US Freedom to MS Prison - Releasing myself!

So excitement is in the air all around me. I feel it like static electricity. Fourth of July weekend is upon us and that means party at my sisters and the neighbors aka "the village"! Now all I have to do is actually make my body catch up to the excitement going on in my mind!

Unfortunately, this is so much easier said then done lol ...... In my mind I want to be at the lake water skiing like I use to, getting a little too much sun on my skin, then having some beers and bbq'ing til the sun went down! Thats when the real party would start! Bust out the fireworks.... the bigger, the louder, the better! I would love watching things explode in the air and feel the boom so big it rang deep in my chest! This would go on well in to the wee hours of the morning. Afterwards, we would collapse and sleep and wonderful and exhaustive sleep!

Now, reality check! There is no skiing or sun on my skin unless I want my core body temp to go berserk and celebrate the 4th in the hospital! Now the beer, maybe 1 or 2, MAYBE, but I shouldn't with all my meds. The BBQ yum, that will still happen, just not with me in the middle of it. Again with the heat problem. So of course we progress on to the fireworks right? Well kinda! I learned the hard way that the intensity and loudness set off something in my central nervous system that makes me really sick. Go figure! If I do not muffle the sounds of the fireworks, the constant loud popping and booming rattle deep to the core of my body, literally somehow and after awhile I can hardly walk or speak or see. I will be in bed sick for 2-3 days not really able to eat or move other then bathroom trips or drinking water. It's a cruel twist to something that is suppose to be so enjoyable celebrating USA and our freedom and it puts me basically in a prison of my own.

But, the way I see it, I will celebrate in my own way with my family. We will be with my Sister and her family that I love so dearly. I will go swimming in her pool in the shaded areas and smell the bbq as it cooks away! As the sun goes down I will cram my ears with cotton and cover with headsets to muffle noises so I can see the beautiful colors shoot in to the air. I will be damned once again if I let MS set limits on me and confine me to a prison within myself while my country is free and celebrating just that fact!

Happy 4th everyone! Have a safe holiday and we will talk again soon!

LaP

You there? Its me, the friend with MS.........

You ever wonder what goes on in other peoples minds when they approach someone sick, with a disability for a first time? Especially if this person is a friend you've known forever and its a first meeting since the disability set in. You can just see how uncomfortable they are by the look in their eyes!

Me, being the disabled one, sometimes feel bad for the person on the other end of this. BUT, those who know me also know I probably will make the awkwardness worse just for the hell of it! Why you ask? Well, that could be for several reasons. Is this person just now coming around the "newness" because they have been avoiding you and your illness straight out over the years? Did this person have legitimate reasons for not coming around until (even tho I cant imagine one). Or perhaps is it my fault? Have I deliberately shut myself off from the world around me due to the depression and less then equal feeling I have to my old friends now?

I often sit and wander just those things. For someone like me who use to have a very happy full life working and staying busy with a young son, that all started slowing down month after month, then day by day. I've had people say how "lucky" I am that I get to stay home all the time, don' have to work, get to be with my son more. Seriously? First off, if you call getting MS lucky, then hell yeah I hit gold! Unfortunately, it's fools gold.

I miss my independence. Being at work, having conversations with other adults all day, throwing gossip in here and there. Just having something to challenge my brain was great! Unfortunately, it doesn't take much to challenge my brain now with the cognitive problems. But I work around it as best I can.

I dont think friends and old colleagues realize how much a part of your life they were. They still have a very busy and fulfilling life going on. One you wish you could still have, but never truly will again.

Just for fun tho, I actually do let myself go out sometimes, in my mind. On the hot summer days I imagine myself on a boat on the lake or a water park with my son having a blast. On a cooler evening just taking a walk without tripping or falling, maybe around the neighborhood with David and our dogs. The best is my mind trips to the beach. I can smell the salty air, feel the breeze and the sun on my skin. All this with no worries of core body temp overheating :) A girl can dream!

As of right now, thats exactly what im gonna do, dream! This time maybe a balcony at the beach, coffee in hand, no pain anywhere, just me and love and light ♥

True Ramblings of an Insomniac MSer

I just sit here sometimes wondering how many other people are awake and cant sleep? Im sure there are tons that fit that bill. But, inside that, how many cant sleep because of specific reasons?

Things could be generalized as in Stress, Sickness, General Insomnia, etc. But what if you break things down in to sub-categories? I mean there has to be millions of reasons why people are tossing and tumbling and not sleeping, right?

Mine would fall under the General Category of Sickness. But then i'd sub-categorize it under Chronic Illness or Disease. I guess from there you can go in to further detail with the actual name of the illness or disease and as to the reason this is keeping you up all hours of the night. Mine would be MS. As a generalization MS affects your Central Nervous System. That is a pretty wrapping with a bow on top of a bunch of shit inside of a box if you ask me.

No ones MS is the same. Mine started out bassackwards. Fucking with my memory/cognitive skills first. Thats usually a later symptom, but oh no, not for me, im special lol. My diagnosis couldn't even be done normal thru spinal taps and stuff, it all showed inconclusive. Instead, "we" as in the best teaching hospital in Dallas, had to strap my head in a halo, screwing the bolts in without deadening my scalp (swear to God) all the while im screaming! (Ms. Pierce we can stop and send you home if you prefer?) Fuckin assholes! Took me in for outpt. surgery and took several biopsies of lesions on my brain. It was only then that they could finally diagnose me with MS for sure.

I can actually trace back by certain odd symptoms and problems I had over the years that I probably had early signs of MS going back as far as the late 80's or early 90's.

Anyway, back to rambling and not sleeping. Mine boils down to pure unadulterated pain. If i'm up walking, it feels like im walking on nails and the joints in my ankles and knees are going to break. If im sitting up in my chair (nice comfy recliner) you'd think that would be perfect! NOT! Thats when the pressure builds on my spine and neck. The covering around my spine (myelin) has worn off on the very lower part and is exposing nerves (yes thats MS at work too) so thats a super painful thing if you can only imagine. It sends pain signals from the nerve endings exposed all over me. So then I try the sleep thing. HA! Thats when my body tries to really party! All my nerves go crazy then and my muscles join in. You can actually sit and watch my muscles on my legs and arms and back just roll with spasms. Top that off with the headache it causes and voile, no sleep!

I know, I know. You ask, what about medicines? Ive taken everything you can imagine and done PT and all the other tricks and surgeries. Life with MS is a work in progress. Until the past few years it wasnt as severe as now as far as the pain. But now thats the hardest part. Im learning to accept what i've lost cognitively even tho its hard, but i'll never be able to accept that I have to live in this much pain and sleepless nights the rest of my life!

So to my fellow insomniacs, I wish you sweet dreams if only they are daydreams.............

Any interesting ramblings from someone else?