Hello,

You're not alone I promise, chronic illness coupled with exhaustion & pain are not easy to cope with.  It takes time to learn about your body and how it interacts with illness.  For many of us, we have multi-illnesses......it's been a long time now that I've been ill.  Worked with the diagnoses for another 12.5 years and then stopped in 2010.  So I've been retired disabled now for almost 7 years.  Twenty years is a long time, being chronically ill is nothing one anticipates.....it can be scary, debiliating beyond what anyone ---- most of all those impacted can understand.  It's hard.....on many many levels.

I discovered Daily Strength back in the fall of 2010, it was literally an answer to prayer.  I sat in the very same spot I am sitting in now, vert sad...too ill, lonesome....bowed my head and asked God to help me find the strength daily to manage life.  Immediately after that the words Daily Strength popped into my head......on a whim I typed those two words into Google and that is how I found this site.

Not long after I found this board and some of the other boards, it felt like I had come home.  To people who understand, shared information, lent support......shared hugs, laughter, tears and provided compassion.  It was wonderful.  Illness steals so much of our energy that it is hard to be consistent......but I think I was re-energized in a new way upon finding this place......it chased away most of the blues. 

I learned how others coped, I shared my own experiences.  Out there in 3D World I felt lost, dislocated, misunderstood....not just with family and friends but with the medical community so often.  I was fortunate to find an immunologist at the end of that first year of illness......and received a diagnoses of not one, but nine primary illnesses.  It was a lot to take in.....I was too ill to research it and live it.  Every day I just barely made it from point a to point b.  Many days I failed...myself, my family, my colleagues.....over time I was curling up (tighter & tighter) into the fetal position......and yet I still had this tenacious little spirit inside that helped me to keep going.  It was a very weird and often scary existence.....often times I didn't have enough energy to know how weird or how little life I actually had.  I just know my interaction with the world was rapidly dwindling......I lost my social life, I only talked about illness and illness issues.  I lost myself......I lost and lost and lost. 

Sorry I don't mean to turn this into THE I, I, I Show.  Truly I apologise.  I just wanted to come here and say hello, wish you well, offer to pray in care of your journey.......share that I understand.  That I've been through it, that I live it......that while quality of life will change dramatically, you will find with time that quantity is still on your side......that over time as you learn how to cope, rest, do things differently, .....lean into the crashes, beat yourself up less.......that as you learn to change how you life your life to work with your sick body that it will help.  It takes time.....and time as a healthy person is not the same time for a chronically ill person.  Eventually you will learn new ways to cope.....you will learn how to set goals you can reach.  You will find that if you meet yourself as you are right now from this day forward, meet yourself, literally reach out and share your hand, accept what you can do in this moment and let go of what you could do.......you will be far ahead of the game.  I spent a very very long time angry at all that I lost.......which further depletes the limited energy we have. 

I still go places and hear phrases that drive me nuts.  A family member recently walked up to me at a holiday function and told me how "Healthy I looked".......but later I thought about it, compared to how I looked & operated in 2010 I am a lot healthier.  I eat healthier, leaving work allowed me to live the way a chronically ill body needs to live.  Yes, it was scary.......I had ALWAYS worked, always have been and still am a very independent I can do it kind of thinker.  But time is a good teacher.......let time be a friend.

If you're at the beginning of your journey allow yourself time to grieve.  Don't ignore this need.  Over time I eventually learned that for me I needed to give some time to vent out the bad, the hurts and the grief, but I also added in something else......time to be thankful for all the good in my days. The simple things that make life easier....time to give to others around you.  To lend support, help, and hope.

Compassion can be very tough to come by out there in well world. It's not that others don't have real issues, they do.  We don't own the market on grief, but we do have an added component that we need to lean on each other for help in particular.  That added component is that we don't get well, that our lives are radically changed.  With each other's help we can educate each other, share tips, medical information......and also in a place like this we feel like we belong/that we're heard and understood.  The other part of that added component?  Not only are we terribly ill but most people and a significant number within the medical profession don't understand and often times share the belief that our illness(es) aren't real.  This is incredibly ridiculous......hurtful........I find it stupefying.  And even when we find someone who knows what we have they don't know any real tips to help us live with this condition (or conditions).

The format change to DS has knocked me down into a rough rabbit hole, I feel more lost and out of sync than Alice in Wonderland.  I don't think I have truly figured out how this new site works.  The old site was more user friendly, brought us together in a much more comfortable and neighborly way.  You can come in anonymously and over time....if you wish you can gain real friendships.  People you can connect with can (over time) become a part of your 3D (or real world) life. 

Like in anything one needs to be careful, take time getting to know others here......I am happy to share that after being here almost 7 years, I have made some very good friends......we share time via phone, via e-mail, send cards.....and over and above that we understand the realities of the illness.  We don't get all crabby about timing so much cause we know how ill we can all get.......we just try to lend care to each other, and to then just pick up wherever we left off. 

I lost many many friends from my old life.....it felt devastating and it taught me to choose friends very carefully going forward.  ......sorry, I am going on far too long.  Just end of the year philosophising I guess.......with a new year on the way.  Tomorrow a good friend and her husband are coming for a visit.  Here, to my home, they are bringing lunch......they have never been to my home in all the time I have been ill.  I work hard to let go of the hurts and feel good that they are coming.  I think I am more ready to open some of those doors at this stage.....and I really miss some of my old friends.  It's hard ya know??  Hard to let people in that let you go.......I have often wondered how good a friend I would be if one of them became disabled.  If I had never known the life I live now.......would I have done any better?

I like to think so......but I am not certain.  ......I got a hand written letter today from my oldest brother.  A first.......there is something very special about a real letter.  I will read his letter a few more times in the days to come before I reply.  I hope this is the beginning to a stronger relationship with my big brother.  ......I'll let you go, I can feel myself rambling.

I'll pray for you if that's alright, yes even those of you I don't know, I know we all have struggles and I remember often feeling "the alone" threatening to overtake me and try to destroy any joy......those sliver of candle light that keep us going from day to day........so I offer this to each and every one of you.......prayer and kindness! 

Take care.....you ARE stronger than you know, there is a reserve deep inside you that will help you along the way. 

Sparrow