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987762 tn?1331031553

I jumped but forgot the parachute!

Hey guys and dolls,

Its been a doozey month of May, its cold and I dont want to play this game anymore. We had to go out on Wednesday night, I so thought my mobility was getting pretty good, not so in your face but it seems I can pretend as much as I like when i'm at home, out and about and its so much harder. We attended an information night at a new specialist science school, its perfect for our youngest, he'll have to skip another year but they were impressed enough to ask him to take the entrance exam. Its one thing to know your child is gifted and has a passion for science, but its something else to see him getting into a technical conversation with an astrophysicist, how the heck does he know all this stuff.

We'd parked as close as we could, about a 10 minute walk, and they only had about 4 steps inside, seriously i hadn't even noticed the tremor, i was distracted by having a good time. When the right leg started to shake, knees rubbery and not locking again and then i notice, because by then i was finding it hard to stand still. We're near the band so its all good, I'd of looked like i was getting into the music. lol

The auditorium has one of those steady declining floors so i'm ready to ask for help but DH has already noticed and is there with an elbow. You'd think those 1/2 dozen meters were a lot longer, it felt like miles and i was really shaking badly by the time we got to our seats. Hmmm i've been out for 1/2 an hour and theres 2 hours to go, at least i was sitting down for most of it.

Its hard to stay in denile when your DH has to assist you to the toilet, there was no way i'd get across the sea of people leaving the auditorium, i was now in full tremor and really really desperate for the loo. I dont know what was worse the angry looks or the lady that had that same look until she saw i was struggling, she stopped mid stride and opened her arms so we could get through. I stupidly looked over my shoulder to see who her look of pitty was being directed at, ohhhhhh dear, it was for me. Another bubble of denile burst! Feeling rather pathetic, i stayed in the bathroom for longer than i really needed too, i basically hid and tried to get control of the tremor.

We could of left but we wanted to introduce DS, he was sparkling with excitement just being in the same room with all these renouned scientists, it was great to see him so confident and relaxed chatting with the other science nutts.lol I havent a clue what they were saying to each other, sadly over my head but i know what he was saying was right because their eyes were alight like DS's. It was worth it but i'm still, 3 days later paying the price.

The muscle spasms are driving me nutts, I can handle the ones that dont hurt but sheesh i'd like a day with out the ones in my ribs and my stupid knees, the pain is like a sledge hammer lol. Oh i have no idea what a charley horse means but if its anything like having your hamstrings ripped out, then i've been introduced to that one too. Thankfully the tremor is not as bad but i still cant hide it, and i'm back to throwing things all over the place again. I've been trying to ignore it but for the last few weeks my eye balls are bouncing down to the left, makes my head feel weird like i've just had a head rush spin but its only been lasting for a few seconds. Since the outing it seems to be happening all the time, though its not the same as what i've thought was vertigo, then the hole world seems to tilt, this feels like its just inside my head.lol

I wasn't prepared, I really didn't think i'd loose my legs like that with out doing something physical, it made sense then and i could believe its happened because i've over done it, this time all i did was what, use them, where's my excuse now? DH thinks i'm in denile, I didn't think i was, I thought i was doing well, sheesh i've even started telling my self i'm fine so maybe I have been in denile cause I really dont want to be doing this anymore!!!

I'm not sure why i'm writing just that i felt the need to get this off my chest, if you've got this far, well done lol!

Cheers......JJ    


15 Responses
559187 tn?1330786456
You know what JJ, as hard as we try to keep our lives a "normal" as possible, life just keeps reminding us of this MSerable disease doesn't it.  

My PT gave me some very good advice, actually he has given it to me several times and hopefully someday I'll remember to follow it.  He said to only walk as far as you can knowing that you'll have to walk back that same distance.  Of course that is good advice, but nevertheless I still end up in a mess when I walk too far and my legs give out and I can't make it back to where I started.  

This is frustrating especially like you say that this was only a 10 minute walk.  We used to walk hours and hours and now we've been reduced to minutes.  And then we have the rest of the "stuff" to deal with.  Lady, you are definitely in good company here and don't hesitate to get this burden off your chest any time you like.  We all have been there.

Hopeful that today will be a better day for you.  Take good care.

Julie
751951 tn?1406636463
JJ, so sorry to hear of these extra challenges coming your way.  We certainly pray that this episode is fully concluded quite quickly.

How old is the young man?  He sounds like quite the genius.  My daughter was her high school class valedictorian, got her B.A. mostly on merit scholarships, and completed her Masters (in some obscure literary field) soon afterward.  Now 32, she's working on a Ph.D., last I heard.

