Im not sure where to even start here because I don’t want this to be a long story but I do think it’s important that I share this. I gave up blogging a while ago because I didn’t feel like I had anything to share anymore and because I’ve been having a really hard time, but I keep thinking about what I’m going through and how alone I feel – even though I know there’s others out there going through the same thing. Which is why I felt it was important that I share my experience in the hopes that others who are going through this don’t have to feel alone like I do. Please forgive me if this post is a little jumbled, today is a hard day for me pain and fatigue-wise so my brain is a little foggy.
If you’d like a back story on my symptoms and how this all started, scroll down to the bottom of the page.
Chronic Pain is a Thief
Chronic pain is a thief of many things, but here are the main things it deprives me of Every. Single. Day.
- The ability to function as a normal human
- My social life
- My ability to be the parent I want to be to my son
- A normal appetite
- The ability to clean my house or do normal chores
- The ability to get out of bed some days
Chronic Pain Also Gives
Chronic pain isn’t always a thief though, it also gives me;
- Pain (duh)
- A feeling of worthlessness
- Severe fatigue
- Strain on my marriage
- Strain on my relationship with my son
- Self doubt
- Self hatred
- Medical bills
- Flare ups
- Brain fog
The thing with chronic pain is, it can be caused by many different things and no two cases are the same. Just because you have a cousin who’s best friend has chronic pain and they’re able to work a full time job and function like a normal human doesn’t mean that I am the same. For me personally, I’m unable to take ibuprofen or codeine for other health reasons which leaves Panadol my only other option for pain medication unless I want to take prescription opioids or go to the hospital for morphine. The other point I really want to get across is that when someone with chronic pain has fatigue, it’s not like the usual “I stayed up too late and only got 6 hours sleep” sort of tired, it is the sort of tired that feels like you haven’t slept in days even though you had a full 8 hours sleep the night before. It’s the kind of fatigue that when you wake up in the morning, you feel like you’ve already worked a 12 hour, labour-intensive shift before you’ve even gotten out of bed. It’s not the kind of tired you can push through with a smile on your face. On days like that, I’m lucky if I’m able to take care of my son on my own. If I make it from the bed to the couch and can stay there for the day without falling asleep, that’s an achievement.
The main thing I want people to understand is, I don’t want you to fix me, I don’t want you to suggest things you think will work such as diet and exercise, I don’t want you to doubt me when I say I’m having a rough day, I don’t want you to judge me because I look like absolute trash whilst attempting to get groceries on a flare up day, I just want you to understand and support me. I don’t expect you to understand how I feel, because it’s impossible unless you’re in my position which I wouldn’t wish on anyone, I just want you to understand if I cancel plans at the last minute, or if I’m complaining for the hundredth time that I’m not coping, I just want you to support me when I say I can’t do this anymore. I want to be reassured that my condition isn’t who I am, and that people still see ME and not the woman who constantly complains that she’s in pain or that she doesn’t know how she can live like this for much longer. I want people to care enough to check in with me and ask if I’m okay – physically I’m almost never okay but mentally I have good and bad days, it’d be nice to be asked how I’m going for once. The other thing I want people to know is that on flare up days, I can’t just “push through” it. Even if I do manage to drag myself out of bed and force myself to go to whatever it is that I’ve got planned out of guilt, I end up paying for it for days afterwards. When your pain is so bad you’re in tears because no matter what position you lay in bed the pain isn’t relieved, you can’t exactly push through it no matter how desperately you want to participate in normal life.
This isn’t aimed at anyone at all, I’m very lucky to have a very supportive husband and a very understanding best friend (Thanks Laura 😘) this post is more for people who have friends or family with chronic pain or illness and don’t understand what they’re going through or how to support them.
I still don’t know exactly what is causing my pain, however I am having surgery in 10 days to hopefully discover, diagnose and treat whatever it is that is ruining my life. I never thought I’d ever look forward to surgery and I am definitely anxious and stressed about it, but I am literally counting down the days.
I just want to be me again.
If you’ve made it through the whole post I really appreciate you taking the time to read through it. If you are living with chronic pain or illness, feel free to share or send it to your loved ones if you’re having trouble explaining how you feel. If this can help even just one person than it was worth sharing. I’d appreciate some good vibes and prayers for my surgery, as much as I’m looking forward to getting some answers and hopefully finding relief, I’m also terrified haha.
My heart goes out to anyone going through this, I truly hope you can find some comfort and a treatment that works for you.
I’ll post an update once I’ve had surgery and am up to it.
For the past 18 months I have been living with pain. It hasn’t always been chronic, to begin with it was only during my period. I’d have to take time off work every time I got my period because the pain and fatigue was so bad, eventually I ended up losing my job because of it. I went to multiple GP’s who told me “some women just have pelvic pain and you just have to live with it. Take some Panadol.” and basically made me feel like I was being a sook. I finally got a referral in December 2017 to see my specialist who I’ve been seeing since I was 19 due to my PCOS. I explained my symptoms and he said he thought it could be endometriosis but there was no way to confirm without surgery. He encouraged me to book in for surgery in January as the longer you leave it the worse it can get, which I now know to be very true. However, we didn’t have the money at the time and simply couldn’t afford it. Unfortunately by February my pain was a daily occurrence, and the fatigue was just as bad. I now also have “flare ups” where I’m in a ridiculous amount of pain and struggle to get out of bed, they usually only last a day but I’ve been lucky enough to be going into my 4th day of a flare up. I’ve spent 2 out of those days bed ridden. I made the mistake of trying to “push through” yesterday and today I am paying for it big time. However, I will hopefully soon have some answers. In May I was blessed enough to receive $2000 from my grandmother who passed away last November and we were finally able to book surgery. We decided to go through a different OBGYN in Brisbane as he is qualified to perform another procedure that I require during the same operation so he was the obvious choice. We’ve managed to sell a few things so that we have the $4000 to go ahead with surgery in early July. Keeping everything crossed that this surgery can diagnose and treat my pain because this is no way to live.