Invisible Illness · Your Stories!

Jodie’s Story #ChronicPainAwarenessMonth

As those who like our facebook page or follow our instagram, will know, is that we asked for people to get in touch and share their stories with us. This is because September is Chronic Pain Awareness Month, and in 2 weeks, starts Invisible Illness Awareness Week!

Here’s one of our stories sent in by a Jodie, written by her whole diagnosis’ experience!

When I was 14/15 years old and all of my problems began to start I went to the hospital in order to get a diagnosis of illness, but it is never that simple. So many different illnesses are linked to each other and rather than coming out with one definitive answer, I came out with a list as long as my arm of different illnesses/diseases I was suffering from. Linking this to Arthritis, when I was first diagnosed, I was also given a list of other musculoskeletal disorders that I was suffering from which came hand in hand with Arthritis. Now, I suffer from three different forms of the disease. Also, it seems that now, each time I go back for a check up I come out with something else to add onto my list!
To put this into perspective, I was firstly diagnosed with a child’s form of arthritis which they then discovered was Psoriatic Arthritis. Psoriatic Arthritis is a form arthritis that can develop within people who suffer from skin conditions, like psoriasis and usually develop after being exposed to or diagnosed with psoriasis. This form of arthritis follows the same route as psoriasis as in the immune system attacks healthy tissue on accident. So for me, several months before being diagnosed with this form of arthritis I had of course, had an outbreak of a type of psoriasis which lead to my downward spiral but did not connect the dots until (obviously) being diagnosed.
From here, at the age of 16 years old I went back and forth to the hospital due to the extreme pain I was in to be continuously diagnosed with other ailments to then be told I was also suffering from forms of Fibromyalgia and Rheumatoid Arthritis. After several MRI, Isotope scans and X-rays they found that the Rheumatoid Arthritis ran throughout all of my major joints, mainly focusing on my kneeswrists and hips. As for the Fibromyalgia, I was informed that this was something that would affect my whole body. It would cause me wide spread pain throughout and in my case, lead to difficulty sleeping, problems concentrating and severe migraines.
Other affects they have? 
Well looking at the lesser things first, like mentioned above I can hardly sleep. I am always tired and find it hard to sleep because I am too tired (if that makes sense?!). Due to both the illness and the medication I suffer terribly with migraines which blurs my vision and causes me quite a lot of pain which then links to my concentration, or lack there of. I find that I will just zone out of things really easy and going off into my own little fairy land which was not something I used to do. I have mentioned this to the doctors before and they have tried putting me on different forms of medication and gave me different ‘concentration exercises’ to try out but at the end of the day I’m still drifting off into la-la land. As for other affects, well since the  Psoriatic Arthritis I have had a lot of trouble with my skin as I now suffer terribly from sensitive skin. I react terrible to any perfumed products and have to resort to natural remedies or natural body products and as for the sun, well that’s always fun. I mean who doesn’t enjoy wearing factor 50 or sunblock but still burning, blistering and coming out in a terrible rash? 
 
Pain and daily life?
In daily life when the weather is nice, I’m feeling good and I’ve taken my medication I can honestly say I am at a 5/10. However, when the weather is bad or I wake up tired, sore etc. it is standard around a 8/10. It may sound extreme I know and probably sounds like I am making it up but it is true, other sufferers will know that you can have bad days and good days but you never truly know which one it will be when you wake up, no matter how good or bad a day you had the night before. My main pains are in my legs and hips, struggling with stiffness, shooting pains up my legs and a constant throbbing pain in my hips and knees. Daily life is a struggle but I look for distractions in anything in order to get my mind off it. My main struggles are walking or at least being able to maintain it throughout regular, day to day activities. I find I can be on the go for a while and then it will suddenly hit me and I will have to find somewhere to sit down before my legs cave in and stop all together. 
 
Embarrassing?
100% yes! I mean, who from the age 17, now 21 enjoys having to ask their boyfriend or mom to help them get out of bed, put clothes on them because they cannot physically move their legs or arms, having to be carried to the toilet on bad days? Having to call the University yet again because you cannot even type out an email to tell them you cannot come in because you’re so stiff and sore? Or even worse in some cases, wakes up and cannot physically move any part of their body, including their jaw so just sits there grumbling like an infant expecting the other person to know what you want. I’ve had my fair share of embarrassing moments with it but I’m so grateful for the support system I have around me. 

The worse part for me is at this age, I’m meant to be some independent woman out in the world making a name for myself.. yet on bad days have to ring my mom or boyfriend to come up stairs just to help me go pee. And again, I have been to the doctors and hospitals to try and get better medication or different physiotherapy but the next step is surgery.. which I CANNOT HAVE due to my skin type being keloid which basically means I produce too much scar tissue and to undergo surgery could be more dangerous in the long term. Therefore, leaving my options to a wheelchair, which will be a pretty interesting chapter of my life, that again will be covered at a different time. 
 
All in all daily life is a struggle. A struggle to walk, to focus, to just get through the day without hating myself because I feel useless. But, at the same time I’m happy. I’m happy because I am still here, I have a wonderful life, family, education and have so much to look forward to. Living with Arthritis does make me grateful for the small things in life and in a way motivates me to be the best possible version of myself. I don’t think of the next day as another struggle, I think of it as an opportunity to achieve my personal best
Anyway, there was a brief introduction to my Arthritis diseases which I will again cover in the future. I hope you enjoy the read, apologies it is a bit lengthy. Please comment if you have any questions or just any feedback at all. I would love to hear what you all have to say. 
You can also find Jodie’s story over on her blog!

Want to be featured just like Jodie? Then please get in touch! More information can be found on our facebook page, but heres a little summary!

 

  • Email us at chronicprincess@outlook.com with your story! (preferably a word count of 2000/3000. Minimum 1500 words)
  • Please include your social media (including blog, snapchat etc, whichever you wish people to find) as we can link back to you and help others find you!
  • Try to refain from triggers in your post. It is fine to mention the hard times you have been through, but try to not include too much detail as it may become a trigger for someone.

We will try to email you back as soon as possible, and we will also send you the direct link to your post! All our blog posts are shared on social media, if you’d prefer us not to, then please let us know as people have the right to withdraw at any time. We can also do anonymous stories, but please let us know this before hand!

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