I already know that my title for this post will cause some controversy. But I draw your attention back to the opening paragraphs of my blog, and I quote:
Some of the words I have written here will hurt those who matter: and for that, I am sorry.
But I cannot lie about what I feel when I write for myself.
These words record a part of my self that I wish to remember. And so I continue to write: in the hope that in time, my words will bring me to that point where everything is forgiven.
The bold text is added here as I wish to draw your attention to the most pertinent points.
I would like to start by clarifying that I am using the word “spastic” in its original medical definition. Derived from the Greek spastikos meaning “drawing in” or “tugging”, the word means:
a. Of, relating to, characterized by, or affected with or as if with spasm
b. Characterized by hypertonic muscles (the interruption of nerve feedback loops between muscle and brain)
As proof that I have used the word correctly in describing my condition, I submit the following video for evidence.
This video is NOT suitable for children; or people who are easily distressed. If you are eating at this point, I would suggest that you finish your meal first. And place a bin at hand just in case. 😉
So there you have it. This is me. Now. And that’s what this post is about.
A couple of weeks ago, I attended an Occupational Health appointment that my employer arranged as part of the Sickness Monitoring Process. Understandable, as I have now been off work for 18 months.
The day keeps repeating in my mind because one of my ‘episodes’ started in the taxi on the way to the appointment and didn’t stop for nearly 3 hours.
This meant that I sat in my wheelchair spasming erratically; making loud noises and being totally incapable of speech; throwing limbs and suffering a lot of pain for my troubles.
At one point, my Dad (who was acting as my escort) told the Receptionist “I need help” and they sent a Nurse out to sit with us. I was so bad, that they had her sit in on my appointment in case a medical response was needed.
Because of my incoherent state, my Dad called my wife and she answered the Occupational Health Physician’s questions over the speakerphone.
Dad and I have since spoken about how freaked out he was by my condition that day – no easy admission for a man who just “deals” with sh!t. And the experience got me thinking.
I am very much my father’s child. Sh!t happens and I deal with it… through writing; through discussions with my sisters and/or my wife; or regularly, in the privacy of my thoughts and sometimes secretly, when I am by myself.
What that day made me realise is that I have taken to hiding the full impact of my illness and just how bad it makes me feel. I don’t know when this started, but it’s got a lot to do with being bored of answering “How was your day?” with a list of all the things that went wrong with my body.
It’s funny, because the people I am trying to protect are the very people who have seen me at my worst. But as this situation drags on, I am beginning to fear how the way I am now, will taint the memory of me in the minds of my loved ones.
My personal introduction now goes something like this:
“Hello, my name is ‘might war’. I experience acute muscle spasms which leave me weak with stuttering gait and forward slouching posture. These convulsions build until I collapse with movements similar to an epileptic seizure crossed with Stroke, but I retain consciousness throughout. The episodes occur daily, and significantly affect my functioning.
Friends and family have taken leave or arranged to work from (my) home to ensure that there is regularly someone around to monitor and support me.
I experience facial spasms that leave my face swollen for days at a time and cause earache in both ears; daily speech and swallowing difficulty – at times I am physically unable to speak due to locked jaws (which sometimes causes breathing difficulties) and it hurts to chew.
The muscle weakness in my legs has left me pretty much housebound as I stumble due to weakness and constant dizziness when my body is in motion; and I cannot go outdoors unaccompanied.
I also experience short-term memory problems as a result of the medication I have been prescribed; joint pain in my hands, elbows, knees and ankles; considerable reduction in my coordination; sight problems (blurred sight and double vision) and sleep disturbance.
Would you be my friend?”
I used to be hot once. I am very afraid my wife will forget me as a sexual being. We’ve talked about it and she reassures me that this is not the case, but I can’t help worrying. I mean seriously, who would look at this example and think “Mmm, want me a piece of THAT!”?
We haven’t shared a bed since November 2011. The tremors and spasms become stronger the deeper I fall into sleep; causing me to shake the bed, and inadvertently elbow, punch, kick and scratch – which is no help to the one who has to go to work the next morning. And so I took to sleeping on the sofa in the living room.
