Thursday, 24 January 2013

Rheumatoid the truth

I've had rheumatoid since I was 23 years old and I'm now approaching my 28th birthday. When first got rheumatoid I knew things would change, the doctors told me it would but I never expected it to change to the extend that it did. I don't want to sugar coat rheumatoid for my readers so this is probably the hardest post I've wrote. I was 23 years old loving life then my mum passed away in the August next thing I knew I was getting joint pain and I was really confused by it I eventually got diagnosed with rheumatoid and that is when my life changed. Pain - This is the one thing that no one can fully understand unless they to suffer with this condition. You are in pain from the moment you wake up to the moment you fall asleep and often while you are asleep you feel the pain of your joints. Every minute every second of the day you can feel pain in your joints. Which means you have to take painkillers to allow yourself to live with less pain. Insomnia - This happens because your in such pain you can not sleep your physically tired but you just can not fall asleep. Depression - This hits most people with chronic illness at some point. We are in pain we can not sleep then our brain starts to over think things. Loneliness - We spend a lot of time on our own because of pain so we end up becoming lonely. Fatigue - If we aren't suffering with insomnia we often suffer with fatigue and then we are sleeping all day and half the night 12-14 hours a day if not more we just crash because our bodies are flaring so they are fighting us which makes us tired. Isolation - People tend not to make plans with you because you have to cancel some times because of pain or fatigue so people start not inviting you places so then you become isolated and lonely. Other conditions - The thing about rheumatoid is once you have it you know you could get other things such as fibromyalgia because of the way our body works also if we get a bug we often have them longer than most so getting sick is normal. Shame - This may surprise you but when your a grown adult and you have trouble getting dressed some days and have to ask others to do it for you it hurts a lot. You try and make jokes about the things that upset you but it hurts more than you'll ever know even if we laugh about it. Medication - This is scary because its not just the painkillers it's the many other medication you have to take such as methotrexate which is a type of chemotherapy or the biologicals or other Medication. Yes we take them even though they make us sick tired headache bad stomachs why because its a chance to feel better but then the disappointment kicks in when it doesn't work. If it does work it's in the back of your mind will it stop working as it does happen then what? Doctors and specialists - You often see them more than your friends and family! They become a part of your life and not just them but their nurses. The rest of the team they have from occupational therapist, physiotherapist, dietician, surgeons and other such people. Pharmacist - This person knows you by your name and knows your medical condition because you see them so much they are like your friend! They know what medication you take and ensure you don't have antibiotics you can not have with your rheumatoid medication. Family - Your family try and help you when they can but they don't really understand what your going through. They try and support you but it's hard for them because they don't really understand how ill you are. Family often stick by you and you become a stronger unit. Friends - You often loose friends when you have rheumatoid for many reasons they can not cope or they don't like being told you crnt do some thing and get fed up of it. On the other hand though you find out who your true friends and they stay with you through the good an bad times of rheumatoid. So you see rheumatoid isn't just about the pain of the condition there are many other aspects both mentally and physically it's not easy living with rheumatoid for any suffer. My own rheumatoid nurse said to me recently "people with rheumatoid are some of the strongest people I know" we have to be because of what we have to go through every single day. I dedicate this post to my fellow rheumatoid suffers and people who live I'm chronic pain every day.


  1. Well said! Well said! I think you were very brave &strong to write about these things.
    The Circle of Chronic Pain sucks ROYALLY! And really (fortunately) no one can truly understand it unless they too are caught up in its relentless cycle.
    What many don't realize is that it's not so much the pain that gets to us: for the most part we can grit our teeth and bear it. It's the other things you mentioned--the losses that are often hardest to bear yet overlooked by our health-care providers, friends, and family.
    There's the loss of self identity as we have to give up schooling and jobs that we love leaving us to have to redefine ourselves--yet we don't want to be defined by our illnesses.
    There's the loss of independence as we are often unable to care for our own basic needs such as meals & personal hygiene. Horribly humbling. And oddly, shame &guilt piggy-back on that though it's not as though we asked for this to happen.
    Added to this is further loss of independence as we can no longer reliably make either short nor long term plans as we never know if our bodies my betray us further at that time forcing us to cancel.
    And then there's the worst loss of all: that of friends &family who should be your support system during such times but instead "get tired of taking care of a sick person" or get upset because "you can never be counted on" or simply because being around someone who is sick "isn't any fun." Those losses cut to the bone.
    Thank you for being brave & honest about your feelings & what you've been battling.
    Love you, my friend!

  2. Hi Vicky!

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  3. Hi Vicky,

    I'm sorry to hear about your mum... I was once an RA patient too. I was pain reliever dependent and have gone MRI multiple times. My suffering ended when I had a stem cell treatment with my orthopedic surgeon, Dr. Purita. Since then, I was able to have my normal life back. I play tennis 2-3 times a week, train my dogs, and all. I hope that my story will inspire other RA patients too. I wish you well.