[Blessings2You]

I've been "sick" for about five or six years, diagnosed for a little over three. I've moved beyond denial (mostly) and am adjusting and adapting.

These, however, are a few of the concepts that I'm not sure I will EVER get used to.

Having it take all day to spend a couple of hours on a project. Work 20 minutes, rest 40. Repeat.

Remembering not to say "yes". Saying instead, "if I'm able" or "if I'm feeling up to it".

Reading something I've written and finding errors that I wouldn't have made in third grade.

Not being able to just up and go. Having to grab an assistive device before I can even go out to the bird feeder or walk next door to church. It really hits me hard when I see somebody walking along the road or sidewalk just as if everybody could.

What about some of you who have had MS for a while? Are there things that you still haven't quite wrapped your mind around?

[karousel]

Two months ago I would have said there was nothing, but these past few months I haven't been feeling well. Now I realize I need to learn to say NO and know that I am allowed to take a nap or just a break any time I darn well feel like it. I need to understand and not feel guilty that instead of pushing myself to do it all, what I really need to do is take the time to rest when I need it. Since I have had MS for over 20 years, since I was a teenager, this has just been a part of my life and I have always worked around it. So it will take me some time to grasp the concept of putting myself first and taking time for me.

[weegot5kiz]

I am not sure I will ever be able to fine tune this MSbs, I too have to say no more often and there are a few leetle things that just argh ugh egads lol the spelling errors or grammar errors just amaze me sometimes, i forget words in the sentence, amazing how much more sense my post make when I add all the words, just take it one day at a time you me and a few others only been dx for a few years and sick for a several more, maybe someone with it a lot longer can shed some light on this will there always be these things that we dont adjust to or what?

BTY

[lady_express_44]

Originally Posted by Blessings2You

Reading something I've written and finding errors that I wouldn't have made in third grade.

That one annoys me more than anything else, B2Y. I read and re-read everything I type, but somehow when I go back, typo's, spelling, grammatical errors, missed words, etc. just magically appear.

The other thing I have never got (<--should that be "gotten"?) a handle on, is when things go really bad (again) for a while. When I am AT a new crossroad, I don't cope that well at the time. I think I am afraid I will get stuck at my worst ~ forever ~ but once I adapt to my new "norm", I am fine again.

Cherie

[ali12]

Thank you ever so much for posting this - I found it really interesting and i'm so sorry that you all have to deal with all of this!

I don't have MS but do have a conditon that is fairly similar in many ways. Like most of you, I found it VERY hard at first to adjust to having to do things in a different way and not being able to go out with my friends like I wanted to be able to.

I was in the denial stage for a very long time but eventually, my Physical Therapist told me that in order to try and get somewhat better, I had to have a positive attitude to try and go through all of the exercises they expected me to do. Eventually, something clicked and I realised that I HAVE to have a positive attitude and try and accept that I have this disease and try and get on with my life the best I can. That's not to say though that I have learnt to accept this disease - I honestly don't think I ever will be able to but I have learnt to try and cope with things in a better way and to have a positive attitude and outlook on life.

The main things that frustrate and hurt me are:

That i'm not able to go out with my friends - that REALLY frustrates me and I guess at times, I feel really bad that I have this disease at my age (13) as I feel that I should be out enjoying myself and having the time off my life but I am stuck at home as I just don't feel well or it is too much of a struggle to go out!!

That I can't remember things - I sort of feel like I am 90 years old instead of 13!! I am forever forgetting things which makes it really hard to concentrate on things!!

That I can't attend a main-stream school and that my friends have sort of forgot about me. I get VERY frustrated when my old "friends" see me and they don't even speak to me and just blank me because I look different to them and can't do all of the things I want to be able to.

That I can't type very well - I am forever having to go back and edit things that I have typed due to problems with my hands!!

There are lots more things that I am frustrated with and that hurt me but they are the main things I think. I am somewhat able to control my problems better but I still get very frustrated and have my bad days. I honestly think though that it is OK to have bad days and complain, just as long as they don't last for a very long time and that you are able to snap out of it!!

My Psychologist has given me lots of exercises and breathing techniques to try and help me come to terms with dealing with this illness and I DO believe that they have helped somewhat. Of course I am frustrated (who wouldn't be!) but I know realise that things could always be so much worse and that in many aspects of life, I am lucky!

Thanks again for starting this thread and I hope that came out right - sorry if i'm rambling, it's nearly midnight here and I can't sleep again!

[weegot5kiz]

Alison you are, by far the smartest 13 yr old I ever had the pleasure to know. You are a very smart young Lady, I admire you and your post and your intellect, tell Mum she did a real good job, your post kind of shows it doesnt matter the illness, we all share some common bounds memory movement breathing etc... no matter what they call it we are all in this game together, and this site just helps so much, as do the members, and it is a daily struggle that we all must meet with both hands everyday,

[woodhaven]

Originally Posted by weegot5kiz

Alison you are, by far the smartest 13 yr old I ever had the pleasure to know. You are a very smart young Lady, I admire you and your post and your intellect, tell Mum she did a real good job, your post kind of shows it doesnt matter the illness, we all share some common bounds memory movement breathing etc... no matter what they call it we are all in this game together, and this site just helps so much, as do the members, and it is a daily struggle that we all must meet with both hands everyday,

Frank, I could not have said it better. She is too wise for her age. I admire her greatly.

[SallyC]

After 40 some years, I can wrap my brain around all of it, Blessings, but my heart is another matter..

[ali12]

Originally Posted by weegot5kiz

Alison you are, by far the smartest 13 yr old I ever had the pleasure to know. You are a very smart young Lady, I admire you and your post and your intellect, tell Mum she did a real good job, your post kind of shows it doesnt matter the illness, we all share some common bounds memory movement breathing etc... no matter what they call it we are all in this game together, and this site just helps so much, as do the members, and it is a daily struggle that we all must meet with both hands everyday,

Thank you SO much Frank for your kind words, I really appreciate them and they mean a lot!

I guess having this disease has made me grow up a h*ll of a lot and I probably realise things that most other teenagers my age wont know because of having this horrible illness!! I honestly don't think though that I would have gotten through it all without all of you guys - you are all the best friends anyone could ever wish for and cheer me up on my bad days and I could never thank you enough for that!!

You are so right - it doesn't matter what illness we suffer from, we are all in this together and have one thing in common - we all understand what everyone is going through and want to try and give support in anyway we can!

Thanks again for your kind words - they mean a lot to both me and my mum!!

[FranksAngel]

i admire all of you for what you all have to contend with each and every day ... would my resolve be as strong as ya'lls is ... i don't know ... would i be as optimistic ... again i just don't know ... what i do know is that each day i come here and read what you have posted and am always amazed ... you all are friendly, supportive, have a great sense of humor, and haven't forgotten how to laugh ... you all hug each other and lift each other up when down ... to me you all are winners