Ok so first of all I know I promised today would be the fly lady post and how much she has changed my life (which she has) and I will get to that. But today I woke up and this is the post I need to write today, the most pressing thoughts I am having and the biggest need for me.
There are many different types of pain and it seems that lately I am facing all kinds of pain at the same time. I have had experiences lately that I can only call soul-crushing and emotionally devastating. I have had big choices to make and the pain that goes with those decisions. This pain is something that is personal and something that only I can deal with.
However this is not the type of pain I want to talk about today. For anyone who doesn’t know I have Osteo-arthritis and over the years this has spread from my hips, to my lower back and my knees. It is hard for me to explain to you the type and intensity of pain I experience on a daily basis. It is hard for me to explain what living with chronic pain is like. But I will try.
If you were to ask me what “level” of pain I am experiencing on a daily basis it would be hard to answer. My pain scale is different to someone who does not have arthritis and is different to someone who has rheumatoid arthritis (much worse than mine). Why? Because I am never pain free so to me a level of 3 is normal, a really good day, like nothing is wrong. So I guess you could say my 3 is a pain-free person’s 0. So when you ask me what my level is I will answer based on my own pain scale, not on yours. Today for instance. Today I am at a 7. A 7 for me is bordering on unbearable even with painkillers. If I get to 8 I am unable to function properly and strongly consider asking a doctor for something more. But today’s 7, my 7, is probably closer to someone’s 10. Well as best as I can remember if I felt this way pre-arthritis I would be rolling on the floor in agony. Of course some people may be able to cope with more pain, it is subjective I know, this is just my experience of pain.
When people ask me how I am doing I lie. Well maybe not lie, I just don’t tell them how I really feel. Why? Because after a while, for other people, it gets old. You don’t want me constantly telling you I am in pain. You don’t want to hear how moving hurts and doing just the day-to-day necessary tasks can be close to impossible. You don’t want to hear how getting out of bed can make me want to cry and every step I take is an effort that involves stabbing pain. It’s not that you are a bad friend or unsympathetic, you just don’t get it. I understand. If you were constantly going on about something I would feel the same way. It’s human nature. And so I don’t share what my day-to-day life is like. Because I don’t want to be a whinger, a whiner, a person who has no friends because they are sick of hearing me complain. It’s not a commentary on my friends, they are wonderful people, just a true assessment of how I feel. And anyway, what will that complaining achieve. Nothing. Nada. A big fat zero. Nothing will take the arthritis away. It is here and it is here to stay.
Some days getting out of bed feels like trying to climb Everest. The effort I expend having a shower and getting dressed is exhausting. There are days I have to ask Niamh to put my socks on for me, or help me hook my undies and pants over my feet, because I just can’t do it. There is nothing as shaming and embarrassing as that. It’s not just the pain. Being in that kind of pain is exhausting all on its own without putting in all of that living and caring for others. Some days my joints burn, from the inside, and that’s when I know I’m in trouble. That’s when I know my joints are at their limit and I need to take it easy (as much as possible anyway as babies don’t understand mummy is supposed to be resting). I refuse to let my pain impact on my children. My taking care of myself can not be to the detriment of their health, safety or needs.
What is the worst thing though? It’s actually not the pain (even though it can be debilitating), it’s not the arthritis (although that does suck big time), its not the frustration of not being able to explain how I feel. The worst thing is some of the comments I get. Here’s just a small example of some of the thoughtless things I have heard:
Just take the pain killers / anti inflammatories / something stronger (and I believe the rest being thought is – and just shut up). The short answer, I can’t. I have 3 kids to look after and anything stronger than Panadol really affects me. Who is going to look after my children if I knock myself out, or impair my judgement and ability to focus?
You’ll just have to deal with it and get over it. . This direct quote was actually from a doctor when I was first diagnosed. My sister has sero-negative arthritis with rheumatoid factors and I was experiencing more pain than her. I knew there was something else wrong. After seeing another doctor and getting surgery on the hip I now know a bone spur and torn tendon were to blame.
Maybe if you lost weight it wouldn’t hurt so much. . Yep you are so right, so very right. And yes I don’t always eat the best foods for me but its not a constant junk fest. I’d just like someone to tell me HOW instead of WHAT. It is hard to lose weight when you can’t even walk on a regular basis. This comment hurts not because it is saying you are fat, it’s because it’s saying I choose not to do anything, as opposed to seeing I do what I can, as much as I can, when I can.
You just have a small pain tolerance (then there is usually a comment about how much more pain that person can deal with). You know what. This pisses me off more than anything else. This comment is really saying “You are a wuss and a whinger. It’s only a problem for you. If I was in your shoes I would be fine. It’s not that bad.” Let’s make it perfectly clear. I am not a wuss, I am not a sook, and this fucking hurts. If I am telling you about it it’s actually hurting me more than you could imagine. And just to showcase how tough I am, after both Caesars I was up and walking the next day, three days later you wouldn’t even I know I had just had major surgery. After my knee arthroscope and hip operation I recovered faster than thought, and was doing more than expected a whole lot quicker. Maybe, just maybe, it’s not me!
It’s amazing how unsupportive people can be when you don’t LOOK sick. It’s amazing how unsympathetic people can be towards people who have chronic pain. It’s amazing how little empathy people can have to someone experiencing chronic pain. This is what makes me angry. My arthritis is not going to go away, it’s not going to get better, there is no cure. For me the best I can do is take it as easy as possible on the bad days, and make the most of the good ones.
Now I know this post is sounding very negative, and yes I do tend to have negative thoughts. There are times I have cried and railed about how unfair it all is. How angry I get about the fact that in my early 30’s I have to be careful like someone in their 70’s, 80’s or beyond. But that’s not how I choose to look at my life most days. Most days I am thankful this is all I have to cope with. My arthritis won’t kill me, it doesn’t require constant surgery, I can choose not to take my medications and I will be ok. I am aware that there are other people right now dealing with much worse. People fighting cancer and other life threatening illnesses, people who have lost limbs or been severely injured in accidents. Although I can not bring myself to be thankful I have arthritis I am thankful that is all I have. My arthritis has shown me how strong I am, how I can do things even when I think I can’t, that I can overcome something and do so without making a huge fuss over it or need praise for doing it.
The reason I wrote this post today was to bring some understanding to those who are lucky enough not to live with chronic pain or an “invisible illness”. When you look at someone you may not know what they are going through even if its debilitating. There are many of these invisible illnesses that impact on the sufferer’s day to day life without you even being aware of it. Lupus, arthritis, chrohn’s, food intolerances, diabetes, chronic fatigue, and many more. There are people out there suffering and you don’t know because they choose to just get on with life the best they can. So when someone does share with you how they feel, how much pain they are in, how unfair it is, just listen. Listen with empathy. Give sympathy. Don’t point out how lucky they are it’s all they have, or that there are other people worse off. If someone is talking to you about this what they are really saying is I just need someone to be there and understand.
Today I called Hubby at work and he knew it was a bad day from the strain in my voice, the tiredness and resignation. He also knew I just needed to cry and be told to take it easy. That it was ok to put myself first where possible. He’s really good like that and I love him so much more for just knowing.
Do you suffer from an invisible illness or chronic pain? Or do you know somebody who does? Are we whingers and do we need to suck it up or has this post made it more understandable? Tell me what you think 🙂