Welcome To The Story Of “My Story” & Me – My Primary Progressive Multiple Sclerosis Diagnosis, Symptoms & Daily Happenings Part Of My 365daysomethings Blog.
“My Story” is my Primary Progressive Ms Companion – Ms For short. Ms came some years back and has no thought on ever leaving.
I gave “My Story” an identity just a few years back… hoping that it would put some humour into my Ms diagnosis; after all he is stuck fast in altering my abilities and my job is to keep him on his toes. “My Story” is apart of me, but he has mot changed who I am. “My Story” is has a male gendered role… for what reason I don’t no – he just took on a male persona many moons ago, no reason & just because. As time gone by… “My Story” & I have learnt to co-exist… and if you don’t mind me saying “I put far greater effort into co-existing with him then he does with me” but when all is said and done co-exist we must.
Giving him an identity puts the humour into my Ms diagnosis. He is after all stuck altering my abilities and my job is to keep him on his toes. “My Story” is apart of me, but he has mot changed who I am.
Keeping myself busy & in touch with my normal daily schedule has always been important to me, I couldn’t live without my ability to write, be creative, use my computer or even attend to my life day to day loves and likes. The only way forward for me was to keep myself on the positive side of my MS diagnosis and push forward in the journey of my slightly altered life.
Letting “My Story” have free range over my life, my moods, my emotions and my abilities/inabilities would have driven me to become a very lost and a very sheltered version of myself… Ms may not be an illness that comes with a death notice, but for me and my very active and creative mind I would most certainly have gone mad if I allowed “My Story” to reek havoc on my life and my creative self.
“My Story” has many moments to when he wants attention or feels unattended He plays with my feelings; Not the hurt me feelings, but the ones that numb my ability to feel and touch; often rewarding me with a bath from an ice-cold glass of water.
There are many other occasions that he has made himself known to me…. like I said I call him “My Story” to add humour to days where he seemingly spends the whole day kicking my ass, putting me through a gauntlet, an obstacle course or a test to see what the threshold of one person could simply endure.
There are days when I have a one man band pounding loudly and out of beat in my head, I have also had days when my left leg has struggled to lift it’s self, dragging along the carpeted floor; as though it was trying to find a way to set fire to my left foot. Then there are times when I feel absolutely celebrated when I find myself face planting it straight into my soapy snail strip that was placed on the shower screen by my hand that was clearly working to save me from any slip and slide motion to the showers floor.
Hitting myself in the head with my hair brush… or heated brush can sometimes end with a slap or a small heat burn as I miss cue the distance to the part of my hair that I am brushing. I have taught myself to brush my hair with my other hand but not only is it not skilled in brushing and or tying up my hair… it just doesn’t cut getting my hair dried brushed and done.
My funky walk that lands me into walls and door knobs without warning & my sliding door wardrobe too loves to get in on the action when I lean on it for support and it launches me heading to the floor… (last laughs on that damned funny wardrobe as I haven’t YET hit the floor. I have skills you know !! and not all of them show my lack of flexibility and some mornings there is very little effort needed on my part to pull any of them off).
Sometimes I feel that “My Story & I are celebrating the 12 days of Christmas… but instead of the three french hens and two turtle doves I get a sore foot, a sore leg, a sore back and a rolling thundering head… & due to the lack of sleep – all day eyes popping out of my head.
In July 2015, I finally told the people that were not in my immediate circle what was going on with me and my body, here is what I wrote.
My Ms Diagnosis Message – July 2015
With many questions in my heart I write to tell you my news. For some years now, I have been struggling with what I have been told is a trapped nerve in my back. My Family and I went away in April and whilst we were away I collapsed at a golf course on the way back from the beach, this we thought was caused from travelling in the car for 2-3 hours.
Upon our return home; my pains and symptoms did not change in fact they worsened, I was already walking with a funky groove (left leg only) but a few days later I couldn’t feel my right leg. To the doctor we went, as we have seen the doctor for these reasons before he was concerned that pain and anti-inflammatory meds were not helping, he sent us to see a neurologist; a full spinal scan and brain scan later, and it has been confirmed that Ms is the cause of my funky walk and of course the reason for my collapsing at Easter.
