Saturday, 11 November 2017

The ferocious pain and shining light.

I hesitated to write this, as pain, from the definition of it to the management of it, is idiosyncratic. Rather than draw hard and fast lines, I prefer to draw attention to chronic pain and offer my own personal experiences. I will revisit this topic periodically.
Pain, specifically chronic pain, is at best disruptive and at worst all-encompassing. MS-related pain varies in both location and intensity, and its omnipresence profoundly affects us physically and psychologically. If we are to sojourn alongside chronic MS-related pain, it certainly demands not only our attention but also proper management.
I live each moment with pain — from the time I wake until I eventually find sleep, I hurt. I say this not to invoke pity but to give you a glimpse into my world. I have worked incredibly hard at learning to co-exist with constant pain, and that learning is a continuum.
Pain management literally has been a lifesaver, as I would never have learned the accountability necessary to utilize any management skills. Given the myriad of modalities that may include medications, it is vital that you learn how to use these medications with the respect they command. Keeping track of your emotional and physical mindset is imperative, as pain — and medications given for pain — greatly affect both.
Embracing non-medicinal modalities is just as important, as meditation, physical therapy, acupuncture, prayer, guided imagery, and cognitive therapy can provide marked relief. My doctor gave me the ability to thrive knowing that pain is but an aspect of an otherwise abundant life. This intrinsic knowledge helps me through the days I cannot thrive and do not feel that life is so abundant. Those days are extremely difficult.
I awake early, anywhere from 2 to 4 a.m., and upon wakefulness, I am greeted with pain and numbness. More specifically, and indicative of progressive MS, a deep, searing pain is in both thighs. I have always described this as bone pain, as its depth and debilitation are inexplicable. Also, my extremities on my right side, and sometimes on my left, are painfully numb. This is ironic, as one would think numbness is devoid of pain. One would be mistaken. Musculoskeletal pain varies in severity but is always with me, due to weakening tendons. I experience pain and longer healing times with otherwise normal injuries.
What do we do faced with such pain?
We fight. We hope. We cry. We wish. We pray. We reconcile. We learn. We grow. We survive. We thrive. We live. We process pain day to day, sometimes minute to minute, and we do the best we can with what we are given.
One of the most discouraging aspects of living with pain is feeling misunderstood, unheard, or disregarded. Oftentimes, medications and non-medicinal modalities fall short of eliminating much of our pain, and that can leave us grieving. We grieve for the person we once were, the things we once did, and the quality of life we once had.
But we have a choice: We can choose to suffer or we can choose to hope. I understand it may not feel like much of a choice, but it is yours to make. Hope is not mutually exclusive from pain, tears, or difficulties; it is a focal point in which to hold so that even on your worst days you see that beacon shine.
Chronic pain is beguiling and can bring the strongest to their knees. I have the scars to prove it. That said, I fight. I fight not because I am so strong but because the alternative is simply not viable. I fight to enjoy whatever quality of life I have at any given moment, as I have learned that things can and do change at a moment’s notice. I fight to maintain my integrity and sense of self while navigating my life with progressive MS.
Most of all, I fight to maintain eye contact with that beacon of hope. While there are times that I lose sight, I am illuminated by the glow and continue to fight.

Tuesday, 7 November 2017

Disconnected mentally, physically and....... not emotionally.

Fuck, Fuck, Fuck, Fuck, FUUUUCK.........
Awake at 3 am .......... standing looking up at the stars and asking for guidance.

“DAD”, what would you do ????
“MUM”, What would you say to them.

I actually almost hear their answers and debate.
Well dad, it’s like this.... the type of demyelination I have is genetic. It’s in our genes and I’m hoping like hell my kids and grandchildren are not effected or technology will save them.

Mums answer was “ what a load of shit. What would they bloody know? Go into denial...”

Dad Just goes along with it all but I can tell he’s thinking....

My visit to the Neurologist today was a bit surreal.  It was a whack of doctors gently actually telling me. Not sending me off and still having questions. Ultimately, this is what we’ve been waiting for, all the tests and barraged appointments came together in this two hour visit. I’m actually numb.
I’m actually starting to have spacticity seizure. Be right baaaack....

I’m back. Off the above writing for a minute.
It just goes to show how a picture tells a thousand stories. My writing is splashed out in a state of spacticity mostly. I look like steady Eddie with cerebral palsy. I have to take breaks and come back and forth when my body allows. It’s the parts people don’t see when reading my piece or peace.

Ok, so back to my Neurological visit and other things that have happened over two days. In a nut shell, so many doors left open have shut. Very good really. This thing that drives you through all the appointments with medical professionals, finance advisors, lawyers and community helpers has taken top gear and I look around for what else needs my attention.   Ha ha, me. I need some of my own attention.
So here’s another part you don’t and can’t see. I’m laying this piece to rest until I feel driven again. I’m closing this page and I’ll re open and finish my writing when my brain wakes again. The spacticity meds have dulled me. ................

