Shining The Spotlight on Chronic Illness & Disability Q&A My Story
January 9, 2019
Shining the spotlight on chronic illness and disability is a series I created to give others like myself, who live with chronic illness or disability an arena to get their voices heard. To show the world exactly what it is like to walk a mile in our shoes. The series officially started at the beginning of November with a number of participants submitting their answers and more to come. I thought that I would take the time to answer the questions and let me retell my story.
Introduce yourself and tell us a bit about you?
Hey. I’m Nicola. A blogger, mother, wife and dog mum. We live in central Scotland which means we have access to so many of the countries beautiful scenery.
I was born visually impaired, my ophthalmologist has diagnosed me with a condition similar to Familial exudative vitreoretinopathy (FEVR). Which is a condition that affects the retina, it is a progressive condition which can lead to sight loss.. However I am the only person in our family (that I am aware of) that has the condition and my case isn’t progressive, so he believes that it isn’t exactly FEVR but can’t give me 100% diagnosis.
My chronic conditions started nearly ten years ago, after suffering acute angle closure glaucoma I began to experience symptoms within a few months. Chest pain was first to start. It was scary as I thought I was having a heart attack. The doctors were baffled they checked me for asthma, I had X-rays and countless examinations which caused more pain.
After some time I began to notice more wide spread pain, extreme fatigue,
My diagnosis process was?
Very long and stressful. Eventually after a few months of constant chest pain, I was diagnosed with Costochondritis and told that it would go away. It never went away.
I researched the condition and found that it was listed as one of the symptoms of fibromyalgia. The more I read about that the more I was convinced that was what I had.
My doctor was reluctant to refer me however because they were unable to figure out what was the cause of my symptoms. I had an appointment with a rheumatologist, who confirmed I was double jointed (hypermobility) but was sure that I didn’t have fibromyalgia.
For months after this my symptoms still hadn’t gone, in fact I was experiencing more and more symptoms. I felt like I was at the doctors every other week with something new. I asked again for a referral to see a rheumatologist.
After months of waiting for the appointment, I finally received one and was told at this appointment. That I did in fact have fibromyalgia. You can imagine how relieved I was to get a diagnosis.
The hardest part of living with my illness/disabilities is?
Not being the fun cool mummy that takes my child to all his favourite places. I can’t take him to the park on my own in case he wants carried.
People assume that?
I’m being untruthful when I say that I am legally blind. I believe they think that being legally blind means that there is no sight at all.
A typical day for me involves?
We wake up about 7am. Normally I need help getting out of bed in the mornings due to my body being so stiff. My husband normally gets Alex dressed and ready for nursery as I get myself ready. We will have breakfast then I will take Alex to nursery. It’s not too far to walk but it’s a bit of a trek when you’re low on spoons.
After the nursery drop off I head home. Once I’m home I will normally sit and rest for a while, checking my social media and make a mental to do list. If I have the energy I will get a few chores done but if I’m low on energy I will watch some Netflix until it’s time to leave again. Being rested and able to pick up Alex is more important that getting another load of laundry done or vacuuming the living room.
As soon as we get back from nursery we will have our lunch, play or chill out. I might get some writing done or finish the chores I had started in the morning.
When my husband gets home he will soft dinner (I’m usually very low on spoons by then). He takes over parenting duties. We eat as a family, then I normally head off to bed and rest in preparation for the next again day.
The one thing I cannot live with out is?
Apart from my husband, family and dog, which aren’t really things. The one thing I cannot live without if my phone. It’s my lifeline at times. It’s how I write, keep up with friends and what’s happening in the world.
Being ill/disabled has taught me?
Not to take life for granted.
What advice would I give someone recently diagnosed?
Do as much research into your condition as you can. Find groups on Facebook that are full of people who have your specific condition. Talk to your family & friends. Give them the information that you have about the condition. Explain to them about spoon theory or the chargie theory. Tell them what your condition is like on a bad day
My support system is?
My husband, family and some Facebook support groups.
If I had one day symptom/disability free I would?
I would whisk my besties off for a day out somewhere fancy. Where we would drink cocktails and remember the good old days.
One positive of having a chronic illness/disability is?
It has taught me who my true friends are. I’ve lost a few “friends” because of my illness. It was heartbreaking. I couldn’t understand what I’d done wrong. Finally realising that they are the ones who had the problem with me cancelling last minute or not being able to go running when they needed me.
The spoonie/disability community has been?
Really helpful. There are a few groups that I’ve found that weren’t helpful at all but generally the community is incredibly supportive, encouraging and friendly.
If you want to share your chronic illness or disability story. Don’t hesitate to get in touch via email at email@example.com. The more conditions we can talk about the more awareness we can raise.