I at this point do not know the total degree of my MS, but we know it is present in my
spinal cord, and most possibly in my brain. My neurologist says that Ms may have been present for many years and that I might have just of learnt to deal with it and the symptoms.
Let me says this; Ms for me isn’t a life sentence it’s a reason for why I walk funky… We will adapt and push on with hope that someday there will be a cure for those who walk the path of Ms.
Since Being Diagnosed With Primary Progressive Multiple Sclerosis, my doctors have put me on a prescribed medication called Gilenya. Gilenya acts on certain types of white
blood cells called lymphocytes. In multiple sclerosis, these small lymphocyte cells play a role in destroying myelin, the protective sheath that surrounds the nerve fibres
and helps with the efficient flow of nerve signals or messages to and from the brain and various parts of the body. Gilenya helps prevent lymphocytes leaving the lymph nodes.
This lowers the number of Lymphocytes circulating in the blood and reaching the central nervous system, which in turn reduces damage to the nerve cells in the brain and
spinal cord. (Reference- http://www.ms.org.au/attachments/documents/treatments/treatments-gilenya.aspx).
For me Gilenya does little, its prescribed & taken with hopes that it may in some little way help to slow the severity of my primary progressive MS… until I have my
next MRI no one knows if it has made any improvement, maybe there may be an option to try another drug that will help with the symptoms and issues that I have.
My Neurologist – (Who I Will Not Name) I lost faith in my Neurologist on my first visit, but I did give him the benefit of the doubt and went back to see him 2 more times –
my first opinion of him hasn’t changed… I feel that the last thing that I need from a specialist/neurologist is to have him meddling in my thoughts and distrusting the things that I tell him.
I want him to know that I am a self-driven person…my very own harshest critic… I know where my faults are and I know that I am not perfect but the last thing that I need is a character assassination. Does he know how he alters who it is that I am with every negative word that he screws into my head?
Since my last visit to my neurologist I have decided (and much to my GP’s annoyance) not to return to his office for a follow up appointment … With every visit to this neurologist I lose faith in his treatments… and I certainly feel that he sees me as a pay check to a new extension on his home… he is always
negative, and very rude… asking questions and shutting me down before the answer is even given… sprouting such things as “that is not what I was asking” and “how do you
expect me to help you if you yourself cannot be honest about your symptoms and medical history.”
Well… On my first visit and without touching me he took my medical history. I told my Neurologist that I had a baby in 1997 breach birth bum, knees, legs first under normal birthing conditions. My first born within days started to have toileting issues and began to act as though he had severe reflux (a common diagnosis for an unsettled baby). We were told that our son had been born with some signs of Spina Bifida, but his diagnosis never truly fitted into any overall diagnosis. Our child was born with an inward dimple that we learned that it stopped .4 of a millimetre from his spine… so that helped in ruling out the Spina Bifida diagnosis for many years.
Many hospital visits later; often 3-4 times a week – there were many more doctors telling us theories and thoughts that varied from a severely unsettled child, reflux,
gasto bugs, severe bowel issue to even one doctor saying that it could possibly be a case of mum having Munchausen Syndrome By Proxy.
(Munchausen Syndrome By Proxy is a mental illness and a form of child abuse. The caretaker of a child, most often a mother, either makes up fake symptoms or causes
real symptoms to make it look like the child is sick. (Reference – https://medlineplus.gov/ency/article/001555.htm ).
Over the years; anything but an answer was handed to us like a congratulation here is your answer/diagnosis on a platter so after many expository surgeries and tests our son
was in 2006 diagnosed with Spina Bifida by a doctor who went out on a limb to say, “if I can’t tell you what is wrong no one can.” Without naming this doctor who we
affectionately refer to as Mr Burns he re-ran all the tests that he could muster up and found a bony spur that was growing along my son’s spinal column that was at some point near of far into his future years was going to sever his spinal column.
