Who is with me?

[Scottietottie]

Hi

I'm still at work - it keeps me busy and dealing with challenging youngsters focuses my mind on tghem rather than on how I'm feeling. During half terms and holidays I go once a week to a trivia quiz at a local pub with friends and have a laugh. Laughter is the best medicine. I'm too tired to do it when I'm working.

On Saturdays I go to the singing group I mentioned and have a laugh. I keep track of what my kids are doing. None of them live at home now. I talk to them on MSN. I keep up with other friends on Facebook and play lots of daft games.

When I come in here - as I do every day - I realise that I don't feel as bad as many people in here. It's when I'm in here I really think about how I feel - otherwise I just get on with it. It's not going to change and I'm going to concentrate on what I CAN do and what I CAN enjoy and cherish the memories of activities past.

I know SjS/lupus has progressed since dx six years ago but in my head I feel better than I did then. In my case - I can actually walk better too and am in less pain which sounds odd but at the time of dx I had serious OA in one knee and a partial knee replacement gave me a whole new lease of life!  I also had deep depression due to an underactive thyroid and since being on thyroid meds - I have my moody days - but a depression that was with me for years lifted - and that has to make one feel better!!

Take care - Scottie  

[gphx]

Pets, exercise, laughter where possible. Doing for others and recognizing one's worth.

[sugarbugar]

I am impressed on how many people on this board can exercise!  It makes me want to try a little harder and see if it helps a little more.  It just seems that every time I do workout on any normal level my dysautonomia really activates. Then, instead of going two steps forward I end up going two steps backward.  I'm just thankful I can do pilates! Heck, I am happy if I can exercise for 5 minutes!  That in and of itself is a success story and I am ok with that!  It's a success!
I also think it's great so many people look to helping others to get their minds off of what they're going through.  I do think that helps!
Thanks everyone!

[Bopeep]

At the moment I have 65 cubic metres of bark to get spred out on the gardens. Hubby and I have alraedy moved 25 cubic metres. Thats a lot of barrow and trailer loads.
What makes me feel good,  is seeing it all in place and knowing I wont have to spend hours and days trying to keep on top of the spring growth.
I am finding though that the body doesnt seem to take what it once used to.

Navy dad I also found out the hard way the difference between being used and being needed. It just re affirms why I am a bit of a reculse.

[LizPetillo]

Exercise?  God bless ya'll .... not a chance for me.

[navydad]

Me either Liz, I do anything I pay for it for days,, I cannot continue to get up at 4am,, in total pain,, sit here with winter clothese on,, something is wrong and I cant get these people to figure it out,, tailbone and that area feew like there on fire,,, I wish I could exercize I really do,, I walk the dog thrugh the yard but thats about it,, can walk along my road,, I;d get killed,, its a state road

[Kerrikins]

Before I got really sick I was an avid runner, and now that my meds are taking effect I'm stArting to get back into it. Also with the weather cooling off we go backpacking a lot, it is a passion of dh and I. So I have that, and day to day life with my 4 kids, and even when I'm exhausted or flaring, I'm mentally ok for the most part. I loved life before I became really sick and after a lot of thought and coming to terms with things, I decided that I still do

[harlin]

My GP told me it was "very important that I walk everyday and keep my mind thinking" She told me to work Seduko puzzles or crossword puzzles. I make myself walk 2 miles a day. No, I don't feel like it but I do walk. I started the puzzles (Seduko) yesterday. I also watch my grandbabies 2 days a week. The hardest thing is going up and down their steps. they make me laugh and cry.
They started school, the 6 yr old kindergarden and the 3 year old pre school. I cried when I dropped them off yesterday because they were crying. It is not fair that they have to go to school and can't stay home and play with mamaw!! My babies are growing up. They keep me moving.

I am scared to death that if I stop I won't be able to walk. I am determined to walk everyday!!

[ErinG]

Music!  No matter how crappy I feel, I always feel a little better when I listen to a broadway soundtrack or watch a dvd of a musical and sing along.  The sound of the vocal harmonies makes my whole body tingle and I get goosebumps.  I get this way when I watch Glee on TV, too.

[harlin]

Erin I love Glee. It is my favorite. Man can those kids sing!!

