the honest truth of who and where we are

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 util

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

it’s happened, I’ve lost my legs. I’ve had one or two warning signs leading up, but only lasted a day or most of a day. Sunday the 8th of October was d day. I remember doing my usual thing, waking at 1 am ( used to average 2am) for the toilet and my normal time of stiffness. I usually stay awake for two hours roughly.  just gently rocking or pacing like a robot!!!! TRUE. This particular Sunday morning as I gently went to stand, there was no stiffness, rigidity or spasticity in my legs. There was nothing.  I woke feeling strange as i had  a tightness around my neck and throat. Hoping once I got up and moved a bit, it would all regain its normalcy. Nope 👎 I went to stand but my legs buckled. The spasticity in my throat was fairly mild and I’ve had this many times. Like I said, once I move around it loosens up to a manageable level. From the ground, I tried pulling myself up, obviously using all my muscles and power in the upper extremities of my body.  My arms are built like a br

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

 http://smarturl.it/RobThomasPieces 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.....

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 sta

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 lit

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

It's something that I've been putting off for so long. Getting back to the treatment and serious side of the medical world and employing a lawyer for a more smoother stress free process of claiming my private permanent disability or TPD as it's commonly known.  Generally these claims get messy and stressful as it's an insurance company of course. Most people have smaller type nest eggs for if such situation should arise. When my mum died, I had to do all her TPD and death insurance claims which made me look at life more seriously and I went in and upped mine to a very compftorable size or amount.... so in summary it's going to be a shit fight. Hiring a lawyer took me so long. Ringing around and hanging up with that gut feeling saying NO, don't go with that one.  I've finally found a local lawyer in gympie Power and Cartwright. Unusually, the phone call to organise a meeting was extremely comforting and just that feeling of " this is going to be ok !

now this little piece is a puzzle being put together by my specialists from the family history of chronic pain, no ms diagnosis hence self medicating. My dad's mother died of renal failure from a sick kidney then the transplant that her body rejected, she died of heart failure in the end.  This was caused by the huge consumption of Bex powders, obviously for a chronic pain condition that was nearly impossible to diagnose then. Sadly, a lot assumed it was self destruction. Well, yes it was. The pain being unbearable caused her to swallow bex powders to alleviate it. There's so many ways you can look at this scenario. Ultimately, she had undiagnosed multiple sclerosis which caused her death at the end of the day. Stating the obvious here, she wouldn't have taken bex powders if she wasn't in so much pain.  Yes, bex powders were famous for the renal failure it created it, but we need to dig deeper..... why was she taking such huge amounts of bex powder ? ?  Sadly, she

well of late I'm going through massive transformation. Yes, I've been chronically I'll so much for about 6 months. The longest a relapse or bout has ever lasted. I kept praying and pleading for some relief. Why me why, why, why ?...... Looking back, I was unsettled and trying to convince myself that I should be. I almost felt greedy for wanting more out of life. Not more money or more of materialistic value. I wanted more happiness. Happiness doesn't just appear dear lindy, you have to create it and shun all negativity diligently. Look, I don't know if it's a combination, but I honestly feel that moving to gympie queensland has helped me through my transition. The people you meet here are almost, I don't know...... vibrational and beautiful.  Yes you still get the odd robotic type people just moving through life and doing what is expected and accepted, but generally they are far outweighed here in divine gympie. I still offer these people my energy, bu

IN A NUTSHELL, GYMPIE IS AN OLD HIPPIE TOWN. in the day it was full of beautiful people with a HUGE community orientation. It still is, however, there is a broader selection of people types and tiger stripes. Me personally, I love the feeling the energy the warmth of purely being in Mary street. Naturally it's the shops and places I visit in the street that feed me this energy. I try to avoid the bigger chain type shops and shopping centres. Walking into a shopping centre gives me instant unease. The vibration is just rush rush, get out of my way I don't care if you're limping, I've got money and I'm going to buy happiness for a day. This type of environment effects me in such a bad way and commonly knocks me for a day or three. For the south Australians reading this, it's very much like semaphore Main Street. Music, good healthy food, friendly smiling people and just that at ease feeling it gives. On Wednesday the 23rd, I saw a reiki specialist. Besides