Our Son was in the hospital for a period of two weeks diagnosed with – tethered cord, split cord malformation as well as a handful of other goodies (summarising him into the
diagnosis of Diastematomyelia.
(Reference – http://en.m.wikipedia.org/wiki/Diastematomyelia).
Furthermore in 2000 – 2001 had 63+ gallstones – I delivered my 2nd son under a gallbladder attack, and meds that would help bring on my labour. I gave birth to my 2nd son 6 weeks premature in the April of 2001. He was born underweight but after being told he may not live due to his size and a possible lung or brain condition was born healthy; only requiring 4 days in the NICU to sort out his breathing & feeding.
With continuing gallbladder attacks over the 5 months since my son was born my gallbladder removed September 2001, I told my neurologist that since then I had been having reoccurring abscesses on my incision lines 6 – 7 times over a 3-year period.
In 2006 we welcomed our 3rd child completely healthy and without any of the issues that her brothers had. My neurologist then interrupted and said “ MMM MM if you could
just be honest about you medical history – we may be able to get somewhere…. What part would you like me to tell the truth about? I said.”
We went on through the 2nd scheduled appointment with him saying that I was in some likely hood having other issues like a trapped nerve in my back (no shit I told him… haven’t I been telling you this all along…). He was of course spot on in his ignorance as I was suffering a lot of numbness in feet, and lots of pain in back and kidney areas, arms and head.
If that is all he would have said I would have been happy and contented, but nope…. he told me that I was more than likely mimicking my son’s illness and his inabilities … I laughed telling him that he doesn’t walk with a limp or “ FUNKY “ walk …. So, he went on to say mri, spinal tap, and then come back – on which he said would you fit in an MRI machine…. Staring back at him I couldn’t help but ask him “are you always this bloody rude???”
You could do with losing weight (mmm like yah man who couldn’t) …. He wasn’t finished he went on to ask about my gallbladder specialist…. upon telling him who my
specialist was he stated that “ooh he was a huge man – who now has lost to much weight and looks like death – oh I thought I was special having him picking at my many
outward features, as well as my balance and made up mimicking issues, I replied to him by saying so its fat people, in general, you have an issue with… proud moment right
there in your medical career I said to him… like I said I, we probably have a personality conflict – I must have taken his words and thoughts personally (took them to heart
rather than taking them with a grain of salt).
On the 3rd visit we were planning a visit to Tasmania – through the starlight foundation for my son… I was there to get my results of my MRI and a letter that said I could fly to
Tasmania…The airport asked for the doctor to answer if I needed a wheel chair as they preferred I would use one for safety and ease of mobility to gate as well as boarding and
disembarking in Tasmania…. His usual chippie self said you won’t need a wheel chair for some time… years in-fact (hobbling along behind him ping ponging off the wall
with my “ FUNKY “ walk cheering me on I said yah ok)… we then began our appointment… and he brings out comes the MRI results…“ no need for a spinal tap he mumbles… oh shit… you have MS in 3 places… (well done idiot you can read … I mumbled…)….likely to be primary progressive MS…”You will need an infusion (steroid) taken over 3 days (6hrs a day – outpatient) of Gilenya he says… and you are right to fly … what for it guys… & maybe you should use that wheelchair….
His last comment that he made was a little more sultry “you’re not surprised about your diagnosis, are you?… I said no… he said it’s rare that someone goes straight to primary progressive MS ((wouldn’t be me if I didn’t go the whole hog)) I told him I am not surprised that I have primary progressive MS, that I have struggled for a long time with my loss of feeling, painful limbs, headaches, sore back, and kidneys and my forever faithful “ FUNKY “ walk.
I honestly think that he and I have a personality conflict… he thinks he is right and whilst I normally sport a thick hide and able to take criticism… my MS has me exhausted
and altered daily dose of pain endurance, his criticisms at times leave me feeling self-conscious and very overwhelmed.… I kind of knew it was Ms… already telling my GP my suspicions, but primary progressives wasn’t my expectation… maybe secondary progressive Ms but not primary progressive.
