Hey everyone! I am back after a few months and I’m saying goodbye. This blog post will be slightly longer than usual as I will explain why I was away and why this is my last blog post.
A lot has happened since the last time I wrote a blog post. I was told that there was nothing else my rheumatologists could do for me and that I should exercise more and that would “cure” me. I freaked. Then I was lucky to go see another rheumatologist that also shooed me but before doing that she explained what was wrong, what the other guy meant and what the next steps were. Apparently, I stopped having signs of arthritis and I was left with hypermobility which, I found out later, was generalized and a lot more severe than the other rheumatologists told me it was. Now, I’m seeing a physiatrist at my local hospital and she rocks. I do physiotherapy every day, sometimes at home by myself and sometimes at the hospital with a physiotherapist. I even bought this electrostimulation machine that has TENS and EMS programs and reduced the times I took pain medication by more than half. I luxate and subluxate joints every single day and I seem to have some problems with other body systems but the doctors are still studying my case so I can’t say what I have for certain. Currently, I’m waiting on genetic tests to see what connective tissue disorder I have.
Now I shall write about the reason why I took a break from blogging for a few months and then explain why I’m stopping.
The reason that I paused my blogging is that I needed to stop thinking about my health problems. As you all know, not thinking about our illness at all is an impossible task so I chose a realist objective: stop thinking about my health problems 24/7 and restore my mental health.
It wasn’t easy. Here is how it went:
I started going out more and doing everything despite of the pain, to do this I depended on pain medication, of course. Then I got tired of taking pills and the constant pain so I stopped and decided to rest as much as possible and only get involved in activities that didn’t involve much movement. Didn’t work. Resting means more thinking, more thinking mean depression. It was during this time that I paused my blogging, as I spent a lot of time thinking about what I was going to write and, consequently, thinking about my health or, more accurately, my lack of health.
How did I turn my life around?
Simple answer, I allowed myself to go grieve. I went through the 5 stages of grief.
First, I stopped reading about my illnesses, turned off all the notifications from support groups, unfollowed pages with disease related humour and kind of went into DENIAL. I was healthy and nothing would stop me. This stage allowed me to know my limits. No, I can’t go out all night or walk all day without spending the next day in excruciating pain. I can’t do many things. But I found out all of this by myself, I had to. I’m 21 with a chronic debilitating illness and I see everyone my age doing amazing things, how did the doctors dare to tell me to slow down! They must be wrong… except they aren’t.
I now faced an imaginary wall. Unable to move forward. Stuck. I was stuck with difficulties and I thought that I was alone as I saw that no one faced the same adversities that I did. Therefore, I filled up with ANGER. How unfair. How could they feel fine and do all the things I love without pain? Thankfully, this stage was a short. I lashed out and became pissed with everyone. My family, my friends, everything that moved and everything that stayed still. I cried a lot. Fortunately, I have amazing parents that put me back in my place and told me to get a grip. I realized it wasn’t everyone’s fault that I was going through this and, most importantly, I realized that there were a lot of people who cared for me so I allowed them to help me.
BARGAINING was a weird phase, it was in fact very useful. I followed every doctor’s order, exercised, changed my diet to eat a wider variety of vegetables and fruits. In other words, I behaved extremely well. I even tried to go to bed earlier or sleep in the afternoon. None of this worked… There is no cure so all those times I though “if I do this it might go away” I was lying to myself, but it’s ok. At least I acquired some healthy habits! (See this? A new healthy habit: being optimistic!)
Nothing works. There’s no cure. It’s not going away. There’s nothing I could do. I’m not getting better. I felt like I was kicked/punched in the abdomen. I couldn’t breathe, sleep and I felt numb and distant, I felt hollow. DEPRESSION. The people that describe being depressed as drowning are right. I felt like I was unable to take a breath and like there was a weight in my chest making me sink. I should have asked for help, but I didn’t. I was stubborn. If I had help maybe I would have gotten out of this phase faster. I don’t know how I got over this, one minute I was feeling like the world was ending and the next found my strength to fight. I was at home, alone, sitting in front of my bedroom mirror crying silent tears and as I absorbed this scene a single though came to my mind “I look like crap… and pathetic”. I didn’t like what I saw, not one bit. So I had two options, either fight back or let this get worse. Fighting back is hard, it takes energy and lots of effort. But I decided I was worth it, that this illness would not defeat me.
So, I ACCEPTED me. Yes, I wrote “me”. This illness is not who I am, but it’s a huge part of me and it shapes how I act and think and live. I finally took advantage of all the benefits my university has to offer because, let’s be honest, I need all the help I can get. I now accept all the help I’m offered and take the elevator, sit when I need to sit, take pain meds when I’m in pain and use mobility aids and splints when I have to. I’m at peace. As crazy as this may sound, I’m ok. I’m finally ready to fight back.
I still have bad days, but not as often.
Now, the reason why I’m leaving. I’m leaving because I have no idea of what I have. I know I have arthritis but I have no idea which type or even if it has an autoimmune cause (the arthritis may be due to the hypermobility) and I believe that not knowing this and writing a blog for a website about arthritis isn’t correct. It’s not that I don’t enjoy doing it, I love writing.
Finally, I thank you all for the time you spent reading my posts, I really hope you enjoyed them. You can still reach me through Arthur’s Place facebook group and ask me for tips and tricks to deal with pain, I have lots of experience in that area… And if you need recipes for ATM problems I can also help you with that!
This may not be a permanent goodbye, but it’s a goodbye for now.
I wish you all wonderful pain free days!
Meet Eduarda and other friendly folk on Arthur’s Place Social, our Facebook Group
(Any opinions expressed in Eduarda’s blog are not necessarily shared by Arthur’s Place. Nothing that you read in Eduarda’s blog constitutes medical advice.)