This post is within minutes of my last. I'm really struggling with my hair. It hurts as it is so heavy, curly, no straight, frizzy oh whatever. The moral of this post is.... I need to have a damn short haircut, Annie Lennox style preferably. I was hoping like hell that the chemotherapeutic  Drugs would leave me no choice and my hair would start falling out.  No hope, the steroids make it grow more, I swear. This is so insane, I'm struggling to just do it, cut it off. Aaah, you know why, it's giving up something AGAIN.   I really dont care for hair but I'm doing it against personal wants. It's illness requirements and I don't get along with that one. So these are the styles I'm looking at. Thanks to an app that you chose your style and strategically try and place your face into the face shape.  Pretty good reference for me I suppose.  Some are god awful. Some I love. The only thing is you need to blend your own skin colour with the templates an

Yep, it's been a while that I've splashed my thoughts. Specialist appointments, these ruin me prior to and after the fact. On a positive, my daughter and granddaughters from Adelaide came for a week. With this comes emotions too. The horrible goodbye that sits me back on my arse. I'm so over saying goodbye to everyone and everything I suppose. I want to welcome in good all the time.  MY FAIRYTALE...... I've had a couple of relapses in just a few months. Some days I get up and I have no scope for the day. This shall be my last as I am dying. These are the days where I can't for the life of me hide my illness, pretend or deny that I'm ill.  I spend a few days by the toilet.  I can hardly see as my face is so swollen and I have absolutely no feeling in my face. I try to eat and choke, when I drink it runs down my front, in my mind I'm thinking " you have to eat and drink to sustain that bit of life in you". This is when the viscous cycle start

That's it in a nutshell. Everything I do or try to do, everything I think, every financial or business transaction has been and is FIGHTING THE DEVIL. my coordination physically and mentally drives me NUTS. I've always been a highly organised and some what proud energetic person. I'm trying to maintain that part of lindy with a fight. My principles are lying in the way of just letting it be or letting it go. My determination which has always been an asset is now my enemy. The physical energy I still have in a strange way, is boiling inside of me and needs an out. My active mind that I once kept at bay has gone rogue. Where the hell do I put all this shit that is lindy ? The good the bad and the ugly are what makes us who we are, we spend most of our life learning and understanding our weaknesses, strengths, disciplines, undisciplined and everything in between. Just when you get to a more mature age of accepting our differences and starting the puzzle of life, this ma

me and my mixed up muddled up mind. When I see my Doctor (5 hour turn around drive), I also visit my daughter and grandsons. It's generally nerve racking preparing for the journey but once there, I leave with a feeling of achievement. Evidently and very obviously, I'm surfacing from a relapse. An MS relapse. With aggressive ms, unfortunately I don't recover from relapses. The damage is there for good. In RRMS, people recover from relapses with some slight permanent changes. And, no I don't intend to make any MS sound like an easier or less invasive form. Off that subject. Sort of any way.   When visiting my GP, it's like catching up with a friend. He's just the best doctor and all round person. He treats my MS with dignity and so badly wants to fix me. He doesn't ever offer or try to ram more medications into me. He sits with his legs up on his chair like a relaxed person does and listeners so intently to every thing I say. He looks at me in the fa

maggies.  They are fascinating creatures.  All birds are really, it's just that maggies are huge ground dwellers for obvious reasons.  Being that they are so monogamous ,territorial, live in tribes etc, they are so interesting and easier to study. The new place we live, has a family of magpies that instantly took to me / us. Our last house was the same, they would come in and get their twice daily feed. We haven't set up a feeding routine here yet and I've been hesitating due to other people's input as to how bad it is for the birds. They claim that they will not survive in the wild if we feed them too much..... come off it, they are not dumb and reliant like us human beings. They come in for their feed morning and late afternoon, they also feed off of grubs etc all day everyday as well, so that theory I took as a possible threat to the maggies has been squashed to me. Our last Maggie family was the time of year when they (the parents) are weaning their babies.  It&#

that word....... silence.  My brain shuts down for absolute silence. Not wanted silence though, it's a " no choice silence".  These are the days when I can't string a sentence of simple words or needs. I'm learning, discovering  and trying to accept what is actually going on rather than getting annoyed with it. I've had and still have so many unanswered questions though. Up until now, I couldn't understand why I would shut myself away at certain times. I knew I wasn't upset, tired or just being selfish. I knew what it wasn't , but I didn't know what it was.  It comes down to what part of the brain is being affected by swelling. Swelling is DEFINATELY triggered by stress. Doesn't have to be big stress to someone else, but big stress to me. Something that has been frustrating or traumatic causes major shut downs. Most have heard of dysarthria. It's when the muscles around your voice box and swallowing become inflamed. So it gives a whol

