One goes down and another goes up…

So we got my lupus activity down which is so great! Really happy about this. Unfortunately, spending 9 days in a hospital bed has made my fibromyalgia flare up badly. Even though I had physiotherapy in hospital every day it was not enough to keep this pain demon at bay. Fibromyalgia is the disease that affects my muscles and connective tissue amongst other things.

I have spoken about it before but you may have missed it. So when you see meat you see that white sinew over it. Fibromyalgia causes this to contract which becomes really painful. Underneath it is the muscle. The muscle then goes into knots and spasms. Deep knots and spasms. The area most affected for me is my neck and shoulders. My rheumatologist remarked to Irfaan one day “you probably have to use your elbows to get into these knots”. Spot on doc.

I get so desperate for relief that I make Irfaan jab his elbow in there with extreme force. Often leaving me bruised and with skin abrasions. I spend alot of my day massaging the knots out of my neck. Irfaan once said that he’d like to be able to see me go through one day without massaging my neck.

I thought that since I had so much to share I would have lots of blog posts this week. Unfortunately I have been so debilitated by the pain in my neck and shoulders and sacrum area that I was not able to achieve this. I’ve been so frustrated by that because I love my blog. It has become so therapeutic and cathartic for me that I put the hamster on the wheel in my brain and started coming up with ideas. Then it hit me. Tracey you dumbass. Voice to text!

So this is my first blog using voice to text! I have found that it really helps me with creating my blog posts! I am also able to think out loud and have found it to be a more freeing way to produce content. I open up more and I’m less restricted by caring about the previous sentence and making everything fit nicely. I’m really liking this!

I think that if you have an illness or even just an injury that makes writing hard, you might want to take a look at this kind of software. I can imagine people riddled with rheumatoid arthritis using it or someone who has injured their hand. You can use it for e-mails, notes to yourself, journaling or any other space in your life you might find it handy in. All you have to do is go back and edit and format if you need to! Success! So now I can start blogging again!

As for my fibromyalgia… I am just in the most incredible pain. I am on pain patches and oxycodone. Some pretty hectic stuff. My desperation is such that I am sitting with a microwave heated wheat bag on my knotted muscles in the middle of a heatwave! My little brother Matt (14) is really good at happily massaging me. He gets so freaked out. He always insists that it can’t be a muscle because it feels like a bone. Throughout the massage he will make statements about how incredulous he is about this muscle thing. I call the one muscle in my shoulder “the root of all evil” because alot of pain radiates from that area.

I have made an appointment to see a physiotherapist on Tuesday. A sports physio. Bring on the extreme pressure massage and anything else thats on offer. The physio in hospital quipped that there might be some crying when he took out the needles to do some dry needling. Oh puhleeeease is what I thought. He was shocked when I asked for more needles and to jab the needle into the knot and move it around until the knot released. Yeah dude I might look like a little girl in the hospital bed but believe me a little dry needling is nothing.

I have routinely had steroid injections from the base of my head down to my tail bone. My rheumatologist literally uses a pen to mark where he will inject me. 18 of those injections at once is not uncommon. I freak him out when I don’t even move or take in a sharp breath. It’s simple. Firstly, let’s not delay this and secondly this is going to give me relief so bring it on big time. Have fun, go mad because in a few days I will have some pain relief , if only for a while. Who cares. I will take what I can get. Being in constant pain isn’t just physically draining, it’s mentally and emotionally draining as well.

The reality of fibromyalgia is that I am in pain every single day of my life from the time I wake up to the time I go to sleep. So if someone says I can be pain free for just an hour I will grab it with both hands. Hell I’ll go full octopus on it because for that hour I won’t have to think about pain and that brain break is so welcome.

So for now I am doing some really gentle stretching. The heatwave is making me take things slow which is for the best I suppose. I was suffering from blackouts pre-hospital stay and I’d hate for that crap to start rearing its ugly head again too.

Back to blogging it is! Thanks to voice to text! So expect some posts over the next few days! I told you I’d be back! 😁

One Love!