Then in the third week of December 2011, the fibromyalgia kicked in with a vengeance and due to the resultant pain, I have had to sleep sitting upright!
For 10 months, I’ve been surviving on between 2 and 5 hours sleep a night – even when I take the sleeping tablets that my GP prescribed. And that’s on the nights that I am able to sleep! Insomnia is a close, personal friend of mine and we spend a lot of time together.
I have regular vomiting episodes where I throw up 2 or 3 times a day. Wifey has to have the subtitles and volume up on the TV just to cover the sound of me emptying my stomach over a couple of hours at a time.
And sometimes, I retch so hard that I wet myself!!!!!!! And I mean properly wet myself. A towel has to be placed under me until things are calm enough for me to be moved to the bathroom for a wash and a change of clothes.
Again, not attractive. I now wear Tena Lady as a precaution: and those buggers are effective! – although it does feel like I am sitting on a throne, they’re so thick. If the mattresses in the Princess & The Pea had been made of Tena, the b!tch wouldn’t have felt a thing. And would have gotten a good night’s sleep!
And then there are the involuntary noises. Which are loud. And I mean LOUD.
I had a new neighbour move in towards the end of last year. She had been there for a couple of months before we actually met: occasioned by the wind blowing her front door shut whilst she was taking the bins out. So she knocked on my door to ask if she could come through and climb over the garden fence as her backdoor was open.
Being a kindly neighbour, I said yes. As I was guiding her through my house and out into the garden, we made our introductions and she ended by asking me “Do you have a baby?” She was very confused when I replied in the negative and it took everything in my power to keep a straight face.
Because I know the reason she asked the question is because she can hear my funny noises through the (fairly thick) walls and from her end, it sounds like a bawling babe – and I was not gonna stand there explaining that it was in fact me that she had been hearing all this time.
My speech difficulties continue on a daily basis and multiple times: so much so, that I have a backlog of voice and text messages from friends and family. It’s gotten to the stage where I answer calls and when people hear me making sounds, they know that I am at least conscious and OK (even if it does freak them out a little). And there are times when I am physically unable to form words.
Then there are the problems with standing and walking.
I regularly use crutches to move around the house; and on a very good day, I am able to walk three houses down from mine before I become physically exhausted from the effort – and that takes me 1 minute 40 seconds plus.
A little disheartening since I used to be able to walk to the top of my road in no more than 4 minutes – and that was when I was strolling! I haven’t been able to walk to the top of my road since the beginning of April.
I’ve had to buy a manual wheelchair to help me get out more often. I found that I was only leaving the house to attend appointments – meaning that I wouldn’t leave the house for two weeks or more at a time. But because there is no discernible pattern to my episodes, I cannot go outside without someone being with me.
Since January 2012, my sister has been coming to my house after work every Wednesday to take me for a stroll round the block in the wheelchair. To give you an idea of how regular my episodes occur, we have managed to do this exactly 6 times since January. That’s 6 out of a possible 43 times!
We put the headphones on me when the convulsions and involuntary noises start as the music gives me something to focus on whilst my body does its thing.
And don’t get me started on the medical side of this whole debacle.
In the past year, I have been seen by a Neurologist, Occupational Therapist, Specialist Speech & Language Therapist, Clinical Specialist Neuro Physiotherapist, Rheumatologist, Professor of Neurology, Speciality Doctor in Psychiatry, Occupational Health Physician, Speciality Doctor in Oral Medicine, Consultant in Oral Medicine, Consultant Rheumatologist and a Consultant Clinical Care & Surgery (Ophthalmology). As well as a number of A&E doctors in three different hospitals.
I’ve had blood tests, a Lumbar Puncture, mouth examinations and saliva tests, CT Scans, urine tests, EEG Telemetry, lip biopsy, physical examinations, flicker tape, orange dye and blue dye eye examinations, numerous assessments and been injected with medicines whose names I can’t even pronounce, let alone spell.
I have been prescribed 13 new medications – 11 of which I am still on. These have combined to make my days a study in interesting contradictions.