It's the first signs you see when walking into a Centrelink office. (Human services) I want to write the for and against here as it's probably the easiest way of explaining the complex life as a welfare recipient that really and truly doesn't want to be.  I've considered not claiming welfare, but I need a roof over my head and food in my belly so it really wasn't an option. Why would I chose to give up my life and what a great one it was. Bloody good money, no household expenses (company provided home and utilities, even mobile phones) I had the luxury of 2400 acres, big electric gates that shut the world out each night and I job that I was so enthusiastic about that I looked forward to my days.  It suited me and my hyperactive nature. I got plenty of exercise in the field, got to use my brain and problem solve all the time, I had huge responsibilities and challenges. I love those things as it made me human and proud. My life in a nutshell was too perfect. It

The title sounds cold hey. But again it offers so much more to ourselves than we realise..... 1...We offer level headed advice that we Cant seem to offer to ourselves 2... Its a distraction and takes that "why me" away. 3... Their problem is usually very different to ours and if it's new, you realise the hard times of                        those early days of major struggle and not knowing how to manage it The list goes on.  I don't want to turn this into a corporate peice of writing as it's so not.  Every mans burden is the heaviest. Wether it be health, finances, relationships, mourning etc, they are all very life changing as you've had to loose something and in some cases re discover or re direct our path. The yellow brick road is a fairy tale. My brick road is very hilly and has lots of cracks in it that make me trip over.  The more you travel thus path, the easier it gets in some ways.  You learn to balance yourself and watch out for

Ever feel like there's just too much in your brain and these messages keep popping up saying "remove data, memory full" ? That's me at the moment. I'm even struggling to breathe cos of storage full issues. My brain is running around in circles looking for something because it's forgotten so much My intestines have been blocked with some plumbing issue. I think the roots from my brain are growing into the wind pipes. My feet are constantly curled li 🔝🔝🔝 have a look at the irony here.   See what my fucking life is like.  Beam me up Scotty ! Right......... back to the article. My feet are constantly curled like I've forgotten I've  got stockings on and trying to insert an oversized tampon. I'm ringing telstra, foxtel, CGU insurance and other places just for the fun of listening, pressing buttons and hanging up because I've accidentally pressed 5 instead of 2.  Explaining to people that I am traini

its scientific fact..... the moments in death are the most precious or most devious. DMT is released throughout your body to ensure this happens and there ain't no way of escaping it. It's your last rights almost. It's what stays FOREVER. SO, if you have been a good girl or a bad girl, this is where the eternity lies. All important factors of your life are in your face when passing through to the next realm or eternity. It happens over a minute or two, but that's an illusion. It's actually now there forever.  Do you want to die in peace ?  Or is it too damned late for you. Hard horrible words hey. But isn't that what we're being taught now ? Threats, bullying, power, money, ego, god let's even chuck in the fact we are under such a dishonest corrupt government that they are more or less teaching all that that's how you MUST be to survive. Strap ya money to your body But is that even safe ?  Not for the mayor in queensland that just got caug

ok, I'm actually lost for words at the moment. Shocked. Don't know wether to laugh or cry. This is to be continued when I can actually get my head around what happened with centerlink on Wednesday the 14th of June. It's either going to be just a straight forward explanation or a bit of a funny way to look at it.  The fact of being honest under a dishonest government is like trying to convince somebody something is pink when it's actually black. Let's face it, we all interpret life the way we see it. So a dishonest narcissistic person sees life as dishonest and gets off on bullying etc. Somebody that's honest doesn't and can't play the dishonesty game in life. Sadly..... the honest loose. We are the minimalists now TO BE CONTINUED. ..................

