Support systems are a common talking point amongst those with a chronic illness. Comments about family and friends not understanding are heard far too often. I get it, chronic pain is difficult to understand. It is difficult for those of us who have it to understand. Sometimes I know exactly why my pain is better or worse. Sometimes I have no idea. The really difficult thing for others is that, the majority of the time, we look exactly the same regardless of our pain level.
What then can our family and friends do to help us? For me, the most helpful thing my loved ones can do is listen, hear what I say and be there. Unfortunately, I don’t always have the strength to talk and ask for help. It is these times when I need my support system the most. It is these times that make me realise how lucky I am. My family and friends are amazing. From being there, from listening to and watching me, my support system are ready to help without me even needing to say anything. This is the ultimate support we all want and need.
So, if you are wondering how you can help someone in your life who has chronic pain, take note. Listen to them when they want to talk about their condition. Watch them take care of themselves. Notice what it is that helps them because they won’t always be able to tell you.
This past weekend was a massive one. My boyfriend and I travelled interstate to meet up with relatives who were also flying in to surprise his sister for her birthday. It was a long weekend of surprises, catching up, and so many laughs. A big weekend like this is tiring for a healthy person. For a person with fibro, it’s… I don’t know how to describe it. Exhausting isn’t enough. For me, as exciting and fun as the weekend was, it caused my body to crash. Thankfully, my support system don’t need me to explain what is happening to my body or what I need. They are there, at all times, ready to help. And they do. Here’s what happened.
At the airport we wave goodbye to the last family member boarding their flight. My boyfriend and I turn to walk to our gate. Without any words, he immediately slows, he waits for me to start walking and set the pace. After a minute or two he comments “you’re limping”. Bugger, I’m slumped into my right hip, I’m hunched over. If I can just lift my shoulders up, my back will follow. No, I don’t have the energy. Just keep going and you’ll get to the gate. I’m so tired. Everything’s sore.
We arrive at the gate. No toilet. I look at the escalator that just brought us down. There isn’t one heading back up. Only stairs. I can’t do it. I can’t think. I can’t stand here. I need to sit down. But I need to go to the bathroom. Without any words, my boyfriend guides me over to a lift. Back upstairs, toilet stop complete. “Let’s sit here for a while, there’s more room”. I lower myself slowly onto the seat. I’m down. I’m going to have to get back up again. I can’t. Just sit here. Everything’s shutting down. I’m so sore.
Our flight is called, we’re boarding. I slowly pry myself off the chair, I unfold my legs and straighten my back. “You’re stiff now”, my boyfriend notices. “Mmm”. I can’t talk. No energy.
We get to our seats, I shut my eyes. Finally. I hear the seatbelt sign go off and my boyfriend immediately unbuckles his belt. Without any words, he has retrieved my cushion from the overhead bin and lifted up the arm rest so that I can lie down. I sleep for rest of the flight.
Our flight lands, without any words, my boyfriend waits for everyone to leave and then gets up. He carries our luggage and walks behind me. Slowly. I know he’s talking to me but I can only respond with “Mmm”. My head is hanging down, my shoulders are hunched, my back is slumped, my weight is pushed into my right hip. I’m limping, slowly.
We make it to the pick up area where my mum is waiting for us. Without any words, my boyfriend loads everything into the car and talks to mum as we drive home. I sit in the front seat, head and shoulders slumped over. “I haven’t seen you this bad in a long time”, mum comments. “Mmm”.
We arrive at my parents house. I get out of the car, slowly, I walk hunched over. Up the stairs, I hug my dad, softly, and walk into the spare bedroom. I sit on the bed as my boyfriend brings our luggage in. Mum gets out a pair of pyjamas. Without any words, my boyfriend helps me dress. Mum brings in a glass of water and gets my meds from my handbag. I take the meds and lie down. Someone pulls the blankets up over me. “Too heavy”, I say. Mum leaves and returns with a lighter blanket. She takes the heavy one off and replaces it. “Wake me if you need anything during the night”, my boyfriend says.
The next morning, my boyfriend wakes me. Without any words, he helps me get out of bed and find clean clothes. He takes me into the bathroom, helps me undress and get into the shower.
Another flight, a 40 minute drive and we’re finally home. I head straight to the couch. Without any words, my boyfriend walks off and a few seconds later he’s covering me with a blanket. He puts the TV on and chooses a movie that I know is for me. I watch a little before falling asleep.
While I’m asleep, my boyfriend unpacks the luggage, does two loads of washing and vacuums the floor. He wakes me. “What groceries do you need this week? Here, write them down”. I do and he’s off to the grocery store. He gets home, unpacks the groceries and, without any words, runs a warm bath for my sore muscles. Later, he cooks tea, cleans up the kitchen, puts me in bed and turns on one of my favourite TV shows. “You need an early night”, he says.