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» LymeNet Flash » Questions and Discussion » General Support » I am needing support please. my life just so sad

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Author Topic: I am needing support please. my life just so sad
LisaK
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I know others have it worse than I do, but nothing seems to be giong right for me at all.

I got SX back greatly after my MIL and mom both died within 6 months. ever since then I am getting worse and SX increasing. I have DX of lyme, bart, babs, MCAS and some other things I can't think of right now.

I really felt like I was giving up a few months ago so I decided to go to a "real" LLMD. it costs a lot. I told my dh I was at my last straw and I takled about dying all the time (even though dh didn't believe me)

so we decided it was time to go to the real dr and do whatever they said. I have had 2 apts so far. it has cost me (us) a lot- with lots of tests. but still probably less than what I spent for other lesser drs for the last 20 years combined.

my dh was all for this until al lthe bills. now he is resentful and mean to me. he is so angry that his wife is sick, but I think it is because of the money being spent. he is a real tightwad.

so now what? we aren't relly talking any more becasue he just looks at me and I can see hi mso mad at me. I know its not my fault! but it makes me so sad I don't have support from him really. and I feel guilty that I cannot really work to make any money that matters while he slaves away.

I am so sad. he says he is not mad *at* me, but he sure acts that way. some people are ver gruff and he is one of them. Maybe I should jsut pretend I am just fine. then he will feel batter.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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hiker53
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LisaK--Praying for you. Hopefully someone will come along that has more words of wisdom. [group hug]

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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Lymetoo
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That is so hard. It's hard to be sick all the time and then have to fork over your hard-earned cash on top of it.

Try not to take his gruffness personally .. maybe he's just *mad* as he says .. not at you.

Life can be hard and then it gets harder. Sigh.

God will carry you through .. and we will be here for you.

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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LisaK
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thanks you two...

[Frown]

dh did try and be nice this morning. I think he is in midlife crisis along with some other things like losing both his parents too.

my BF , lifelong, has turned into a very non friend. I told her yesterday some choice words and basically told her I have had enough of her stuff. she tells me of all her troubles like daily but never has a moment to actually spend with me ever. what is that??!?!?!

anyway, I blocked her on my phone. been a long time coming, but now I am finally grieving her loss and it hurts. I miss what we had long ago and now I feel so alone.

I know ill get through it, but still.

just so much giong on. too much to post here and I am just so tired.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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daisys
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If you have just started going to a LLMD, maybe you're reacting to the killing off of the spiroketes so better days are ahead.

Whatever is happening in your life, it may feel like it's forever, but it isn't. Short term memory problems mean we forget ups and downs in the past, and so don't expect them to happen again. At least that's what I keep hearing.

Anyway, my heart goes out to you.

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aklnwlf
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Boy LisaK, I went through something similar.....

First focusing on your health is the best decision you could make and please don't feel guilty about it. While married I couldn't work either when I was sick. My ex was never supportive along with my family. They just didn't understand how sick I really was or were not able to deal with it.

Don't pretend to be well either. Don't waste your energy, save it on healing.

LOL....also I have a friend that's exactly like yours! She complains about her life and problems every time I talk with her and sometimes it's hard for me to get a word in edgewise. She's very selfish and self-centered but we've been friends for about 40 years. We had a falling out that lasted a number of years but through providence or God or something we reconnected and I found out she had went through breast cancer treatment. She's still the same and I wonder at times why on earth I'm friends with her. We just have so much history together it's hard for me to throw it away and not try to work on our relationship.

So far we still hang in there......

One friend I had since high school, (I'm almost 60), had the hots for my second husband so I called her out on her actions and ended our friendship. She still tries to contact me but I don't trust her anymore.

Anyways....I hope sharing this helps LisaK. Believe it or not, I'm happier and healthier now. You will get better especially with treatment. Also I've got mast cell issues too which are manageable with treatment and diet/stress management.

Hang in there my friend! You are not alone!

[group hug]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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LisaK
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yes, ak, my (non) friend just like that.
and we are friends for 40 years too! I know exactly what you mean about the long history and hard to throw it away. I mean, I always stuck by her thick and thin. the thing I notice now that it was me always sticking! she never does. why did I do this for so long???? she wsa easy to talk to I guess, but other than that, nothing really any more.

I was always the one trying to help her. and she would say, "you don't know what its like to this that and the other" well, no one does about anyone, right????? just like SHE has no idea what I went/go through!!!

