Do you get the shakes?

[persephone]

Hi everyone,

I've noticed the last few days my left (writing) hand and arm are really shaky- not while I'm actually writing, but if I'm sitting holding my pen and about to write. It's not happening with the other arm- do any of you get this? It worries me because this is new, and I know that if I mention it to anyone, they'll just say "It must be part of POTS." and leave it at that.

The other thing I have to tell you guys is how demoralised I feel. My tutor is awesome, but I feel like I'm going to end up letting her down, and myself.

I got given a mobility scooter by the disabilities office last week but it broke down today in the pouring rain and I had to walk about 500 yards to get to the library. It was ok, I got there, and read a bit of my article, but the hard back chairs in these places actually kill me- I'm supposed to be funded for an ergonomic chair but yet again, the Disability Office in Oxford haven't arranged this.

I came out from reading my article, and explained that I needed someone from Disabilities to take my scooter away and fix it, and also to help me get home because I couldn't walk very far (having a VERY bad day today). This is at 3.20, and I tell them I'm meeting someone at 4pm. So FORTY MINUTES after I ring, someone turns up and I say "where's the taxi?" and they say "WHAT TAXI". THEY HAD WALKED OVER FROM THE OTHER SIDE OF TOWN WITHOUT BOOKING ONE. Then by the time they called one, it couldn't come for another twenty minutes. It was 4.20 by the time I got to my 4pm meeting. now, 20 minutes doesn't sound too bad a category of lateness, BUT

I hate the fact that my control was taken away, and I had to rely on someone who clearly is unable to THINK about practical stuff. this is the same person who is really nice, but who the other day was meant to help me cook tea at 5, and didn't cook it til 7 because they decided to sit and talk til gone 6. The same person who was meant to wheel me home after class in my chair yesterday, but when I came out of class, was nowhere to be found. Instead she had apparently "gone for a wander round the building."

I was meant to have:

a computer and a printer

2 comfy chairs for the 2 main libraries I use

help getting to and from class

And I have NONE OF THESE THINGS properly set up.

And my reading list is so intense here can you imagine what it's like Oxford, the most intense courses in Britain---but instead of being able to concentrate on it, I'm absolutely demented worrying about getting out to places, and living in totally inaccessible accommodation(5 sets of firedoors to pass through to get to the street from my own flat).

It's SO demoralising guys- I pushed so hard to get here but it feels like certain groups are pushing harder to get me to leave.

I'm not even enjoying my studies now. I feel like such a failure, and what makes me livid is that this isn't my fault. none of it is MY fault.

And worse still is that regardless of whose fault it is, if my work isn't done, then it isn't done and that's all there is to it. If I were a tutor and a student came to me and told me they hadn't done their work, I'd be pretty miffed, even if it WAS for a genuine reason. I don't want my tutors to think badly of me- I am trying SO hard. but I'm not getting the help I need.

I just keep thinking about how lonely I am here- and how I know almost no one. And how I've not even got time to socialise, or to get to sleep before 2 or 3 every night with the workload....

I need a hug and there's no one to give me one.

And on top of all that, the nice new cardiologist promised me on the 1st of Octboer he was sending me a prescription for Flourinef through the post and it still hasn't come. So I've been battling with betas and midodrine (you know how bad those things are for me!) I'm seeing him on Friday because I've got another TTT, but I don't even think he will do anything to help- I've a terrible feeling that this is all going to be like London- in that they watch it happen but don't do anything to help

Sorry to be less than jolly, but I've tried SO hard here and I really feel SO low. I've been trying to laugh and joke with the people on my course so they don't see how low I am, but I've told them about the rubbish time Disabilities have given me.

I want my friends from st Andrews to come and give me a big hug. I feel SO alone here.

[Dizzy Dame]

Persephone,

I'm so sorry things have been poopey for you. Keep your chin up!

Have you tried calling people you know? I'm here in Georgia from Hawaii and don't know anyone, so when I get lonely I call people. I know that doesn't substitute a hug from a friend, but it may help you get through this rough patch.

And just think: You're at Oxford, one of, if not THE most famous school in the world. You had to fight to get where you are, and you're probably going to have to keep fighting to get where you need to be. I just know you're going to beat this and come out on top.

I'm sending a cyber-hug your way. You can email me any time if you need to talk.

