Incredible! I woke up this morning and for the first time in 13 years (almost to the day) there was no prednisone, codeine or tramadol in my hand. My methotrexate hangover was mild and my inflammation and morning stiffness only lasting an hour! Incredible…. I can handle the new swollen finger and the new pain in my shoulder, this is my body recovering from my fall a month ago, and the bursitis on my knee will mean I will still take my crutches out today…. Yet there is hope and that hope is what keeps you going.
Let’s face it; rheumatoid arthritis is a pretty crap disease, any arthritis is really. It’s not popular, doesn’t get much media, and when it comes to funding it is a struggle. Living the life you desire is seriously compromised. The impact the disease and medication side-effects has on day-day functioning, relationships, energy and living well is like being on a rollercoaster ride at the speed of the european autobahn, and without notice the highs can be wiped out like a high speed crash without warning!
That’s why you have to celebrate the good days and do what you can, when you can. The toughest part of the disease for me is never knowing what the morning will bring, the unpredictability causing the most distress as you can never fully commit to functions or plan too far in the future as that day might be one of the bad days.
I don’t want to bang on and compare my illness with anyone elses, and I certainly don’t want to get into a debate about which disease is worse to have. I just want to put it out there that when you get RA young it is like a double edged sword, it’s a relief because it won’t kill you and you have plenty of years to learn how to manage it, but it is also tough some days because for you and your support crew, those closest to you there is also no end. The unpredictability effects everyone around you too. It is tough for everyone and just as you work out your new normal something changes. Symptoms come and go in waves, working out the impact for you is challenging enough, but we also have to ask for help, this is tough and receiving help is tougher. Your support crew are willing but communicating with them your needs, especially if the symptoms are new this can be heartbreaking for you all. We must remember our support crew have no end either, and this is more challenging as we begin to look well but our functioning is still limited.
The good news is we are in one of the best technological ages and a future with RA looks brighter. When my Nana was diagnosed she was prescribed asprin and bed rest – 50 years on and I have been prescribed infusions and exercise. Around the world there are superdrugs, super research teams, rheumatologists, surgeons who are moving ahead with management plans for the disease – The positive changes have been phenomenal in my 20 years with the disease. I believe there is always something just around the corner to slow the progression, and make sure that I am not painfully destroying myself from within, the crutches give me independence and the wheelchair is far off in the distance! Who knows what medicine, my tenacity and the support of my A team will be able to accomplish by the time the wheelchair is needed – if at all!
Until then I am am off for brunch, to enjoy some time with my sister and hubbie! Two of my team that have been with me in through the tough times – lets use this window of feeling better to good use! …. Cease the Day Carpe Diem!
Ps Thanks for reading! You are all incredible and my hope for you is today you get to do something that makes you smile too!
C x