Rob, MY WHOLE LOTTA LOVE. if there's one thing I want to take with me, rob knows what that is.....  Fluffies. Every girl, lady or woman wants a man. No not a male, a man. And a man is what I got. At 27 and round two as far as relationships go, I got this one right, so right that it helped my soul grow and develop into womanhood.  I met this man not knowing what we were in for. A lot can't be put down on paper, but I bet he's smiling right now with that very comment. We were thrown into a world of the unknown, or maybe it was just me. Scaring away lots of boogeymen and me doing things that I've only ever seen in movies. I'm lucky that I'm not in jail. When I met rob, I met real love, real passion and a real man. I was safe with rob and our love was glowing. People used to stare all the time and I never understood why. A few friends explained that it was if fireworks were going off around rob and I, our love and energy glowed and it was as

When asked a question that requires a number as an answer, mine has always been 7. It's actually a laughing joke.   NOT FOR THIS STORY THOUGH. But, hey.   What can you really do but fight, enjoy and be positive. My disease is called malignant demylenation disease. Unfortunately good old number 7 in the variants below. MS variants explained The first subtype of multiple sclerosis is the relapsing-remitting multiple sclerosis (RR MS), the most common form of the autoimmune disorder. According to statistics, more than 80 percent of all multiple sclerosis cases are of the relapsing-remitting subtype. This subtype is characterized by phases of symptomatic remission, followed by phases of relapse (characterized by sudden intensification of symptoms). The duration of the phases of relapse and remission vary from a patient to another, lasting anywhere from several weeks to several years. The second subtype of multiple sclerosis - primary-progressive multiple sclerosis (PP MS)

number one is cranberry juice. I mix 1 part cranberry juice to 3 parts water maximum. I consume on average 1.5 to 2.5 liters a day.   If I have any major upsets, i.e., bladder, kidney, gastrointestinal etc I do a 50/50 mix and get stuck in.   For about 4 years I've been doing this and I suppose started taking it for granted how much it actually balanced my internal inflammation and acid levels.  This is where you realize stuffing shit up in life actually teaches you lessons and lessons of more than one purpose. I started purchasing an inferior brand of cranberry juice from the latest new supermarket trying to beat our traditional safe ones. This was equating to $1.80 per liter instead of $3 to $4 per liter.   Woo hoo, was I getting sick very very rapidly. I couldn't work out why..... ok I've just moved house, that is a guaranteed feeling of being out of sorts, I haven't been doing my normal routine of what I call " talking to life", I haven't been doing my

Of late I haven't been my normal self. What's normal? Well, nothing for me. However, I always start and do most things these days with routine or familiarity. It truly helps to minimize stress from the frustration of getting confused, forgetting what I'm doing and keeps the old brain fog at a functional level. Of course my day instantly starts with routine (this being 2 to 3am) my eyes opening to getting to the kettle has become robotic and easy now. Or easier for me, hard for someone that would suddenly wake up with such a disorder.  Ultimately, it's silly little life hacks I put in place that gets me through. I've had to be very self disciplined which in itself has been a culture shock, but a much needed one. My day has started with a bit of a spiritual type scenario I suppose you could call it. Once getting to the balcony or now the big queenslander windows, I look up to the sky and say hi to my loved ones. My beloved and present. This event is very well explai

People walking through the  MS House  will be able to see and feel things from a different, and often difficult, perspective. For a short while, as they walk through guided by headset audio, they can better understand what multiple sclerosis is all about. The living room (Photo by Andreea Antonovici) A TV displaying half-definition pictures is used to illustrate vision problems. An armchair that’s set very low to the floor demonstrates the difficulty of getting up from a chair due to leg strength issues and fatigue. A sign explains that  MS fatigue is like sitting down, and you’re so tired that you can’t get up again 1 . An inflatable mattress is on the floor to simulate how someone with MS has difficulty balancing while walking and may be very wobbly. The kitchen A heavy coffee mug and an unbalanced tray are used to demonstrate fatigue symptoms. The study room (Photo by Andreea Antonovici) A “jumbled” computer keyboard simulates how cognitive problems may make it difficul