Welcome back to another instalment in the Shining The Spotlight series. A series I created for people like myself who are living with chronic illness or disabilities, giving them a platform to tell their story. Todays post is brought to you by Liz from Despite Pain.
Introduce yourself and tell us a bit about you?
My name is Liz and write the www.despitepain.com blog. I’ve lived with chronic pain all of my adult life. I’m married and live on a sheep farm in the hills of the Scottish Borders. I had to take early retirement from work when I was 28. I am now 52, feeling like 92 some days, older on other days. But I try to get through life with positivity and a smile.
Chronic illness(es)/disabilities I have?
I have scoliosis, which has resulted in chronic back, rib and hip pain. I have a facial pain condition called trigeminal neuralgia. Those are the two big conditions. I also have a few other things like chronic migraine, osteoarthritis, osteoporosis and Raynaud’s. And to cap it all off, I was diagnosed with coeliac disease last year.
My symptoms/condition began?
When I was 10, I developed scoliosis (a curvature of my spine). It progressively worsened, and by my late teens, I had constant back pain. In my early teens, I started getting migraine headaches. Headaches and face pain made life more difficult throughout my twenties and thirties. I was about 42 when I was diagnosed with the face pain condition trigeminal neuralgia.
My diagnosis process
When my scoliosis first developed, the orthopaedic surgeon suggested that I eat lots of Mars Bars, to put on some weight, and then my curvature would never be noticed. He also said it would never cause a problem. Jump ahead about 8 years, and he told me he didn’t know much about scoliosis, so suggested seeing a specialist. (A wee bit late)
The hardest part of living with my illness/disabilities is?
Unpredictability. Day to day, even hour to hour, I don’t know how my pain is going to be. It’s there all the time, but the level varies. Some mornings I struggle getting out of bed, then the pain eases off. Other days I might get out of bed ok, but by 11am I could be getting shooting pain in my face, or the muscles in my back go into spasm.
Also, if I can add something else – fatigue. Living with constant pain is tiring. Sometimes it just hits, and I need to sleep – for about four hours in the middle of the day. I don’t feel guilty about that. I realise it’s just part of living with pain.
People assume that?
I’m not sure, to be honest.
I have a motto in life : the people who mind don’t matter, the people who matter don’t mind.
What I mean is, there may be some people who look at me and think “There’s nothing wrong with her”, “She’s just lazy”, “She smiles and she’s happy, so she can’t possibly have the pain she claims to have”.
But does it matter what they think? They don’t know me. The people who do know me, are the people who matter. And they know what my life is like. They can see through the smile and know I’m in pain. But they smile along with me, because they know that’s what I want. I don’t want sad faces.
A typical day for me involves?
If you’d asked what a typical day SHOULD involve, I’d have written crafting, painting, baking and cooking. But lately I don’t do really do much apart from eating and sleeping, Facebooking and blogging! I run a Facebook page and support group for trigeminal neuralgia, so I check that out throughout the day. But really, my day is pretty boring.
The one thing I cannot live without is?
My husband. Oh, he’s not a thing…
I was going to say laptop, because that’s my key to the outside world -my friends live inside it.
But then again, if I were to talk home comforts, I’d say my bed!
Being ill/disabled has taught me?
To appreciate the small things in life and to realise that it doesn’t matter if I don’t always succeed or reach goals. The important part is trying.
What advice would I give someone recently diagnosed?
Breathe. Take your time, be careful about which websites you visit for info, as some can be inaccurate and make for frightening reading.
My support system is?
My husband mainly.
If I had one day symptom/disability free I would?
I would cook and bake all day to fill my freezer for the other days.
One positive of having a chronic illness/disability is?
I’ve met a lot of nice people in online support groups. I would never have met them had I been fit and healthy.
The spoonie/disability community has been?
The online support is amazing. I often say that I would hate to have lived in a world with no internet. I would have been sitting in the house alone with my pain. Instead, I belong to support groups. We help each other. That’s a big deal.
Thank you to Liz for taking part and allowing me to share your story with my readers. Be sure to check out Liz’s site Despite Pain, as well as check her out on social media accounts. Facebook, Twitter and Pinterest.
If you’ve missed any of the previous posts you can find them here. Also if you would like to share your own story of chronic illness or disability you can email me email@example.com, I will be happy to send you the questions and answer any queries you may have.