Back to your limitations, I've forgotten if you're said something before on this, but have you employed any type of mobility assistance devices?  I'm thinking of a cane, at least, which doesn't require that you sit in a special section like a wheelchair would, and allows fairly rapid movement when necessary, unlike a walker.  It is also something that can be very temporary, if you again reach a point (as I currently have) at which you feel safe without it.

Congratulations, incidentally, on having both a prodigious progeny and a seemingly attentive spouse.  God bless you all.
751951 tn?1406636463
...if you'Ve said something before on this, not "you're."  Zheesh.  I need more coffee.
572651 tn?1531002957
JJ - just remember that this is a disease of good days and bad days.  Unfortunately which one it will be today is always a MyStery.  Don't despair too much because tomorrow may very well be that good day.  At least we have to keep thinking that way.

best, L
987762 tn?1331031553
COMMUNITY LEADER
Thanks guys,

See here's the thing, with out a dx i can keep telling my self i'm fine, even when i've fallen flat on my face. I'm not sure I even care what it is anymore, I just want it all to stop, it use to but it sure doesn't anymore. I'm so over it already, is it too much to want one day of peace? Sure i laugh through most of it, i'd go crazy other wise but this thing is taking my brain and my legs and its getting harder to laugh. DH confessed to being ready to pick me up and carry me, he's done it before lol now wouldn't that have gone down well in a room full of accademics & scientists lol  

Sometimes i can control the tremor, just long enough to keep the limb steady to do something though i have to be looking at the offending arm and really concentrating. If i try and be automatic, that tea spoon of sugar is all over my kitchen, though i've tried i can not concentrate enough to stop the tremor when its all of me, once its started there is nothing stoping it, nothing!

I do have a walking stick, I thought i no longer needed it but this hasn't been the first time i've wished i'd not left it home. Its not easy carrying it around for just in case, even though its a fold up one it still doesnt fit in my handbag. I've always had to hold my bag in my hands, no shoulders to speak of lol I tried a back pack but couldn't move to get the stupid thing off my back, i suppose i could try a bum pack at least it will give me some padding when i fall, i'm listing to stern lol.

DS is now 12 and a half, we knew he was different the day he was born, would you believe the little mite only a few hours old, strained to look over his sisters shoulder when the theme music for the Simpsons came on, what new born does that.lol It was his dad who worked out he already knew the alphabet and could count, he'd just turned 10 months old, his mind is a sponge and he doesnt forget anything he's read, scary sometimes. We're not sure what he'll specialise in yet, a bit young but at the rate he's going he'll get to uni before he's 15, no doubt it will be something to do with science. He expects to be a scientist, and he wants a nobel prize, gee only a small goal lol! Can you see why I miss my brain?

Ok, i'll chalk this up to just a bad day, kick my self up the butt and try to put on a happy face, not sure the face will cooperate but zeeee will try!

Cheers.....JJ

645800 tn?1466864555
JJ,

   Wow what an episode you had. At least DH is aware enough to how you are doing to give you a hand when needed. In that you are very lucky.

   I always keep a fold up cane in my vechile just for such happenings with my walking. More than once I have been glad it was there as when going out with friends in their cars I alway transfer the foldup to their car. I also have a nor foldup cane that I use all of the time. but it is difficult to use when in my friends car.

Dennis
645800 tn?1466864555
JJ,
   I forgot to say that it is great to hear about your son and the steps you are taking to insure he gets a great education. When I was a kid I was a lot like your sone. I was reading Plato, Homor, Shaksprear, do Algebra, Trignomitry, and calculus when I was 7. I think I read my fols entire set of encyclopea by the time I was 8..I just could not get enough to read. But back then they didn't really do anything for kids like me so I spent most of my school life bored to death as it was not chanlging to me.

Dennis
1140169 tn?1370188676
JJ

What everyone else said here...ditto.

Sorry you had this black cloud hang over such an important event for your son. You must be very proud of him, and I'll bet he's very proud of you too. After all, you are SUPERMUM....and you just proved it by putting your needs aside for your son.

You sound like a very strong individual!

Hope you feel better!

Mike
1140169 tn?1370188676
Oh...forgot to ask...did you yell GERONIMO?
987762 tn?1331031553
COMMUNITY LEADER
OK, I think i'm now in free fall (geronimo), i'm even reluctant to post in case it comes out all wrong (again) I so dont like this and i'm left wondering just how idiotic i'm going to become.

My almost 70 year old mother has just finished telling me how her dr told her she has perfect health for her age, and its true she has no age related issues and she still has her incredible brain. We could swap shells along with the breast implants she plans for me to inherit, dont ask too funny lol I actually think i'm loosing the plot!