I am so mad at her right now. but I really am sad. husband - I wish I could bring home a truck full ov money and throw it in his face. then he can just stop blaming me for being sick. I confront him and he says he doesn't , but actions speak louder than words.

my sibling's lives are all falling apart too. its like a darn soap opera! I guess I will just throw my hands up at it all.

I am glad to have people here. that is for sure. no one personally around me understands. not one.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Rivendell
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Lisa, I have had similar things with people who have mattered a great deal to me.

I don't have the energy to tell all the stories, but this is what I do to handle things.

DO WHATEVER BRINGS JOY TO YOUR LIFE. What are you interested in? Do you have any hobbies?

When hubby or friend is angry or selfish, ignore them. You might even decide that joy is more important to you than having a "friend" who is so self-centered. I think your husband will be able to improve with time.

When hubby yells, ignore him. Watch TV - something you really enjoy. Get involved with your hobby.

If you feel too bad to participate in a hobby. Go online and watch YOU Tube videos of people doing your hobby. I love to paint, and I watch YOU TUBE videos many times, when I don't have the stamina for painting.

In other words, be the best friend you can be to yourself. Don't let others suck you dry. Take care of your energy. Take care of you.

Your lyme symptoms will improve. It takes time and money. Also, consider the Buhner protocal and other alternatives as an adjunct, or by themselves, if lyme treatment gets too expensive.

I ordered some paints, and they just arrived. I will have fun playing with them today.

Believe me, I GET what you are saying.

HUGS

--------------------
Herbal Treatments for Lyme and Co-Infections:
http://buhnerhealinglyme.com
http://www.tiredoflyme.com/the-cowden-protocol-for-lyme-disease.html http://www.sinomedresearch.org http://www.lymenet.org/SupportGroups/

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Rivendell
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Also, if you are too grief stricken to look for joy, then know it will get better. This has been a tough year for me too. We care about you here. Take care.

--------------------
Herbal Treatments for Lyme and Co-Infections:
http://buhnerhealinglyme.com
http://www.tiredoflyme.com/the-cowden-protocol-for-lyme-disease.html http://www.sinomedresearch.org http://www.lymenet.org/SupportGroups/

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aklnwlf
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Hi LisaK! Ditto about Lymenet! My friends here online got me through the darkest and hardest days of my illness and slow recovery. Without Lymenet I had very little support. Rivendell had an excellent point about being your own best friend.

We're here if you need us, anytime!

[group hug]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Bartenderbonnie
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Hey Lisa
Sorry you are struggling with so much drama while being so very ill.

I have written to you then deleted it, written to you then deleted it. I didn't want to stir things up anymore for you if possible.

But. . .

Let's say the tables were turned.
If you were the breadwinner and your dear husband was so very ill, wouldn't you do everything possible to get him well?

Of coarse you would!

As Suzy Orman says "People first things second."
Marriage is 50/50. Fortunes and debts split down the middle.

Maybe you could take out a new credit card for your use only. A piece of mind alternative, in case of emergency.
You would be approved based on his income. Later down the road, if things go south, with your lack of employment history, you would be not be approved. Sometimes desparate times call for desparate measures.

If you don't have your health, what do you really have?

(apologies if I overstepped my bounds)

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Robin123
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I have had friends that just talked about their lives and problems and didn't want to listen. I fully support you dropping that friend. Perhaps it will open up opportunities for you to have more reciprocal conversations with others in the future.

I think if you can try to do anything you enjoy in life, that will help some. Even just baby steps in the directions you like. Sometimes I have given myself a direction like, do at least 5 things I like doing today, even if they are very small activities, and I record them, so at the end of a week or month I can see I've taken steps to do things I enjoy. It puts some quality back in our lives.

I am pming you about the rest...

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LisaK
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all v good advice, THANK YOU everyone!!!

the weekend was not good and I am really sad missing my not friend. and v mad at the same time for all the BS I put up with for HER and she never was there. didn't even try to come to my moms funeral or help the famly in any way. and I am reminding myself of everything her husband told me on his death bed of how crazy she is and still I stuck with her.

ha, I guess I should have listened long ago. I thnk I will make a list of al lthe times she let me down so I don't forget and feel sorry for her.

its just like a death though and it is hard for sure.

DH, he has ups and downs. he def mad at something- either me or not- for all the expense. but we had a talk and he assures me he does care. I am just sooo different from him. and he was raised self-centered. I know people should redo themselves when they grow up, but parents (and siblings) sure can drill BS into your head and make it v hard to change later in life, that is for sure.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Lymetoo
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Yes, some very good advice up above .. One day at a time, as they say!

