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Don't give up......come on here and chat with us. Keep explaining your symptoms and what you feel is going on in your body. The people here are great to use as a "sounding board", everyone will listen with compassion (no one will judge). It might be stange to have the support from a group of people that you never met and most likely will never meet, but everyone here is still a support system for you.

Please take care of yourself....and type up a post anytime you need to.....your not alone.

Only good thoughts for you today. :)
 
Zaff, if your own family will not listen to you and help you through this then we will. Talk to us about your feelings. Do not give up. We care my friend. We have all been down that long dark road. You are talking to people here who have overcome the worst that life can throw at them. You can make it too.
 
Just remember the folks on this forum can do more than be a shoulder to cry on. We can give real life advice on how to handle symptoms, family, emotions, etc.

Give us a try. It will not only help you physically, but emotionally as well.
 
Zaff- you've got a lot of folks in your corner. It does not matter that your loved ones prefer to think it is easy to fix your body. We know what you are going through. Talk to us. Cindy
 
:cry::(its getting difficult each week,my bowels mke it even difficult.
 
zaff

i really don't think the sp is causing the bowel problems.
it sounds like ibs, maybe caused by your diet,meds or anxiety or all three.
i do know stress makes ibs worse.
please go see your doctor and they can help you or maybe see a different one if your still not happy with yours. they can give you meds but you need to eat a good diet.
cut out cheap processed foods/any thing in a heavy sauce as they contain high levels of monosodium glutimate/a binding agent.
also white bread causes constipation but wheat in bread ect is very bad for some people.
fresh fruit/veg/whole meal bread/brown rice/pasta are good. also plenty of water.
brown rice is brilliant as it acts as a exfoliator for the bowel and cleans it out.
besides the bowel problem what else is distressing you? please tell us so we can help.
take good care
caroline:)
 
im sure 99.9% i have or in process of having als,my hands r gtting weaker,tht if i try n pick a pillow il drop it after 2secs,hands whn i pick pillow up feel tickly,cnt turn in bed no more,bite tongue accidently whn im eating,swallowing muscles gtin weaker,arms feel heavier n wobbly,cnt use knife and fork coz need left hand to hold table whn i eat or else id mke a mess,in the last week iv been gtin a weird feelin tht i have saliva build on left side cheek n feeling of left lower lip is wet,but whn i chck theres no wattery or saliva there.got married last nov,only problem at tht time was walking with help n balance,now it seems my upper body is affected,afraid i have als,wife will join me in uk whn i put spouse visa application soon,but now affraid tht im nnot how i was whn we got married,im rreally scared,and with me being ill im affraid her visa cud be refused,so once this happens n if i find out i have als,i will definitely end it,maybe even b4 tht,if symptoms get worser,for the lastt 4 months i have been sat upstairs in my room avoiding n gtin isolated from family,thy all think il get over it n socialise with thm,whn the truth is iv been shockd with wots happening to me,and now if i tell thm wot ive wrote here bout my symptoms i dont think thy bleive me 100%,my uncle 15yrs ago startd off in a wheelchair n thn for sum reason was paralysd neck dwn,tht he cdnt even speak apart from mumble,he died 15yrs ago,i remember i was 11yr old n id b sat in his house with his son,and my uncle cud speak,thn whn i was 16yrs old he cdnt move n wud groan n mumble,i was only person to visit there house,as my n my uncle family wrnt speaking to each other over sum family dispute,so now i dnt think my family understand how difficult it ccud get 4 me,i do coz iv seen my uncle suffer 1st hand,i dnt kno if it was als he had,coz 15yrs ago i dnt think thy had a name 4 it,anyway whn i got married last year i was so in luv with life n looking forward,now im very affraid,esspevcially wots happenin to me,sooner or later i will give up.:cry:
 
