RE: Re: Somebody put into words what it feels like to live with MS...take a look!

[Guest guest]

Hi,

My very

best friend, an Internet friend, has MS. Since the hot weather this summer he

is really struggling with his health. He became even more tired and more often exhausted,

his bladder problems increased, his walking and other movements became less and

less. Unfortunately his health decreased significantly over the last few

months. About 6 weeks ago he started taking LDN, but so far he only has the

side effects of worse sleeping and lots of spasms. Last week he got a flu shot

which took him down for a few days with fever, headache and an entirely

miserable feeling.

Yesterday

he told me he is totally desperate and today he is not feeling any better. He

has got a family with young children. He normally is quite strong taking his

disease, at ‘good days’ even approaching it with a great sense of humor and making

fun out of his situation. Yesterday and today he is entirely down-hearted.

I feel so

pity for him and I’m thinking my head off to see how I could help him, but I don’t

know what to do or what to say. Does any of you have any hint what to say or

what to do, I would really like to help him, to cheer him up but I feel I’m not

able to.

My

apologies for making such a terrible spam of this email, but I’m really seeking

your help to help me helping him …

Saskia

-----Original

Message-----

From: Cabbie54@...

[mailto:Cabbie54@...]

Sent: maandag 3 november 2003

16:59

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spotlight_ldn

Subject: [low dose naltrexone] Re:

Somebody put into words what it feels like to live with MS...take a look!

Remember the

email I sent out on that women who was in distress. Well, as always,

after I posted it, all came to the rescue. I just read the content below in

connection with that email. She has put into words which I feel, if

I might presume, how we all feel most days.

Cabbie

As

said, and Trish then posted to her, I think that most, if not all, of us

have our times when we just get sick and tired of MS and all that it brings in

life experiences, pain, and medications (and their side effects).

We all want to shout: " Stop the world " ! " This is not the life I

ordered. "

But we and the world carry on (and on and on, it seems at times).

These are a few things I think we need to arm ourselves with, in no

particular order:

* doctors who care, and who will listen to us and will explain things to us

* a religious faith or a belief in something spiritual or the special

importance of human life

* a sense of humor

* if at all possible, a pet........lots of laughter and unconditional love

* friends.....be it those who have stuck with us or those on the Internet

* a good outlet for venting......here is great!

* A family who learns about MS right along with us....doing research

together, reading the same books about MS and talking about what has been read.

This one is a toughie, I know, especially for some, but keep trying to educate

them as best you can.

* Getting outside in the fresh air each and every day.....even just for a

few minutes down to the gate and back or sitting on the balcony for a bit;

likewise, getting dressed each day, even if it is just into comfortable

lounging clothing. (spending life in night attire isn't going to ever

raise your spirits)....well......you KNOW what I mean and don't mean,

necessarily, LOL!!

* Getting the right help with pain control......get your name on a wait list

for a Chronic Pain Clinic (ask around for word-of-mouth

recommendations)...lists may be long, so better to be on it than not (can

cancel if things improve)

* A good pharmacist.....who doesn't mind answering questions, even if we have

asked it from him/her before, who goes out of the way for us (e.g. when my

neuro phoned in a Rx for the high-dose prednisone, my pharmacist phoned me

right away and got one of the store employees to quickly deliver it to me so I

didn't have to go out for it)

* a stubborn streak that just won't let us give up; will make us pick

ourselves up and keep fighting the MonSter; a fighting spirit that always rises

to the top

* a

thickened skin so that the idea of others seeing us using mobility aids,

or the fact that people may stare at us or ask us mighty strange and

annoying questions, does not ruin our day

* patience.....lots and lots of patience

* willingness to do research about MS and to learn as much about it as we

can. We must be our own best advocate

* advocacy for ourselves with doctors, or finding someone to attend

appointments with us

This is getting too long for me to keep at it,......maybe some of you can

think of other things that give us the strength and courage to persevere.

All the best,

Look for joy in some part of every day!