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Posted 5/31/2013 12:07 AM (GMT 0)
First of all, I apologize because this is a more negative post. It's not my intention to drag anyone down, but I just need to share my feelings. I'm very positive but I feel I can't talk about this anymore to my husband or mom since they so desperately want me getting well that I can't dash their hopes.
I've been sick for about ten years (sometimes worse than others, but I still managed to have a "life" and family (even if it meant crashing on the couch after work and skipping a few social events). But, this past January is when everything went downhill. Long story short I've been bed ridden since February, in the hospital twice too. Diagnosed middle of April. My mom has had to come and look after me and my family. Because I'm so sick we're selling my beloved acreage (my husband works in the city 45 min away and so I looked after our 10 acres and farm animals, garden, our daughter, so with me down its impossible to stay here, plus being outside of the city is really hard for me to get to appointments, since I can't drive anymore and the drive back and forth is hell). I've also had to drop out of nursing school. We've given away our animals (except for our 3dogs and 4 cats).
It's like, what more can this take from me. I used to love mornings now I hate them because it just means another long day in bed or the recliner watching shows on my iPad or trying to doze.

My most disabling symptom is chronic dizziness and head pain. Then to top it all off I woke this past weekend to vertigo bppv so I've been dealing with that garbage now.

Up until January I was still going to the gym, in school, caring for my family. My two events of the day are sitting in the sun and a shower. I also have Bartonella (which is contributing to my awful moods).

Please give me some hope. It feels so lonely in Canada because chronic Lyme does not exist here and one month of doxy will take care of it - so they say....sigh.

I guess to put it bluntly I'm just seeking some support. Thanks all!
Posted 5/31/2013 12:32 AM (GMT 0)
well my dear you came to the perfect place for support. Others will chime in, I guarantee it.

I don't know what to say, except you are not alone, I, and others, yup this is what this disease can do

one month you are 'normal' and the next, like taking a shower is a big deal, cause for me, it wears me out after

before I got ill, taking a shower, hop in and out, no big deal at all

sometimes I use this like dry soap stuff
and do sponge baths

it is not fun to watch things that were once part of your life, disappear, less animals

I cant drive hardly and ... just that u are not alone
and

people do get better

time and patience , people get better

some get a hundred or 90 percent or somewhere close to that

and miracles happen

It is a temp situation, and once you get better

you can get your life, things back

in the meantime, come here

this is my saving grace.....

gentle hugs
Posted 5/31/2013 12:34 AM (GMT 0)
I have the vertigo too

I cant do yoga , even floor exercises cause I get to dizzy

just turnig my head

but I intend to one day, getting back like I Use to

I was going to be a yoga instructor

and now, well...


we are in this together, baby tiny steps,

like today I was siting crossed leg, indian style, and it was no problem

I did not even realize I was doing it

and then I did, and was so happy

I was not in pain

so it is the little simple things now
Posted 5/31/2013 1:08 AM (GMT 0)
I can definitely understand feeling blue and alone. This disease doesn't just take your health and sanity, it can take your relationships along with it. I lost a lot of friends and even a wife due to major anger issues.

It took me 5 years to figure out it was probably Lyme, Bart and the brain fog causing all of this.

wellbeautiful is right though. We are all in this together and we have to take baby, tiny steps to recovery.


Things do get better.

Post Edited (vcast) : 5/30/2013 7:11:28 PM (GMT-6)

Posted 5/31/2013 1:15 AM (GMT 0)
I am really sorry you feeling down, I was also really positive until I started feeling sick. I have been in bed for 3 weeks now I never missed work this long. My head also hurts it is a horrible and scary pain, detoxing helped me a lot, at the beginning I was feeling so sick but after 2 weeks I stared feeling a little better you should try it go to New to Lyme.... Start here. They have great information there.
I feel also bad for my family because they are suffering with me I changed do much in the last 3 weeks.
This is a good place for support and they have great tips to follow.

Post Edited (Csmm23) : 5/30/2013 7:18:13 PM (GMT-6)

Posted 5/31/2013 1:33 AM (GMT 0)
Prariegirl, do not worry about posting when you are feeling down. This forum is here so we can help each other get through these horrible times. Believe me, you are not alone in feeling the way you do. The emotional part of this disease is just as devastating as the physical part of it for most of us.

The good news is, you CAN get better. From the way you describe your symptoms, it also sounds as if you have babesia. The babesia testing is highly inaccurate (more than lyme testing) so even if it comes back negative that doesn't rule it out. It should be a clinical diagnosis. Do you have air hunger (like you just can't get enough Oxygen) or sweating? Those are also symptoms of Babesia. The reason that I mention that is because I've heard from many that they didn't start to get better until treating Babesia.

That being said, are you seeing a LLMD (Lyme Literate MD) in the states? Or is there one in Canada? I've heard many times that it is very hard to get proper treatment for lyme disease and co-infections in Canada (although it can be in the U.S. also).

I'm sorry that you are losing your home and property that you love. That would be very difficult to handle. You are grieving the loss, as you should be. Make sure that you take the guilt out of it for yourself though. You did NOT ask to be sick and feeling guilty will only make the depression worse. Good for you for searching for answers, researching, and starting on your healing journey. You have advocated for yourself, which is more than a lot of people are able to do. Eventually, you'll get better!
Posted 5/31/2013 3:26 AM (GMT 0)
Prairiegirl,

As I read your post I felt the sadness of the changes in your life. All I can say is that i understand and that you have joined a community of people that understand.

