Today I am excited to share Lynley's story. She has been living with chronic pain and osteoporosis for years and is sharing how her life has changed and how she not only gets through, but celebrates life despite her conditions.
This interview is part of an ongoing series where warriors from around the world share their struggles and victories as they navigate life with various chronic illnesses and invisible disabilities. I hope you will be encouraged and perhaps even find new friends or support through this amazing community of warriors.
Please Note: these posts are meant as a testimony of personal experience and are not to be considered as medical advice. Please do your own research and consult with your doctor before making any changes to your care plan.
Chronic Pain And Osteoporosis, Interview With Lynley
Tell us a bit about you
Hi, my name is Lynley! I’m very happily married, I have 2 children and 3 stepchildren and I love spending time with my family. I also love writing and I have my own blog called Toplady Talks which I really enjoy doing. My other love is singing, I sing with a local choir and we perform regularly.
What's your proudest achievement?
My proudest achievement (apart from my children of course!) was when I gave the headline speech at the annual fundraiser for the National Osteoporosis Society. This happened 2 years ago and because my type of Osteoporosis is pretty rare, I was asked to give the speech and talk about how the condition affects me.
It was rather nerve wracking, even with my teaching background, as the audience was likely to be a few hundred people but it turned out fine, I actually really enjoyed it and I had great feedback. It really was a very proud achievement!
What Is It Like Living With Chronic Pain And Osteoporosis?
I suffered a spontaneous fracture of my Sacrum 4 years ago which has resulted in loss of movement, sensation and constant pain to my left hip/leg. I was then diagnosed with severe Osteoporosis soon afterwards which is extremely unusual at my age.
1. What are your main symptoms?
The main symptom is constant, severe pain in my left hip/leg. It is very difficult to manage and the best way to limit the pain is to limit the moment so I have to use crutches to mobilise in the house and an electric wheelchair outside.
The pain is there every minute of every day and is managed with a cocktail of drugs, including nerve pain drugs and morphine patches. These help take the edge of the pain but it never goes away. On top of everything, the medications cause major side effects including a fuzzy head, drowsiness and forgetfulness so they in turn cause their own problems.
2. Briefly describe the process you went through to get your diagnosis.
At first the doctors thought I had sciatica so I was sent for physio. After 3 weeks of physio, I was still in horrendous pain so I had an MRI and a CT scan which then showed the fracture. It’s a very rare fracture apparently and is usually seen in a car crash or a bad parachute landing.
The day after the scan, the specialist phoned to tell me of the fracture, the immediate treatment was 6 weeks of virtual bed rest, then up on crutches. Unfortunately whilst the fracture healed eventually, the pain never went away and has never changed.
3. What did a typical day look like before you fell ill?
I was a secondary school teacher and worked with young adults between the ages of 11-18. I was a Head of Dept. and a Head of Year so had teaching and pastoral responsibilities which meant I never stopped! I taught 4/5 lessons a day and then dealt with parents, children with social issues and after school revision classes. It was a very busy life indeed but I loved every minute of it.
4. What does a typical day look like now?
Well unfortunately, now days are a polar opposite of what it was before. I have to take my life so slowly now to manage the pain and it bears no resemblance at all to my old life! I have to have someone to help me get out of bed, get dressed, to clean myself, to cook, everything.
It also has a different routine, taking medications every 4 hours, resting, trying to keep myself occupied and then doing the same things again. I have studied meditation and mindfulness to help distract myself from the pain.
5. What are some of the helpful adjustments you have made at home or at work?
I have had to accept help with my physical care needs, I have moved to a bungalow and have adapted my home. I also try and pace myself so I don’t 'boom and bust' and I have had counselling to help me cope with my 'new life'.
I use distraction techniques such as meditation, mindfulness, adult colouring books and I’m a definite Candy Crush addict! I try and stay as positive as I can as that helps with my pain management too.
6. How do you celebrate life despite your disability?
I would say that I try every day to find some positivity and promote disabilty in a positive way; to show that people who are in a wheelchair aren’t something to be afraid of. I find a smiling happy face and a cheery 'Hello' often shows that disabled people are not to be feared and actually we are all the same after all!
7. What do you wish the general public knew about your condition?
I just wish that the people around would realise that if I have to cancel an appointment or an arrangement at the last minute, I’m not doing it to annoy anyone, it’s just that sometimes, the pain just spikes and I cannot control it. Having a chronic pain condition makes life very unpredictable and this is the thing I’d want other people to realise.
8. What advice would you give somebody who is newly diagnosed?
To get referred to a good Pain Management Clinic to sort out their meds, to get asoke counselling organised and to join any and all forums you can to find people in the same condition - they’ll help,you more than you know.
9. Where can people go to find out more about your condition?
Finding more information about chronic pain is quite difficult I found. The best advice I had was from websites like The Mighty and Health Unlocked who had people with similar conditions, they were very useful.
Tell Us About Toplady Talks
I started TopladyTalks 2 years ago to try and find other people in my position and also to chart my journey into my 'new life' as a disabled person. I couldn’t find anyone else in my position so wanted to see if I could connect with other disabled people.
I write about accessibility issues, disabled rights and anything else that takes my fancy!
My favourite blog post is the one i wrote about my recent cruise holiday. It’s my favourite because it was the one that reached the most people and I had great feedback that I had helped people with questions about cruise holidays whilst disabled.
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