[Jules48cats]

Hi Sugarbugar

Anodyne therapy?  What is that?  I'd be willing to try if it helps!

It increases your blood flow and can promote healing, but it does not work for everyone.  I looked on-line to fine a place, but the first place I called, You had to be house bound.  So they refereed me.  When I went in They took measurements and asked me a lot of questions.  Then they put a strap just below the knee and a  strap that formed a tee on the bottom of my foot.  Then you sit there for 45 minutes.  You don't really feel anything.  Maybe a mild warmth.  I told myself I would give it a week or two and then if it didn't do anything, i would quit.  But after the first week when they started the balance exercises and strengthen my leg. I could actually move my right toes.  Not like I can the left foot but I can wiggle them and I still do that a few times a day.  It was something really small but it was worth it because they had not moved at all for 3 or 4 years.  And like I said I can walk up and down steps using alternating feet.   I was lucky because my insurance paid most of it, so you know it is an appoved treatment.
Jules

[Patze]

Oh gosh, I tend to laugh all the time anyway (either laugh for cry, and tears hurt way to much!), so I like to do stair stepping (have one of them new fangled machines that help with my stamina (so it's advertised, just wish it didn't hurt so after )).


Patze

[sugarbugar]

Hi Sugarbugar

Anodyne therapy?  What is that?  I'd be willing to try if it helps!

It increases your blood flow and can promote healing, but it does not work for everyone.  I looked on-line to fine a place, but the first place I called, You had to be house bound.  So they refereed me.  When I went in They took measurements and asked me a lot of questions.  Then they put a strap just below the knee and a  strap that formed a tee on the bottom of my foot.  Then you sit there for 45 minutes.  You don't really feel anything.  Maybe a mild warmth.  I told myself I would give it a week or two and then if it didn't do anything, i would quit.  But after the first week when they started the balance exercises and strengthen my leg. I could actually move my right toes.  Not like I can the left foot but I can wiggle them and I still do that a few times a day.  It was something really small but it was worth it because they had not moved at all for 3 or 4 years.  And like I said I can walk up and down steps using alternating feet.   I was lucky because my insurance paid most of it, so you know it is an appoved treatment.
Jules

Thank you so much! I'll have to look into it!

[Rayven]

I quit my job.

I was so miserable and so tired all the time.  I got to see my husband literally a few minutes a day before I went to bed.  It nearly killed our relationship.

I'm hardly bubbling over with energy now but at least the energy I -do- have, I can use to take care of my family and my house.  This makes me feel a million times better.

I also try very hard not to fall into this endless loop of thinking of all the things I have not accomplished, whether they are mundane house things or big things like lifetime goals.  I am not always successful and certainly some days I'm just glued stuck in bad-mood mode.  But some days I can see my daughter who is happy and healthy and full of energy, and I see my husband who is successful and feels worthy in his job, and I see my grandfather (for whom I also care) walking around, fed and comfortable and I am content.

My body does not always cooperate with me in the things I want to do.  My grandfather, who was a firefighter for 33 years, who took care of our family at all times good and bad, now has Alzheimer's and has terrible problems walking.  He's blind in one eye and can't see well enough to read out of the other.  His own son treated him so badly that I got a call from a social worker saying grandpa wasn't allowed to go home and would be forced into a nursing home.  Of course I immediately brought him to live with me instead.

I watch the frustration as small memories seem to sprout wings and fly away and there's nothing he can do but watch with a look of puzzled anger.  Thoughts sting at him like angry bees and yet...

He remembers the "old days" like they happened yesterday.  He plays with my daughter and they fight like siblings.  He tells me constantly about the goings on of baseball, and his favorite team, the New York Yankees.  I took him on vacation with the rest of my family up to Wisconsin and put him on a boat that went across the Lake Michigan/Green Bay waters.  For a few moments, the frustration was washed away and his expression became peaceful as the wind and spray caressed his face.

My life is just fine.

[sugarbugar]

Rayven,

I commend you for taking in your grandpa.  I can't believe his own son would treat him that way.  That's horrible.  I can't imagine treating any human being bad, let alone family!  Thank God he has you to make this as a comfortable situation as possible for him.  Your description of your boat ride for him even mad me feel peaceful, even for just a moment.