It isn’t always easy to be a friend, loved one or family member to someone with a chronic illness or chronic pain. It isn’t easy to forgive plans missed. Or when they seem to never want to engage in activities. You wonder if it is you. You wonder if they are becoming too reclusive. You might even tell them they need to get out more.
Frankly the truth is getting out and socializing is very important to us. It helps us with our mood stabilization and sense of isolation. Sometimes though it depends on what it is the plan is for. We may very well say yes to playing cards at a house, or going for coffee or having a BBQ… and no to going to a concert or the bar. Depending on the day one thing may be too much. Desire isn’t always the factor we have to consider. We want to be out and about. To see our friends, spend time with our partner and spend time with our families. If you take anything from this, never doubt that.
We have immense guilt when we feel we are failing our loved ones. When we miss plans. When we feel we are not being there enough. When we are just not Enough.
It is really easy to understand a person with chronic illness and chronic pain if you know a few things.
1) Think Tortoise: You are the hare. We are the Tortoise. In this lovely fast paced hectic society you can keep pace, we cannot. We have to pace ourselves. We have to take breaks. One example; have you ever cleaned your house in a massive clean-a-thon? We would never be able to do that. We have to pace all housework. A little each day. Some days, bad days, none at all.
2) Think Moderation: Ever thought well, on the weekend I will catch up on the housework, take the kids out to the beach and then go visit the parents… just pack in some things for fun? Not us. We moderate our lives and that includes all activities. Think of it like having a full tank of gas vs having a 1/4 of a tank. You can get a lot father than we ever can, so we are careful of what we plan because we only have so much energy to get there with.
3) Think worst day ever: If you imagine the worst you ever felt. Like maybe the worst stomach flu ever and times that by 10 you might imagine us on a bad day of a chronic illness. With chronic pain, well lets just say that is epic pain level days. We have these epic bad days. And on these epic bad days we cannot function.We may have made plans and we may have really wanted to do those plans but suddenly we cannot do a damn thing.
4) Think exceeding your limits: Imagine you have not exercised in a decade and then you went to the gym and did a 2 hour workout. Imagine how you felt the next day. Every muscle on fire and walking like Frankenstein. If we do not follow 1 & 2 we exceed our limits and when we exceed our limits we end up Flaring and that is what it feels like. Like your body just said Nope and suddenly you are in 3 and having a really bad day all because you didn’t follow the chronic illness rules of pacing and moderation and limits.
5) The life: And this is the life. We always have baseline pain, fatigue and symptoms that are bothering us. Sometimes they are worse than others. Sometimes much worse. And the best we can do to cope is do our best to maintain. Pacing. Moderation. Not exceeding our limits. We do this and we have a life, but like I said, we are the Tortoise, man. We plan do do things when we have down time after. What we plan to do depends on many factors; how taxing it will be, how much energy it will take, how far always it is because drive time takes energy and what medications we will need to bring just in case.
6) Lifestyle: As long as you understand the above you will understand why we miss plans. How we set out plans up. Generally how we pace ourselves when we do things. Why we turn down somethings but not others. How careful we have to be. The other aspect to our lives is all the things we do to help manage our condition. These vary from person to person but can include: alternative treatments, vitamins and supplements, exercise, physio, meditation, biofeedback, psychologists who specialist in chronic illness and coping, medications. This is the Lifestyle. This is all the things we do to help maintain as best we can. We don’t need advice about it, because we have likely done it. It is merely the things we have established with the assistance of our doctors to help maintain the best quality of life that we can.
Never stop caring. Never stop loving. Never stop inviting us into your lives. Just understand we live the chronic illness lifestyle and it is just a little more careful, energy conserving and has some defined limitations we have to manage. But we want a life. And we intent to have a life with out illness.