feel like letting go..

So this month marks the one year mark of being housebound. A year before i was housebound i had sevear symptoms (mostly with my eyes) which prevented me leading a normal life (ie couldn't be in the light). Ive watched lyme destroy everything ive ever held dear to me. Im a new mum and ive missed out looking after my child, i missed her first day at nursery, i miss going to her at night when she called (her dad goes) i miss telling her stories and playing games, running in the garden. As shes gotten older, shes spending more and more time at her grandparents. Her grandparents are exhausted and disappointed that they no longer get anytime alone (i do hire a baby sitter three days, but the other days they help, also even though i have a babysitter she only works until 3pm so they have to take over from that point). I feel ive put alot of pressure on the grandparents, and am a great disappointment to them. I feel guilty im not the mom i dreamt of being to my toddler. She often will ask for her grandparents instead of me now, and i know at almost 4, im missing out on the most important years to bond with her. I feel like ive lost my own soul, like a tiny part of my heart walks around with out me, and i cant be with it.
My partner has fallen apart since ive been unwell.He had a 25 year old addiction which he had conquered finally 4 years ago. With in 6 months of me getting sick he had returned to it. Now he is in therapy for the first time, and its like an walking angry emotional wreck live with me. hes so angry at lyme or completely closed down not wanting to upset me. sometimes he assures me and wants to talk about me being sick, and at the start he wanted to read about lyme and to encourage me in every aspect. but he told me doing this brought this addiction back, as he felt under to much pressure to fix me and then needed his own outlet afterwards, so now hes gone the other way. i know hes messed up by everything. i don't blame him, for hes seen me break down and beg him to take me to dignitas (the clinic where you can commit suicide legally) at my worst and how can someone react to that? he cant fix this mess. Everyday he comes home from his job and tells me something bad, with flashes of rage in his eyes. he tells me his boss is about to fire him because of me (hes mad at his boss not me he says) because he cannot really focus for all his worries and its affected his sale performance. he also took 8 weeks of work to take me for IV treatment this year (which works but failed once i stopped). in short hes a broken man. my daughter is being raised by her grandparents and i am bed bound many days a week often unable to even get down the stairs when the exhaustion and pain hits . (although i CAN now walk, which i am thankful for everyday)
I broke down and told a close family member this tonight and they said they couldn't help as were exhausted by everything and not feeling well themselfs (they have a virus i think but are exhausted by me) the thing is keep so much inside. i only talk about feeling low when im desperate. and i dont need a fix from anyone, just someone to tell me it will be okay and to keep trying.
so this month everything has come to its peak for me.
i had the most awful day. i tried some semento last night for the first time and couldn't even move my legs for a short period time afterwards, i was excited because i thought it must be a herx and finally something might help? when my partner got home i couldnt wait to tell him, i want to share my medical news and make him happy, and hopeful. i want him to see im worth sticking around for, that this wont last forever, even though part of me now wonders if it is...forever.
When i told him he just dismissed me, he said he didnt know what semnto was, which hurt me as i chatted to him about it last week a lot, then he said he was tired. then it struck me. hes so over this medical talk. hes so over a wife in her nightie asking him to help her reach for her phone, or help her down the stairs. he looked at me just for a second like he didnt want to hear about this latest new idea i had, for getting better.
its now past midnight here in the uk. im sitting here and a song came on that reminded me of dancing and having fun before i got sick. and i just couldn't stop crying (quietly of course so no one noticed) i feel like there is a full balloon in my tummy and its getting bigger, and all in there is sobs that i want to let out and held back to long.
im not here for answers, i just wanted to share. its so lonely. im feeling so low about it all. i feel like no one wants to hear it in my life.
sometimes now i think about letting go, i think about ending it because no one is happy. im not happy. i cant rememeber the last time i felt joy. i was so hopful during my IV, but it only worked at the time.
has lyme ruined everything forever? . is there hope? can someone please tell me there is? is anyone else a mum? im 35 and feel like im just gradually becoming...nothing.

I'm sorry you're feeling so bad. Sending you prayers and healing thoughts. XOXO

thankyou for your replies. wow, just to have someone out there listen to my thoughts i would usually keep hidden is so emotional for me. im in tears again. it means so much.

Girlie said...
waterbee.....I feel your pain....I'm so sorry for all that you're going through.

When you were on the IV - did you continue with oral antibiotics afterwards?