My advice is to cherish and enjoy the relationships that you have because this illness robs so many things from you.

We are here to give an ear to your "negative" posts and rants. You are only human like the rest of us. We have all gone through it.

There is hope. People that have been sick for years can return back to the living and pursue the dreams that they once thought had gone forever. My daughter is one of those people.

If you haven't been able to find proper medical care in Canada, have you considered a self-treatment program at home?

Don
Posted 5/31/2013 6:47 AM (GMT 0)
Prairiegirl,

I'm with Mystery Illness: there is definitely a grieving process... saying goodbye to many daily things that are inbedded in our lifes... 'friends', social life, material things, strength (both physical and mental), etc...
Try to ban guilt out of your feelings, it's a very energy consuming emotion, and it leads to nothing at all.

I've been posting several negative threads, it really helps to get it of our chest...

I've had many kind reactions. This, and reading about the success stories of the forum members really keep me going.

If you have any questions just post them, insights from others can help you to find the right path to follow.

I know about the Bartonella... sometimes I just can't controll myself. I'm lucky to have a very calm husband, who knows he's not perfect either, so he can put things into perspective. I'm a very calm person, a happy smiling character, but this illness has taken it's toll... sometimes I feel there's a Dr Jekill, but there's also that Mr Hyde who comes out unexpectedly, more often than I want 'him' to... lol.

MarieLS

Posted 5/31/2013 5:14 PM (GMT 0)
Thank you all for all the encouraging words. I'm finding the worst things with this illness (besides the awful physical symptoms), is the loneliness, anxiety and boredom.

I was thinking about how being so ill has taught me compassion (I've learned my lesson, can I please move on now, haha). For example I have an uncle who suffers major depression and PTSD (Vietnam vet). Although I used to pay lip service and say how awful depression was and its a serious illness, there was still part of me that would think - "he just needs to get it together" and "I wish I could drop everything and have 'depression' for awhile so I could relax in bed all day" - pretty awful thoughts and I even have a degree in psychology so I should know better! Believe me, I know better now.

I was thinking a lot about it yesterday and how a lot of illnesses are suffered in silence. Like if you were to get cancer or a heart attack, etc.(not that I'd rather have that or wish it upon anyone), you're embraced, but if you struggle with something like schizophrenia, depression, have HIV - the social stigma often forces you to suffer in silence. I think for me Lyme sort of falls in the second category, people here don't get it, so I feel very alone.

I am going to go the natural route because I have no choice. There are LLMDs in Canada, but you have to find them because they keep a low profile. I just read of a doctor who was treating with long term antibiotics and the province shut it down (in Canada our healthcare is universal and funded by federal and provincial taxes, but the provinces make the rules and dictate how the money is spent. Also, we pay for our own out of hospital treatment ex. Chemo is covered (free) because its administered in hospital, take home anti biotics are not covered and need to be paid out of pocket or by private insurance). What happened with the doctor who was shut down is one of his patients tried to claim her long term antibiotics on her insurance, insurance company informed the province and doctor was forced to stop prescribing, because he wasnt following Lyme treatment protocol that Health canada dictates (based on the same data the US follows). i think pretty similar to what happens in the states just a different system. Even if I could find a doctor who would prescribe me antibiotics, I know my insurance company would get involved (they're just nasty) and I couldn't afford to pay out of pocket.

So I keep researching trying to find the best treatment. Buhner's protocol and essential oils seem to resonate the most with me and they treat bartonella. I've also been seeing a lady who does riffing.
So hopefully with time they'll work.

Thanks everyone and I look forward to chatting more on the forum! :-)
Posted 5/31/2013 8:12 PM (GMT 0)
Hi Prairiegirl!!!! Hugs and love from the DC area!!! I too learned even more compassion than I had before. I'm so humbled and know who is really in my corner. I have a son and he is my saving grace. Looking at him every day lets me know that I have no choice but to get better. I started feeling alone as well (I mean he is so young) and my family doesn't quite get it. I do have an Uncle and he is from my dad's side. I didn't grow up with him but he gets it. My cousin has a rare chronic illness (very rare for people our age and ethnicity). So he knows how sensitive dealing with being so sick can be and has been helpful.

But this forum is my saving grace! I love the folks on here, they are kind and caring! You've come to the right place for advice, venting, wanting to share stories, etc. I have learned so much on here and people truly care!

Please keep us posted and even though we are not physically in Canada we are there with you spiritually!

Blessings!
Posted 6/1/2013 6:38 PM (GMT 0)
may you have a little peace today, PairieGirl
Posted 6/2/2013 8:28 PM (GMT 0)
I have to chime in here, I too lost everything last year from this disease. First my house, then my job, finally my driving ability.

I am getting better on the buhner protocol but I started it in January, so it has taking me about five months or so to really feel the impact of it.

The being at home and in bed part was the hardest for me too, I was a person that ran and ran. I had to learn to slow down, and not take for granted this life.

You will have some really bad days, but as you go through treatment you will find out that you will start to have some good days also. Please just keep up the faith, I am sorry you had to move, it sucks. Just take one day at a time or one hour whatever it takes.

justme
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