The meds & good intentions…

Have you tried apple cider vinegar? Black Molasses? Cutting out tomatoes? Heat rub?

Believe me when I say, over the years I have tried numerous natural remedies, health kicks and read more information than I care to remember!  After nearly 13 years, patience wears thin with the well-meaning suggestions and advice from those without experience or without understanding of RA.  You know you should smile sweetly and say ‘oooh thank you, haven’t thought of that’ but really folks…there should be a recommended list of things NOT to say!  Before offering advice, please read up around what the condition is and how it is different from many other forms of arthritis.  Not to belittle any arthritis at all because, let’s face it…it all sucks, but RA is very specific, with its own symptoms and prognosis.  If you want to really support…read up (and not on Wikipedia!).

Taking medication is an on-going dreaded necessity and has been a personal struggle with varied trials of weekly and daily tablets, joint injections, self-administered injections and infusions.  Many survivors like me have an innate reluctance to keep shoving the stuff down our necks and in our bodies but without it life would be an unfortunate story.  I cannot fault my specialist or clinical nurse but… jeez, how I wish the medication and treatment was easier.  My personal current cocktail includes Rituximab Infusions, Methotrexate, Hydroxychloroquine, Diclofenac, Codeine, Folic Acid, Vitamin D, Lansoprazole, Keflex (a cheeky little anti-biotic for an added issue) and currently an anti-sickness drug…I think that’s all…ah I forgot the hypromellose eye drops for my active dry eyes, a delightful addition that no one warns you about.  Surely research has to come up with a simpler regime? If you read the side effects of every drug (which survivors are usually on a cocktail) it can drive you insane and scares you silly but it is important you understand what you are on and why.

It’s important to know and understand the side effects of each medication and why it’s important to take the stomach saving ones, to reduce the risks from anti-inflammatories and why if you don’t take the folic acid the methotrexate will make you vomit! Even with the all the scary risks to organs and crappy prognosis, the four that really strike as a day-to-day mallet to the brow are, weight gain, hair-loss, nausea and the constant ‘hit-a-brick-wall’ fatigue. How can you turn up at a school event, or work do, or social night with friends if you feel the size of a whale, as tired as a sloth and your hair and skin like some sort of deranged wild animal?  Yes I’m all for ‘it’s what is inside that counts’ but in real life it’s a different kettle of fish!  I’d love to think ‘screw it’, but when people say you look rough, or you have had to let friends down for another night out, or you have to call into work as ‘sick’, it doesn’t make you feel great!

For survivors, it’s not just the pain or lack of movement; it’s the inability to function and to complete the simplest of tasks independently in the knowledge that you are pumping toxins into your body on a daily basis for what seems to have little-to-no effect.  Not being able to squeeze out shampoo, getting cramp when you try to apply make-up, not being able to prepare a meal; each task draining you of energy, independence and self-worth.  But do you ask for help…hell no!  You fight against it all, becoming increasingly frustrated and angry and you shout at those who attempt to help. Either that, or give up and think of elaborate excuses to mask what’s really going on.

The impact on mental health is huge, but you seek no help because it would inevitably mean more prescriptions or even worse…talking! You keep most of your feelings in your own head for fear others will bore of your complaints or offer well-intended solutions, leaving you screaming inside.  You keep smiling that smile and helping others to overcome issues…anything that will help you avoid your own.

The key to survival? Be honest! Surround yourself with a few good friends and members of family  who either truly understand or just accept you for the grumpy arse that you are! Learn about the meds from your specialists or support groups, not Google, it’ll help you to understand why one day you can’t stop crying and the next day you want to cause serious harm to anyone who comes within an inch of you.  Yes I’m impatient, yes I get very frustrated and shout (a lot) but for those who are reading this as a supporter…we are angry with ourselves and the helplessness of it all, not you.  For those who are survivors, see yourself as just that…a fighter and survivor.  Yes we rattle as we move, we may carry a little extra weight and have thinner hair now than before, but we still face the world each day.  Feeling sick and in pain, but we face it all with the support of the crappy meds with the crappy side effects, without which we would move and function even less.  I have to admit, some days I struggle and it’s taken a long time to admit that, but it’s important that the down days are allowed…not dwelled upon, but allowed.  Be kind to yourself, ask for help and make the most of the good days, however few and far between they are.

As I often used to say with the young people I worked with, we can’t appreciate happiness without experiencing crap!  Let’s face it, as survivors we can appreciate the tiniest of wins!