Hugs,

Lauren

[briarrose]

Persephone

First of all I have the shakes, I call them tremors. I often have them worse on my right (dominate hand.) Sometimes so visibly bad that people ask if I'm ok. I think this is what they call Parkonsonian's that is associated with POTS. Stress usually makes this symptom worse for me.

Hang in there. I know those are hollow words and easy to write but this is just a bad day or a bad week for you and it will pass. You will find a way to overcome your obstacles and avail the situation. College is one of the most difficult things a person can experience. It's not like changing a job your stuck there for the duration or you forfit much time and money.

I see you have a quote posted at the bottom of your page - Intelligence can leap the hurdles which nature has set before us. ~Livy

You are being presented with your hurdles and I know you will heed this important quote and find a way to overcome your hurdles.

Call the disabilities office and speak with the person in charge and get that situation taken care of. It's sounds like a huge burden, stressful and waste of daily time. Make sure you're accomodations are going to be taken a little more seriously and stress your time lines. If you aren't getting help from the person in charge of that office, climb the ladder and go to who ever is in charge of the disability department.

Don't keep worrying about what your tutors think, just explain the situation and concentrate on your studies, not what others think. This is a waste of your precious energy. This sounds a little cold but after years of experience trust me

it's the right thing. You probably won't know your tutors 10 years from now.

Call the Cardiologist office and ask where your script is. Maybe it was lost or he completely forgot. There could be a simple explanation.

Find a few minutes to yourself everyday and do something that you enjoy, whether it's reading a book (Not schoolwork), taking a bath, sitting for tea with a friend. Call your family and see if your mom can come for a visit or someone else you know.

I know college is challenging, I have 3 kids in college and I've heard about their struggles and their fortunately relatively healthy.

Keep your chin up and were all pulling for you.

Good luck

steph

[SunsetParadise49]

Yep, I get shakey too! Sometimes it's not just in my hands but other parts of my body. The one day, even my tongue was shakey!

[melly4]

Persephone,

I have the shakes, too. Sounds like you're having a rough time. I hope things get better for you soon. Hugs coming your way.

Melly

[Sophia3]

Wow! What a &^%$@ day you have had with one problem upon another.

First, yes, I get the shakes in my arms..sometimes but not always...somedays, the whole body tremors...miine is adrenaline based because when I hold out my hands, my doctor says the shakes are quick like adrenaline, as opposed to slower shakes like Parkinsons.

I can SO RELATE to not having a comfy share. My fibro can't tolerate hard chairs. And the runaround you have gotten from the disability folks that are supposed to "help you" is disgusting.

Please do NOT be hard on yourself. The disability folks are NOT HOLD UP THEIR END OF THE BARGAIN. I agee with the previous poster to call whomever you need to get the support you need and DESERVE for your limitations.

Sorry you can only get words from the Internet but take a deep breath, rest and be kind to yourself. Then, make a plan of action to talk with the disability people about your university needs and call your doctors about the missing medicine.

You are in a horribly frustrating and depressing place right now and not getting what you NEED is adding to your stress. So cry, scream and get it out of your system...then breathe some more....(actually breathe ALL THE TIME!! lol) and then make calls to DEMAND some swift, practical solutions to your needs.

Hugs from across the POND and don't take all the mistakes happening around you PERSONALLY. If the disability system is like the one here in this country, they often mean well but there are many hiccups and bumps in the road along the way.

Good luck and get lots of rest.

[michiganjan]

Dear Persephone,

hug, hug, hug, hug, hug, hug, hug, hug, hug, hug, hug, hug.

BIG HUG, BIG HUG, BIG HUG, BIG HUG, BIG HUG, BIG HUG, BIG HUG, BIG HUG!

HUGE HUG! HUGE HUG! HUGE HUG! HUGE HUG! HUGE HUG! HUGE HUG! HUGE HUG!

I also get shakiness. I have hand tremors a lot of the time and sometimes the tremors of my left hand extend up my left arm and this can happen at any time and for no apparant reason. I also get the jerks and these can be all over my body. However, the jerks seem to happen during stressful times.

And here's just one more . . . .

HUMUNGOUS HUG!

And I second Sophia's comment in the following message. You do need better help. The person who is supposed to be aiding you is not reliable. Complain until you get one that is.