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Ann-Ohio
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I like the idea of setting some short-term goals. I am a list-maker and
even if I'm not able to check off all the items at the end of a day, it
still feels good.

If you put "Make a list" at the top, you can check that off; it is a start!

If you can get out for fresh air, going to church or a community activity, or maybe a book club -that would be good.

It is good to put your health needs first, and one of the things your body needs to be healthy is a chance to feel normal, if only for a while.

You have lots of good people here, hoping you feel better.

--------------------
Ann-OH

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LisaK
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thanks ann, good stuff.

I do like to make lists and I have been now setting goals and it does help. have been thinking about going to church during the week . I used ot and it does feel v good.

I know I need to feel useful, and that will help me completely overall, but when one day you are "fine" and the next you feel like a truck ran over you, bleh , who wants to make plans or follow through on others?

You all know how that goes.

my mind is very powerful.. so much for the power of suggestion. but how do you tell yourself not to imagine what you fear is actually happening??

I think honestly what is holdin gme back from a lot is how angry I am at those that have hurt me over the last few years, especially when I was the most sick. I see how holding negative feelings keeps you from growing and healing, but it's so hard to shake it!

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Rivendell
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Lisa, I totally understand your anger.

There is so much support for other illnesses, but this one, we are on our own. There are good people who have started support groups. Bless them.

But the average person doesn't get it. With this illness, when we need support the most, people like to kick us around - or so it seems.

This anger will fade. It seems sometimes like I get stuck in a feeling and no matter what I do, it won't leave. Then one day, it shifts.

I know when these infections raise their ugly head, reducing inflammation in the brain helps so much. Japanese Knotweed is great for this. So are blueberries - really.

The Alzheizmer's association recommends them to reduce the inflammation. And, most likely, Alzheimer's is being caused by spirochetes and other infections.

Also, green tea is great for inflammation and bartonella. It's hard to control thoughts and feelings when infections are screwing with your brain.

You're gonna make it.

--------------------
Herbal Treatments for Lyme and Co-Infections:
http://buhnerhealinglyme.com
http://www.tiredoflyme.com/the-cowden-protocol-for-lyme-disease.html http://www.sinomedresearch.org http://www.lymenet.org/SupportGroups/

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LisaK
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ahhhhhh
Rivendell
thank you

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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LisaK
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so my family and I started family group therapy.
no one wants to talk except me....

and tonight I had a reaction to the counseling place. it was moldy or something and I had trouble breathing when I left. and today I found out I have more spinal damage and I just feel so old and defeated. [Frown]

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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aklnwlf
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Thought you could use one of these.....

[group hug]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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hopingandpraying
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I second that!!! [group hug]
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LisaK
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thank you
[group hug] [group hug] [group hug]

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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LisaK
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how the heck do people survive this crazy stuff????


I am going nuts.

I feel lie total crap. right now pretty much 99% family and loved ones are totallly unsupportive. I have told them my needs but they al lseem to think im exaggerating or something. I just want it to end.

are supportive loving people really out there??? why can't I find any?? I am talkilng about physical - like on line is so good but it is not emough for me.

on line support groups cannot touch and hug and don't wipe your tears.

I DO have my faith in Jesus, but it's just never enough.. what the heck is wrong with me????

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Bartenderbonnie
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There is nothing wrong with you Lisa.
You treat others with respect, compassion, and kindness. ❤️

It is hard to comprehend how others live their lives without these basic traits of caring for each other.

Lymenet's the perfect place to vent. We all have been there with selfish and narcissist life suckers draining us of the little resources we have. Many of us have/had been the care-takers of others. Now that we can't help THEM, they show their true colors, some even guilt you for being sick!!!!!!

Now that I'm not working, I've reconnected with my great neighbors. While I was working I didn't have time for neighbors. Too busy with housework and family obligations. Now we frequently check in with other and genuinely care for each other. They have become my family. It's really nice to have friends.

I know it's hard but try not to let them hurt your feelings.
For me, I will call them out on their bad behavior.
Not to change them, but to validate how their behavior affects me.
They will call me when they want a favor but not once to see how I'm doing. So to eliminate the stress of loved ones not showing love, I've slowly distanced myself from them. My vagus nerve thanks me.

We care about you [kiss]

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aklnwlf
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Oh LisaK..... [group hug]

Outside of Lymenet, long distance friends and my church family I got very little support from my own family.

