Jamie’s guest post is the 28th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.
Hi I’m Jamie! I’m a mum of one living in Gloucestershire. I am originally from Hertfordshire but moved here 10 years ago to go to university and ended up falling in love and staying.
In February 2019 I was diagnosed with psoriatic arthritis. It was such a shock and turned my world upside down. It’s a lifelong condition that has no cure, and it’s progressive meaning it generally gets worse over time. Affected at the moment for me are my hands, elbow and spine. The spine is the toughest at the moment as it’s really debilitating due to pain and limiting my mobility.
The most common symptoms are pain, stiffness and fatigue. Psoriatic arthritis is an autoimmune condition whereby the immune system attacks the joints. This causes inflammation around the joints, but also causes the joints to become damaged. The damage is irreversible and the condition is termed progressive because of this.
When I wake up in the mornings I’m stiff for about an hour or two. It’s really hard to “get myself going”. I struggle with simple tasks like brushing my hair. The stiffness eases off during the day, but there’s still pain and a degree of stiffness. The fatigue is really difficult too, it was actually my first symptom before I had a flare. I remember saying to my husband that despite the fact our daughter had started sleeping through the night, I was waking up tired than I ever had been before.
I can have 10 solid hours and still really struggle to get up, it feels like a hangover. I have to really pace myself as my fatigue and pain levels are massively affected if I don’t.
How It Affects Me
A few months after giving birth tomy daughter I started having problems with my hands and my neck. They would feel stiff and sometimes painful. I just put it down to having a young baby, breastfeeding and co-sleeping. However, early this year I become bedbound with neck pain and this led to my diagnosis. I have pain daily, and it’s severity varies. Some days I can still live a pretty normal life, but other days leaving the house is a real struggle.
Being in constant pain is exhausting too, and it makes me really irritable. I totally took so much for granted beforehand, simple things like being able to open a jar whilst cooking or carry my daughter when she is tired.
Due to the unpredictability of the condition, I find it really hard to plan ahead – and this makes me feel like I’m missing out. For example, my mum wants us to plan a trip next summer but I just cannot predict if I’ll be having a flare or not, or how mobile I’ll be, and this makes me just say “no” to things like this.
Learning To Adapt
I’ve massively scaled things back, I’ve started living a much simpler life. I used to be really active and rushing around here, there and everywhere but now I’m a lot more mindful planning my days. I work part time which is tough, but on my days off instead of planning a big trip I know my daughter is just as happy eating ice cream in the garden and having a play date.
I’ve also adapted on a practical level; I’ve found things to support me like hand supports, tools in the kitchen to help me lift things or open things, new pillows to support my spine and neck better etc.
Just being kinder to myself has been a massive thing, and telling myself not to feel guilty. If I have to cancel something, that’s okay. If the house is a state because I’ve been too unwell to clean, that’s okay too.
Changing As A Person
I get a lot more anxiety than I used to, and it’s changed how I deal with social situations. I used to be really sociable and active, but I’ve really scoped things back. It’s hard to plan things because I can’t predict how mobile I’ll be. I have a lot of fear for the future too, not knowing how quickly my condition will progress and how much of my mobility it will take from me. I know medication is getting better all the time, but it’s really scary thinking to the future.
It’s also had positive changes on me. I really appreciate the good days, and I try to enjoy every moment on my daughter. She may be the only child we ever have now as I’m scared how I’ll cope with a second, and the condition and medications bring additional complications. So I just want to really savour her whilst she is little.
My Favourite Superhero
Wonder Women! She’s just such a powerful icon!
Thanks Jamie for sharing your story with my readers and me!