So, thats me up there ^^^ and my name is Jessica Chelsey and guess what?! I have Lupus.
I recently made a video addressing my current health issues but I know that alot of my followers on here prefer to read my writing over watching my videos and that is totally fine by me. So here goes...
I've had it my whole life, I just didn't know I did. I have suffered with a number of things, some continually and some sporadically throughout my entire life. These include, terrible migraines where I projectile vomit, lose my vision entirely sometimes and have pain so excruciating I can't get out of bed for 2 whole days. Sinus problems- I would get sinus infection after sinus infection, have pain around my nose and eyes, have my eyes water so much strangers would stop me in the street and ask if i was ok because of all the "crying" etc which eventually lead to me being diagnosed with Chronic Rhinitus in January this year. I would randomly break out in rashes which I was told was Urtacaria, just my sensitive skin, an irritance caused by sitting on grass bla bla bla. I've also always got mouth ulcers more than the average person and they are huge and angry and super sore. It sounds like alot. It is but after you have lived with these things for 25 years they seem like nothing to you. Until you group them all together.
Before Christmas I had gained a little bit of weight. My baggy clothes fit me but my tightest dress didn't. Nothing major, although, I can't tell you how much in pounds because I never used to weigh myself. Seriously. Until this year I hadn't weighed myself since 2013 once and then before that one other time when I was 18 back in 2009. So, no clue how much but it didn't feel like alot. I put it down to stress and some recent traumatic events in my life. Then on Boxing Day 2015 I got the Norovirus. It sucked. It was horrendous and it ruined my Christmas time. I love Christmas so natually, I was devastated. Not for too long though because I was too busy being sick or running to the loo every 10 minutes.
Then January came and it bought along with itself more stress for me. And I swear it felt like it happened over night. I woke up HUGE. I couldn't fit in anything I owned. It was humiliating. I didn't know how it happened. It wasn't all of the over indulgence of Christmas because I didn't get the chance to eat ANY of the lovely festive food on a count of the Norovirus. I was gutted. It felt like life was kicking me whilst I was down. I went and spoke with my GP. I started meeting with a dietician and various other Doctors. They weighed me weekly. The first time I had ever weighed myself regularly in my life and I was soooo much heavier than I ever remembered being. It wasn't normal. Everyone told me it wasn't normal. One week I lived off of salads and low fat homous and went back to the gym 5 times and I had gained 7lbs. Yup a pound a day. Whilst eating healthier than I ever have and going back to exercise for the first time in months. It became infuriating! Nothing I tried, worked. Everything I did and ate was being monitored and controlled by professionals and yet my weight kept creeping upwards. I am now 4 dress sizes bigger than I have ever been. Heartbroken.
This all set alarm bells ringing for my GP. I am so lucky I have a great GP. She sat me down and told me she had spent quite some time looking through my medical records and that all of my problems lead her to believe it was one thing. A disease. A life threatening disease. The rest of the appointment was a blur of her mentioning things like organ damage, organ failure, short life expectancy, Chemotherapy. I was terrified! I went home and cried. I was so confused. I must explain, I had gone to her a little while before this covered head to toe in an awful rash. My lips and tongue had swollen over the weekend and I had to have an ambulance called for me. Here is what it looked like, since no-one ever seems to truly understand how bad it was just from the word rash...
Yup. That's my back. I woke up with that ^^^ all over me. On my scalp, in my ears, on my privates- EVERYWHERE! From this I was sent for blood tests and allergy testing and everything else under the sun for what went on for weeks. So, I was confused. I thought I was seeing my GP to be told I was allergic to nuts. NOT to talk about organ failure and Chemo. Just another one of lifes great curveballs I guess. I sat and explained to her that I had also been in loads of pain recently. My back was killing me, my shoulder kept me up all night, my knees felt like they would break under me. And I was exhausted. All the time. I said to her that it didn't seem to matter how much I slept- I was ALWAYS tired. My GP nodded and said that only makes me more convinced that you have this disease.
Fastforward months later and I was back in hospital...again. This time to meet with a Dermatologist. I had been told today may be my diagnosis day. I should clear the whole day for more testing etc etc etc. I was in and out in 5 minutes. I have never met a man so sure as the one I saw that day. He took one look at me, one look at my medical records, told me how thorough my GP was and then said,
"Yup. You definitely have Lupus."
He explained that from now I would be tested more, I would have to meet with a rheumatologist on a frequent basis and that he had no idea how long that would take. I left the office. I told my boyfriend. He went grey. I asked him not to look at me like I was dieing. I was terrified...again!
So, I have Lupus. It is now just a case of finding out what that means for me. Every person who has Lupus has it differently to the next. We now need to find out if I have organ damage and if I do, how bad it is. We need to find out exactly what type of Lupus I have and then we need to sort out the right treatment for me. That could be anything from Anti-Malarial type tablets to Chemotherapy. Annnddd BREATHE.
For those of you who don't know what Lupus is- don't worry, most people don't. It is an Autoimmune Disease. Which means my body is creating Anti Nuclear Antibodies which your body may create to fight illnesses and mine is busy attacking my organs. Basically.
So, how am I doing?!
Alright, I suppose. At first it really didn't sink in. Then it hit me like a shit ton of bricks. Now I am just trying to cope with each day and not get too upset about what might be. I've been terrified about the whole organ failure thing. I've been worried about when I have kids since I will now be a high risk pregnancy. I wonder if I should even have kids if there is a chance I might give this to them. I have been frustrated by my continual weight gain and surprisingly unphased by the thought of losing my hair. It's a lot for one person to handle so I guess, in summary, I am overwhelmed.
I am trying my hardest to remain positive and feel as though currently ignorance is bliss and whilst I don't know how bad it is I can pretend it's not bad at all. But it's been hard. Every day I am in pain which ranges from really bad to agonising. Every day I feel like I haven't slept for weeks. But, every day I surround myself by the things and the people that make me happiest and that seems to be helping for now!
I really hope this helped raise some awareness of a hugely misunderstood and unknown disease that affects so many lives. I intend on making more videos and more posts about living with Lupus with the intention of connecting with those who may have it and educating those who don't. For now, though, if you take nothing else from this please just take this final statement- be kind to everyone because you truly have NO idea what battle they are facing behind closed doors!
Peace & Love xxx