So today I woke up and it wasn’t such a great day.
Firstly, just the simple act of waking up in the morning, is a tough one for me. After 6 – 12 hours sleep, I usually feel very stiff, my back aches , which often comes with a headache.
My Alarms goes off at 6:45 and every ten minutes for half an hour. Usually followed by snoozing for another few minutes. What is hardest about chronic pain, is how utterly exhausting it is. I lay there in the dark, in my heated bed slowly stretching my limbs , finding the energy to slide to the edge of the bed finally tumbling out. At this point, my joints can usually be heard and felt cracking and popping as I try to walk upright.
Its usually 7:30 am at this point and my feet already hurt, my legs feel like ive been on a huge hike and my back feels over worked, before ive even had my breakfast.
Each day it’s a 50/50 if I will be able to buckle or lace up my own shoes without the aid of my husband. Because part of scoliosis surgery involves fusing the spine and the loss of flexibility.
This is the time, every morning when I will ponder for about an hour, if I can actually make to work that day or if I have to go to the Dr and get some rest. 99% of the time, I choose to take my CBD and get out of the house because lets face it, taking an 11 am Dr Appointment won’t allow me to get much rest if you consider staying up till 9 to call the surgery and the travel time. The prospect of a prolonged and unknown period, sitting in a dank uncomfortable waiting room next to people with flu and other bugs, is less than relaxing. Alas, I will probably leave for my train as I do each morning in life.
Just getting the train, the 5 stops to my office, can be difficult to navigate because I have to battle with what my body tells me and the usual struggles of a rush hour commute. Ide rather stand, stretching out my legs and back. But the crush of a crowded train makes sitting, when possible, the sensible option.
By the time I get to work, Im already drained and like everyone else Im going to spend 7-9 hours sitting at a desk or in meeting rooms. Sitting is a killer, my muscles cramp, my joints seize up and my back feels like its on fire. If I stand to long, it has the same effect as sitting.
If I make it past 3 O’clock without taking codeine and CBD, Im dong well. Usually that period after lunch, where everyone feels sleepy, is a killer for me. I’ve actually had days when I fear that I may fall asleep at my desk and get fired. Because what no one knows that I am exhausted 24 hours a day and it has nothing to do with late nights or too much partying. Granted I am writing this article at 2 am, because I can’t sleep, but we’ll get to that.
Assuming that I get through my day, an effort, that despite my best attempt here, I am unable to fully express, It’s what goes on, out of the office that is hardest.
You see after a day of work, where you have structure an distraction, suddenly you are free to do what you like. Or so I tell myself most days.
But the reality is, I get home by 7:30, have dinner, maybe a shower and I’m in my bed by 10pm.
Although I am not always in serious pain, all day, every day, the fatigue remains. Just carrying my own weight becomes a burden.
The darkest moments come when I’m getting into my bed, while my husband carries on, enjoying his free time, thinking “Is this it? Is this my life?” What a terrible waste of life it seems.
I love to draw, design, do yoga, walk and more recently – sing. I have been slowly working on my business plan for an idea that I have and feel very passionate about. But often times, I just don’t have the energy to do any of these things. I day dream about them and I plan to go home and do them, then find myself slowly walking to the bedroom, half asleep pretty early.
Yoga is a tough one for me, because I know it does me a world of good and can help control the pain. But if I can barely carry my own weight because of lack of strength, the idea of beginning a yoga session seems impossible.
Same goes for the business plan. I have always dreamed of having my own business and using it to make a difference in the world. But no matter how passionate I am, I just haven’t got the energy to dedicate myself to the project.
This is where bouts of depression come and go. When I spiral into thoughts of how can THIS be my life and what a failure I must be. Where I get frustrated and not being able to do the things I want.
On top of this, I spend a lot of my energy chasing the medical profession, searching for the Dr who may, one day, hold all the answers and get me back my life.
As I said before, my osteopath has performed minor miracles, but it’s always temporary. As I see myself getting older, I see the situation getting more difficult, not helped by my mental state. A viscous cycle of Mind Vs Body, seemingly never ending, is taking its toll on me.
Sitting here at 2 am, is a result of having slept at 9pm and now I’m quite awake, laying on my back, on the sofa, waiting for another pain killer to kick in and do its job.
That was a few weeks ago now, I didn’t have the energy to finish.
I have since seen a neurologist who is working to find the route cause and best treatment plan for the pain. In the meantime, I have a lot of education to take and appointments with various specialists.
I’ve just arrived back from holiday in Finland. I had to get away to nature, to escape my thoughts and check back in with the outside world. Although I was able to benefit from the fresh and freezing winter air, my fatigue would catch up with me and a nap would be required before dinner, each day, despite my taking pain relief regularly. I discovered that that that in the real cold, my pain killers could only do so much and the effect was reduced. Thank goodness for the Nordic love of saunas and large, comfortable beds.
Hopefully, I’ll soon be getting back with a positive update to this saga.