Fast Forward To 2017
We have been, gone and come back from Tasmania, met with a few (not all) of our friends & their families in Tasmania, connected with our Friends who have two daughters Aimee & Demi. Aimee has another spinal cord diagnosis Sacral Agenesis, Aimee’s Mom Yvette, and I connected through a magazine article and always spoke of the day that our children would come together and answer the questions misunderstood by others.
Yvette, Demi & Dad Brett are great supports of Aimee’s life and the struggle that she has come through. For Aimee, she feels complete knowing that she isn’t alone in her
struggles and that although her Sacral Agenesis & my Son Sean’s Spina Bifida are very different, that they share in many similarities.
As this is my Diagnosis of Primary Progressive post I will at a later date go into Aimee and her SA story – they have a Facebook page that has members not only Australia wide,
but also worldwide – https://www.facebook.com/groups/238931702817125 – Australia – https://www.facebook.com/groups/iSACRA – International.
I know have my own wheelchair … and I am not very fond of it, I tried hard to find it a deserving name… and find peace with it; when I have to on the odd occasion use it.
So that wheelchair… I not so affectionately call it “ FUCKER” it is horrible heavy load at times… bruising my leg… but I think it just pisses me off because when I’m in it, it alters the way people look at me and I have to remind people that I am neither deaf or stupid so please talk at a normal pace and level…. as I am not deaf dumb or even slightly stupid.
My Neurologist is a specialist who I do not doubt is good at what he does, and most probably my dislike for him is more than likely a personality conflict but he is a doctor that I am not willing to see again, in fact, I haven’t seen him since my diagnosis, my GP isn’t at all surprised but wishes that I would decide on my next character assassinator
(neurologist) sooner rather than later.
I have tried one other neurologist and I am starting to wonder if being a specialist takes away their humanity and compassion. This neurologist charges $270 a visit… and sends me 40-50 minutes away for any other tests that he orders, complaining that his tests will be more in-depth and that he has more faith that the results will be done properly this time… This neurologist has kicked my wheelchair that I usually push rather sit in… as I do try to walk when and where I can… his secretary has the same bedside manner making appointments without patient input … usually stating that “ for someone who is here and looking to be fixed or made better… I can’t be choosy or picky when it comes to appointments that they are trying to help me with…” HELLO IDIOT I TELL HER MS CAN’T BE CURED..
He to disbelieves any Diagnosis and has changed his mind from Primary Progressive Ms to Secondary Remittent Ms and back again… so on the paperwork I have seen both Diagnoses and received any many more personal criticisms about my medical history and my Ms Symptoms… Truly it’s all so bloody exhausting…
So right now, at this moment of March 2018… I am very overwhelmed and mentally exhausted… Yah yah I need to see a doctor… I need a new specialist, but I am truly
unsure if I can see myself through another personal attack… My Ms has altered me enough without the need for the words of others to be singing loudly in my head. I tell my doctor that I am humpty dumpty and may never fall of the wall but that I wont need to because after my run of doctors I am not sure that I care to be fixed again.
I have become very introverted and very closed off to the outside world… even the people closest to me see me when they make their way to invading my space… it is
rare now that I go out of my way to make myself seen in our community or even in gatherings… My MS is doing its bit right now to lessen my tolerance of others… I am
short-fused at the hand of other people’s opinions… and repetitive behaviours are doing my head in… People cannot get how truly exhausting the fatigue level is and can get.
A simple shower can take me hours to recover from… standing to do the dishes (piled high from no one wanting to do them till long after the weekends visiting hours), dish pigging duties can leave me limping and pained for hours to days at a go… I like to do our dishes by hand… and even if I had a dishwasher I am sure that my husband and I would have to endure the load.
I know that my Ms symptoms have taken on a different persona… simple tasks like shaving my legs or putting on my shoes can take me two to three time longer than usual.
Here it is the end of 2018 and I cannot remember the last time that I had a great day… a day without pain meds… or even a day without a new bruise… my wardrobe gets
friendly with Me and likes to get in my face… door handles are my favourite they are like magnets to my arms and head.. lets not talk about the shower ritual that leaves me physically ill…. a day in the life of “My Story & Me” that’s its bloody name.
