So today it hit me that I am in a fight for my life… “I am busy fighting to maintain that “who person that I am” whilst maintaining my mind and its ability to learn and maintain
information” I would struggle to lose the who and the what parts of the very person that I am… what would I do without my thoughts and my mind processing and working abilities?? I would hate to think… my god I think that I would be better off being lost to this world than I would be if I had to live in this world with a diminished reality of whom it is that I am.
I think that we all have the same thoughts that I have just had… & just like me it isn’t that these thoughts stick around to burden me everyday, they come and go just like night and day… I think that it is quite normal to start questioning ones self and ones own sanity when it is that they find themselves in the position where their health is not 100%…
For me personally… I don’t feel sick or ill, and I most definitely don’t feel lost or even depressed… I think that I am simply having one of those reflective days where I found myself wondering who and what I would become if my own mental minds capacity were to run away with the pixie’s and take up residence in a locked prism deep within me.
On many occasions when I do actually go for a doctors visit; he has an almost definitely spoiled story would ask me “if I was stressed out, finding things were getting me down, if I was having moments of self loathing or down trodden days or if I was simply taking on too much in and throughout my days”. I can’t help but tear down the generic look on his face and laugh at what I see as a silly lot of questions… I mean I know that he has a job to do and that part of his job is to gauge the welfare of his patients… but truly doc…. I do always tell him “that I don’t come to the doctor because I am feeling like a hundred bucks… that no one in most instances would go to see the doctor because they were feeling great…. I laugh and say I rarely come as it is….” he does his best to not me see his generically motioned facial expressions and always finds an oompa loompa dance to mimic my funky walk… some day he may walk like me… but kudos for his trying lol.
I try hard to lighten how it is that I am feeling by saying to him in my just as generic voice… “who wouldn’t be feeling the “race manoeuvres” of day-to-day life?
So what’s going on with me that prompted today daily write..?
As of late my daily pain tolerance levels and headachy moments have been happening on a very regular basis, have just come off a 14 day stint of constant pain and migrained day and nights.. I am telling you that I am not feeling anything else but a deflation in my energy reserves and my general persona and attitudes to say the least have me feeling pretty low… there have been far to many of these migrained and energy sucking days to count & far to many in a row to see anything positive from having these beat down days happen.
I am not bullshitting to myself and I am certainly not bullshitting any other person who
find a sense of curiosity in what has been happening to me and in my PPMS dilly dalling world… some days I find that people leave me alone, that they would rather be distant because they have little understanding of what is happening and don’t want to pry or look ignorant in their questioning… but then there are days when I am over ridden by people questions, moments where they become curious to what is actually happening… or may be they become active questioners of mine because they can feel my distance or reluctance to hold a one-sided conversation where it seems that I am holding a question and answer time or a mini lecture on my PPMS symptoms and my life’s daily journey. I do what any of these people would do or say, how would they hold their facial expressions and eye contact, if these people in these moments of un-thought-out question time would actually feel burned and scorned by the harshness of my answers to their questions that want me to spend time in answering.
How would these people feel if I was to give an 100% pointed answer to their questions… no made up fluff chucked in order to lessen the burdened blows of their answered questions… but I never or rarely do answer with a 100% connected and true answer… I always ask questions like ” how much do you truly want to know..? are you ready for the answers to the questions that you seek..? do you have time to listen to what it is that I am saying ?.. are you actually going to hear me without interruption, without prejudice and without judgement?… It never shocks me anymore to see the squirming discomfort on the faces of people of people who are nodding yes and are saying “of course I have time… & of course I will listen.. I am hearing you they say as they shuffle in their seats.
I try so hard not be intolerant of the expressions and the squirming of those around me “conversation closed” I often say as I choose to lessen their discomfort and kindly move on to a conversation that doesn’t bring on awkward moments of silence… moving on to conversations that usually revolve around their intended visit and or no real substance conversations.
I do often find myself wondering where it is that fit in to those people around me and when the conversations of those around me find my audience… sometimes I cant help but wonder when things became so awkward… has it always been this way ? or is it my PPMS that has brought out the awkward moments and silences that often come and are associated with my time with others ? I do feel that some people just have nothing to say and feel guilty for not having anything to say, an excuse that they use to hide their discomfort or uneasiness in finding my PPMS a confronting and in your face moment of seeing that my PPMS has in some way changed the person that I have always been, the remarkable thing that has metamorphosed me into anything other than the person that I am.. the me rather than the PPMS version of me that they now see.
I do feel that 9 out of 10 times (maybe a light inflation of how any times I actually think and
feel these times happen)… never-the-less; I often feel disconnected or misrepresented or
even unheard in conversations where people find themselves in a time & space where there are no words truly spoken to me & when there is no room within a conversation for
listening… I have given up trying to express how it is that I think and feel in moments when these disconnections actually arise… my eye rolling moments still exist at times… I am not completely expressionless when I am shut down, shut out of even disconnected from a conversation… I have somehow learned to keep silent in my “here we go again” moments.
Back in 2014, the very year that my PPMS actually started to show its untimely moments of funkiness to the world and to those I knew… I was very aware that there was indeed something wrong, I did have an awareness that things were not right.. I cant describe the feelings and thoughts that I was having.. I just remember saying to myself that I dint recognise myself in my thoughts or in my funky walk. I put on a persona that had me looking and acting normal (if normal was who I once was … I do often wonder what sticky description am I & do I play in my today’s journey) but as per usual I was able to push through my down … allowing me to see the sunshine in my dawning tomorrow’s.
