the honest truth of who and where we are

it takes along time to diagnose ms. It's a strange little thing that tricks you all the time.  You know those days when you're booked in for a haircut because your hair has become so unruly and messy looking. The day you get up and get ready for your hairdresser appointment, you look in the mirror and think, shit, my hair looks great this length. It's actually starting to suit me.  You get on the blower and cancel your hairdresser appointment and give your hair ONE more chance. This is what ms does in the early days. Cancelled Dr appointments constantly. You feel like a real bloody lunatic. Why have I felt like death again for the past three days,only to wake up and it's like it was never there.  Oooh, those wonderful early days of ms. When I did go to the doctors and explain what I'd been through, blood tests and other new tests would be performed with results coming back saying " shit, she's one very healthy young lady". Then after a year or two...

This is exactly how I feel and I'm constantly apologizing to so many. I get tired up pulling the ms card, but it's true. From an excellent ms blogger, I had to share My Apologies SHARE RATE ★ ★ ★ ★ ★   By  Ashley Ringstaff —June 2, 2017   ABOUT THE AUTHOR      VIEW ALL POSTS BY ASHLEY RINGSTAFF  As I was getting to my computer so I could sit down and write this, before I forgot, I made my first apology. I apologized to the end table that I repeatedly run in to with my toes. Yes, I am now apologizing to it, because I feel that I have caused it a lot of damage for jumping out in front of me all the time. Now, on a serious note, I wanted to write a big apology, for those I have been abrupt with, rude, snippy, etc. Since I can’t remember things I have said or done to everyone I have come across that meant well, I just wanted to write one big apology and try to explain why I reacted the way I did. I’m Sorry for… To...

This area is for just those occasional thoughts that seem so small, but when you really dissect it, it's had or having huge effects on my life. Tuesday 6th of June 2017.... I remember writing something positive on somebody's social media account that was probably way to airy fairy for their way of thinking.  No insult here, we are all different and it's important that we are. Anyway, normally when I reflect on a situation like this, I start thinking " oh crap, that's probably so confusing to them, and they probably think I'm high or mentally challenged".   I always speak from the heart and struggled with others Accepting this......  well, today I've just discovered or had an aah moment, I don't know.  I no longer knock myself. If they can't accept me for me, well that's their business, not mine.  God I'd go insane trying to please the world.  Of course this goes with common sense too.  If I wrote something quite nasty or effectively ...

Damned if you do, Damned if you don't This hut that is hexed Fall victim I won't I'm here to hold hands Not higher nor lower This community we live in Need not the horn blower. Our threats are but zero If we live it that way Forever I'll be here Forever I will stay No monger can scare me With what life has already dealt I'm a giver not taker But I can whip out thy belt So as you may see  With the attention you pay I come here in peace Let's leave it that way We reap what we sow And with it I say That karma is out there It's coming your way I'm told "You are lucky" in so many ways I am no victim and pity I despise I've had my fair share like everybody else To rise stronger and wiser is the memory that stays I need not change Or be angered by some May my life be untainted With the powers that come I'm honest and pure As pure as the day Hey why not come ...

I'm finding shit really wierd. people you hardly know, want to know everything about your life. Some of the questions, your own children don't even know the truth of. the hardship, endurance and outright struggle to survive is always about a different motive to someone else. somebody, somewhere sitting in a dark office making decisions about you, yet they have never met you and have lost all your medical records or claim to have never received them. i want to stay clean......   knowing that decisions I make based on my life, will NEVER effect somebody else.  I don't want the burden of being "successful" making life hard or harder for somebody else.  Just leave me in this little world of multiple sclerosis.  just let me decide if my glass is half full or half empty. just let me get by each day with the multitude of struggles just STOP putting more hurdles in my path just trust me to speak the truth as I am the only one to pay for   ...

Give an inch, take a mile Please don't rob me As giving is my style Life's but a lesson I will stay the same Learning to draw the line So I can stay in the game I will pick you up  And dust you down But with ms I can't stick around Way too much Has been stolen from me Ms is my teacher Ms it shall be It's a disease of the nerves That takes away all I have tried to beat it But with it I fall It's taught me so much Of what's important to me Of what people are about Sad but true, integrity It's 2 am I'm up in pain It's the latest problem They never stay the same The doctors they ask What is your symptom I whip out a book Tell them to get reading, cause this roller coast ride changes by the minute. I cant plan, I miss out on my grandchildren, I'm constantly being treated like a criminal through establishment rules for help  yet am still praying for it.  Whoops, that botto...

Humble quotes Selflessness is humility. Humility and freedom go hand in hand. Only a humble person can be free. -Jeff Wilson Never look down on anybody unless you're helping them up. Jesse Jackson It took humiliation in order to teach me the virtue of humility. The thing is, no matter how smart, successful, good-looking or special you are, nobody likes a braggard. Nobody likes arrogance. Nobody likes cockiness.

