Hurting today

[Sandra]

Hi everyone hope you are doing ok. I'm hurting and so tired of it. I just feel like I could sleep for an eternity. Problem I just can't. I was on a higher dose of prednisone for about a month in Dec/Jan and now I am in the pred withdrawl pit. I ache and I am sooo tired but the insomnia is relentless. it's been going on for about a month now and finally today I have just hung up my happy face and am content to lay around and be weepy. I just have to find an alternative to prednisone. It's a miserable fair-weather friend. I was lucky to get an app with my rhuemy for Mar 5, she's just got to do something. Shoot spring is coming and I am a mess and i want my life back. I am wondering if i should just give in and take what ever I can to sleep, I am not usually a pill taker, just my regular have-to's. It's hard enough to cope with the pain and fatigue without being dead on my feet too.  Sandra

[Pooh]

Sandra, sorry to hear you are in so much pain today.  Me too.  I would give anything for just one day of feeling normal again. 

I wish I knew what to tell because believe me I know how you are feeling.  Even though we are not alone in our pain, it seems to help a little knowing we aren't totally alone. 

I hope your doctor gets you back on an even keel soon.  Until then, please do all you can to rest and hang in there.  I hope there are better days coming for all of us.

Hugs, Pooh

[JJ]

Sandra,

Don't give up...but take the rest you need...I know there are days

that i just have to rest up and regain some energy...I have had to

do a lot of changes in how i think since this came along..like

the world will not stop turning if I don't get it done right now..

never been much on put it off way off thinking...I call it

prioritizing...hope things get better soon.

[wednesday mc haggis]

sandra

a good bubble sometimes does us good, saftey valve methinks.

pain id like to know, till they get the Dx comfirmed i have no meds but cocodamol , cant take the anti inflammoties they make my stomach burn, i ll say again.

i looked at alternative pain lessening, and did my reiki 1 course, my pain and upset have truly lessened, and while ist no miracle cure i cannot say how much it destresses me and makes me feel able to cope and time my pain is so bad, i tune into reiki and honestly can say it reduces my pain by around 30% which just lets you get some life, the fatigue seems to be exacerbated by the pain if im sorer im more tired, i sleep well but it doesnt help, reiki has given me so much and for me it works and its side affect free and easily transportable the ability to tune in is always within me, i know reading posts joe find sit very useful too.


T x

[Patze]

Hi Sandra,

I'm sorry that you're feeling so bad!  Can you give your primary a call maybe and see if he can help?


Patze

[Tinker]

Sandra, you and I  are suffering from the same thing.  I HATE steroids.  I won't take them agian uless it's a life and death situation.  It's just not worth it.
I didn't do a lot today but went ot the store and cooked dinner .  WIPED ME OUT and now I can't sleep.....again.

eye appt went well.  She said I have fingerpint mapping. called the med student in to visualize.  said my eyes weren't that dry.  She also recommended the baby shampoo to clean the eyelids at night.  They are tending to be red when I wake up.

I am constantly amazed at all of you though and you still manage some how.  I'm just tired, worn out, sick of being under the weather.  It wears you down. 

People who are well just don't know what they have....they tend to take it for granted.  What I would give for a healthy body again.  Ahh, those were the days.

[JJ]

True..well people don't get it neither do well children. My BF's son
said "I wish I had SJ so I'd have a Dr excuse to drink in class."

I just wanted to rip his head off...how could you wish something like
that. I had to go to my room and calm down because I litterally

could have! Wow...with all this I can't see it so it doesn't exist
attitude makes me wonder how so many still believe in God.

JJ

[navydad]

This disease breaks us down to the point that sometimes we just want to give up,,, many times I have questioned the existance of God,, asking why am I so sick, why cant I feel normal again,, why have a quality of life that is nothing but a day of pain and then have a new symptom pop up, I have people tell me,, hey,, there are si cker people then you,, this is true,, but i;m not one of those other people,, I;m in that part of my life where I am questioning teh existance of God, but someting drags me back to him,

[JJ]

Navydad & Sandra,

All I do know is faith holds us up no matter what we believe in. I have
faith in myself as well...I'm not going to let it beat me..it will knock

me down on my butt on a regular basis..but I'm going to get up on those
not so bad days and say HAHAHA you didn't get me today!

I am having one of those thighknee episodes..I'm not going to push it
to keeping me on my butt any longer than I have to. Before I would

push myself and it just made things worse and I was on my butt longer than
if I had just give it a rest. Working Smarter not Harder is the way to go.

Don't give SJ or anything else that pops up the power!

JJ

[Chana M]

Hi Sandra

I'm so glad you posted about how you're feeling.  We all have those days, but just being reminded that we're not alone makes all the difference. 

Your Sjoggie family have come up with some great ideas for those unbearable pain days. I find music, warm baths, or even just a hot water bottle by my toes can help.  Just little comforts you can get easily.  It's when the miseries hit too that it gets harder.  Then you just have to do things hour by hour, and hold tight to yourself and what you believe.  A chapter of a favourite comfort book, the most romantic scene in a favourite film, just one little chocolate ....

