn’t have CP I wouldn’t have learnt to be so assertive. I have a ‘can do’ approach to life.

Is there any advice you would like to give to people who are on their chronic illness journey?

I guess it depends…. I definitely think acquiring an illness or disability later in life is tougher than being born with it. All you can do is take each day as it comes and approach life with a positive mental attitude.

How do you encounter people having your illness? Do people understand? Are they ignorant? What level of difficulty do you have with this, if at all?

To be honest the majority of people I’ve met with CP generally have a positive outlook on life even those with more severe cases of the condition.

Is there anything you want to say to these people? Or the general public who do not have a chronic illness?

There are always gonna be judgemental people out there who are quick to assume…. Sadly, that’s how society operates…. At least from my experience… I’ve had people say “oh you grater” or “you poor misfortune”…. Why? Because I use a wheelchair to get around? So? Does this mean I can’t lead an independent life? No… It’s one of the biggest assumptions out there well I want to tell you no that’s not the case. I am a very independent woman… This was instilled in me from an early age and has stayed with me all my life. My advice is never assume or be so quick to judge based on run of the mill society misconceptions. Get to know the person for yourself and you will see they are so much more than a disability or a chronic illness.

Chronic Exposure Network