The three main medications cause nausea and two of them cause vomiting: resulting in me usually having breakfast sometime between 2pm and 6pm as my stomach is unsettled for most of the day. There are weeks where I vomit at least twice a day, every day; which slows down until I’m only vomiting every other day. Basically, I’m feeling hungry all the time because I cannot retain the small amounts of food I am eating, but am not losing weight as I am not mobile enough. The medications also cause problems with my sight (blurred vision, increased REM and double vision) as well as dizziness – which occurs daily and lasts for most of the day.
Then there was the woeful experience of discovering that my body was intolerant to the Trihexyphenidyl given to treat my smaller tremors. The Neurologist was surprised that my body did not become stationary after several weeks as it’s usually used to treat the symptoms of Parkinson’s disease and should have eradicated the tremors (Yea me, for not abiding by the rules!).
On top of this, it caused urinary problems by making me want to pee more often but due to two of my other medications being muscles relaxants, my sphincter muscles do not function properly. Therefore I regularly find myself spending up to twenty minutes trying to pee and being unable to – despite the pain of a full bladder.
I have tried breathing exercises and contorted body positions, but 70% of the time, it comes down to just pushing and straining and then dealing with the resultant pain. As my body is in pain for most of the day, I just add this lot to the list. Though to be honest, I would love a day when my body is not. in. pain!
And that brings us up to date. I am taking things one day at a time; am grateful for days when my speech is clear enough for me to be understood by others and am using music to help keep my sanity.
I’ve dug up albums I haven’t played in a while and been reminiscing about where I was in my life at the time I bought them :-). I’d forgotten how delicious Maxwell is; Alanis Morissette’s “Jagged Little Pill” still smacks it; and Eddie Vedder’s voice still makes me go “YuMMY!”.
My main frustration is in not being able to do things when I need to do them and having to depend so much on others … and oh yes, the increase in short-term memory problems.
The good news is that I don’t have a tumour, bleed on the brain or a terminal disease. The bad news is that there is no easy fix for what I have and that this situation could continue indefinitely.
So there you have it. A complete introduction to this site’s resident spastic.
Again, I know that people are probably going to say that I shouldn’t use that word in describing myself, but that’s how I FEEL.
I feel drawn in and as though my body is being tugged into postures that are unnatural and certainly uncomfortable. I feel distorted.
And that’s it. I just wanted to take this opportunity to publicly admit that I am starting to really struggle with this sh!t. To honestly answer those “How are you?”/“How are you doing?” questions that well-wishers ask.
I’m really sorry for lying to/hiding from you guys. I know you care for me and that’s why you ask. So in the interest of honesty and full disclosure, let’s try our conversation(s) over again shall we?
You ask: “How are you?”/“How are you doing?”
And my truthful answer runs something like this:
“I miss my body. I miss her playfulness and her agility. I miss her expressiveness and sensitivity. I miss the way we danced together: the way we could take the beat and articulate everything we were feeling and thinking. I miss the sheer pleasure of movement: of exploring all the shapes that my body could cast.
I hate the way my illness covers my loved ones in ineptitude. It hurts to look in my parents’ eyes and see the shame and distress they feel at not being able to protect me from this: at not being able to do anything to make it better for me.
I fear being forgotten as a sister; as a daughter; as a friend and as a lover. Particularly being a lover. I really, really enjoyed my role as a lover: I surprised myself and the art of intimacy was a truly meritorious lesson to learn.
I fear that the current me, will cloud the me-that-was from the memories of loved ones: that I will just become the thing that needs to be cared for.
And I am tired. I am tired of the pain and the weakness: tired of fighting my physical form just to perform the simplest, commonplace tasks. I am fed up of the daily struggle to function; and of being so sensorially deprived that I am even unable to pleasure myself with my own touch!”
It’s a bit of a conversation stopper, right? But I just want to get it out there: because Sweet Baby Jesus, I’m feeling tested!
- Sick ‘n’ Tired (An exploration of anger as a healing process)
- Vomit … and sh!t
- A Person, A Place, A Thing
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AUTHOR: I am might war. I have a love of music, the written word, travel, Anime, polar bears, people and “sticking and colouring”.