Frustrated I can't do the things I want to do, I have very little coordination which in turn sees me showing lack of patience. The car issue will come up in all my emotional and physical complaints that I will note. I'm frustrated that I can't just jump in the car and get out of this place for a few hours every now and then, this then creates the trapped feeling. Humiliated I'm very very tired of group conversations about me and how difficult I am. I'm tired of laughing along when I want to cry.  I'm difficult in the car, I'm smoking too much, I'm not eating properly, she's having major mood swings and random comments about me not coping in this community whilst I should just be more able to brush it off ( how much can one person brush off). That's great when generally you're days are "normal" , you don't struggle with every little thing. Flies touching you're over sensitive skin, feeling hot no cold no hot no cold....

When you live with chronic illness; ms; fibro; trigeminal neuralgia; hashimotos; lupus; als; hippocampal sclerosis; cancer...(to name a few) etc., just remember this when you need to release or talk about it: You're not complaining. don't degrade yourself like that. you're letting it out so that you can delegate some of the burden you carry in your heart and mind. you want some one to understand; but most of all you're trying to accept it yourself. you'll get there. hugs  Your house is allowed to be a mess. You're allowed to vent. You're allowed to talk about it. You're allowed to have sick day. To take a break. Allowed to rest. Relax. You are allowed to say no. Cancel plans last minute.You are allowed to set boundaries. You're allowed to live within your limitations. You are allowed to test your boundaries when you are up to it.  BUT! Most of all.... YOU HAVE A LIFE. Every second you draw breath. Every step you take. Every moment you have. LI...

The Spoon Theory by Christine Miserandino fwww.butyoudontlooksick.com My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I...

Quora advocate advised me to post a response I gave in regards to the effects of loving and antidepressants.  So here it is....... good old copy and paste  ·  1 upvote  including  Natalie Engelbrecht I have to add another comment, in regards to “needing them”. I've suffered clinical depression so severely and no doubt a lot can relate too. What actually gets me out of the little cycle type behavior, is forcing myself to get up, go for a walk even if it ment dragging myself the whole time. I'd make my partner drive to a private distance and make me get some exercise. It took many of these before I noticed change. But change I got. I've now tricked my brain into thinking it needs to walk when it starts to slide downhill. I've even managed to turn to gardening when my brain is looking at listening to the drunken monkeys in my mind. (Or the subconscious. That doesn't sound so out there and crazy). I've learnt to take control of what every mind has. The...

Sleepless Thoughts: In bed at night, I lay awake. I feel the pain coursing through my body, as I lay in wait. I wait for relief from my meds that never comes, thinking about what I have lost and how I am shunned. There’s a mask I wear that fools all of you, you may think I’m funny and happy but I’m really blue. A constant battle rages in my mind, sensory overload happens all the time. I feel everything around me as well as within, I know pain so well, as though it is kin. Days blend together that it’s hard to tell which one is which, is my mind playing tricks on me or just a temporary glitch. I still mourn the old me though she is long gone, memories fade of when I was healthy and when my body was strong. I no longer remember a day without pain, pain has erased that, though I may look the same. I have dwindling hopes of ever being pain free, procedures and medications have been disappointing to me. I ask myself, how much longer before I lose all hope, as well as in the end, how wel...

Life's food and side dishes with MS. All of us have struggled at some point in our life. Some bigger than others, but it's how you surface and what you learn along the way that is important. The test it puts on your relationship is probably the biggest factor for me. I went through the cycle and stages of anger, frustration, loneliness, fear and more. I hope I'm nearer the acceptance now. I just wanted to do what forest gump did. Run, run away. Don't know where I was running too or what I was running from, but the urge to run was real. The loneliness of battling things alone, the inability to do simple things and above all, losing independence. I lost faith in my partner before giving him the chance to prove that he could help me live, fulfil my needs and happiness, that's the loss of independence fear. The last month or so, he's been there at 1.30 in the morning because my body had gone into rigid spasticity and was having trouble breathing. He act...

Life's platform. You spend your younger and middle aged years, climbing the stairs of life. Sometimes you can skip a few steps up and other times you fall 10 steps down. I'm aiming for the platform of life where the stairs are no more. You want to reach the surface that's flat, stable and all the hard work of climbing has paid off. No bigger or better or worse or lesser, just a plateau or platform. To me, this is life and the way it just is. It's the stairs that teach you when you fall or when you attain more height. As long as, at the end of the day, you have achieved those stairs..... Up or down and have something to show/ feel for it, then those stairs are stable. Take the good with the bad, dust yourself off if you fall all the way down and just start again. You can do it. You've done it before so just do it again. Great theory and practice when you are of young mind and health. It's the way to success or enlightenment, whatever it is you are c...

MY LITTLE DISORDER THAT CONTROLS LINDY. * I WAKE UP AT 4 am every morning, just so I can have that peaceful moment with the birds rising and the tranquility of quietness * I roll to the side of my bed, no strength to lift my little body with this little disorder. I look around the room wondering where I am, what day it is, do I need to get ready for work, who is in the house with me, what did I do yesterday that makes me feel like I've been at the gym all night and the hangover from all the un consumed alcohol. * I stand up, fall frontwards into the wall ( or sliding doors in my case), I re gather my balance and head for the bedroom door, whack into the built in wardrobe and ricochet to the end of the bed. I stand bent over, holding onto the bed post until I get my feet again. * The fun begins here, I head down the angled flight of stairs one foot slowly , then the next, stand still to re compose my balance. Then repeat this about16 times. * Make it to the kitchen / dining/ ...