It’s summertime in Johannesburg and we have been having some really hot days. The kind where if you are wearing make-up it will just end up in a puddle at your feet. The humidity has me on full Diana Ross level. I was stuck inside in this heat on my sickbed. Whoa, between the heat and humidity? It really added to the ‘vagrant chic’ look MY BODY was deciding to go for. Thankfully, this evening I am sitting in my garden (a.k.a The Secret Garden) enjoying the light summer breeze coming over from the nature reserve. I love this space. It’s peaceful. It’s quiet, except for the sound of the multitude of birds coming from the surrounding trees and reserve. I’m relishing every moment. For 25 days, this was impossible because of my recovery. I was couch-ridden, unable to move without pain, and unable to go and sit outside because I would have to move my whole pillow fort. Eye roll. I need botox for my whole face including my eyes! I’m awful at hiding what I’m thinking! I also have a hard time controlling my eye-rolling! Some people and things make me roll my eyes as far back as 1975 and I don’t even realise that I’m doing it.
The staples have been removed! It was much less of an ordeal than I thought it would be but I do have a high pain threshold so I’m not sure. At that point, I still could not walk properly. I shuffled but even the shuffling would see me paying for my escapades later. I can happily say that I no longer have the pain of impinged/pinched nerves in my lower back! I haven’t NOT had this pain in years. In fact, I remember being treated with Lyrica for the sciatica nerve pain I was experiencing, which eventually led to me just having this ongoing problem with a pinched nerve on the right side for more than 10 YEARS. Eventually, over the past few years, the left side joined in obviously suffering from FOMO and wanting to be in on the action. Eye roll.
Tomorrow is the big day. My post-op assessment. Eek. I’m feeling uneasy. There are little niggly issues that I will speak to my doctor about tomorrow. I’m scared to say it out loud and make it real in fear that they will have to go in again and try part 2, which he said might happen. He had explained that there were no guarantees and also explained what the second step would be should this not work. I really love how thorough he is in explaining everything to you. Either way, I do not have pinched nerves! Anyone who ever had a pinched nerve can understand this feeling of freedom! I would say it was pretty successful in this regard.
My neck. Oh boy. It’s given me 14 years of hell and all kinds of extreme treatments I partook in because of sheer desperation. For the first 3 weeks after the radiofrequency ablation to all my discs, I actually had some kind of relief! I decided to be brave and attempt to use a computer. Mistake. Big mistake. My physio had banned me from my laptop for months and it did make a difference but… I thought hey since things are this good let’s test it. I’m both glad I did and also want to kick my own ass because I did. The pain is back. My occipital neuralgia is back in full force. I’ve been suffering from a pain flare for the past week. The pain levels vary between 8 – 10. It’s the kind of pain I would go to ER for so that they can “break the pain”. I will wait till I see my doctor tomorrow to discuss the way forward. I did email his office and ask if my physio could have a go at my neck with her shockwave machines to get rid of the pain. It’s like a little jackhammer, and of course, she has to crank it all the way up. It did however really help with pain flares in the past. No, go. I have to wait for tomorrow. Ugh.
Did it work? I was told there were no guarantees and this is merely us scratching the layers of Fibromyalgia. I’m not sure if you remember but in previous blogs, I spoke about him saying that with Fibromyalgia it’s like a fire. The smoke is the pain and everyone focuses on getting rid of the smoke but no one is putting out the fire. He gets rid of the smoke and then deals with the fire. The short answer is yes and no. I’m ok with this. Yes, it has been 6 weeks of a really difficult time; physically, emotionally, and mentally. I’ve maintained, what are 6 weeks in the grand scheme of more than a decade of chronic pain? Right now I don’t have nerve pain. I am super grateful for this. My neck… well my neck has always been the really hard one. I have arthritis in my neck as well as really bad Fibromyalgia. It’s an actual trigger point for Fibromyalgia.
