I’ve had one of those annoying things happen. I’m sure you can relate. You have a respite from your usual illness pattern and all of a sudden, you think you’re Superwoman (or man)
Then comes the crushing realisation that the break was temporary and actually, things aren’t good. They’re not good atall.
In short, sometimes you forget that you are living with Lupus. Now, I understand that this could sound crazy but if you’ve lived with your illness for a long time, Lupus is your normal.
For me, I have a baseline of around 6 (1 being no pain, 10 being the worst) I’m able to function but I have a pain and fatigue level that’s pretty bad most days.
When this goes up, I’m forced to rest and my medication increases. BUT when I have a day where I’m say, a 3, it’s hard to not want to take on the world!
When you’ve existed as a person with Lupus, or any other chronic health condition. You can become complacent and sometimes you can forget that…
This is serious
Aches, pains, fatigue, swelling and inflammation, depression, rashes, ulcers, miscarriages, hair loss… These are all possible with Lupus. Its a debilitating and serious illness. Never let anyone, including yourself downplay just how serious it can be.
This is permanent
Sadly, there is still no cure for Lupus. However, you must be proactive in trying to live with your illness. Don’t be afraid to make adjustments to your life that could possibly make things easier.
(For friends and family)
It’s incredibly hard for us to come to terms with living with an incurable illness. It’s bound to change us and we are often extremely frightened. Lupus isn’t like the flu. A few days in bed will not make us feel better and a nap doesn’t cure the fatigue. But, your support is invaluable and doesn’t go unnoticed.
You are on a lot of medication
So sometimes, that nausea and sickness you’re feeling, isn’t always lupus. A lot of our medications are extremely aggressive and carry dozens of side effects.
Be aware that at any time, your medication can change. From the type to the dose. A good doctor will always weigh the pros and cons before prescribing medication to you. You also have the right to decline anything that you don’t feel you should be taking.
Also, go easy on yourself, especially if you are taking the mighty steroids! These the the absolute best and the absolute worst. They give you moon face, they thin the skin, they cause incredible weight gain. I’ve spent hours crying over my moon face and my chunky everything but hey, they keep me alive.
No one ‘sees’ how you ‘feel’
Sometimes we can feel that no one understands and this is the problem with ‘invisible illnesses’. Chronic pain often brings great emotional pain. Before I went on antidepressants, I would cry atleast once a day. I’d be completely depressed and found it hard to function. In public however, I’d wear a smile and pretend I was ok. The only way to let people know how you feel is to tell them.
Pain is invisible
If you were in a leg cast, the discomfort would be obvious. With Lupus, the pain is both physical and emotional but for the majority of the time, no one can see just how much you struggle.
Other people suffer too
Everyone has something that they are battling. Health, addiction, finances, relationships. It’s important to realise that we all struggling and everyone’s struggle is important.
Similarly, friends and family are going through this with you. I try to remember that although I’m sick, my parents have a sick child and my brother has a sick sister. My pain impacts them too.
You can do anything but not everything
I can’t tell you how many things I’ve sacrificed since my diagnosis. I’ve changed career path, I’ve given up my dream of traveling, avoided relationships, my body has changed beyond recognition, I’ve been to the brink and back (several times)
I was super ambitious and had a plan for where I was going in my life and career but that all changed overnight.
I still carry those thoughts and have those aspirations but I know that my body will not allow me to live that life. I’ve come to realise that if I can make a few adjustments, take the longer route and be extremely patient, I can achieve the things that I want the most. (It’ll just look a bit different to how I pictured it)
You are more than your illness
Write a list of everything that makes you, you. Then cross out Lupus. Simples.
You can say no!
I’ve recently had to sign off work. It was an extremely difficult decision to make. I had a serious mental break and sought immediate treatment. I was worried about inconveniencing my employer but I knew I had to take this time to care for my emotional and physical health. Sometimes you just have to say no.
Keep the faith
Listen to the Michael Jackson song ‘Keep the Faith’. All you need to know will be in those lyrics!
Thanks so much for reading