Whatever our chronic illness IS, so many of us struggle with mobility issues that can impact our daily life. You might suffer the occasional flare-up of achy joints as part of your illness or you might find getting around on a daily basis more difficult; meaning you reach the point where you could install a stair lift, or become a full-time wheelchair user. One mobility issue that is really misunderstood is arthritis- which is far more than just sore joints or an ‘old persons’ disease. In today’s health stories, Sassy from Thinking Out Loud Sassy Style shares what she’s learnt about arthritis after living with it for 20 years.
After living with arthritis for 20 years now I feel there is a lot to say on the matter so I’m going to share my tuppence worth with you today.
What is arthritis?
Rheumatoid arthritis, The arthritis I have, is an autoimmune disease. Essentially my immune system, which should fight infection , attacks itself by mistake, making my joints swollen, stiff and painful.
Things chronic illness has taught me.
Living with chronic illness and chronic pain isn’t easy and if you’re anything like me you will generally downplay the seriousness of it all to your friends and family in order for them not to worry or feel guilty but I want to share the reality of living with chronic illness, both the positive and negative.
Arthritis isn’t just a joint issue.
Arthritis is a royal pain in the backside, and that’s being polite, it wasn’t until I was diagnosed with it myself that my family and I knew the seriousness of the illness and the negative consequences. It can have.
When people ask me “have you always been blind ?“ I briefly explain that no, I lost my site at 23 because of arthritis.
Rheumatoid arthritis can attack the organs and in my case this was my eyes. For my friend, alongside having several joint replacements, her arthritis went to her heart and nearly killed her.
And in 2019 my fiance‘s great uncle passed away from having arthritis in his lungs.
Having no site can suck sometimes and the joint pain that goes along with it is an added bonus, yet in retrospect I am lucky to still be here.
Treatment is preventative not a cure.
I’ve been on several medications over the years and had countless procedures and operations to slow down its affects, some with long-lasting relief and some not so much.
When I would have specific treatment or operations my friends and family would ask if this meant I was getting better? I may have felt better for a time but my arthritis will always be with me, and that’s evident in the decline of my eyesight and my pain levels increasing when I’m near the end of treatment.
Resting doesn’t mean restful.
With thanks to my medication I am no longer in need of my wheelchair but that doesn’t mean that I don’t need to sit down often, these are small respites when I am able to take the weight off my own body but the second I move or stand up again the pain intensifies.
This also goes for sleep, most of the time sleep restores my energy and reduces my pain but there have been many nights in my lifetime where I have been unable to sleep due to the pain: no matter how exhausted I am.
It’s okay to ask for help.
My parents have instilled within me great independence but made it clear that help and knowledge was always available if ever I needed it, and if they weren’t the ones to help, they would find someone who could.
Being stubborn and feisty meant that I spent a lot of my childhood refusing help from family, friends and strangers proving to everyone, including myself, that I could do it.
Since going blind I have had to relinquish that control somewhat and put trust in others, being open to help and support has gotten me out of many a sticky situation and help me form friendships for life.
Slow but steady does win the race, well sort of.
Having chronic pain means that you have to pace yourself, know your limits and be proud of your achievements.
Factoring things into your day such as waking up with enough time to be organised as well as taking medication and letting it work its magic, leaving the house half an hour before the bus is due just encase you can’t walk as quickly as the previous day, (or in my case your guide dog takes you on a new adventure!) Then praising yourself for even being able to do this, when on another day it may not have been feasible.
Humans are kind.
People try their best to help, granted sometimes it’s unwanted and unnecessary, I think it comes from a place of love.
People seem to be drawn to me, I would like to believe it’s because of my stellar personality and fantastic looks, having a visible disability – either hobbling along or using a wheelchair – and now in my later life going everywhere with a beautiful guide dog; people chat to me, they open doors for me, offer me their seat or escort me to an accessible entrance.
Patience takes practice.
I’m extremely impatient, I want everything done now and of course, I could have done that better myself. However, the reality of living with chronic pain isn’t just about accepting help but in explaining clearly what your needs are in order for someone to help you effectively; your family, your doctor or a stranger.
The person you need to have more patience with more than anyone else as yourself. Acknowledging that things will take you longer, that you may need support in completing tasks, that being helped isn’t you being a burden, you cannot change your situation but appreciate everything and everyone you have in your life.
Gratitude is key.
None of us
For me it’s also about being grateful for lesser pain days, modern medicine and technology and the good health of my family and friends.
Being alone doesn’t mean you have to be lonely.
When your life isn’t the normal 9-to-5 like everyone else’s, going to work, seeing friends and making plans can be extremely isolating and lonely. The Internet and now the world is at your fingertips, the disability community is vast and no matter what time zone you’re in there will always be someone to share a laugh or tear with.
I’ve connected with so many amazing humans from around the world because of the Internet, the Spoonie community is one to be joined if you aren’t already a part of it. Twitter is the best platform for this, just search for #Spoonie and you can follow and befriend people who are in A similar situation to you.
Sometimes you can feel like you are the only one in the world living with your condition that’s going through your pain and struggles but I promise you that there is friendshi out there for you, you just have to find them.
About the author
Sassy is charismatic, outspoken and sometimes funny. You will probably find her drinking tea and singing badly to her Guide Dog Ida. Her passion is to raise awareness of disabilities and make the world a more inclusive place. You can follow her ramblings on Facebook Twitter and Instagram or join her Facebook group a place for people to share their stories of disability and make new friends
***
Watching someone you love growing up in pain every day & knowing there is nothing you can do to ease this is heartbreaking, but also makes you burst with pride to watch their sheer determination & fight not to let this define them. So well done you for being that person. X