In my case they just didn't know or understand how sick I really was even though I had a home health nurse visit me during my IV treatment. I lived alone during the majority of my treatment so they didn't see me very often even though we lived only 20 miles apart.

I want you to know that you deserve all the love and support you need.

Sometimes our loved ones drop the ball for whatever reason and I'm being polite putting it that way.

Take care of yourself!

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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marie
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I think they feel for us and care but their hands are tied. They feel helpless in our situation with our symptoms.
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LisaK
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Bonnie, ak, and marie- you are all right!!!
this is all so true!

today I feel a bit better so I could defend myself a little. but I just been crying. I need to try and teach myself how to put a bubble around me to protect.

so many narcessist.
I wish I had some good neighbors... they are all 'too busy'. and siblings, yes, only call when they need. I can tell my one sister I love her and she just stares blank at me.

since my mom died I am seeing a lot was her doing (sorry mom). she pinned us against each other. always such jealousy and competition. I wonder why????

frinds too. I am dropping some. so NOT firends.

thank you everyone!!!!!!! [group hug]

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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aklnwlf
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So glad that you're feeling better today!

[hi]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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WakeUp
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quote:
Originally posted by Rivendell:
Lisa, I have had similar things with people who have mattered a great deal to me.

I don't have the energy to tell all the stories, but this is what I do to handle things.

DO WHATEVER BRINGS JOY TO YOUR LIFE. What are you interested in? Do you have any hobbies?

When hubby or friend is angry or selfish, ignore them. You might even decide that joy is more important to you than having a "friend" who is so self-centered. I think your husband will be able to improve with time.

When hubby yells, ignore him. Watch TV - something you really enjoy. Get involved with your hobby.

If you feel too bad to participate in a hobby. Go online and watch YOU Tube videos of people doing your hobby. I love to paint, and I watch YOU TUBE videos many times, when I don't have the stamina for painting.

In other words, be the best friend you can be to yourself. Don't let others suck you dry. Take care of your energy. Take care of you.

Your lyme symptoms will improve. It takes time and money. Also, consider the Buhner protocal and other alternatives as an adjunct, or by themselves, if lyme treatment gets too expensive.

I ordered some paints, and they just arrived. I will have fun playing with them today.

Believe me, I GET what you are saying.

HUGS

Yes, Lisa--

Rivendale above gives the BEST advice-- do what brings you joy!! Our relatives for the most part abandon us because we are chronically ill or can't pull our weight financially. I am lucky to have a supportive husband, but my daughter, my father, step mother and aunt have all disdained and basically abandoned me.

My best friend would probably also abandon me if she found out how much weight I have gained to due the exhaustion and poor mitochondrial function. I also often do a lot more listening for others than they do for me-- even though I am pretty much bed ridden most of the day and they are not..

I have very little energy each day-- must force myself to walk 3,000 pathetic steps a day, and I do force myself to slowly swim one hour a day which brings me joy--- once I drag myself into the pool. I feel very blessed to have a small 1970s pool. The inscription on the old pool says "to Robbie, Love Daddy, 1971." That love of an unknown father for his little son always warms my heart.

Another thing that brings me joy is watching youtube videos about crafting "hacks" ie-- how to make an amazing array of things out of PVC pipe!! Cheap yurts, shoe racks, hunting bows, craft organizers, survival caches, etc-- all from PVC..

So for health, I am now (slowly) making a cool aeroponic tower out of a segment of 6 inch PVC pipe, with a heat gun and a small water pump. I want to grow all fresh organic lettuces and spices with this mostly free tower. (got free remnants of pipe from a local construction project).

Green juices really do help us in the Lyme community-- a lot-- so there is method to the PVC aeroponic tower madness.. !!!

So dearest Lisa-- do what brings you joy every day! Accept and bask in our love here!! Ignore the unsupportive in your life-- as Jesus said "they know not what they do." Try to love them if they do not drain you too much. But if they drain you then dust off your sandals. YOUR survival is important too, and we are all battling for our lives, here. Keeping joyful is the biggest battle of all for those of us here..

I am happy that you have invested in an LLMD so at least you can have a detailed medical report of stuff like co-infections. He may not be able to completely cure you, but you owe it to yourself to have done this at least once before you die.. Tell your husband you will recover the funds by selling on ebay or doing something for revenue that is not too strenuous--- and then move on from there then hopefully he will shut up about it.

Don't be hard on yourself if you only have 3 hours of energy per day.

