This blog has been a long time coming. I have been avoiding it, if I’m being totally honest. I’m sure you have noticed the fact that I have not been posting much, and this has been a huge adjustment.
Let’s start with the back story— I started noticing changes in my body last May (2017). It first started with waking up with sausage fingers that wouldn’t bend and were painful. My knees and ankles started swelling when I would walk the dog, which is something I have always done frequently. I blamed it on the summer weather because for years, when it is hot and muggy, I’ve experienced swelling. This went on all summer, and eventually I started experiencing shortness of breath when walking down the stairs. I was going through extreme bouts of exhaustion. This wasn’t your typical “I had an intense workout” type of exhaustion. This was — I ran a half marathon and am completely depleted with nothing left to give. Fall asleep on the couch well before bedtime sort of exhaustion. I also was having burning in my joints and lots of night sweats. Sleep became impossible, and migraines were constant. I have always been a migraine sufferer, but in November, I had a migraine that lasted 13 days with zero relief, thats when I really new I was fighting something terrible in my body.
In December I went and saw my family doctor, who referred me to a Rheumatologist. I was also put on Lyrica to try and offset some of my symptoms. The Lyrica worked for about 6 weeks then became null and all the symptoms creeped back in, and worsened. Right around Christmas I truly hit a low and could barely get out of bed. It felt like a long two months waiting for February to see my new doctor.
I am now being treated for Rheumatoid Arthritis. It has been about 8 weeks, and as you have probably noticed, the past 8 weeks I have not been posting or active online. I have been really trying to sort through all these changes which has been a difficult journey. I think I have been trying to stay positive, but it has been a huge mental struggle. Every day having to pre plan every aspect has become overwhelming. Between appointments, work, trying to stay active, as well as get enough rest, its consuming. The medications are hard to adjust to. I had a terrible time coming off prednisone, and in the past month I have really hit a low.
There are so many things to read about and educate yourself on this new disease I have been battling. Scheduling life is more difficult, as I feel like anytime should be spent trying ways to feel better. Swimming, and walking the dog are my only real forms of activity. I’m trying to embrace them, and feel positive about it. Limitations are hard to accept, and when I’m 27 it feels just way too young for these types of major changes. Acupuncture, massage therapy, naturopath, physiotherapy are just a few things I have to explore on this journey. Its really a trial and error situation because everyone’s body is different, and everyone is at a different stage.
The mental strength I simply have not had. It is hard to not be down on yourself when some days grocery shopping can put you in bed for the next day. To have people wonder why you don’t physically look sick, but yet are in tears curled up in bed crying after a simple day of cleaning the house and a long dog walk. The bottom line is, that having a chronic illness is completely unpredictable, and trying to have your mind and body connect is very difficult. It has sent me to the deepest depths of sadness trying to accept it. Some days I just wonder what did I do? I used to be extremely physically fit, loved going to the gym and doing leg day and cardio. Now I simply could not dream of it. Now a comforting day is baking something nourishing, reading a book, and watching tv cozied up in bed. Understanding your body takes so much time, and then to accept it, is even harder. I have been trying to process everything on my own, and I realized I’m just not strong enough to do it now. I have explored the option of a pain counsellor which is definitely something I’m planning to take advantage of. Not letting the sadness and confusion consume me has been the hardest.
Slowly I am able to gather my thoughts, and move in a direction that serves me best. Each day I try and think of something new to improve my thoughts and energy. I know there will always be setbacks, but getting into a positive mindset with a productive movement is the only thing I know to do.