Welcome back to my disability Q&A series 🙂
Today we have Nicola, i’m sure your find her story intriguing just like I did.
Over to you…
Tell me about yourself: My name is Nicola I’m 38 live in Falkirk, Scotland, I am currently unemployed. I stopped working several years ago because of my combined conditions. I guess I would class myself as a stay at Home parent. I enjoy writing, listening to music and watching movies and crime documentaries.
Now we know the basics, can we learn a bit more about you?
Well where to start. I live in Scotland with my husband David, our son Alex who is almost 2, and our crazy but I wouldn’t be without her dog Alba. Before we got her 3 years ago I considered myself a cat person, even though I liked dogs I never saw myself as having on as a pet/companion. A friend who was getting a puppy suggested that I should get one as they are good company and help me get more active as at the time I was pretty much housebound. I can wholeheartedly say that Alba has changed my life in those 3 years more than I could ever have imagined. She knows when I’m feeling down, sore, tired or want to be left alone. She wants to be close and will lie, sit, stand next to me sometimes on top of me when I’m not in the best place and I love her for that, even though she’s usually crushing me.
Earlier this year I created nicolajogston.com a site that I use to talk about many different aspects of my life, from motherhood, disability, mental health and generally anything I feel passionate about.
What is the medical reason you have a disability?
I have a condition that is similar to but hasn’t been confirmed as Familial Exudative Vitreo-retinopath (FEVR) which is a disease that affects the retina. The disease is genetic however I am the only person that I know of in my family that has it. According to information on http://fevr.net FEVR is progressive, that is why my condition is similar but not actually FEVR as I was born with it. My left eye is the strongest but my prescription is very strong so much so that I’ve heard people in the opticians comment on it, that was annoying and upsetting. My right eye is very poor, I am unable to read with it and can only distinguish hand movements.
From the age of 15 or 16 I was discharged from the eye clinic at my local hospital which in hindsight I don’t think was the wrong decision.
When I was 31 I had a case of acute angle closure glaucoma. I underwent Trabeculectomy and cataract surgery, but my right pupil is permanently damaged. It is always dilated which I guess makes it easier for the Optometrists to see inside it.
I also have a chronic pain condition called fibromyalgia that affects my whole body. With muscle and joint pain, chronic fatigue and cognitive issues being only a few of the symptoms.
Have you had your Illness / disability from birth?
I was born with the eye condition. Doctors didn’t diagnose me with sight issues until I was about six months old when my nana mentioned to my mum that she thought that there was something wrong with my eyes. My mum said that she thinks she never noticed it as she saw me everyday and my nana had only seen me a few times.
My pain condition surfaced around the time I had the glaucoma. According to research it can be triggered by trauma and that was a fairly traumatic experience.
Do you refer to yourself as a person with a disability? If not, why not?
I do. For a long time especially at high school I was embarrassed to call myself disabled. Kids can be cruel and I was already teased for wearing thick glasses and sitting at the front of the classroom. I didn’t want to hand them any more ammunition.
I was embarrassed when it came to exam time, the school probably thought that they were being helpful as they enlarged my exam papers. But rather than increasing the print on the page they blew up the page to A3 which was bigger than the desk. My fellow students around me would point and whisper.
Do you tell others about your disability? Or do you prefer to keep that to yourself until you are comfortable with the person knowing?
It depends on the situation. In a social situation with strangers I don’t open with “Hey I’m disabled” I don’t have a problem telling people I have a disability.
I don’t see any reason to hide it. I actually feel that people are surprised when I tell them about being visually impaired. I think they expect someone who is blind to have a guide dog or not able to see anything.
Do you use any mobility AIDS such as a wheelchair or walking stick?
I do have a white stick for when I am walking. I hardly use it anymore because when I did use it, people around me were oblivious as they were in their own little world bustling along, not paying attention to what’s going on around them. If you could extinguish your disability, would you? – If not, please explain why.
Honestly, no I wouldn’t take away my visuals impairment. To me what I see or don’t see if normal I’ve had this sight issue since birth and I don’t know any better. I would extinguish the fibromyalgia as at times that is tougher to deal with than being blind. Pain relief doesn’t work and there are times where I can’t get any relief.
For those who do not know much about your disability how does it affect your mobility?
My sight issues doesn’t hamper with my mobility, when I was younger I would walk into things but I don’t do that as much when I’m out and about. I do occasionally walk into the edge of a wall or door in my house if I’m rushing about too much.
Fibromyalgia can cause mobility issues I get really sore and stiff, only being able to walk a short distance. There are times I think that one day I might end up in a wheelchair as walking can be that difficult.
How has your disability effected you? *Socially
I get nervous in large crowds. Mainly because I’m scared that I might lose the person or people I’m with.
My fibromyalgia has been the biggest thing that has affected me physically.
I have been affected mentally as there has been times when I’ve questioned why this has happened to me.
I try to stay positive but that isn’t always easy and sometimes the bad thoughts creep in.
Do you think your disability has made you who you are today?
*Please give a positive example of how this has done so…
I do believe that it has. It’s a bit cheesy but if I wasn’t disabled I may have gone down a different path and may not have met my husband or have my beautiful little boy.
Is there a particular question you get asked often because of your disability? If so, please explain below. I don’t get asked that many questions to be honest. The usual one is what can you actually see.
What are the positives of having a disability?
That is a good question. You see the world differently.
What are the negatives of having a disability? Not being able to drive, that to me is the biggest negative of my sight issues. I would love to be able to jump into a car, put the radio on and drive.
What would you say is a difficulty for you being disabled? There are so many things that are hard about being disabled. But because I’ve grown up with th condition I wouldn’t say that anything is particularly difficult. I do get frustrated when I’m out shopping as labels and pricing information are never large enough to read.
As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you? *In your home
The biggest frustration at home is my fibromyalgia not my sight. I get frustrated when I’m stiff and unable to get out of bed on my own. Or when I’m unable to get my pain medication out of the packet. Those things are a nightmare!
Reading instructions on packaging is frustrating.
*outside your home I’m never normally out of the house on my own. However on the rare occasion that does happen reading bus numbers is so frustrating.
Restaurant menus are a big frustration as the lighting is always so dim and the menus are so difficult to read. I usually get David or whoever I’m with to read it to me which takes so long.
Are there any tips or tricks you use in daily life you’d like to pass on to another disabled person? *Remembering to take medication? I’m really bad at remember to take my medications. I really should set an alarm on my phone. Usually David reminds me to take them or I remember later in the day.
*Organizing appointments I use my iCal for appointments though with reminders set the day of or the day before.
Do you use Assisstive technology in your daily living? *apps to organise and remember appointments I use my phone constantly for appointment reminders, keeping up to date with the news and social media. I guess I would say that I am very phone dependant. I even use it to take pictures of small print so I can zoom in or I can use it as a magnifier as well.
What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in health / or mobility? Join support groups, either online or in your local community. Talk to friends and family about your diagnosis, explaining the condition to them in great detail so that they fully understand what you are experiencing.
Any advice you’d like to give to a person withno disabilities? Don’t rush to a snap judgment about someone who is disabled. Aks questions, get to know the person’s disability/illness and above all try to be understanding and sympathetic towards them.
Did you seek out any specialist services / charities to help you and your family deal with your situation? *RNIB
*starlight Foundation *Support groups
I haven’t approached any specific charities for support, I did however contact my local Sensory Centre, who were very helpful in getting my help I need financially as well as helping me
Where can people find you out in the world? *Blog
Thank you so much Nicola for sharing you story with us, I definitely learnt something new today! I’m sure the audience did too.