Arthur decided it was partying hard in my body on 23rd December and it's still not stopped. Horrendously painful joints, raging temperature which lead to nausea and vomiting and relentless fatigue. Christmas eve was spent sleeping in a haze of pain relief before putting my big girls pants on, sucking it up and pasting the smile on my face for the sake of our 3 beautiful children as we head out to the cinema.
I ease myself into the comfy cinema seats, the lights dim and I fight fatigue to stay awake. Thankfully the film was rather funny. Hubby has to lift my stiff and creaky body out of the chair, I take more medication and head off to a friends house for our annual Xmas eve gathering. We're lucky enough to have wonderful friends who do understand but still I don't want the evening to be about my condition.
Xmas day arrives with excited children. Their laughter, energy, enthusiasm and love gets me through the day. We visit Pauls beloved mother in her care home first thing. No matter how bad things get I am thankful I am still able to live in my own home.
Friends arrive for festive dinner and we graze on copious amounts of food and merriment but by 5pm I'm fading fast. Our friends leave and I'm snuggled in fleecy jammies and a quilted duvet. For one day of fun and enjoyment I'm paying the price of pain, stiffness and fatigue. I thought I had fooled those around me but the concerned look in my hubby's eyes says it all....I haven't.
I've been waiting since August for facet joint injections and hip injections. Basically the dashing Dr Huntley sticks enormous needles into my back and hips guided via x-ray to inject steroids to reduce inflammation and help ease some of my pain. The NHS is a wonderful thing and I'd be a complete wreck without it but .....there's always a but, and I don't want to sound ungrateful, but I'm no longer coping with back, pelvic and hip pain. My right hip is subluxing (proper term for partial dislocation) which bloody well hurts like a massive hurty thing yet the registrar at Stanmore has said I need 6 months anti TNF therapy before he'd consider surgery which is contradictory to the previous registrar I saw. Im waiting for anti TNF injections to be delivered. My rheumy okayed them a couple of weeks or so ago and now its int the hands of a medical company. You can see how confusing and frustrating this can be.....hugely long waiting times for procedures that patch me up to mask the issue so I can keep plodding onwards in an attempt to be a mother and wife and also contradicting information from a registrar at one of the top orthopaedic hospitals in the country. Needless to say various messages have been left at Queens Hospital and Stanmore to find out a state of play before I become completely sofa bound. Then to top it off my smart crutches have broken. These amazing crutches have been a godsend for the last 3-4 years even supporting me on various media pieces and trips to the Houses of Parliament to raise awareness of Arthritis, all invisible conditions and disabilities. Now starts the saving up of the £100 to replace them, it's a lot of money but so worth it.
This picture by lupie linda sums up the situation. I don't have Lupus but the statements fit all autoimmune diseases and chronic illnesses. We all put on the mask to prevent those around us seeing the true pain, frustrations, loneliness of battling these diseases/conditions.
As 2017 comes to a close I wish you all a pain free, healthy and happy 2018 filled with love and friendship.