You and your partner are both tired...

Are you only on Samento? Are you able to see a LL Dr.?


You can't give up...dig deep...and keep going...for your little girl.

Yes there IS hope....there IS. Please don't isolate...come here and ask for support..okay?

Yes i was on the IV (Rocephin) for 4 weeks i had 50% improvement and felt amazing. afterwards my lyme doc put me on his standard protocol, of doxy twice a day and another one i think called chlyhmithin? (spelling wrong there) i had an allergic reaction, after which he wasn't really sure what to do with me, so he put me on 3 x 500mg of amoxicillin a day (this was 6 months ago almost) and gradually i got worse. He did try adding minocycline (made me very sick and could not eat so started losing to much weight) so he stopped that. Hes been open about me needing to be on more abx but says amox seems to be the only one i cope with.
I think not being on enough abx and high enough dose it largely why ive not had a fair shot at making progress.
After coming on here and posting, i got some good ideas so went back to him and asked about herbs and increasing the amox and adding tindazole, which is the next plan (hence the semento) and im now on 5 x amox a day. so i hope to see some changes. I may also have a chance to return for more IV if i can in the next few months, just worried its a waste of money as got sick afterwards.

waterbee..

My heart is breaking for you. I am a mom to a young daughter and I have had similar thoughts of ending it all, so I do understand to an extent how you are feeling. I am so sorry. I too feel bad for talking medical talk all the time to my husband. I think it is so overwhelming for our partners too. Your hubby was probably just having a bad day. You need to stay here for your family, you will get through this tough time! HOPE - HOLD ON PAIN ENDS.
All my love and prayers
- Evian

You have to detach for your own sake.

first of all without you they, YOUR FAMILY will be lost. So it is MANDATORY that you take care of yourself first.
While this is very challenging and a catch 22 ...I recall when I homeschooled our kid who was special need (had very challenging behavior problems)....BUT my biggest stress was when he was going to school and the school was calling me constantly (even at work).
I realized then...I just could not have a normal life like most moms. I could not purse a career like most women, and no matter how much money I was going to make, I had to figure out a way to DECOMPRESS and let go of the life everyone expected me to live and I expected myself to live as well.

I pulled out my kid from school.
Stopped working
Stayed home instead.
Learned to live with minimal stuff.

The stress went away instantly and as we progressed everything got way better.

evianangel said...
waterbee..

My heart is breaking for you. I am a mom to a young daughter and I have had similar thoughts of ending it all, so I do understand to an extent how you are feeling. I am so sorry. I too feel bad for talking medical talk all the time to my husband. I think it is so overwhelming for our partners too. Your hubby was probably just having a bad day. You need to stay here for your family, you will get through this tough time! HOPE - HOLD ON PAIN ENDS.
All my love and prayers
- Evian

thankyou for this. would love to ask you a million questions on how you've managed, i don't know a single lyme mum of younger children and i think thats why i feel so much more isolated. xx

You CAN do this! You know you can feel better, you have felt better and now you are able to walk! Improvements :) my heart goes out to you, I know how you are feeling, a lot of us know exactly how you are feeling. You are not alone. And things WILL get better, they really will

jennydancingfish said...
Honey why didnt your doctor put you back on iv if you saw a fifty percent improvement? Do you think you need another llmd?

Remember my llmd always tells me this too, people from lyme get better the only thing is that you need to be patient because it takes TIME to find the right protocol for each person.
The fact that you improved on iv is an excellent sign. Dont give up honey!

yes i think going back on the IV would of been best, but that wouldn't be an option as i couldn't afford it, so i think he was just doing what he could within my financial situation. He did mention other options but being costly again, i didnt do that. So i think he did do his best.
i think ultimately its just my situation and not being able to take the abx, and it ended up in a big mess.

Waterbee please hold on. I know that you feel awful at the moment, but you must keep going for your child. Don't abandon her. You have your family. It is a tough situation, but you have them. You need to hold on. For your daughter.

update: im now two weeks into my Rocephin (ceftriaxone) iv and doing great, its really shocked me how quickly i get better on IV meds. im dreading stopping them as over here, a month is all thats allowed. its given me alot of hope though, and ive had some days pain free.

Yay, waterbee! Glad you are feeling better and getting some relief!!

Waterbee why only a month? Where are you? Did you get a picc line?