So the 15th December is coming fast. To many it is a normal day. To me. It's the DAY. OF. DOOM. Anniversary.
So December 2010 was going really well for me. I was 19 years old and I was kicking ass doing my apprenticeship in Administration at a housing association. I had my Christmas work do's. (Does anyone know of a pink liquid called lush?? Please let me know what it is!)
And at the main Christmas party, a higher up manager knew who I was and gave me the biggest "nudge, nudge, wink, wink... you've got a job with us after your apprenticeship!" I was ecstatic!
And on the 14th December I had a normal workday. Everything was great and I went to bed perfectly fine.
The next day however. My. Life. As. I. Knew. It. Was. Over!
Excruciating pain in my lower back, hips and groin. I thought it was my 'time of the month' and thought nothing of it, I got out of bed with some difficulty and got ready for work. I took some paracetamol before I left and assumed it'd kick in soon enough. It felt like the longest journey ever. The pain didn't go away but I kept pushing through. This happened for a few days and I bought one of those gel heatpads that go in the microwave. Granted, I was heating it up constantly but it did give me some relief.
This kept going for a month. I was exhausted all the time and finally I got a doctors appointment who put me on Tramadol and sent me on my way. Not a good thing to out me on. I couldn't eat. I lost so much weight, it was great! But it was such a bad way to lose weight. My supervisor got concerned about me. I was getting questioned all the time on what was going on and I had no answers. I carried on working through January and on the 11th February 2011 I went to work for the last time. I didn't know it was my last day.
I kept breaking down at my desk. I'd run to the loos to cry and dry my face, walk back to my desk, log back into my computer and I'd start crying again. This happened about 6 or 7 times. I didn't even know why I was crying. Eventually, I got sent home and I was in so much pain I couldn't even walk. My Dad literally walked out of work to pick me up and take me home. The next day I went to the doctors and got diagnosed with Depression and Anxiety and was signed off work for a week. Then another week. After that I was getting signed off for Pelvic pain.
Friday 13th May 2011 my apprenticeship came to an end. It was a decision made by Bath college and my workplace. I was gutted. I wanted to finish it. But I wouldn't have caught up by the end of September. The college component wouldn't be completed. It was for the best even though I couldn't see it at the time.
A couple of weeks later I ended up staying in bed all day until it got to the point that I couldn't walk. The pain was increasing constantly and the amount of medication I was taking was increasing just as quickly as I was declining.
I was bed bound. I needed help to walk to and from the toilet. I needed help just to get off it as well! I couldn't walk up or down the stairs, so I'd slide down and crawl up. Until I stopped going downstairs all together.
My Dad saw me throughout all of this. He went to every appointment I had. I went to see so many consultants in many departments, even having an exploratory operation to see what was wrong with me (they didn't find anything). It took 3 years to get the diagnosis of Joint Hypermobility Syndrome With Chronic Wide Spread Pelvic Pain.
I had physiotherapy several times throughout the years. Hospital stays. So many xrays, blood tests, MRI's. Everything came back normal! It was so frustrating!
He saw me get worse right from the very first day. Over the years I've had even more diagnoses. Fibromyalgia, ME/CFS, Functional Neurological Disorder which includes Non-Epileptic Seizures (Non-Epileptic Attack Disorder = NEAD).
My Mum got nerve damage in her shoulders in 2009 and ended up with Fibromyalgia.
My brother ended up with Joint Hypermobility and Fibromyalgia too. But he understood their pain and what they were going through.
But with me. He doesn't understand any of it. In 2016 I started having the seizures and because of that, my parents asked my doctors for help. That help was social services who got me a bungalow and carers. But it wasn't an easy journey. We all ended up having a mental breakdown because of the way it was done.
6 months after moving into my new abode, my parents moved up north, coming down to visit every 6 weeks or so. I had carers in 4 times a day. I went through so many care agencies as the carers couldn't handle my illnesses.
I can't even handle them!
They moved again a few years ago and I finally managed to follow them up here. They live a mile away now. Much better than an 8hr car journey away!
But he still doesn't "get it". He tells me to go get a taxi somewhere so I can go for a walk. That'd be great if I could walk for more than 5 minutes but seeing as I timed myself for my physio the other day, I can only walk for 1 minute 48 seconds!
He saw me bed bound for 6 ½ years. Yes I can just about walk around my new bungalow on my good days but I have a wheelchair for when I can't even do that!
I've tried explaining my illnesses, my mum and brother have even tried explaining them to him. But he just doesn't understand what it is I'm going through. I don't even know if he WANTS to understand. But I NEED him to. The longer time goes by the more illnesses I'm getting. I've put on a lot of weight due to my hips being bad. A few weeks ago I found out I have impingement in both my hips. So it makes it harder and more painful to walk. Yet I have to lose weight to get the treatment I need.
Dad says to just go out and do it. How exactly am I supposed to do that? How do I get him to understand? Maybe I can never get him to understand but I need to at least TRY to get him to understand.
I love him so much. He's been there for me my whole life. He saw my health dwindle to how I am today. He takes me to all my hospital appointments and sees me on my worst days to my best days.
Sorry for the essay but this is my first post so this is also my story at the same time I'm asking a question.
Not all of my story is on this post. It's hard to tell the beginning but not the middle or the end but I figured it's important to put down how all this started. It's hard living with pain 24/7. I hate the medication, the side effects and the illnesses themselves. I've made some amazing friendships with people who are struggling with their health themselves. If anyone would like to talk to someone who knows what it's like to live a life of chronic illness, please let me know.
Thank you. X
#EhlersDanlosSyndrome #ChronicIllness #questions #JointHypermobilitySyndrome #Fibromyalgia #Family
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