[Sophia3]

In response to Jan's add explaining jerks....Jerks can also come in the forms of humans...as in YOUR case the "helpers" who have been obviously letting you down!! I do hope you get all the problems ironed out.

It is indeed, all a bunch of rubbish.

Sorry...couldn't resist the pun on "jerks". I hope you feel better.

Keep us updated!

Sometimes,even in the animal kingdom, there are jerks.

[Poohbear]

I hope things turn around for you and you start feeling better soon and getting the help you SO deserve!!

You are NOT a failure!!!!!!! You are doing your best and I'm confident you will continue to do so. Are you able to decrease your class load any?

I agree with Steph that you need to try to find some time during each day to do something that helps to re-charge and validate you and your happiness. This is much easier said than done I think. Maybe it sounds silly but I've had a hard time allowing myself to relax sometimes because there is so much work and chores to get done but I try to let myself watch my favorite 1/2 hr show (The Daily Show with John Stewart on Comedy Central) and some days it's not so great but other days it makes me laugh so hard and I really need that.

I hope you are able to find something that helps lift your spirits at least a few minutes each day.

Please follow.... place your left hand on your right shoulder, then your right hand on your left shoulder....now, can you feel your hug??

[persephone]

Thanks guys, I feel better already. And the evil penguin is WAY COOL!

[Aprilmarie52]

(((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))

)))))). Hope you feel better soon!

[taylortotmom]

You're having growing pains sweetie. Meaning, a new environment in a highly stressful and COMPETITIVE place is gonna take some getting used to- but you will. Yep, you've got a lot of aggravating things going on (big time) but if I were you I would just do the "Oxford Dance". When my roomates were gone, I would dance around (if I could stand- if not I'd still do it but I would sit), anyway, I would dance around and sing at the top of my lungs, "I'm at Ox-ford!, I'm at Ox-ford! Oh yeah, oh yeah, I'm special because I'm at Ox-ford, Ox-ford. My financial aid came through and I'm at Ox-ford. I'm so smart. Oh yeah, Oh yeah!"" Feel free to add your own verses- you know "The disability service stinks- but I'm at Ox-ford, I'm at Ox-ford- oh yeah, oh yeah!" Awwww, come on, it's going to be okay I promise. Big hug over the ocean to you..........

Carmen

[Ernie]

Hi,

I don't understand the purpose of having another TTT after you had all the intensive testing a few months ago. That will only make you sicker and harder to keep up with your workload!

[mom4cem]

Sending you a very large long distance hug ((((( ))))). It is very discouraging since you made it this far. Let us hope this is a small bump in the road and that there will be a much more smoother road ahead.

[Lukkychrm42]

HUGS!!! There, that's more than just a hug!

I'm sorry you've been having trouble... especially right now. I hope tomorrow's better for you, and the day after that, and so on!

I get the shakes a lot....my teeth chatter too... not always just from standing, but like when I have an argument with someone (doesn't happen very often) or am very upset, as well.. What they told me at Vandy was that it's the catecholamines going haywire in your body. But- I'm not sure about the one-side thing. if it continues, might it be worth seeing a neurologist? Or could it be part of EDS at all? I'm sorry !!!

Here are some more hugs! *HUGS*

[Guest Julia59]

Persephone------------you are not a failure----your a hero for putting up with all of that---and still you keep trying. Don't give up---all of these problems will be worked out. This reminds me of a movie with William H. Macey---called "Door to Door". It's about a man who has cerebral palsy who has to face many challanges, but with persistence finally convinces someone to hire him to do sales door to door.

He tells the guy who hires him that he'll take the worst jobs if he'll hire him.

At first they guy can't get anyone to take him seriously due to his disability, but then slowly with persistence he get's customers---in the end he ends up getting awards for being the top in sales. This is a true story, and this man is still living and enjoying a nice retirement---and on occasion the company still consults with him.

I'm not in your shoes and I can't imagine how hard this must be for you now---but I want to encourage you that you can do this. Someone needs to put a few firecrackers under the behinds of the disability folks so they can help you be more independent. And yes---you need the right kind of chair to enable you to sit for long periods in the library----as you will be spending a lot of time there.

I hope someone gets off their behind soon and helps you get the things you need to get around better. Do they need a bit bull to scare that doc into sending you those meds so you can function?

I'm also sending you a BIG HUG

Julie :0)