It’s hard to know to where to start. I’m so tired from the painsomnia and I know that is partially responsible for my level of frustration, emotional upheaval and general anger towards this current situation. Focusing on one hour at a time seems to help.
Being very much limited in my capacity to move much is hitting me hard. Having finally found a medication that helped my Dystonia, then developing this prolapse and adapting to its limits feels like a slap in the face. I cannot empty my bladder fully due to it, which is resulting in bouts of incontinence with no warning, I haven’t been able to go the loo properly since Thursday last week and that’s causing its own pain. I move around with my thighs clamped together terrified of making it worse. There are 36weeks to go before the first consultant appointment.
Acknowledging that this hit my mental health is important. I was already in a bad patch due to ongoing hair loss causing anxiety. This new complication on top knocked me down, hard. I know I’m a fighter and will adjust with time. However it’s important to recognise that what I’m feeling is valid.
Before I sign off I want to touch on one thing; look beyond the filter. In the first photo above the filters has smoothed out most signs of exhaustion, my eyes almost look sparkling and awake. It’s a nice image with little hint of what’s going on. This is an image I would post on my personal profile or my author page; it doesn’t reflect my current issues. The second photo is filter free, the bags under my eye are clear to see and the dark rings obvious. The puffiness in my face from my meds hasn’t been smoothed out. This I would post on my Dystonia and Me page. It is a truthful image.
I never posted either photo (until now). It got me thinking about the need to act ok when I’m not. It’s quite a damaging reality. We see it everyday. Just some food for thought. Personally I’m going to stop using filters, see the reaction to truthful imperfections and struggles. Live my truth. (unless me and my daughter are using it to be bunny’s)
What can I do for you today? It’s the standard greeting I find I’m met with at every doctors appointment, no matter the speciality. Perfectly poliet, open ended so therefore inviting me to dive in to the promblem that has brought me to their office. Expcept lately that is not how that questions makes me feel, it leaves me biting my sarcastic answer off of my tongue. Fix me, take my pain away, how about just stop my constant deterioation please and i’ll make do as I am but please press pause in the meantime. Let me correct myself, it’s not sarcasm, it’s truth, it’s honest words from a scared vulnerable person who wont utter them because I know the reality is the Drs are trying but their isn’t much they can do.
I was diagnosed yesterday with Trigeminal Neuragia, along with being informed they no longer expect the sight I’ve lost (the majority of it) in my left eye to return; I can see blurry outlines but I cannot work out shapes or distance. It was a bit of a hit emotionally as whenever I have had Optic neuritis before my sight has recovered fairly well, however this has been going on for a while now and if anything the pain has gotten worse behind my eye, it is incredibly intense. I’m trying not to dwell on this too much while we await my Evoked Potential results and wait for a date for my lumbar puncture test. Hopefully these tests will shed some light as to what is going on currently.
In the mean time I feel much like this blog; I am all over the place, one minute quite happy dealing with things as they come, the next frustrated that despite almost a decade of chronic illness a level of normality is yet to be reached. I’m still fighting against the current of deteriation. It may be as useless as trying to swim the wrong way around wild rapids but it helps to know that I am trying to do something to counter the every growing pill box.
I want to bring some awareness to one of my rarer Dystonia symptoms. My eyes do a few different spasm, sometimes they blink rapidly, other times they clamp shut, but more often they roll back into my head and stay there for long periods of time. Luckily Botox injections helps my first two spasms a lot so they do not really bother me anymore. However I go blind on almost a daily basis now.
When the blindness first happened last August it was only for a few minutes, it was scary but I could deal with it. A few days later I went blind for 15 hours, which resulted in 8 days in hospital whilst they checked for things like epilepsy and tumors. Needless to say those 15 hours of blindness were terrifying and I began to worry that my eyes would never roll back down to where they should be. Thankfully I have never had one as long as that since, but they do often last for hours at a time.
This particular eye spasm is not common in Dystonia sufferers. There is not much that can be done to help it as there is no way to Botox the muscles behind the eyes that cause it. Taking muscle relaxants makes a small difference, which is better than nothing. I try to be careful and stay away from anything that I know will trigger it e.g flashing lights or bright lights.
Not a lot is known about this particular symptom so it is hard to know what to do to help myself. Even Dystonia websites brought next to nothing up. Last night, on one of the Dystonia Facebook groups, I managed to get in touch with several other women, some from different countries, who experienced the same thing. I cannot put into words the joy this brought me, how soothing it is to know you are not the only person out there who cannot keep their eyes in place. It is rather calming.
The photo below is from this weekend, the flash on the phone (that we thought we had turned off) caused my eyes to spasm and go blind. These spasms are very painful, and unnerving, but are something I am learning to live with as part of daily life. I am so thankful that I know that no matter how many hours my eyes are gone for they will eventually always come back,