Remember too, this is my story as I know and see things. It is not always fact but I do my best at with  what I hold.

Saturday, 7 October 2017

Biting off more than you can chew.

I’ve got this bitter taste at the moment.
Not literally though.  People have again left a bad taste in my mouth.
I really don’t want to feel like this. I love it when I meet beautiful people that you can sit down with and have a happy life experience discussion.

The end

Thursday, 28 September 2017

My idol....Rob Thomas

Also " diamonds"

These songs resemble his wife's chronic illness that went undiagnosed for years. Possible ms, lupus etc.

In 2015 she was diagnosed with lymes disease and other serious conditions from not having it treated.  

My respect and thoughts for Rob and his suffering wife.....

Wednesday, 27 September 2017


Our world is chaotic right now. I literally have to disengage from social media and rarely watch the news just to rejuvenate my spirit and find some peace. It is difficult to remain positive in a pessimistic society. We are divided by politics and spiritual beliefs. We are surrounded by violence and hatred. These social ills are affecting my  body,mind,and spirit.
I am worried about healthcare and how new laws may reduce our care and quality of life. I am still a person. I am not just a statistic like the data reports. Neither are you. We have a life, a name, and we matter.
Many have lost so much already. Physically, financially, and spiritually, MS and chronic illness have depleted them. I often wonder how we can thrive in this current atmosphere, when many of us are just simply trying to survive. This applies to people without illness just as much.It can be disheartening.
The skepticism and the current climate are affecting me. I feel as though I am experiencing a lessened state of wellness, and it is time for me to take a step back. The notion of stepping back is what often keeps me afloat.
At times, we have to retreat to a place of peace and quiet. The location may be different for everyone, but the goal is identical. The place of peace is where we go to disconnect from the noise for a while. That place where we think about what’s really important as we connect with and redirect our spirits. Here, we remember that regardless of what is going on around us, we have to withstand adversity and remain true to who we are. We are reminded of our purpose.
I was always taught of the importance of my voice and the power of my reach. I was taught to speak up for myself and others, and to challenge injustice. Writing and advocacy are so important to me for those reasons. My benevolent work has led me to define my purpose and it is allowing me to live my passion.
For me, this is the bigger picture. I realize that it is futile to participate in any situation that is not conducive to my peace and wellness. I cannot allow the noise to block the voice of my intuition and intention. My quiet place redirects me to this realization. I ingest bits and pieces of the serenity, recharge, and try to do what I can to change the current condition.
As people with MS and chronic illness, we must maintain our state of mind. In times of doubt, dissension and turmoil, we are mandated to live our truth. It is easy to succumb to conflict. I have concluded that any attempt to compromise my inherent self is a tariff that is too expensive to pay. Years of doubt and insecurity have led me to an empowered, purposed, empathetic and unapologetic existence.
I know that life is worth fighting for. I recognize that my voice and my writing may encourage someone else. I am obedient to the fact that I have to live, give and share, regardless of what is occurring in the world. I am certain that words, followed by actions, effect change.
When I avow that I am an MS warrior I do so with pride, knowing all of the obstacles I had to withstand to arrive here.
MS and chronic illness teaches me that we must focus on today, nourish our minds, and fully embrace all that we are. The most valuable lesson learned from a peaceful state is that no one and nothing can stand in the way of our purpose.
My hope is that you face adversity with your head up, keep an open heart, retreat when you must, and live your best life. Times change. People and their opinions change. Character remains and purpose perseveres.

“Take time to be quiet.” 

Saturday, 16 September 2017

Spring but brings new life....and bitches

of late, the weather has been absolutely great here in Queensland. For more reasons than one.
A few months ago ,Watching the wildlife fossicking as busy as a person working overtime to prepare their nests.
Now they are all very quiet and only the hunter is seen. Don't dare walk somewhere different or unusual to you though as you will be attacked.
You can laugh and totally relate as a human really.
The excitement of going out shopping and looking at all the baby gizmos. Some required, most not.
The labour delivery and then going home and playing mum.

