The 1st National Rheumatoid Arthritis Week - 24th to 30th June 2013
Like “National Rheumatoid Arthritis Society Awareness Week,” I am one!
Although I have been on the planet for 46 years, I am officially documented, recorded and rubber stamped as having been born into the world of Rheumatoid Arthritis in June 2012.
This means, my “birthday” falls within or is very close to, the first National Rheumatoid Arthritis Awareness Week. I will get a cake and stick a large absurd candle in the middle of it...Because to me, that is what Rheumatoid Arthritis is...absurd.
200 years ago, I might have taken the King’s Shilling. 100 years ago I might have volunteered. Last year, I took the call from my GP. I was immediately enlisted as a lifetime (cure pending!) conscript of the Rheumatoid Arthritis Army. It was an undramatic call to arms from a doctor who had to have his own arm twisted to get the blood test done in the first place.
In many respects, I am still a novice. I am still trying to earn my stripes and share what I can with whoever wants to listen. Indeed, there are tens of thousands of Children and teenagers who have more experience than me and whilst I do not know them, I have read about their wars and it gives me courage to know that they fight so bravely and with unimaginable tenacity and mettle.
You see, I am still in boot camp training. I read anything and everything about Rheumatoid that my fatigue allows. I speak to fellow conscripts and veterans and ask questions and share recon, intel, and combat. I go online and “Tweet” on Twitter and “Like” on Facebook and try to maintain contact and share my battle plans and experiences. I am still very green behind the ears but the learning curve is steep. There is no choice. Jump in with both boots and suck it up.
As a Rookie, I have already fought many battles and like you, I have invisible scars, limps and gimps and all manner of daily “ooofts” and “ahhhs.” I have been bed ridden, pill filled and halted by headaches, paralysed by unbelievable pain. I’ve been assessed by professionals and assessed by asses. I’ve been plunged by needles and prodded and poked. Fatigue has floored me. Taken me down to slumber town and finished me off more times than I can remember.
Declared “unfit to work” for nearly a year, I’ve learned to walk again with implants in my shoes. In all that time, I've been overtaken by grannies with walking frames and single parents with buggies decorated in shopping bags. I’ve been barged out the way and budged into touch. I’ve hobbled, shaked and shuffled, slouched, crumpled and crawled. Crawled to a bathroom with the integrity of a bladder infected slug.
I’ve turned the physical act of “looking over your shoulder” (to check no one is overtaking!) into an art form that wouldn’t look out of place on a failed Britain’s Got Talent bid. You will see me walking in an awkward fashion, I am the one who walks next to the wall, the fence, the rail, the posts, the partition. Sometimes, I need to reach out.
I’ve waited...oh how I have waited: Appointments, cancelled appointments, new appointments, letters, forms, phone calls, tests, assessments, updates. Administration is now a big part of my home life, I have a living room that can transform into a "Comms Centre" in a matter of minutes. An interchange of paper and digital communications.
Fatigue, Chronic pain and administration – These drinks do not make it onto the cocktail list at the nightclub. If it was to be an unassuming umbrella decorated glass of toxin, it would be called “A General Anaesthetic!” or worse. "The glass of all fears." It wouldn’t sell.
For all this, I think I have maybe earned a “year one” battle stripe!?
The Spoils of War.
This disease is degenerative. Cells deteriorate. Joints get damaged. Bones change shape. Organs can lose their bodily function. It likes to have very aggressive tendencies and shows no mercy. It has no fear. It has no respect.
There will be injuries, physical, and psychological casualties. Make no mistake; this is musculoskeletal war of Rheumatic proportions.
There are millions of battles every day. All over the world people are fighting tooth and nail to climb stairs, open a jar, or wash their hair. Get into a car or get out of a car. Put the key into the lock. Carry the shopping. Carry the shopping using a stick with splinted wrists. Walk. Just walk. Walk into the wind. Walk into the wind uphill.
Fighting the fatigue from getting to a bus stop. Clambering onto the bus. Fumbling with loose change with fingers that don't feel. Stumbling to the first seat you can find. Falling asleep. Falling asleep on the bus. And then suffering a mini “heart attack” when you wake up just in time to get off at the right stop.
Trying to keep focussed at appointments while fatigue sneaks round your back and strangles your concentration. The sensation is not unlike a visit from a general anaesthetist, with black face mask connected to a canister of volatile gas. The invisible anaesthetist releases the fumes and you count back from ten. There is nothing you can do. You surrender your senses to this Insidious intoxication and your body shuts down. Helpless. Hopeless. Strive to keep focussed, struggle to answer rapid crossfire of questions, to tell them it hurts so badly but you don’t want to complain, to keep your integrity. Fatigue fogs your focus, eyes are heavy, limbs are heavy, no mans land and sleep is the only answer. You just want the appointment to be “nice” and just rest. So long as the interviewer is happy. Sleep.
The anaesthetist doesn't care for where you are or what time of day or night it is. You could be waking up in the morning full of energy and returning to bed within 20 minutes because making a cup of tea was exhausting.
Putting on a sock and being soaked from head to toe in sweat.
