Hi All, Welcome back!
I wanted to write today because by all accounts, today was a ‘good day’ ~ that was until about 6:30pm.
I was able to leave the house today, socialise briefly and enjoy the sunshine but by mid evening, I had a sudden, intense onset of pain.
I’m all too used to the “I’m-ok-oh-wait- I’m-not” merry go round and how do I explain this to people? Simply put; Lupus Problems.
We all have our own set of Lupus Problems and so I thought i’d take a lighthearted look at the truth:
For example, you’re tired all day. You finally get into bed and boom! Wide awake. This my friend is a classic Lupus Problem.
Here are a few of my top Lupus grievances:
1) You have to take multiple medications. Only one of those is actually licenced for Lupus.
2) You have to take your medication but at a certain time of day, with food, 3 times a day and then extra medication to protect your stomach against the impact of taking so much medication. Phew!
3) You definitely deserve a holiday. None will insure you.
4) Speaking of the sun, the doctor tells you to avoid the sun. You can’t go on a winter break either because you have Raynauds!
5) The very drug that keeps you alive also makes you fat and eternally hungry! Oh the struggle…
6) The phrase, “But you don’t look sick”
7) You only see your Rheumatologist every 8-10 weeks. In that time you’ve racked up a list of 27 problems that you need to discuss. But the appointment is only 20 minutes long and so you only get to discuss 2 things.
8) The GP contradicts the Rheumatologist.
9) You’re invited to something in 3 months time. You’re available and really want to go but it’s always a 50/50 chance that you’ll be well enough.
10) You have to listen to your body instead of your heart or your head.
11) You can never verbalise just how tired you feel.
12) Meeting medical professionals who have never heard of Lupus.
13) Suddenly becoming sensitive or intolerant to things that were previously fine.
14) The excruciating pain.
15) You rarely just have Lupus. You have Lupus AND Fibromyalgia, Cushing’s disease, Sjögren’s syndrome, Raynauds etc etc
16) Brain fog.
17) Sleeping too much or not sleeping at all.
18) Feeling guilty.
19) Someone hugs you ~ it hurts.
20) Not knowing if your depression is Lupus related or merely a consequence of living with chronic illness.
21) The judgement when you use a disabled parking bay ~ even when you have a valid badge/permit.
22) Waiting for medication to kick in!
These are just some of my Lupus Problems but I would love to hear yours. Head to the Facebook group Sick Of Lupus to share your views!
Thanks so much for reading