Alison Needs Your Help
I am Alison Largent; I have Stiff Person Syndrome or SPS and chronic Lyme.
August 28, 2020
I’m alone in my thoughts, lost in my head with a body that no longer works with me. So frusterated as you know what you once were capable of, and yet now you can’t even follow a color coded calendar of when to pay what bills, (our double check to make sure nothing is missed).
Trying to type, and yet only 3 fingers working with me, and every movement of my arm makes zingers up into the neck into the base of brain. Spelling of words are gone, and even finding the right words are difficult. Faces are recognizeable but the names of some are like a blur as if an eraser was swiped across the chalkboard of your mind and the word gone for now only to pop up again in the middle of the night maybe 2 days later.
Forgive the spelling as I mentioned…..i can’t trust what keys my fingers will hit and sometimes its multiple so you get some weird words in here and caps….so don’t take any meaning to it.
Memories are faded and some you can’t trust during the episodes….
I wanted to write this the other day but, well my body had other plans….its ok, you just go with the flow……LIKE CAPS you just go with the flow as it is too much to stop your thoughts and start back again…..you risk repeating – like this was up a day however I was in the start of a major episode and so I thought I better come see what horror was written….and what the words looked like. Really I don’t wan’t to scare others, or make people feel pity. I want people to know what Stiff Person Syndrome and Lyme does to a person. You lose yourself, your mental sharpness, your mind, your memories and even your personality as you fight so hard to not take out on others the anger and the frustration you have inside you. THe PURE RAGE…..If I had the strength and didn’t know better I would take my arms and just shatter everything off my dressers, tables etc and leave a busted glass mess. However, I know what some things cost, I would never get back up from the ground once I got down to try to clean it and the dogs would end up at the vet and me I would probably be committed.
At first no sounds and no lights were a must, now I have learned soothing music helps, so I tried asking the unnamed one in the room for songs, but my mouth wasn’t working right so well you can say the selection was not quite desireable at that time. I like Korn and all but not with a screaming migraine and a body trying to seize up on itself.
Got Pink Floyd on, and that was it! I used to like some when I was younger, but now it takes on a whole new meaning…it relaxes and soothes and just takes you away from the pain……a new glimmer of help. And somehow Metallica came on – who knows – but it was “the unforgiven” and that too hit a cord…… When you take the time and just let something else flow through you it can transport outside the pain some: its more a background nuissance instead of being front row at the concert.
So, I meant to have something better in here – but like I said my brain had it – and poof it is gone….and I already have this first edit as far as I can take it today……so let’s jump to the end and say…
Thank you to all those that have helped! You cannot imagine what an incredible gift for us to have so we could take care of medical bills, especially now as I appear to be progressing quickly.
I cannot imagine what the alternative would be without the amazing help from a crazy great man that stepped up to get this going! And the followers that have kept in touch and helped him and us reach a number that was never thought to be attainable. THANK YOU & LOVE YOU!
August 17, 2020
The Faces we Wear
We all wear different faces throughout the day and yes, I realize I sound like that commercial on TV.… And no, I am not selling or endorsing any medicine of any sort.
They have a good point, especially now that we have all been somewhat homebound for the better part of a year with no end in sight.
We have our home face: the I’m happy, uplifting, kid face on. You take a quick break to help teach your children in virtual assignments or entertain them. You prepare lunches, dinners etc… all while trying to meet deadlines and get those hours in as the company can see and track your access to their servers virtually.
On your Zoom meeting we may be half dressed, and hair partially made, a little makeup slapped on, but that is all cosmetic. Underneath it all your mind is going 100 different directions whilst you listen, you respond and you keep your office game face on. Intent to show little to no queues: your personal thoughts on any subject blocked, your political face shows no inner judgment on the subject matter as that will be handled separately and quietly, you fulfill your role.
You have your face you show to your acquaintances; the selfie pics you post on Facebook, and Instagram: the happy family, the fun of teaching the kids, and family dinners, always pleasant and “special memories”. On the inside you are worn out, frazzled, the kids are about ready to make you pull out your hair, and the spouse is on your last nerve.
If you are like me, after a few hours of trying to read, or looking at emails, my short hair that was once flat is standing on end. I have run my hand straight up my face and into my hair so often that I closely resemble Beaker of the Muppets.
Instead of having the hairy meetings that go on all day and the never-ending workload, I have a never-ending illness. Those that know me closely have seen the bad days. I have hair standing up, no shower, I do my best to just change clothes during the day so I don’t feel as if I am living in bed. I wake mentally going down a checklist and wondering: can I move without pain and what is stretchable, will I be able to walk or will my feet curl up as claws, or will there be some new and scary surprise for me today?
I put on a face to the public as happy, hair done, makeup on, smile, same as the rest of you. Behind the mask, I am cringing, holding my breath as a sudden cattle prod electrical shocks radiate along my entire right side overwhelming me: sucking in a quick breath, trying not to let out a moan or a little cry. I have a much shorter fuse than I used to, my thoughts are vicious and cut to the bone. Finally, aware of this problem, I work hard to keep a mental gate shut tightly, as I don’t want to subject my loved ones to this verbal barrage. Unfortunately not all masks can you remove…..
Finding the time to remove the masks and just be ourselves is crucial. Be alone with your thoughts. Share your innermost thoughts with your best friend, mate/partner or even a therapist. Seek out that happy place where you can forget about the world: a good soaking tub with a glass of wine, a long run, workout, maybe kayaking, whatever floats your boat. LOL
Realize and prioritize, personal time is important and balance must be found. Without the rest, your fuse gets shorter, and family life, work, and your mental health all suffer.
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July 15, 2020
Best wishes, and thanks for setting such an inspiring example of living life to its best available during tough challenges.
July 6, 2020
So awesome Mack! Keep walking buddy. God bless.
July 1, 2020
Keep up that great spirit and positive energy.
June 20, 2020
Very proud of Mac's efforts. Hello to Ali.