I am tired, I am always tired no matter what time of day it is. I drink coffee to try to wake myself up, then I drink another! Though I am still tired, always tired 🙅♀️.
Sometimes I read things and it still makes me upset, that we continue to suffer. That we have still not got to a point where there is a structured treatment set up to roll out for everyone who suffers from Functional Movement Disorder yet.
I go see my neuropsychologist tomorrow, I haven’t seen him in six months because I was ill yet again, which basically means I either was ill and couldn’t get to see him due to movement problems or if I was having injections or something else that I needed more. I’ve not had an appointment for a while, this is the longest time I have gone without seeing him. I used to feel I needed to see him regularly to talk things out, to feel safe and secure that he was helping me get better. I’ve been seeing a neuropsychologist since Sept 2012, so I’m not far off six years. I no longer feel the horrible “need” to see him, I think I am approaching a turning point. That I do not need a crutch to lean on so much, that I am stronger in that way of thinking, though seeing him at longer stretches out times I think will give more to talk about..
Unfortunately I am weaker in my illness, as you know I have Functional Movement Disorder which mostly effects my left side but I have bits in my right such as my hand, along with the other body problems it gives. I also have Dystonia in my face and cervical Dystonia in my neck. I still have my Non Epileptic Attack Disorder seizures which are back and usually worse, I have to try and not get upset and stay as calm as I can if I am on my own, though some I wake from along with the bruises. Along with my chronic pain syndrome, and chronic fatigue.
I was also diagnosed in recent years with Degenerate Disc Disease, and the MRI scan shows my back is straight where it should be curved which gives more explanation for the pain, it is not just the nerves that are trapped.
Then more recently my knees, and hands got the most terrible pains. I was seen by a Rheumatology Doctor who also diagnosed me with the 18/18 points of Fibromyalgia which explained a lot. I was also having excruciating pain in my right shoulder, and was sent for an Ultrasound showing I had burtisis with the fluid in my arm, and showed I have moderate Osteoarthritis in my shoulder joint. More pain, and nothing to stop it.
I get injections in my face, eye and neck for my Dystonia. I also get injections in my back facet joints and have epidural injections in my back to send the pain relief down for my legs.
Now with my new problems, I am lucky enough that my dr does small surgeries and he injects my knees for the Rheumatism pains.
I have go to my local hospital for guided injections into my shoulder, which may become both shoulders in the future. I’ve started getting pain in my left shoulder, as the consultant who did the guided injection he explained it is not unusual because when one side is damaged we use the opposite arm more to reduce using the painful arm. This then starts to wear this arm down and leaves a person possibly with both shoulders needing injections. They cannot be done together though because the pain that comes from having the guided injection after the anesthetic wears off is immense! I couldn’t use my arm for a good two days. But I am very aware to not over use my left arm, as I do not want that one to wear down with Osteoarthritis too.
Well I got through writing this without dropping to sleep, I fall asleep a lot while doing things. Either watching television or on the computer such as this morning! I suddenly wake up, it is the weirdest feeling. My fatigue can be hard to manage because you have to live your life, I cannot sleep through it. Though at times I would like to stay asleep in my dreams, where I am well and walk or run with the air rushing past me. Though it’s not to be, not unless I’m in my wheelchair or on my mobility scooter, then the air rushes past me even faster! 😁
Thanks for reading, and as always take care folks x