We are all still alive, loving, supporting and caring for each other each day in this community-- and this love and care is a blessing-- and love can bring meaning to our suffering.
Love, many blessings and HUGS to you today!

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LisaK
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I iwas invited to the shore to visit relatives and what a difference it made in me!!!!!

sea air is the best for me. and not having to do anything and away from all my family drama a nd yelling, etc, really did a world of good.

im so glad I took the plunge.

[Smile]

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Lymetoo
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YAY!!! I hope you continue to be on the UPside!!

Life is not easy!!

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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LisaK
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ugh, sometimes I feel like Jobe in the bible.

I am sure many of you all do too.

im sorry to always need emotional support, but I really don't have much in my circle of friends/relavtives.

I often wonder if I had cancer if anyone would care. that's not something I dwell on, but I just wonder it some times.

I started a part time job and I was liking it very much. I am FINALLY able to work and it has been a good fit for me- with a great flexible schedule and relaxed atmosphere for my MCAS to be calm, etc.

2 months ago someone racially attacked me.
at work. there were 2 of us victims. it has really done a number on me and I feel so full of hate. that is somethig I never had before. I never hated anyone!

I have more empathy than most people according to my genetic counsellor, and I have always gotten along with all kinds of people. now I have PTDS and I can't seem to shake this bad stuff. I don't want to be angry and have hate. it is so hard to shake.

anybody have helpful words?
I do pray. I say all kinds of great prayers and they do help a lot. but it just seems to slip in and fill my head again and then I ruminate- something my LLMD told me is a symptom of TBD. I cannot stop ruminating about this racial incident!

[confused] [shake] [Mad]

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Lymewest
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Why is it that we can feel so horrible in just about every part of our body, and yet it’s all completely invisible to others? People generally need to be able to “”see to believe.”” But even then, I think all illness tends to become a drain on those around who are healthier. ( Unless you are a kind of saint. )

That’s why a support network is so vital. When Ive tried to go without it, I suffer much more. I believe “”experience”” is everything. It’s pretty hard to understand what you’ve never personally experienced.

I’ve gotten to the point of really trying to reduce my expectations of others concerning my illness. And that really helps me. But I have to keep in constant touch with those who DO understand because they have a similar experience.

Lisa, probably the best thing you’ve done for yourself is reached out here. You put an end to the aloneness that comes with our disease. That aloneness alone can kill us.

Hugs to you!

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Ann-Ohio
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I hope you are still able to work.

The old "Sticks and stones may break my bones, but words can never harm me." doesn't really help much.

Those who attack others verbally - or any way - are bullies, and bullies are cowards.

They are really just belittling themselves and shouldn't be allowed to continue.

Have you reported this incident to HR at work?

Hang in there, you can't blame yourself for someone's stupidity. I am so glad you have good people by your side here!

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Ann-OH

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overlyme
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i felt like i was dying untill i got on iv

antibiotics

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been there done that!

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LisaK
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Ann, I eventually filed a grievance . they had a meeting and she resigned. they should have fired her! but I think I wolrk in a no fire place. I feel WAY better at work now that she is gone!

it is amazing how something like that can really affect you! I never had such a thing before like that. so horrible.

Lymewest, thanks, your words make sense.

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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LisaK
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our daughter got married last weekend!!! it was one of the best days of my life! finally something very wonderful to celebrate!

but then....5 days later my BIL died.

he fell and hit his head and bled to death. it was a horror movie. very graphic and totally gruesome. I will spare you details, but I was just finally relaxing after the wedding .. does life ever get borring??????????????????

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Lymetoo
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Oh how wonderful and then how horrible!!!

I hope you are back on the upswing again soon!!

No, life never gets boring!! LOL

--------------------
--Lymetutu--
Opinions, not medical advice!

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MannaMe
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So sorry to hear of your BIL.


And Congratulations on your daughter's marriage!! What a joyful celebration! Will they be living nearby or far away?

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LisaK
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manna , they are about 15 minutes away in good traffic.
not close enough for me, haha

I just want to let people know I am recovering from my emotional hurts now. slowly, but I am working on it.

and thank you to anyone that supported me in any way.

tick diseases really took so much of me away from me. it's like I have to relearn how to be. how to socialize, what is important, what is harmful, who is harmful, etc. with my mom dying it really has been

very enlightening and such. and my health finally improving now in its own way, haha.

what a loooong recovery!
even though I did "recover" so much before. I guess it will always be like that.... back and forth. maybe one day I can let go of all the hurts and just be me again.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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