for Zaff

I am shaking with compassion from reading what you wrote us. I want to say all the right things that will help you.... and hope I don't say anything I shouldn't.
Are you now only about 26 years old? You said you were 11, 15 years ago? I am so saddened by your experience with the uncle that died, but it tells me that you are a very special person to be able to care for him like you did.
I know you can muster up the courage to face whatever you have coming in your life. It certainly is a shocker to have these symptoms. We are all wanting to live our lives to the fullest instead of limitations. Once you get through the grief, things will get better.
I hope you will come out of your room and talk with family and friends about your wishes. Let them help by providing your needs along the way and helping you to do all the things you enjoy. Your wife should be your closest friend, and after she adjusts, she will likely love you just the same. You are the same person you always were.
My husband and I are 60 and only married a year and a half. We are still newlyweds and act like it too! It doesn't matter what trials we go through.... we will go through them together. I love him with his Bi-pap on, we hold hands when we walk together so that people don't see him stumble.... You will see that things can be worked out.
It is tough. Tougher yet if you are very young. But you have come to the right place to talk and vent and cry and ask questions. There are so many friends here... all kinds...
with all kinds of caring... just waiting to hear from you. May you find the strength you
need, and please plan to go on and on. Life is precious. M
 
zaff

you need to phone your neuro's secretary,if you don't know the number you can phone the neuro department and ask to be put through to them. tell them how bad you have been and if you can be seen sooner. or you can see your doc to phone up or go to a+e department. tell them all how bad you feel psycologically as well.
i can not understand how some familys are so uncaring, you need support and help from your family and you must stress this and how bad you feel.
immigration will not discriminate because you are ill and refuse your wife a visa.
you need to keep posotive thoughts of your wife in your head and keep telling yourself that with help you can cope with this. theres a good chance it's not als and even though you may never be well again like all of us here, you can have a good quality of life it just takes a little more work than able bodied people.
you need to get help tomorrow, please promise you will do this.we care and your wife and i am sure deep down your family does, you have to believe that.
take good care
caroline
 
For everyone's information there is a spell checker program at the top right above the smilies. It is the one with ABC on it. Use it after you enter your message and it will correct any miss spelled words for you.
I hope this helps.
 
Not to get off topic....

But my "ABC" button is always "grey'd out" and I can not click on it.....am I doing something wrong?
 
If you are using Internet Explorer try clicking "tools" in the top bar and go to IE Spell. If you do not have that you can download if from Microsoft as an add on for IE. For some reason I also cannot use the spell checker but added the one from IE and it works great.
 
Zaff- I think Marjorie and Caroline said it all. Please do not give up on yourself. You are not alone. Cindy
 
i am 33yrs old now,btw i wasnt my uncles carer,but was around his home throuot my teen yrs n seen 1st hand the struggles,my bowels r tkin over me tht now i get scared to eat,cn any1 help me on how n wot i cn do to get succeful visa for my wife to join me in uk,im affraid it wud get refusd,since i dnt n cnt work,thnx.
 
Hi Zaff,

Gosh I don't even know where to begin. I am so sorry for everything you are going through, and at such a young age. I am 26, and my father was diagnosed w/ PLS last November. It seems like he has already given up...and may I just tell you that is the hardest thing to see. We've always looked at my father as a fighter, and I'd imagine that your family has seen you to be a fighter throughout your life as well. I've read that you don't think they believe you and such, but maybe, just maybe they are seeing that you are giving up, and that is what is so hard for them to believe? I don't mean this in any way, shape, or form to be offensive...just trying to give you another perspective on it. If your family truly just doesn't believe your diagnosis, or doesn't believe that things are as bad as they are, than for that I am truly sorry. I can only imagine how hard this is on my father, and you, and everyone else that is dealing w/ this disease...but might I tell you that the hardest thing to watch, is someone that you love soooooooooo very much just give up. PLEASE do not give up! I truly do believe that God has his reasons for everything, and although I do not understand why any of you are having to go through this, I just think we must keep our faith. Perhaps this is his way of testing our faith...but you can't let it shake you or defeat you! You are stronger than that, whether you feel like it right now or not!

As for your wife getting the visa, I have no answers, but I hope that works out for you very soon. I know it would devistate her to know that the man that she married and loves so deeply has given up. You've got to fight this, if not for yourself, for her and everyone else that loves you!

God bless you and I will be praying for you!

Stephanie
 
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