I’m grieving the loss of some dear and close to me. I’m not able to talk about it yet because I cannot relive the past 2 days. It has left me emotionally on empty. I feel like a shell of myself. I can’t talk to people. To my friends who have reached out, thank you so much. It means a lot to me. More than you know. A special thank you to my dearheart who came around to drop off Haribos because she knows I love them AND supper so that I didn’t have to cook. Just love this woman.
It’s just really hard for me to talk about it because a lot happened. I found that I could write. I needed a release of this all consuming energy. I was walking around aimlessly, like a zombie, not knowing what to do next. I couldn’t watch t.v. or concentrate on anything. The best way to explain it is I just couldn’t do life. The one thing I could do was throw myself into writing. So here I am. It’s helping me cope by making me focus on what I’m writing. I’m doing something I love and God knows I need some joy in my heart right now. I will do a full blog on this soon so that you understand the complete turmoil and the emotional wreck I am. Let’s pretend I’m not. Just for a little while.
I’ve been struggling with my Fibromyalgia pain. My neck and shoulders are in a dire situation and my SI joint and hip have been giving me problems too. If you know Fibromyalgia then you that stress and anxiety makes it flare up and after what we went through it has really shown itself! Complete spasm! Hubs bought me this great back strap for my lower back. It has a heated pad on it, and you strap it around your waist/lower back. You can then continue about your normal day! Genius! Just imagine me…. Heated wheat bag on my neck and heated back strap. What a site. Looking really wonky. You know that I went for those amaaazing steroid neck shots which helped a bit but didn’t take the pain away completely and then of course the stress and anxiety that happened, and it wore off.
With Covid I couldn’t find any physiotherapists. I normally have a physio session once or twice a week depending on the pain/spasm level. People, I was desperate! I reached out everywhere, even on Twitter! Finally, a good friend, Wesley came to the rescue and actually gave me the details of my original Physio. I still go to her practice but see her colleague more often now as she isn’t always there. She started treating me 13 years ago when I was diagnosed with osteo-arthritis in my neck and has been on the whole Lupus and Fibromyalgia trip with me. She is amazing and has amazing gadgets and techniques. Very much ahead of her time.
Annnyway. I went to her today. She was horrified at how tense my neck was. “But I took x + y” I exclaimed. She said “Those are super strong muscle relaxants, and this is how your neck still is? Geez we have our work cut out for us today”. And so, it began …. A gruelling but necessary physio session. It was wild!
She started off using her hands. Like everyone in my medical team, she said, “I have to apply really strong pressure because it’s bad, but you have a high pain threshold. Still, if it hurts, shout”. I said strongly, “No, no the more pressure the better. Knock yourself out.” She attacked my neck and half of my head. HOLY HELL. I did not know I was so sore. I did not know the muscles in my HEAD were so sore! Next, she did the needles. Again, she remarked that I was one of her best patients when it came to this. I don’t even flinch when she puts the needles in. I’m like ok when are you putting in the next one and she says, “I’m done!”. It felt really good. Even better when she wiggles those needles in the knotted areas!
She then used a sonar machine on my neck for about 20 minutes. Mmm good. She then told me she wanted to use the shock wave machine on me. Okay…. I’m down. Look I’m down for anything if it’s going to give me relief. And then it happened …. Think of those vibrating massage machines x 1000 vibrations. It had what felt like two tennis sized balls spewing out these shock waves. Omg. “Lord Jesus. Lord why? Make it stop! I silently cried inside while I violently shook. Not like I could even say it out loud because I was shaking so much I couldn’t talk! I legit thought I was going to throw up! My teeth were chattering so badly. I stuck my tongue between my front teeth. Well I quickly recoiled! I was going to bite the end of my tongue off with this convulsion! Look, I may have a pain threshold but this is a fragile little body! I Snap, Crackle, Pop like Rice Krispies!
Thank God the torture eventually stopped. Now onto the compacted needles. Needles that she inserts into you and it dissolves in three days? Anyone have this before? She tells me, “You know you had 24 needles in you earlier right?” Er, nope? Who keeps count? You weirdos! I respond with “I had no idea”. She proceeds to show me these needles that will be inside my body and explains why. She really is great. I don’t care. If it’s going to give me pain relief, bring it on! I’m sure some of my fellow Figromyalgia friends can attest to this. She then, half laughingly says “I’m only putting in 12 of these needles though”. You do you boo. “You can put in 100 if you need to I respond.” She inserts it and of course I feeling nothing. Great! And next!
Now it’s time for kinetic tape strapping. You may have seen it on sports players / athletes etc. She explains that because my energy is so low and I’m in pain I’m slouching more, and that is just going to make my problems worse. So she is going to strap me – from shoulder to lower back. This basically keeps you in an upright position. When you move in an incorrect position etc the tape pulls on you and it’s bloody uncomfortable, sore even. So this has to stay on till Thursday. It’s really hard to remove. I’ve taken skin off before! EEEK! Let’s see what Thursday brings. On Monday next week I am going for a lymph drainage session with some fancy machine she’s got. She uses an anti-inflammatory, detox and essential oils with it. Strict instructions: No body lotion! Ummmm Okay so I will show up ashy then. Just remember you asked for it.
Note on having Lupus : I take so much meds, alot of them not good for me long term. Like the immunosuppressant I take for Lupus. It’s actually chemo meds. So I take a daily dose of chemo to keep my Lupus in check. This was doubled before lockdown. It makes me feel super ill, gives me hyperpigmentation and hair loss. I was at a point where I had to inject myself everyday. The chemo builds up in your system which is why I have to have my kidney and liver function checked every 3 months. The chemo built up so much it caused so many complications because it had caused toxicity. Things like needing a blood transfusion and being seriously ill for a while were just two of the plethora of problems. We eventually changed the chemo to the one I’m on now. It has it’s own challenges but this is part of our lives. Wanna stay alive? Here take this array of meds that have horrific side effects. Yep, I’m sure my Lupus friends can attest to this.
This is why I love anything that helps detox my system. Lymph drainage is amazing. I favour dandelion when it comes to a good detox. I make a big jug of it and add lemon and mint and refrigerate. Makes an amazingly refreshing drink while still detoxing your liver. Give it a try and let me know what you think! Also things like saunas, detox massages, Epsom salts baths. The list goes on. Contact me if you want more info on this. So extremely important to keep detoxing because the plethora of meds we’re on and the high dosages! If you have Lupus or any other disease that makes you take lots of hectic meds then please try and detox.
It felt really good to write this. It has lifted my spirit a bit. I think I will be writing a lot. It allows me to focus on what I am writing and I get lost in the story. When I watch t.v etc my mind can wander into places I want to avoid right now. If you’re reading this, you read the whole post and I thank you for that! This has really been cathartic. Writing has always been cathartic for me. I think I will be doing a lot of writing. Expect a lot of blogs. I apologise ahead of time.
All my love