I have come full circle with my Ms diagnosis… I don’t hide behind it … and work hard at maintaining my life and the things/people that I want in it… I own my shit and under very difficult life-altering circumstances I get up every day to do what needs to be done… and whilst some days are harder than others to muster up the energy to meet the daily grind… I drag my ass out of bed at 7 am most days; where I keep myself either physically busy…(chores or things around the house), or mentally busy (writing, blogging, designing… tutoring or fixing a computer)… I try with all my might to keep my daily workload and a rate and level that works with my daily fatigue levels.
I have said the following before in a previous submission… I am not wanting an end to things, and I am not wanting to just piss off to nowhere But feel that at this moment…
I will do anything at this moment for just a little inner peace… including a disappearing act that will leave people out to wonder why I have taken up this extreme measure…
well I will say this… I am so very exhausted and struggling to see why
someone else cannot just serve a momentary slice of peace.
Some Of My Daily Symptoms
– I am struggling and struggling hard, things in my head are loud and my mind is frustrated… things get very loud at times
– I’m suffering from light and sound deprivation issues
– food doesn’t always stay down or in my system
– My skin is itchy and sometimes dry- arms and legs mainly
– My leg foot us dragging and killing me
– My hair is s becoming tediously hard to keep done. It is falling out; sometimes in clumps and at other times the drain of the shower is covered and or blocked by the amount of hair laying in it… I need to clean my brush twice daily, every day. (I have cut my hair far shorter than even I would have dared to have it go).
– Sore left arm… often lumpy and aching, my right arm is the workhorse and keeps up with my daily chores.
– Left leg aches and is heavy to lift off the ground, putting on pants, socks, shoes is tedious and hard some days.
– My left foot is doing its own thing most of the time… matrixing me often into things
– Migraine headaches last 2-4 days at a go
– My pain is often, always felt in other locations throughout my body i.e. my arm could hurt but I often feel the pain in my kidney area also.
– I have little interest in food but make myself eat at least once daily
– Debilitating arms, neck, and shoulder pain in right arm some days
– Period time is extreme most months… very heavy blood loss… changing 4-5 times daily with either a double or triple maternity pad needed on most changes… blood is always very red and heavy… period pain leaves me dizzy and feeling weak. I can feel my period coming up to a week prior… its always on time (21day cycle)… to much information? ….hehe I am just being honest
– The urgency for toileting is getting worse (more so at period time).
– Hot & cold issues… at times I can be so cold I have been known to wear a jumper when others are hot… I can sometimes be both hot and cold all in one instance.
– Showering is an ass-kicking chore that I don’t look forward to either in the doing or in the aftermath. Often my calf muscles are locked light for days.
– Sometimes it can take me an hour to shower especially when I need to wash my hair & when I am done I become physically i’ll and have even fallen to the floor.
– My Ms symptoms have escalated, and my meds have little to no effect or have stopped working all together.
– My fatigue is pushing my frustrations and attitudes to the breaking point
– My thoughts are not in order… Slightly manic and even all over the place… I don’t truly care… My thoughts are unapologetic. My Ms isn’t the fire in my words “the lack
of family togetherness and lack of support is” – I have always been there for other and have always helped in and where I am… “why do I find myself so alone?” I keep my thoughts and thinking’s under controlled by writing daily…. keeping up with my work load and making myself overly busy.
– I at times need extra pain meds and have noticed that my meds have very little response to my pain levels that just take the sting out of the day.
There maybe be more less that I could have said here… but it now done and said…. “My Story” my mental competitor you haven’t taken me from myself, I am holding on and awake to you… there is much that I can endure… one thing for sure my asshole friend “you haven’t seen the last of me !!”
I will get a daily journal going here soon to keep you all informed in my friend “My Story’s” daily progress..
Mostly if you get to this ending of this very long Ms write… I want you to know this…. I am and will forever be who it is that I am .. Ms hasn’t changed me… I am just more fatigued than a sluggish snail laying in the sun….
Author. Tanya Kelly
Copyrighted By Tanya Kelly. 2018