posted
I have found that the hardest thing about having this disease is going it alone.
I know that everyone who has a serious or chronic illness falls into their times of despondency,
and regardless of what your diagnosis is, you are the only one who can walk the path of the disease.
I just want to get this feeling out of me, because I honestly believe it is the worst part of my situation,
and that is, being very sick and still having to try to maintain responsibility for a normal life.
By that I mean, I am in pretty awful shape. Don't want pity for that; that's what I CAN live with (which is alot of progress for me).
I just wish I had the "luxury" (for lack of a better term) of being allowed to be very sick
and having someone else shoulder the everyday responsibilities for awhile until I would be up to it.
It is hard to be sick and go it alone. Or maybe there are some of you out there who aren't physically alone,
but your partner or family aren't helpful or supportive enough.
Or maybe your partner or family are sick too, so there is no one to really be the "normal healthy" person to take over responsibilities.
It is hard on other people; I know I am.
I have come to realize that other people who are not ill have their limits; they have only so much ability to understand and help.
Not their fault.
It is hard on my aunt, on my friends and colleagues (some of which even have Lyme but are in the "I was cured with 3 weeks of pills!" category) to not know what they are dealing with day to day.
I may be too sick to get out of bed. I may get out of bed but scream at everyone because I cannot process what they are saying and my brain is confused.
I may be going along pretty well and have a headache come out of the blue that makes me vomit and I have to cancel plans that I made.
I may be taking my aunt to her doctor, get in the car, and forget how to drive.
I may not be able to stand the sound of voices, including my own, and run in the bathroom and shut the door and curl up on the floor with my hands over my ears.
I may yell at someone to stop chewing so loudly --- in the other room.
I may burst into tears out of frustration, out of feeling that nothing matters.
I may make people angry that I'm needy, hurting, scared, or frustrated.
NOW, GET THIS ---- THIS is the person described above who is also trying to pay the bills, maintain the apartment,
cook for my aunt, get her to her doctors, take care of the dog, and figure out what else needs to be done from day to day.
ME, with my wonky brain!
I was just the other day watching Michael J Fox on Oprah, and nothing against Michael or Parkinson's (my mom died from it), God help me no one should be sick,
but I had this thought....
maybe we DON'T need a celebrity for our cause... after all, celebrities usually have the resources for all kinds of care, political action, media, etc.
maybe we as regular people actually have more strength for our cause than we think ---- the average person brought to our knees by Lyme.
Our losses are mind-shattering. When we lose a job, a partner, a family, relationship, money, etc, due to Lyme, it is a HUGE part of our lives.
And there are so many of us in terrible situations ----- I think maybe our strength might be in our numbers.....
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
You have an inner strength....it comes through in your post.
By the Grace of God we go forward.
Sometimes little baby steps....sometimes a couple of steps backwards.
I have a spouse, but I am alone too.
May be part of why I am not in a wheelchair right now.
I didn't have the choice to "be sick".
Not with two small children.
I agree that at times though, enough is enough.
It takes ten x the energy for me to do simple things
That other people do without thinking.
I plan my days as best I can around how I am feeling.
I am with you MissMari. I wanted to be counted in our numbers.
I am sending you prayers of love, healing and support.
You may have to be alone for the physical part,
But you are never alone in the spiritual and friendship part.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i hear you, loud and clear. i am alone in this too. perhaps in our mutual aloneness we can feel a little less isolated, if that makes any sense at all.
i admire anyone and everyone surviving this disease but i think it is even tougher when we don't have another party or caretaker who can shoulder some of the responsibility. when we don't have a shoulder to cry on or someone to fix us a meal when we're too sick to get out of bed.
i actually recently created a group on lymefriends specifically catering to this issue --
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
MissMari,
I wish I could say something helpful, but I don't know how.
You have us here at Lymenet and although we can't hug you, sit next to you or help with your chores, we do support you. And we believe in Lyme.
I don't have any answers, but I do feel your sadness come through your post, and yet, I feel your strength too.
If it is possible, look to the other side of this disease. To the part where you are healed enough to move through life more easily.
I am married, but very much alone so while our circumstances are different, in a way we are similar.
Wishing you well,
Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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jt345
Unregistered
posted
Hi Mari
Iam sorry,No I know how You feel ,and the last thing You want is someone too feel sorry for You.
The people that have shared Your life don't know it but they are as sick as You are only in a different way.
People with chronic illness go through stages.And so do the people around them.From what I gather You are in the last stage. By that I mean day too day things others take for granted and are aoutmatic for them.or not the same for You.
My friends are at the stage where they feel helpless. They cannot cure Me. So when that happens ,they either start too have doubts as too if I am really sick. Because here in the U.S. We have come to live in a pill fixes everything in two weeks society. Or they stop being around You because they feel helpless.
Heaven forbid We become helpless in the land of the strong.
They don't know they are sick. They feel they have done what they can so whats the use in trying anymore.
Our house is a diaster area, I try but it overwhelms me. My Wife works fulltime,and tries too remain strong for me ,but she has health problems too,and tires very easily.
Too day I find myself wondering about the future. It is uncertian. One thing I do know is I have too make adjustments,within Myself. If it means going it alone ,then I have no choice.
I do not rely on friends,I just put one foot in frount of the other,for as many steps as I can.When I become too tired I sit down. Sometimes that is ten minutes after I force Myself too dress.
I do have a Heavenly Father that Loves and provides for Me. Maybe not in a worldly way ,but in a way that allows me make it through another day. If You hav'nt asked Him too help,He is only a whisper away.
Life on earth was never meant to be easy or fair, But We have it .Something that works for Me ,is too reach out too someone who is worse off than myself. That is not bragging,it is the only way I can feel worthy of haveing the life I have.
I do hope things improve for You,know You are in My prayers.
Stick around the board,there are fiends here. People Who understand,and will be supportive for You. They have and are for Me. be as well as You can be today appleseed
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I feel for you, I truly do. You all know I have absolutely no support at home. Mom died last year and I do not talk to my sisters, so, in essence, I am completely alone.
I have Silverwolf (bless her heart) and others on this board, that's it -- no one else.
I don't think it's because people don't care but, dang, I wish they would quit asking "how are you? I just know you're going to get better."
And I want to answer "I feel like crap. I hurt all over. Don't talk, just be quiet." They really have no clue..none.
So it's better that I just stay alone and deal with it. I've learned to respond by saying "oh I'm fine" and change the subject. Mike gets furious if I say anything about lyme, so I don't.
It's just an additional burden we have to bear.
But know that you are not alone, never. We'll all be alone together I guess.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
...you are not alone in your fight...we are all here for you 24/7..
thinking of you Mar!!!
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
It is better to be alone than wish to God you were alone.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I will pray for you MissMari.
You have lots of friends here.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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