I am not sure what this post is about or if there is any actual point to it, I guess it is just me, having a ramble when I am feeling as frustrated & confused as I am.
If you have followed my blog as far back as 2015, then you will know that I have overcome a lot in the last 3 years when my 1 single vp-shunt failed & I had to go through 3 major brain surgeries & have a second vp-shunt put in alongside the original to 'fix me"
This post isnt about that though, I go on about my 'brain surgeries' enough apparently. This is about the events & problems that have unfolded in my life after all of that happened. see, people think that because I had my brain surgeries & a few years have passed, that I am all okay now & nothing is wrong with me, when in reality, they couldn't be more wrong.
So let's start at the beginning, 6 months after my surgery, when one morning I woke up & I couldn't move my left side at all. my face had fallen on one side & I couldn't speak, I felt like I was trapped in my own body & my bones felt like they were on fire. I started to panic! Neil, my husband, came into the bedroom & asked me what was wrong but all I couldn't do was grunt, whilst tears streamed down my face. Neil saw something wasn't right & called an ambulance, to which I was then blue-lighted to Pinderfields Hospital where I spent the next few hours having tests done!
The scariest thing was, this pain, this numbness that I woke up with, after a 45 minute 'episode' by the time I had gotten to hospital, it had completely disappeared. I was able to move my left side & talk again, but I was left exhausted, fatigued & rather confused. the hospital thought I was possibly suffering from a panic attack & sent home on some medication called Amitriptyline which I later found out is actually an antidepressant.
Then 3 days later, it happened again, & once more I was blued-lighted to hospital, but this time to Leeds General Infirmary, the paramedic witnessed my 'attack' & was convinced I was having a stroke, so when I got to the hospital I was greeted by the stroke team, but again, after 45 minutes, everything went back to normal. The paramedic that had stayed with me, looked at me like I was such a fake & left the room. Later that day I spoke to a member of the stroke team & he mentioned something called 'Hemiplegic Migraine' he then said he was going to refer me to a Neurologist to which I didn't think to much into at the time & once again I was sent home, but this time on medication called Propranolol which is a beta blocker drugged used for anxiety, but also it slows down the nervous system, so for me, it worked well with my pain & still to this day does work somewhat.
Fast forward to today, June 2018, a dozen ct scans & tests later, I am still stuck having these attacks with no clue as to what they are or what has caused them. I have been given numerous diagnoses which have then changed with every doctor or consultant that I have seen. I went from having FND (Functional Neurological Disorder) in May 2016, to having Hemiplegic Migraine in January 2017, to it then not being Hemiplegic Migraine & them going back to the original diagnosis of FND (Functional Neurological Disorder in Feb 2017.
I am currently awaiting an EEG on 2nd July, which my latest neurologist has sent me for, I say latest neurologist, because I have seen 3 different ones since May 2016. it's like they do one test, & don't find anything, so they decide to pass you on, & that is basically how it has been since 2016!
Never mind the fact that I live in pain everyday of my life, I fear leaving the house because my left side has started going numb on me when I walk too far, to the point I fall over & hurt myself, & can be then stuck on the floor for up to 30 minutes until the feeling in my leg comes back. some days the pain is so bad that I can't even get out of bed. My memory completely sucks, I can't remember anything past a few days, unless it was years & years ago, which is really strange!
I remember stuff from years ago, pretty well in some cases, but then if you ask me what I had for lunch yesterday I draw a complete blank, so as you can imagine I am very nervous for this upcoming EEG, as I am already feeling like my neurologist doesn't give a toss.
At my last appointment, he was saying that 'my pain is very real' & then in the next breath, when I showed him a video of one of my attacks, he was looking at me like I am mental.
i'm so confused & frustrated. I know my attacks are probably "trauma related" after I had my 3 lots of brain surgery, but I have also lived like this for almost 3 years, which has slowly chipped away at my confidence as a person, I don't socialize much anymore & my lifestyle has completely changed. I barely leave the house unless someone is going with me, in fear of an attack. I got told that I might need to do some "CBT" - Cognitive Behavioral Therapy" so I tried to get some help in that area, I got talking to someone about possibly starting a course & then for some reason they just completely stopped replying to my emails, & so nothing came of it, & now my attitude is bit like 'what's the fucking point?' but at the same time, I am also like 'I cant cope anymore' so I have emailed them again, I am just waiting on a reply, so fingers crossed, they get back to me!
its all very confusing & I am not quite sure how to deal with all these feelings I got bottled up inside, I keep struggling with anger issues, I hold everything in & then it builds up & I explode on to the wrong people! so as you can imagine, I have lost a lot of friends because of this & because nobody seems to understand, or want to give me the time of day, everyone just gives up on me. I am not a horrible person, I have just had a lot that has happened & changed my life! I have gone from being a mum who was always out & about with her son, taking him to soft play, taking him to the park, doing exciting things with him, to then becoming the mum who had a second child, became extremely poorly afterwards, & then never really got better again! I have already been through the stage where my son has asked me "why I spend so much time in bed" which absolutely broke my heart, but now he's older & he understands, & on the days I am in bed, he comes & joins me, so does my daughter to be fair! they lie in bed with me on their tablets, whilst I rest up! they say it's because they don't want me to be lonely on my own! the only thing that I know I can be sure of these days, is that my husband & children will always be there, i'm not sure about anyone else & I have gotten to a point where I am not sure I care whether I have friends anymore either..
How sad is that?
How sad is that?
No comments:
Post a Comment