It has been a long time since I last wrote a post or was actually active on any of my social media accounts with new looks or new creations. So where have I been?? That is a question that has a long answer which has taken place over a long, painful amount of time. Its been a struggle. So I decided to write a post to explain what has been happening, am not going to divulge all the details but enough to give you the overall picture.
So it all started way back in August 2017, when I woke up with ear ache and a slightly swollen ear which I thought was just me sleeping on my ear funny in the night but no. The pain felt like someone was sticking something in my ear and really made me scream out at times. So off I went to the doctors who checked me out but then sent me to the hospital because I have had a lot of operations on my ears when I was younger, like grommets, T tubes and adenoids out, and at the time of all this happening I was across the country visiting my partner so it wasn't my normal doctors. But anyway, so the ENT guy at the hospital checks me out and says that my eardrum is stuck down which is probably the cause of the pain and will clear after a couple of days. How simple that would be! I thought nothing more of it and took my Lemsips and Beechams waiting for the pain to stop.
It didn't...from probably about September to October, which is also the start of the new academic terms so I was teaching my media makeup groups at the time, I was in agony with this ear pain and a couple more symptoms joined in for good measure. I had constant pressure pains and loud buzzing noises in the ear as well as the sharp stabbing pains that would literally make me yell out, which when your trying to teach a class is not the greatest but luckily my students are the greatest so they totally understood and supported me. I saw quiet a few doctors within this time frame; GPs, hospital and out of hours doctors who gave me an array of possible causes to this pain as well as a lot of medication to try to stop it. None of them worked. I was put on a waiting list to see an ENT specialist and with my momma pushing them for an appointment cause I wasn't coping with the pain very well I got to see them a little sooner.
This appointment was not a fun one I can tell you! The doctor was great but he did have to stick a camera up my nose to check there was no lumps or growths...it was horrible!! It feels like drowning in reverse which is not a delightful experience I can tell you! He gave that the all clear and then looked in my ears...again he said that the ear drum was stuck down and gave me some sprays to try to unblock whatever was sticking it down. I used the sprays...still no luck and not cured...by this point the pain was now causing me to have awful headaches on that side of my head, I would say they were pretty much migraine like. As well as all this I was trying so hard to keep my lessons going and make sure the students didn't miss out but it was so hard, I was determined though and I had help from a very awesome person named Lisa!
Back to the ENT specialist I went, at this point I was kind of feeling like this pain was all in my head and there wasn't actually anything wrong with me cause nobody could find anything so it was starting to really effect my mental well being. Now at this point I had been put on a large amount of nerve blockers, Gabapentine, and the dose was being increased steadily to try and help with the pain...only problem is it made me super drowsy and I was still feeling the pain.
So ENT guy actually called another ENT guy who was the top doctor in the clinic, he was so lovely and really supportive with me, reassuring that he would get to the bottom of the pain and sort it out. He put a camera in my ear and checked out these pesky eardrums that everybody keeps telling me are stuck down...nope...apparently I have slight concave eardrum that's partly down as well as a lot of scar tissue but nothing that would cause issues and I had all my hearing tests which came out clear sooooooo not the ear drum.
As you can image right at this point I was feeling pretty helpless and down...I really wished that there was a doctor that was basically "House" because we were ruling things that it could be out left right and centre but still not coming up with anything. The lovely and supportive ENT guy then sends me for lots of scans...head scans, MRI scans, CT scans...there was a lot and at this point I couldn't carry on with the teaching...it was getting too much pain wise and the medications they had me on made me super dopy and sleepy, so my awesomely lovely buddio Lisa helped out once again and took my session plans in to make sure the students didn't miss out. Which am totally grateful for, she is an absolute angel!
More waiting for the results...lovely ENT guy contacts me back and tells me that one of the scans showed a shadow which seems to be cyst right on my hearing nerve which would explain a lot of my symptoms and problems. Now its pretty scary hearing that in your head is something that shouldn't be there and that needs to be surgically removed. On the one hand I was grateful that it was something effecting me and not me going absolutely insane and feeling pain were there wasn't any...on the other its the idea of someone poking about in the side of my head. This finding meant I was on to the next doctor...Neurosurgeon who requested another detailed scan of my head.