How long does it take to make a cup of coffee (gee that sounds like how many dr's does it take to change a light bulb kind of Q lol), today it took me about 20 minutes, Why? Well first i needed to get a cup, no cups in the cutelry draw, nore the dishwasher, 3 time was the ticket. Next i needed to fill the kettle, i washed the pot I had soaking and so i could get the kettle under the tap.

I finished washing the pot and turned to to reheat the kettle again, oops no kettle, now where did i put the kettle? Oh its still sitting next to the sink to be filled, silly me. I filled the kettle but made the cup of coffee with out heating the water, so had to start again lol.

So i made a fresh hot cup, put the milk back in the fridge, started to walk away and realised (or so i'd thought) i'd forgot to put in the milk, back i go to retrieve the milk. Then find a perfectly made cup of coffee sitting waiting for me to drink, i just stared at the stupid cup trying to work out how that had happened. lol

Hmmmmmmmmm and i'm wondering why i'm getting confused easily, sending posts that make little sense when i can't even work out how to make a stupidly simple cup of coffee!!!

I told DS he better not give me a hard time to day and explained what had just happened and he laughed his head of, exactly like i would usually do but sheesh its not that funny and slightly on the OMG my brain is turning into porridge side of funny.

I know others can relate but this is so over on the dark side its scarry!

Cheers.........JJ

PS And i thought i was having a good day, no fatigue i'd even vacuumed lol
645800 tn?1466864555
JJ,

  That is freaky as I have done almost the same thing myself. The only difference is that when I went to put milk into my coffee again I could not find the cup of coffee. So I would make another cup. It would only be a couple of hours later when I would go back for another cup that I would see the first cup sitting in plain sight on the counter. This is one of the reasons I gave up drinking coffee. I know keep it very simple by drinking cold stuff that I just have to get out of the fridge.

I still end up with multiple drinks at times because I will go into the kitchen for something and bring back a second drink, but at least now when I do I can just turn around and put the second one back into the fridge.

Oh and your mistake was vacuuming. My brain always turns to mush after vacuuming. :)

Dennis
627818 tn?1271780626
I can relate, too. A few weeks after this attack, I thought I was up to doing a little something to help out with dinner. So, I made brownies - from a box.

It took me probably 20 minutes to prepare them because I would get so lost. 1/3 cup of what? oil or water? Look at the box. Oil. OK. Now, where is the measuring cup? 1/3 cup of what again? It went on like that forever, it seemed!  Then as soon as I got them in the oven I couldn't remember if I put in the two eggs or only one. They did turn out fine.

A few weeks ago I ventured into baking again. Banana bread from scratch this time. All went well, except I tried to put the oil back in the cupboard where the salt usually is! Didn't fit, OK, now where is the salt>

We all go through it!
1318483 tn?1318350782
I have to laugh even though it really isn't funny.  I thought I was the only one who did these things!!  Nice to know that I am not alone...even though I really wish no one went through it.

Kinda like an oxymoron?  Sometimes I just feel like the moron!  lol

Addi
1253197 tn?1331212710
I loved the title of your post, not because of the underlying meaning..but because it showed your incredible strength, courage and sense of humour!

Hope you have a better day tomorrow and ever found your "hot" coffee in the fridge?. Yes..we all have those days.

Love Sarah xxx :)))
987762 tn?1331031553
COMMUNITY LEADER
I have found the spray and wipe (cleaning product bottle) in the fridge, though not my coffee, but give me time lol

I forget how to make staple foods that i have been making for years, my pastry-less keish (sp) for instance always needs 8 eggs, i didn't know how many id used until the carton was empty (12) and after it had been cooking in the oven for 20 minutes i remembered i'd forgotten to put in the flour, so it was basically a giant omlett. lol

I had to speak to the bank yesterday, no big deal but try remembering your own birth date when your brain is on the fritz, i gave out random numbers that had no relation to anything. I made a joke of it to buy time, busily hunting down (like a mad women) a pen and paper so i could write it down, hoping that would trigger the missing brain cells, thankfully it helped but i had 5 pens within easy reach that disapeared just by needing one.

Its so cold here at the moment that i've needed the electric blanket, i turned it on high and forgot, woke up with blisters on my toes. I dont know what was worse not being able to feel the heat or trying to work out how I got the blisters lol

It's not all bad and lumpy porridge, one minute i'm doing normal and then i forget, dumb stuff like talking on the phone and get up from where i'm sitting (thats a no no) then trying not to let the person on the phone know i'm now on the floor, not a clue whats being said because i'm clutching my leg and counting down the pain. Funny in that ooops kind of way.

Fingers crossed i didn't vac up those missing brain cells ROFL!

Cheers....JJ









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