Waking up an hour later, wearing a sock.
Going to the bathroom in the morning to brush teeth and face the day.
Going straight to bed after brushing teeth in the morning because after 14 hours sleep followed by teeth brushing, there is no energy left, for anything.
Pain. Fatigue. Symptoms. Meds. Appointments. Assessments. Questions. Questions. Questions. Suspicion. Questions.Questions.Questions.
The disease is very devious and can easily turn friends and colleagues into “double agents” as they proclaim how well we look when we are actually crying with pain inside.
We have all suffered collaterally damaged relationships from explaining the basic symptoms to people who will never really understand. It takes me all my energy to explain to someone who should know better. I don’t want the pain. I don’t want to admit I’m in pain so why not just believe me when I say that, “I might look tanned and healthy after my holidays but I am sore today!” It often leaves me wounded by exhaustion and hurt by the disappointment. After 60+ years of organised treatments, we are still promoting and raising awareness, educating, informing, suffering. There are few devastating diseases that can claim to have been so devious for so long. To slip under the radar of public awareness and wreak so much havoc, misinformation, mistreatment and suffering is quite an achievement.
But our battlegrounds are not just with our bodies, Jam Jar Lids and those who fail to understand. That would be too convenient. Oh no. Our battles are complex and far reaching.
Our battles are also fought on the fields of Atos and the Department of Work and Pensions. We fight the beaurocrats who continually process the processed. We fight with bosses who are more concerned about staffing levels and with friends who will not hear us. We fight with service providers who fail to provide the minimum. We fight with careless carers and poor professionals with no time but their own. We fight governments for basic human integrity. We fight for understanding. We fight for some sort of acknowledgement that we are at war. We fight every day for ourselves, for each other and for those who haven’t been called up...yet. One day, and without prejudice, this could be their fight too.
The Aftermath of Year One.
This war has been going on too long already. It has taken a long time to muster an army. To collect intelligence and draw up battle plans. To equip ourselves so that anyone or anything that stands in our way will discover that we can also be ruthless. We now have many allies. Those who do understand our fight. Those who do grasp the meaning of inclusion, unity and solidarity.
The compassionate person who will stand by our side and hold our buckled hand. The Doctor who listens and reassures. The nurse who takes time with the needle. The politician who will stand up in Parliament and speak on our behalf (I think there are a few!) and the family member or neighbour who spends time to make sure everything is ok.
Rheumatoid Arthritis does not give out any pre emptive signal of intent. There is no air raid siren. The GP has no miracle vaccine to protect you. There is no shelter, no place to run and no place to hide.
Rheumatoid Arthritis does not respect your age or ability. It does not discriminate on your race or your religion. It cares not for your gender or your sexual orientation. It is awesome in its inclusiveness. It can hurt you. It can maim you. It can disable you. It can kill you.
But we are a massive. We are global. We are closer to each other than ever before. We do not discriminate and our only prejudice is towards this absurd disease that affects our lives in so many ways.
We have a diverse array of talent in the keep.
The most professional Voluntary sector organisations, organisers, fundraisers and volunteers.
We have specialist “Rheumies” and researchers working full tilt every day of the year.
There are legions of dedicated nurses who know exactly what to do at exactly the right time.
We have friends, family, partners and neighbours.
We have access to modern, up to date information; we have websites and forums, chat rooms and blogs.
We take time to communicate. We share. We hear.
We have 24 hour help lines staffed by informed caring staff who listen.
We have each other. We are bound together. We wear the same badge.
We fight. Every day there are battles. Every day we fight.
So, I am still a Newbie Recruit. I am only One Year Old and already WE have fought many battles together. I have the gimpy leg, tingly hands, sore feet and a Tramadol induced thousand yards stare to prove it!
Rheumatoid Arthritis has made its presence known to me in a painful and unwelcome way.It has stolen precious things away from me. I’ve forgotten what it’s like to run for a bus, play football or step on a treadmill. I don’t go for long walks in this beautiful city of Edinburgh anymore. I consider every move of every day. There will always be pain and I will use what I have wisely. I have made progress and I will continue to develop strategies and skills thanks to everyone in the real and virtual world.
The disease has failed to take everything. It has failed to overwhelm me, I am not finished and I have learned that we have a constitutional resolve that is deeper than maybe any of us could anticipate. Rheumatoid Arthritis has failed to stop me playing drums badly! It has failed to prevent me from going back to the job I love. It has failed to ruin the friendships I hold dear to me and it has failed to prevent me making new friends and new networks and new learning and new experiences.
So, as I hunker down in my humble barrack, I take comfort from the fact that I have my music. I have books to read and places to visit. I have my blogs to read and I have my blogs to write. I have my comments to make. I have advice to give and advice to get. I can help others in the same way others have helped me. These acts might seem like small meaningless gestures but they do make a difference. Just to know that I am not alone and we stand, sit, slouch and shuffle together. In a disorderly, unique and un military like fashion!
Whilst I might not go out as much as I used to, I enjoy it even more when I do.
I have my life to live...
Take Care and Stay Alive,
TweeterCal – One Year In – June 2013