However me being me, I could just have a simple wait for the appointment and get sorted sort of story. No, I was feeling worse and worse, one night I felt really dizzy and everything looked weird so momma rang the doctors who then called an ambulance, who then rushed me to the hospital where I decided that ear pain wasn't enough so I actually collapsed and had one of my vasovagal episodes! I was ok...just in pain...and the emergency doctor was really nice to me.
My detailed scan of my head found that the cyst was not a cyst...it was what was known as a vascular loop. This was basically a blood vessel looped around my hearing nerve which was pressing and causing the pain. I will admit that when I was told this, I cried...a lot...I was ready to have an operation to get rid of this cyst and that would be end of this but no its not that and I needed to be referred to another specialist to get it sorted, Neurologist. I was so down at this point, I felt like I would be in pain forever and nobody would be able to tell me what was wrong with me and how to cope. I was so depressed, pain is an awful thing...not just for the obvious ouch that hurts sort of pain but the psychological effects of it. I was not only feeling depressed because I was struggling to do the things that I normally do and to get on with my makeup stuff but also because I felt like a burden on those around me. My partner didn't have his normal girlfriend, instead he had to take care of me and spend days just watching me sleep. My family were worried sick about me and again had to take care of me all day every day. For me it just made me feel like a burden on them. And that's all because pain. If anyone is reading this and agreeing with me, its normal to feel like this but I know deep down in my heart that both my family and partner are doing these things cause they can see its not my fault and they want, what I want...to be me again and do the things I normally do.
Unfortunately the waiting list for a neurologist is extremely long, and I was desperate to get sorted and get back to normal; teaching and creating crazy things, so I paid for a private neurologist who made me feel so much better about things...not 100% but so much better then before.
Basically he explained that the vascular loop is causing an effect called atypical facial pain which is were the nerves are going mental and you get all the headache pains that go with it. He reassured me that its not made up, am not going insane and is a real condition that he has seen before. At this point I was so happy...but I was like, "soooo how do we cure it? How do I make it go away!!"
This part...not so happy...its difficult to say if it will go away fully (on the verge of crying at this point)...however we can refer you to a pain management clinic who will support you with new medication to block the pain and calm the nerves as well as support groups to teach you how to manage the pain.
Manage the pain?!? This was not what I wanted to hear...in my head all that translated to...you have a chronic pain that will never go away and you will always occasionally yell out in pain or need to lie down cause the migraine pain has gotten too much to deal with. I think that this part of my story was when I felt the lowest, I was in pain, I was watching everybody around me needing to take care of me and plan outings around my health issue, I had gain a ridiculous amount of weight cause of the medication and I couldn't see an end. I couldn't see how I was going to get back to who I was before all this was happening, how was I ever going to get back on track with my career in the SFX industry, how was I ever going to get back to teaching. It was a deep dark hole of depression that I was spiralling into.
The appointment at the pain management clinic did help somewhat, it made me realise certain things that I needed to do to move forward and "deal" with all this. The doctor and nurse again were lovely and explained how the process worked as well as gave me a lot of reading material on pain management. I was prescribed some different medication that should allow me to function better rather than make me drowsy all the time like the gabapentin, only problem was I need to be weened off the gabapentin but I'll talk about that later.
I was told about a support group I could enrol in to support me. This appointment gave me a glimmer of hope, it gave me an idea that I wasn't alone and that there are other people out there that have the same condition as me and are coping with it. It also made me see that its going to a long process to getting back to being me again but it is do able. I think everybody in that room (including my momma) had to convince me that I was expecting too much of myself and I needed to take each day as it comes. The whole celebrating the small successes rather than looking for the big.
This made me realise that I was going to have to deal with this internally, meaning I needed to accept my new condition and move on or adapt in order to get back to how I was before.
Now am not saying that this realisation was some sort of halleluiah moment were everything came into focus...am on the journey of managing this pain and am still asking "will I ever be normal again?"...to which my partner does give the best response..."who wants to be normal?"
So that's what has been happening, now I realise its nothing to do with makeup but I felt I needed to just get it out so that those who know me know what's happening and those who may be are going through a similar thing can read about my journey. Am not saying that this blog will focus on that sort of thing because makeup and SFX is my passion but I will do some posts in the future based on my pain management successes; both the triumphs and tribulations.
My name is Ruth E Moulden; I am a SFX and Makeup Artists who also teaches and I have chronic pain because of a vascular loop causing atypical facial pain...and am going to be ok.
