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I am 25 years old, diagnosed at 14 with AS. In the last couple of years it has gotten progressively worse, in my legs and feet. I can bearly walk in the mornings and through the night.
I work in a special needs school and sometimes have to deal with aggressive behaviour, the struggle of getting to work, functioning all day and the risk of getting hurt is getting too much. I love my job but am not sure I can cope. What do i do?!?!😖
0 likes, 25 replies
vlad5551 alice03428
Posted
Hi.First what I advise you to do. It's diet,no meat fish,milk,and white bread,pasta.more fruits and vegetables.do not eat after 6pm.If you can research for no starch diet.it will help.
alice03428 vlad5551
Posted
I have never heard that this could help, i will look into it. Thank you
gloria55119 alice03428
Posted
Hello Alice, maybe you could find a way of still keeping your job by talking to your boss about the problem you have and ask if it's possible that you could have a desk job..instead of risking injury or pain with the present position you have. Your boss wont know until you explain the difficulty. You never know he/she might just understand and help you. It probably wont be as "hands on" as you would like but at least you could remain in the "loop" of your much loved profession. Good luck and hugs...G
alice03428 gloria55119
Posted
Hi Gloria.
Sorry i am still getting the hang of talking to people about this, ive kind of struggled on alone mostly.
I have been really open with my boss and although there isnt specific desk jobs i can do she has refered me to occupational health and offered me part time, any time in the day that suits me (not mornings!!!) Shes been brilliant and really kind, i had a bad day yesterday and she sent me home and to the hospital
ive been signed off for the 3rd time in a year! So now is the time to look for changes. I am going to do all i can to remain at the school though as i love it.
Thank you for your kindness, this is a love sight! I hope you aren't feeling too rotten today. Hugs to you too!!!xx
gloria55119 alice03428
Posted
Hi again...just had a thought...occupational health...does that cover craft and art for those who are challenged. How about getting on the "net" and look for subjects that interest you in that field.. You could start a new theme with your special needs people. Drawing, painting, recycling bit and bobs...etc....it is endless and so rewarding.
Gosh, I'd love to join you...we could have such fun...Think more gently about yourself...don't give in to this disease..you are so valuable....
alice03428 gloria55119
Posted
Hi
I hadnt thought of anything like that but yes what fun that would be!!!
Thank you, people are so kind on this site!
We all continue to smile and hopefully remember how valuable we all are, you sound like you're a very strong, happy person! Keep it up x
gloria55119 alice03428
Posted
A few years ago I got involved with sending the right messages to kids about the danger of strangers...and we made a puppet show....It was crazy and the adults had as much fun as the kids did...in fact they showed us about their feelings and fears. You could adapt that to another situation according to the skills of your students...( and adults of course )...you might be pleasantly surprised about what comes out of it....such fun and laughter all round..Laughter is the best medicine.
Yogee alice03428
Posted
alice03428 Yogee
Posted
I have looked into mainstream education but its just not what i want to do. My heart lies with special needs! But i might need to keep an open mind about this for the future! X
Indigoods alice03428
Posted
If you could answer that question, I would love to hear it. Same problem, different situation. I'm an electrician, or was, kinda in between at the moment. I get to tired working that hard. Can't work over my head. My weight limit, lifting-carrying has halved maybe less. Can't use drills, feels like my wrists are going to snap. The more refined dexterity that I require just causes me to shake-alot. Using a mouse or even a pen is tough, sometimes yes, sometimes no. Shaking and electricity don't go together-at all. One thing you said that struck me, was the "risk of getting hurt". I want to continue my business but I really, really run the risk of hurting myself. To the point where I could kill myself by accident. I worked so hard to become a master electrician and now I can't use it. I have made a big change in my work life, I now work as a jack-of-all things electric at a supply house. Making 1/3 what I used to make. It sucks, but what Gloria said makes alot of sense-she has a habit of doing that.
Do yourself a flavor and keep this website. It really changed my life, I don't get much support at home, however what I have found here has helped me change my state of mind. I don't feel...I guess you could say.... hopeless or lost as I was a mere 6 months ago. Ask as many questions, or just complain, all ears on this end. Wishing you the best, Indi
gloria55119 Indigoods
Posted
Hiya Indi...thanks for the compliment...but I don't listen to my own advice..
