You learn to love every good second, every good minute, of any of those few good days you might have. You know it’s not important to dwell on the little things. You have more important things to worry about. Being sick makes you weak. Being sick makes you strong. Being sick gives you insight and knowledge about life as it eats away at your own. Being sick is the greatest blessing in disguise. It is so much more than just having an illness. It’s having your entire life be taken out of your control, and fighting to get it back. Some days it feels like that fight will never end.
Last week I was honoured to share a patients perspective to a community who may otherwise have never known the impact the work they do has on my wellness. I spoke to some of the globes leading stars on the final day of conference for one of the drug companies that provides me with my life changing treatments.
It heard myself sharing that I was on the big river of DeNile for again. That means that medically I am unwell again, yet I have been shoving all signs under a big carpet hoping I won’t trip up on it…..
The truth is that that every winter I cruise down this river pretending I am normal and not that sick. I thought it worked well for the most part but for the last few weeks the winter nights and reliance on others to function has been taking it’s toll. The thing is with chronic health is that there is no end, loved ones have no finish, friends get sick of us cancelling last minute, we get sick of missing out. Today I had to cancel some exciting catch ups I had planned because my health is telling me I need to save my spoons (see below) for other things… It sucks and I have been feeling frustrated that my health is taking a dip…
Social activities are constantly analysed for timing, carparking, noise levels, cancellation policies, finish times, long range weather, accessibility, room temperature, seating arrangements, when to take meds so you aren’t sleeping at dessert, what clothes to wear, can you get to the toilet without help, have I rested enough to fight off any bugs, hows my immune system doing, ….. oh the list goes on and on………… Getting ready is no longer a five minute job, you have to think about clothing fastners, shoe choice, comfortable clothes and still make time for hair and makeup! For those with chronic health a simple dinner with friends seems overwhelming.
The flow on effect for loved ones is this whole chronic health business seems relentless. My heart goes out to all our incredible carers, most days I believe they are most affected, as they watch their loved ones pain, with deteriorating function, and no end in sight. It is like a spaghetti junction with everything crossing over and medical teams offering little relief to the emotions that go with this. Our medical team job is to keep us alive, prolonging our deterioration as much as possible, while we with our loved ones attempt to keep our heads and hearts in balance as our quality of life is diminishing.
It is so damn harrowing, frustrating and incredibly sad. For the short term I am back on my crutches, booked in for a booster infusion and avoided any hospital admissions, I am being compliant and enjoying regular physio while I get this flare undercontrol…. I know I have the right medical team and a kick ass support team on my side.
Huge thanks again to my support team this week who have kept my head above water, I am excited to have booked a beach retreat break away in July and spending time focussing on what I can do! The most important thing for me at the moment is to continue to do the work I love, in the controlled environment that allows me to function! So there is hope, I will be ok with saying No so I can do the best I can everyday, with the energy I have, then I can go to bed feeling satisfied I gave the day everything I had! That will keep me smiling and focusing on what I can do, and allow me to reflect on at least one awesome thing I acheived… Like today biking to my hairdresser and then taking my dog for his first every bike ride in a basket to visit my mum.
Smiles and Hugs to everyone who takes time to read this…
My blog has always been a way to relax my mind by getting it all out in black in white
THE SPOON THEORY
Early in my RA diagnosis I stumbled across the Spoon Theory. It is one of those blogs I found in the middle of a pain and insomnia crusade – you know those nights where the meds aren’t kicking in and you find yourself drifting to your online supports around the globe for inspiration and validation that’s this too shall pass…
It is one of those theories that keeps me sane when at this time of year I am struggling to keep my head above water as my head is rearing to go and my body isn’t playing ball…
It is well worth a read. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.
Wikipedia helps me explain it – The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are widely discussed within autoimmune, disability, and other chronic illness communities. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.
One of the tenets of the spoon theory is that many people with disabilities or chronic illness must carefully plan their daily activities to conserve their spoons, while most people without any disabilities or chronic illnesses don’t need to worry about running out.Because healthy people do not feel the impact of spending spoons for mundane tasks such as bathing and getting dressed, they may not realize the amount of energy expended by chronically ill or disabled people just to get through the day.