I've been watching these possums that live in our roof since May this year. Up until now, they have been very sweet and peaceful. Well things have changed this week as mummy is now a bitch.
I only ever heard them going to bed around 4 am. Quietly running along a wire from near a tree and gently landing in the tin roof. Then I would hear a gentle scurry through the cavity for them to get to their usual sleeping spot. This little routine always stopped me in my tracks and gave me thought of life and how everything living is striving for the same thing at the end of the day. SURVIVAL.
Well blow me down Charlie. I forgot what monsters we become when our young are born. Protective, hormonal, tired and bitter towards the male part that put us here. Ha ha ha. Poor bastards.
I've been videoing the sounds they make at 4am the past few days. I can't quite figure out who's out and who's in these days. I'm gathering she's got babies up there as we are getting bits of noise and scurry through the day. Nothing big or lasting, just awake.
When it comes 4am , there a huge shit fight. It would wake you if you were sleeping. It wakes rob up.  Rob said," what's with the possums lately ?".  I smiled at him and said, "I think mummy has babies and when daddy does his usual at 4am from the pub, he tries to hop into bed and mummy has her arms full of feeding babies".  You can picture it though. After all the screaming noises and thumping that echoes through the house for around 10 minutes, you hear the soft but loud scurry of daddy possum heading towards the other end of the roof cavity to sleep. Mummy has designated him to another room.
So instead of us getting angry and considering the possums being removed, we both had a giggle at how life is for every living thing. This noise and arguing of the possum family shall pass. I said to rob Then we will block the hole so they can move elsewhere. I don't want a neighbourhood happening up there. He agreed. "But you will have to do it between 12 and 3am when they are out shopping otherwise you will lock them in there to die". Robs smile quickly turned into doubt.

Friday, 8 September 2017

Trying it all !!

ms story again.... after all I created this blog as my own way of releasing bad energy and thoughts.

I'm very bad lately at just sticking to the norm and familiar. It was serving me well and still is as it keeps me a lot more confident in my day to day movements etc.  I am now learning that something's are not getting attention. Something's are pointless in giving attention as there are no fixes or answers, so they are best just left as they are. However, some things do and have proven to me to maybe try something different.
I've been experiencing chronic debilitating pain in my hips. I put it down to my back and maybe I'm guarding it which has caused major tension and inflexibility. Well, of late I realised my right knee and foot are turning in severely and it is impossible to correct. It's obviously taken a long time to get to this severe state and now correcting it will serve the same. One particular day, this was the day I realised the problem was bigger than I realised. I woke to an extremely sore swollen knee as if I'd injured it. I knew I hadn't so it sat with my mind for a while and dedicating a lot of attention and behaviourism to it. Over time it's when I realised that it was malforming into a new gait. My knee would completely pop out of joint when bending, that part was less painful. Standing up was another story.... crack, crunch, pop, ouch as it would re locate or dislocate.... not sure which way it was really. Paying so much attention and then looking at the way my moccasins shape was severely re shaped made me realise it's starting from my foot and working it's way up the to the knee, leg and hips. I had it all back to front.
I've been wearing a knee brace of late. I was at my daughters and my knee was driving me nuts. She offered an elasticity knee brace which within seconds straightened my leg,knee  ankle and foot.  Yes it's been slightly painful reforming my leg to how it ment to hold, but finally starting to see fantastic results. I'm getting very slight relief in my hips or pelvis  but nothing major. I'm sure this will come in time too. This is probably the harder or hardest area to correct. I'm sticking this one out as it's so simply changing something back to normal.... by the way, I was measured up and bought the correct size and purpose knee brace.  This morning, I have to say I'm feeling relief in my hips.... thanks Scotty, you beamed me up once again.  Another thing I've been trialling is other meds much to my own disgust as I was trying to rid the ones I KNEW WERE pretty much minimal in relief.  I tried anyway and didn't like them so I can shut the drunken monkeys in my mind nagging me to stop being stubborn," you never know" is what they were saying. So, I had to listen and listen, tried and tested I did.   Another possible med they want me to try is for narcolepsy and cataplexy.  I basically said to my doctor (god bless this saint) I've lived with it this long and learnt to manage. I don't have to be anywhere at any specific time so I'm really not sure I want more medications. He stated they give me more energy and happiness.  I don't think I need more energy though, I have way to much energy (almost add type energy) this seems to be my nemesis as I can't fullfill the energy needs which ultimately in turn drives me nuts.  I was told to think about it and we will discuss it next visit. I walked out thinking " no way, no more meds".   Well, I've given it some thought and realised this stubbornness again is possibly holding me back. I will give it a go and if it helps me significantly with no nasty side effects I'll stick with it.
Now, the biggest thing on the top of my list is cannabis. It's been approved Australia wide in 2016 for a very few disorders. Ms, epilepsy, nausea for cancer patients and chronic pain sufferers.  I was always so afraid to try this one as I remember in my early years, we'll sort of early years 27 and about 30. I tried street marijuana a few times and hated it. The paranoia, twitches and just feeling like I wanted out of that feeling. So that was a definately NO WAY for me. ....
Recently, reading about the modifications made to medical canbabis, those horrible and common side effects are not a problem as the THC and other chemicals are removed.... don't quote me on this as I'm still investigating it.  My Doctor is very keen for me to try this so I'm going to a seminar in Brisbane September 13th to learn more and hopefully just one cannabis medication  could possibly replace the rest or most.  I've got to start trying different things and make realistic decisions rather than the stubborn behaviour that has so interfered with me moving forward.  In the past, the medications provided were outright bad, so that's where this stubbornness metaphored. Back to the drawing board, but with a big open mind and awareness.  Just trying it is all I can do.