Late last night I got a phone call to say that a friends daughter -in -law had a serious motor bike accident and he was sending her to me....a 4 hour drive. Having been a nurse here for 20 years..I said sure, I will wait up for her. Waited a long time and then I got a text message to say that she would be here sometime today....OK, I messaged back. I'm still waiting for her. So what I'm trying to say with this..is...It's so hard to say no...sorry I can't help as I'm now in a wheelchair myself. Once a nurse always a nurse..no matter what. Our professions are a "calling" and we still need what we are good at to keep our self esteem up....I guess we have to find a seemingly never ending way of doing what we can with what we have...compromising continuously. At the moment I am sulking big time..coz all I can do today is sit in front of the idiot box....wishing there was something interesting instead of repeats all the time. But..here in the forum at least we can make somebody happier.....lets just be content with that.....keep sending love on the wind and hugs thru' cyber space....Hugs and love all round to you all. G
alice03428 Indigoods
Posted
Hi Indigoods,
You definitely sound like your struggling too! Its a horrid time when you have to start thinking about changing things in your life that you love. I am going to plod on for as long as i can, and I have now been offered part time if that would help me. The risk of getting hurt is huge and thats why i was sent home yesterday and feel like a burden to my team as they feel they have to protect me almost. I am trying to get used to feeling a bit useless! I am however hoping (perhaps foolishly) that something the rheumatologist tries will help me to feel better!!! This pain at 25 is ridiculous and i am ever hopeful that this isn't just my life now!
I am sorry you have had to give up the job you love so much! But you are still smiling and thats great!!
Take care xx
Indigoods alice03428
Posted
Anytime! Just to let you know, I ended up on methotrexate(basically chemo), the side effects are scary as h#ll, but I'm gonna have to admit. That it does keep things at bay. Unfortunately you will always wear this albatross around your neck. Keep looking into meds, bug your doctors, and it's hard to find one that actually knows anything about this disease, as many here will confirm. One thing-communicate with anyone you can, friends, family, all of us. That alone will help tremendously, I did, and it worked. Thank godness- I don't get much support elsewhere.
Hold your head up, keep moving forward! Indi
PS-the fact that your thinking about the changes you MAY have to make, I feel is a step in the right direction. You are aware of where you are, right now. I think that's awesome. I just stopped thinking and feeling and I'm 43. So if your 25 and thinking about this like your are- I'm impressed! Peace
Indigoods gloria55119
Posted
Dude, and yes I'm Dudeing you, you may sit in a wheelchair but your advice and support is amazing. " the least we can do is make someone happy", not only have you made my life happier with words but you have helped change my perspective. That is definetly something, something big in my book. I am not easy to impress, by most standards. Even though today is one of THOSE days, I can tell you, that you are doing something. Right here, right now.
Always my best, Indi
Didn't register or figure it out that you are a nurse. No wonder why you have that bedside manor. lol. NOW it makes sense, sometimes it takes me awhile.
gloria55119 Indigoods
Posted
Oh Indi Indi...I'm crying now...yes nurses do cry..usually in private. I just wanna love you all...and yes make smiles and sometimes laughter for all of us. We are on the same "ride" together....and that means to love and support each other thru' our ups and downs...Thinking of naming my house " Upson Downs "...what more can I say...need a tissue....Hugs and big love always...G
gloria55119 Indigoods
Posted
See Indi my friend...you can do it too....sending your love to us all...and it's good therapy...Love you guy..G
ihavenonickname Indigoods
Posted
43!!!?? that is barely warmed up!
Alice, I keep telling him...big bucks building robots Bott Wars!I want to turn on the television next season and watch Indi's bott wipe out all of the other botts and win! He will need a name forthe bott, should it throw out fire, have a super fast cutting blade, maybe a swift hammer....
I can not build a robot...have a double outlet and have no idea why only half if it works...
hugs
Indigoods gloria55119
Posted
OOOhhhh...don't get me started...they better be tears of joy. Hoping my words were right. You'll always have my vote.
Indigoods ihavenonickname
Posted
Barely warmed up...with this thing we all share... I think barely burned out is closer..lolol.. Give me a while for the robot name, I'll think of a good one. I'm thinking that it would shoot lightning bolts and spout sacrcasm at my opponents...Psychological warfare. lol
ihavenonickname Indigoods
Posted