It's Our Job

There is yet another storm forecast after we just got a bunch of snow. Up to 20cm they say. The school buses were cancelled but I usually drive my son to school on cold days and -17 counts as a cold day. Normally he would take the bus home but they cancelled the buses today in anticipation of the storm so I have to pick him up. He likes it when I drive him in as he gets to stay home almost 30 minutes longer and have more snuggles and iPad time.  He does love his morning snuggles.

I think I am finally turning a corner with this flare. I have been back on my normal dose of oil for a week and a half now after a week of reducing it by half and really suffering. I am not 100% but am getting better. My energy is better, the weird white bumps that popped up on my feet are almost gone. The pain level has reduced and I can walk almost normally. It’s amazing how fast things go downhill without my oil. I don’t know what I would do without it. It makes it hard for travelling outside of the country but I will cross that hypothetical bridge when I get to it.

I am trying to get my Rheumy to give me a biologic. While there isn’t one approved specifically for lupus currently (or at least covered by my provincial plan) I know there are several out there. It has helped my husband so much. He went from having surgery every five years to being almost 20 years surgery free. Now I get all the surgeries. I don’t think a biologic would stop the need for surgery. They can’t regrow bone so it won’t help there but I would love to get the annoyingly almost always present symptoms of lupus under control and actually feel well for once. I am tired of always feeling like I have the flu.

It’s hard when you feel like you always have the flu. You are exhausted and achy. You feel like crap. You are nauseous and vomit for no reason (and with little warning). You just feel like shit and nothing helps. This is a normal day for a lupus patient, always feeling like you have the flu on some level, even if it is minor. Not a great way to feel. I can think of a million other things I would like to feel.

I would like to feel love and understanding. Compassion and consideration. Happiness and joy. I would like to feel normal but I don’t know what that is anymore. I don’t know what normal is. My normal is being sick. I used to have a different normal but it all changed because of lupus. It’s hard to find my footing at times and I feel lost. Hopelessly moored in a coursing sea of illness, symptoms, medications, doctors, needles, tests and pokes and prods at the very least. Not a great normal. I miss my old normal.

It is true, everything changes when you get sick. I know you try and tell yourself it won’t and you fight against it but it is a losing battle. Everything changes no matter how much you will it not to. There is nothing you can do to stop it. That’s just the way it is. Illness changes everything and chronic illness means plenty of change. Your entire way of life changes. Your priorities change. Your emotions change. Your thoughts and feelings change and your health changes. You are surrounded by change, spinning you in all directions but you can’t stop the ride.

I think that is one of the hardest things to deal with. When your life is upended, it is overwhelming, confusing, scary and quite frankly, leaves you feeling pissed off. Having a chronic illness means you aren’t in control of your life a lot of the time. Your illness is no matter how much you fight it, it gets the driver’s seat to your life all to often. Your life can easily be ruled by doctors appointments, tests, scans, pokes and prods and medications. Medication management can take up a tremendous amount of time, as I mentioned in a previous post.

So, how do you deal with your life being upended? If you are healthy enough, you begin to deal with it. You start to feel your way around, looking at your new surroundings, trying to figure out just what the hell you are supposed to do next. If you aren’t, well, then the illness is in charge and all you can do is sit back and prepare to not enjoy the ride. 

With chronic illness, your life gets upended again and again. Every relapse, every time you get sick, your life gets upended as does the lives of the people around you who love and support you. That’s not fair but again, little in life is fair. You can try to minimize how much others are affected by it but that is just more time consuming and exhausting work you have to add on to everything you have to do already because you are sick, which is a crap ton.

When you have a chronic illness, one of the most frustrating things is always having to prove you have a chronic illness. Lupus will never go away. I will always be sick but I constantly have to reprove it to insurance companies and the government. If I have a permanent disability, why do I have to renew my tax credit every three years? Why do I have to renew my permit for medical cannabis yearly? Why do I have to submit to repeated reviews by my insurance company to prove I still have lupus. I would love nothing more than for the lupus to go away and for me to actually have good updates for these people but that is just not going to happen.

So much of your time is caught up in just trying to manage your health and illness that there is very little time for anything else. Having a chronic illness is a full-time job and it’s one that really sucks ass. I wouldn’t wish a chronic illness on anyone. It’s exhausting being sick. It takes up so much time and causes so much disruption. By the end of the day, all you have the energy to do is fall into bed, perhaps in your pj’s or still in the clothes you barely managed to put on early and hopefully fall asleep. Tryoing to manage your health only causes exhaustion which is only exacerbated by the exhaustion caused by the illness in the first place. It is a never-ending vicious cycle you are stuck in, like a hamster on a treadmill but the hamster can get off the ride when he wants while you are stuck forever.

I have come to terms with my illness on most levels. It is a work in progress. I worry about how it will affect my son or if he will develop the bone disease I have. I worry that he will be scared by my health or the surgeries I have to have. I worry that the pain levels I have to deal with scare him and leave him worried about Mummy, fixating on how to make me feel better. He is such a sweet little boy who just loves telling Mummy and Daddy that he loves them. 

He deserves fun times. A happy childhood. Parents who can care for him. He deserves the world and I want to give it to him. I don’t want him robbed too because of my or his Dad’s health. We work hard to keep things as normal as possible but he is getting older and starting to understand more. I know it scares him and he worries but it’s our job to reassure him. It’s our job to love him and provide for him. It’s our job to keep him safe. It’s our job to prepare him for the world. We are his parents and it is our job to make life as normal as possible for him. I won’t let the insidious nature of chronic illnesses creep its way into his life. It’s our job to ensure he feels safe, secure and loved. Chronic illness may rob me but it won’t rob my son.