I’ve learned a few things during this journey. I have always been someone who celebrates small wins. My nerve pain being almost gone is a win! While I’m not back to full mobility i.e bending etc I have some pain relief! When the staples were removed it was a catch 22. I thought of the staples as demonic little creatures trying to control me through pain. Now that they are out, I don’t know my limitations because nothing is gouging me to say “wrong move”. So, I hurt myself. Numerous times. I had to learn that maybe bravery didn’t mean trying to push myself and try and do things to impress my husband. Whilst appreciative of some of the acts, he was very unhappy with the fact that I was hurting myself. Yes, the staples were out but we were told by the wound care specialist the insides would take another three weeks. He was also getting really good at cooking! I think he secretly enjoys it but plays it down! I’ve been really impressed with his creations. I give him the basics of how to make a dish and he puts his own spin on it. I really do not know how I would have gotten through this without him. He has been absolutely incredible.
Maybe bravery was sticking to my treatment plan to make sure this was successful. Bravery meant sitting in my pillow fort every day and pushing through mentally. Being immobile and just sitting there was not me being lazy, it was my healing. I needed to be brave in finding ways to adapt to my situation without falling into a dark depression. I’ve learned that bravery comes in many forms, depending on the situation. It didn’t always have to be me coming out as Tracey the Warrior Woman. Believe me, keeping your shite together while going through what I went through, even I will admit takes a lot of strength. Me losing my independence and having to rely on hubby so much was soooooo hard! I’ve always been independent but here I was stuck, basically unable to do anything for myself. I had to concede which was major for me. I fought it when I started feeling better but I did nothing but hurt myself. This was not bravery, it was stupidity.
So tomorrow morning is the big day. I am going to sit and prep for the appointment. If you suffer from a chronic illness you understand how important it is to prep. All your symptoms, questions, and concerns have to be listed. My brain fog often takes over and I forget everything I wanted to say. I leave the appointment angry and frustrated with myself. My doctor is so great at being thorough and explaining that this list is very important. I have just purchased the book he wrote about Fibromyalgia. It’s such a great book. I will be doing a review and I’m thinking of having a podcast discussing the things he talks about in his book.
To reach a wider audience and share this new journey with a pain specialist who really gets it, I have now created multiple platforms for your to access My Chronic Life in whichever way you like best! I will be making an audio version of a more detailed version of this blog. I know my blogs can become quite long. Listen, I don’t get out much! With the podcast, I am able to tell you extra info and stories. So even if you’ve read the blog, I will be sending a link to the Spotify Podcast as well as a YouTube vlog so you can hear the extra deats and listen to it when you’re in the car, cooking, etc. My new pain specialist is the one who got me to start blogging again. He wants me to document my journey because there is just such a lack of understanding of Fibromyalgia in South Africa and people are too often misunderstood and fobbed off by some people/medical professionals thinking it’s a psychological problem.
Anyway, we will be discussing that in further detail as I continue the journey. It was weird, but an old post of mine popped up. It was a post of me being excited to see a pain specialist. I read through the thoughts and emotions and looked at where I am now. I will be doing a podcast on the excerpts of these old blogs and talking about what I was feeling then and how my journey progressed to where I am now.
I have to do podcasts for now. Please don’t leave me now! I’m just in way too much pain to be able to type (literally even my scalp is hurting! wtf?) but I want to continue sharing because this is really cathartic for me and I get some great feedback that really inspires me and motivates me. That I really do reach some people with my story. It’s very humbling but also affirming that I am doing the right thing. Even if I reach just one person… I really do appreciate those of you coming out with genuine love and wanting to see me get better. You guys are rockstars!
Typing this was really tough and obviously done in stages. I would love it if you subscribe to my Spotify and YouTube accounts so that you are notified when a podcast/ vlog comes out but also to be part of this part of my journey. So the accounts look really basic right now but I’m working on it! Spoiler alert! It won’t just be Chronic Pain because I am so much more than that! I’m also really excited to share how effective my FODMAP eating plan is with you! I’m seeing such amazing results. If you suffer from stomach problems e.g IBS this is for you!
I will send the link out later with the podcast version of this blog that contains more detail. Right now the accounts are very basic. I’ve just started with these platforms so please go easy on me! No, don’t go easy on me. I want all your honest opinions, even if you want to message me anonymously. I’m always open to growing and since this is a whole new world for me, your feedback is super important!
Sending you all light and love!
Please stay safe everyone!