There were some great T shirt slogans posted recently and my favourite was 'I'm sick and tired of being sick and tired'.  Sounds like that's where you are too.  You say that you 'want your life back' - and we all know that feeling.  When I realised that I was still living 'my' life but now it looked a whole lot different it helped me make the adjustments I was fighting.  This is your new direction; it may be a bumpy road but you're there with new friends and warm smiles.

Hope you have some better days soon.

[mim]

Hi Sandra,

I agree with Chana about the life bit, she is right in what she says about you are living your life, what you yearn for is your old life and this is never going to happen.  It is not easy but if you are able to bring your mind around to accepting that things are never going to be the same again and what you have now is the starting point for your new life then it will be one less  thing to worry about.

We all drive ourselves crazy yearning for the past, we can't have any more.  We all have very little energy to spare and to spend it worrying about something that really can not be changed, you will be amazed how much emotion is expended longing for the past, absolutely tires us out.

I know it sounds quite harsh and it truly is not easy to do, but believe me, from someone who did it for a long time, it does help once you let it go and accept what is happening now and try to learn to live or sometimes just cope and exist with what you have now.

You have the disadvantage of also not being able to sleep, and all will agree this can be the most debilitating symptom of all, regardless of the cause. All the suggestions made should be tried and you may find one works for you.  I also am not a great pill taker and would not entertain sleeping tablets as at that point I had a 5 year old and did not want to take the chance of not waking in the night should he need me.  I instead decided to try some herbal relaxation/slumber tablets (I checked these with my pharmacist first) and found they worked for me.  They relaxed me enough to allow me to drift or naturally to sleep but still allowed me to wake completely and be alert if needed.

You have the opportunity of taking the advice offered, sifting through it and using what you feel is right for you.  Please make use of it there are lots of experienced people on here who are extremely willing to share and support you.

Please give yourself a chance, you are allowed to hang up your happy face and be what you need to be at the moment but please make sure you are making the choice to be miserable and not that it is the sjs taking your choice away from you. 

I always think that so long as I am making the sjs  put up with me doing what I want rather than me putting up with the sjs doing what it wants and me tagging along behind I stand a chance of winning the fight.

Mim xxxx 

[Sandra]

You know I think for the most part I do well at coping, there are just those days, weeks or months when no matter what choices I have made or given in to just doesn't work.
There are things in life that one just has to do sjs or not. On these days no matter what I know if best for me cannot be done.
Today I have to take my mom to the Cancer clinic, she has had the miserable disease since 2005, this Dec last we almost lost her to pnemonia. It is no doubt why I have been sick for the past month. The Dr's thought it was her cancer at first. Now she's almost back to her old self and determined to start treatment. It is only palliative to prolong her life but she wants to try it. Who wouldn't? What other choice does she have? if she doesn't try it i know she will always question her choice. My brother's and sisters totally bail on her, I will never do that but here I am the one with the least strength dealing with this alone. I am so torn up about that. How could they do that to her? How can they do that to me? How am I ever going to get her through this without killing myself? I've been around this track before with my dad, it's not for the weak.
Say a few prayers for me guys, i sure could use them. Thanks, Sandra

[JJ]

Sandra,

   I would like to point out to you because I don't seem to think you see it is, those

who do not try are the weak ones. As far as I can tell from what you say about your siblings

you ARE the strongest one available to your Mom...and the two of you draw off each

other...by you being there as well as her being strong and fighting for her life.

Parents lead by example..hats off to your Mom for showing you to fight and not

give up!!

JJ

[wednesday mc haggis]

sandra

my thoughts with you and your mum, i helped nurse my gran with cancer, while she sint my mum, she was the closest person to me and i thought of her as mum. I know how horrible a journey it is, and how exhausting emotionally and physically, being  anurse in terminal care for 20 years i know how much work it is also. Your siblings have chosed a path they will one day need to live with,your mums lucky to have you and i think your stronger than you realise, look what youve got through so far, and darn straight there will be days weeks months of feeing under par, your human not machine , everyday you muddle through somehow, sometimes by the seat of your pants, but i hope daily the strenght to get through comes to you and your mum, she has you and thats a blessing

T x

[Sandra]

Thanks guys, you have given me some much needed support, seems in my world there isn't much of that. I just get so scared that i won't be able to keep being there for mom. My body just isn't good at this stuff, I do have my mom's determination but determination as you all mentioned in the first few posts of this thread can sometimes just get you into a whole big lot of trouble physically. The fear of mom having to walk this road alone because my bdy just can't give anymore just eats me up. After today i have to find some other support, I just cannot count on my family. There are 10 of us! How on earth did I end up the strongest () one? I don't feel strong at all, I feel like running far and fast too......but it's from the cancer not from my mom. Sandra