From the very first unexplained pain symptom back in 2004 to final diagnosis in 2017 I have suffered a long and debilitating journey only now just starting to become more aware of my pain triggers, and how far I can exert myself before I break.
A typical day in my life goes something like this:
Wake up after 3-4 hours of broken sleep. Sleep is usually disturbed by pain, anxiety or both.
It takes around 10-15 minutes to enable me to get out of bed.
Usually wait to see where I feel pain to be it’s most severe before I decide the best course of action for pain relief. I.e if it’s a dull ache or a light throb I tend to start my day with 2x paracetamol & duloxetine along with 2 drops of turmeric infused CBD oil. If it’s particularly bad I take tramadol as well.
Shaun (my other half) usually has to lift Ciara from her cot in the mornings as my joints are stiff and weak.
Then I get up and go to work. I usually drive because walking downhill can be really painful in my feet and lower body joints, having said that I am trying to slowly increase graded exercise as this should help make the joints stronger and decrease the weight gain caused by medications, hormone imbalances and inactivity.
I have a deficiency in vitamin D so the winter is really hard for me as are cold and damp conditions as these can often be a trigger for a flare up of acute pain.
All of this has a habit of getting in the way of me enjoying my life, so bouts of depression often follow a flare up. A flare up is when your pain becomes completely unmanageable and is usually coupled with extreme fatigue. I often explain it to my mum friends as pregnancy and newborn baby tiredness! Like the life has been sucked out of you.
People often say to me that I don’t look unwell. Which means I then feel I have to justify my illness to them. Every time. I feel like their eyes roll upwards when I say I’m not feeling great.
My symptoms include but aren’t limited to:
Widespread pain.
Peripheral neuropathy
Plantar fasciitis
Heavy and painful periods
Ovulation pain
IBS
Migraines
Nausea
Numbness in my hands and feet
Oedema
Contact dermatitis and allergies
Fatigue
Jaw & neck pain
I manage my symptoms by using a combination of natural therapies and prescribed drugs.
I try to have deep tissue massage regularly, acupuncture, eating well (which I find so damn hard, as I’m a comfort eater) and I’m recently trying really hard to exercise more. I also have counselling to help me overcome the anger I feel at my new found limitations and the guilt I feel about the pressure this puts on my family and also my work.
I don’t want sympathy, I want a cure, I want understanding and I want awareness.
I’m 30 years old, I like to eat out and socially drink with friends but even that scares me now because I know it’s accompanied by the worlds longest hangover.
I have a long time (I hope) left on this planet, my aim is to limit my symptoms enough to allow me to enjoy my life. For my daughter not to always see her mummy ‘resting’ or unable to climb around the soft play with her.
You can help me spread awareness by sharing this post and or donating to my just giving page below. I gave up chocolate in February to raise funds and now I’m doing longleat’s glow in the park! Trust me a run isn’t going to be easy! But even if I have to walk it. I’ll get there!!