I believe that from any experience, good or bad there is something we are meant to learn from it. So what have I learned?
I’ve been reminded to not to underestimate lupus. Yes it was a totally horrible experience but now I am able to really share, in real time what lupus can do to you. Being away from my “normal” everyday life was very enlightening. I got to concentrate on myself.
Lupus and fibromyalgia require a balancing act in your life. They are both affected by your mind, body and soul to be in a healthy space and being in sync. First on my development plan is this. For sure the first thing I need to address. Total wellness in all aspects of my life.
Everyone knows me for being the happy go lucky, always smiling person no matter what I am going through. Alot of the time it’s a masque. If I need to go out, I make sure I dress up and show up. Wallowing in self pity will get me nowhere. No actually it will make me sick.
Everyone knows I don’t do visitors in hospital. My parents have each offered to come stay with me to look after me. I learned that I need to let people in when I’m sick. It’s incredibly hard. I don’t want to make people worry unnecessarily. How I look on the outside does not look like a fighter. Also seeing me so drained that the most mundane tasks can be disconcerting.
My mother once saw me ill when I was in Cape Town. I was in bed for a week, unable to get up or eat. I didn’t even watch Netflix. All I did was sleep. My mother on more than one occasion loudly exclaimed that this was no way to live. She was horrified by what she saw. My dad and brothers and close friends worry about me. I do not want them to see me in that state. I do not want to shock them. This is the nature of my disease. This is what it’s like when I have a flare and I don’t want them to see it and freak them out because I know I will bounce back even though I don’t look it.
I’ve changed up previous routines. I am working on a development plan for myself. I’ve started with my diet. I have reactions to certain foods, like dairy. No more sneaky Haagen Dasz for me. That sucks because the strawberry cheesecake flavour is to die for! No pun intended. Is it worth abdominal pain though? Eggs are a definite no no. I had one yesterday and I felt like I was giving birth to that baby rhino! So no. I will also be trying no gluten.
Something I picked up in my bloods was a higher than normal acidity rate. So I’ve decided to go alkaline. Yes, thats a thing now too. Not alkaline vegan because umm yeah that’s a bit extreme. I will sharing this concept with you.
I noticed that there were people I didn’t miss talking to. I realised that I had less stress because I wasn’t speaking to people who were actually upsetting me on a regular basis. I realised how important it was to draw a line in the sand and cut out toxicity. If I was changing my relationship with food then all my relationships would have to change if I wanted to see more progress in my life.
Cutting back on certain relationships with food and people. Unfortunately some people are just in your life and you have no choice but you can change the rules of engagement which is what I needed. Defining these rules has become very important. I’ve even been chatting to Irfaan about it and he is with me 100%. In fact he is relieved that I am finally doing this in some relationships because he had asked me to do this ages ago. No more get out of jail cards. All their chances have been used up ages ago anyway.
I had an appointment with my psychologist this week. Made the appointment a month ago and I felt I needed to speak to her. I told her everything. In speaking to her I gained even more clarity.
I really want to grow this blog. For the first time in a very long time I found something I was excited about. Starting to find purpose again. I want to really grow this blog and eventually start a YouTube channel. I claim to be a lupus activist. I need to put the “act” into activism. I already have some things in the pipeline. I can’t wait to bounce these ideas off of you. My psychologist was so happy that I had a clear purpose for my life.
This blog has become very cathartic for me. Being able to explain to people what lupus and fibromyalgia are has become so important to me. Having this platform to share the highs and lows that come with this life. Like I said I even went and found a voice to text software because I love blogging and my pain was holding me back.
Thank you so much to those who take the time to read this blog. A massive shout out to those who share my blog! My psychologist asked me if I could make money from my blog. My response was “I never started this blog to make money. The views don’t equal to money. I have lotsa views I can make ad revenue from but the views I see means awareness and not money for me”
We had a long chat. She echoed my sentiments about making life changes. She actually said that right now I’m too fragile to deal with other people’s issues. I need to be selfish and take care of my mind and heart first. Now, you know you are looking fragile and feeling a bit tender when your psychologist demands that you give her a big hug and just holds onto you.
That threw me off! Like how do you take that??? Have any of you experienced this? I wasn’t sure if it was an “oh my girly you’re an effing mess…how do we even start to save you” or “you’re going to be just fine! You’re making amazing progress!” I’m going to go with option B! I’ve done it before I can do it again!!
Somehow I feel that all my readers are supporters with their own strengths. They will bring back my extreme desire to fight this. I almost feel like I have a responsibility to my readers. I love this feeling. You are giving me the motivation I need to keep fighting. Thank you. From the bottom of my heart thank you.
So at the end of the day the diagnosis is that lupus went galavanting in my body for months. Listen to your body. I knew it wasn’t normal to have one virus after the other. I did some self care instead of running to my rheumatologist. Maybe this is why they picked up damage caused by pneumonia! Pneumonia??? When?
This is one of the problems when you are chronically ill. Oh its just my lupus acting up. It wasn’t just acting up it was having a full on Shakespeare production!! Lights, camera, action! Lesson learned. Like I said before there were so many symptoms. Me being breathless and blacking out. I couldn’t finish a sentence without having to take breaths. I was involuntarily gasping for air. I was hardly eating but my abdomen was grossly extended. I had a constant dull pain under my rib. I was suffering with terrible joint pain. I wasn’t walking properly because my hip was sore and my leg moving in the socket hurt so badly.
It’s gone. All those symptoms are gone. I am still having episodes with my stomach and colon. So I am closely watching what I eat. I am slowly getting my fibromyalgia pain levels down. I can’t wait for physio next week! I’m getting stronger by the day and my body will catch up.
Next week is going to be a “kicking ass and taking names” week. Just the start. Yes lupus I’m looking at you! You need an ass kicking. Your visit is OVER.