Not everything was or is as it seems… there was a many a years where I was able to push through the tough days & the varying levels of exhaustion, I don’t like to think of this time as me being ignorant or even as days where I was able to bluff my way through the days of the onset of my concerns… then there was imposed questions asked of me that made me questions whether others were actually seeing what I was already aware of… I remember thinking “oh my gosh… I’m not going crazy – I am not imagining things… there is something wrong with me & I am not the only one who can see it…. but there were long periods of time & many days in between bouts of not feeling quite right within myself… I was able to find some sense of reconnection and normality with my bodies happenings when it became apparent that what was happening wasn’t all in my imagination.
I do often wonder how other were able to pass over what I and them were seeing… how were they able to ignore what was going on? why did they say very little? all the questions leading from are you not feeling ok, never went any further into what was actually happening to me… I did have many moments where I thought I was going insane…. I couldn’t grasp how I could be the only one who truly cared about or could see that what was going on with me.. it was obvious to me that something was wrong… I knew that others were questioning me… but they just put it down to being generally unwell… or like every other ignorant excuse that had to just have a reason for what was going on there always seemed to be a weight reason or a need for me to live a life where I was a little less stressed or even a little less busy and preoccupied by my studies or my many hobby’s. I did wonder if anyone could truly see me and or that my outward self was changing.
“I often thought that I was going crazy, thoughts overwhelmed me as I thought that I was making myself sick or giving myself the torment’s that my body was enduring & of course moments like this were met with worded speeches like if you are unwell go see the doctor, take a pill & have a nap – you will feel better tomorrow… I have spent many hours feeling and hearing my own questioning self asking me if I starting to become loony.. well maybe in hindsight I was… maybe I did have a hand in making myself feel this way.. after all how was I to know that what laid deep within me was the reason for the years that even I didn’t understand what was going on within myself, my body & my mind… all I could hear my questioning self and the how much of a toll things were taking on me and my burdened heart.There was a small part of me that talked above my questioning self, this part of me knew that I wasn’t going crazy.. some how this part of me kept me from cracking under the weight of my own self’s pressure…. my body too knew to well that there was something not right… it was my mind, my thoughts and my very deep thinking’s that had to play catch up with what was going on.
I can hear myself tapping away, thinking loudly in my head and talking myself through this very daily post… “even I am asking myself am I depressed, am I sleep deprived”… mmm those generic questions again… see even I ask them to myself… there is a small part of me that questions myself and the workings and going on’s of my body…. crazy bloody talk I say because the evidence is right in front of me… my body is its own evidence.. the pain, the funky shuffled walk, my hair falling out, the constant and life altering fatigue… all evidence of what is happening… & here I am questioning myself and the happening of my PPMS diagnosis… the energy that it takes to appear normal and undefeated by my PPMS is so bloody exhausting… it is no wonder that I was given into the burden of feeling me holding onto “the normal me” and let go in my own awareness… I am still bluffing my own normality from time to time… and I find that this normally that I fake is person dependant …. for some people see the rawness of my PPMS and others see the “I’m Doen Ok Me”…. sometimes in the midst of the watching eyes of other people’s questioning it is easy to ignore my PPMS and fake a controlled walk.. for I have found that people can be very hurtful in their questioning (unbeknown to them) they ask question like will exercise or weight loss help… ? did you get MS from being on your computer all the time ? why don’t you rest or take a pill… ? and then there is the classic and most heard “oh I am so glad that it is you that has Ms and not me… I had the flu last week… that was bad enough.”
I want it to be said here that I am not depressed and I am certainly not going crazy, a pill wont fix me and I am certainly not faking what is happening with me … PPMS and I are now life partners… amusement parks in the ways that we walk… my PPMS story is my journey and his name is “My Story” – I do get very frustrated with the happenings of my body… & and do indeed see some days and the events of the bad days as an endless list of chores and I have to get it done’s… the stop starts to my daily journey at times has to take a back door to my fatigue levels – the very thing that see’s me need to take time out of my day for a nap… ” a lazy moment no!!! ” – without these down time moments I feel, and I know to well that I would be even worse than I am on a bad day… a possible scenario would be that I would find myself collapsed and in the hospital if I was to ignore these down moments.
I have become aware… oh so very ware of how frustrated I have become with my PPMS, my fatigue levels, my funky walk and the many other symptoms that I and my highly decorated PPMS body & mind … they ar my daily reminders… the reminders that now happen each
and every day without even so much as a day’s break… there is no such thing as a PPMS, fatigue & funky walk free day… PPMS has taken many years to rear its existence in my
body… it is here to stay… embrace it or suffer the consequences of day long pain and suffering are my daily choices… I so many years ago used to love to find myself lost in my hustle and bustle of busy work, studying and hobby riddled life… PPMS now reminds me of the breaks that I should give to myself… whilst my work load and hobby lists have changed some.. I am still the me that I was yesterday… I have the same interests and the same wants… I just now have a frustrating life altering shadowing walking through life with me.
Here is my long thought-out thoughts for the day… my daily write… my take on my PPMS and my struggles that I Have with it… but it also shows how I embrace it and except that “My Story & PPMS” is now how I roll but that it hasn’t changed that me that yesterday. This is my personal story, my journey… this is the no bullshit side of me.
Author. Tanya Kelly