I am sick & tired of being sick & tired… I dont know what else to do or where to go for help… I am unemployed & I have no income… Im currently going thru “an episode” of feeling foggy headed, joints hurting & a tiredness that consumes my life & with little to no support from the people around me I fear things will never get better. I was recently denied SSI because according to them Im not sick enough…! So I have no insurance or income & the thought of getting a job scares me because I dont know how Im gonna feel when I eventually get out of bed because it takes a couple of hours to get my feet up under me so how can I tell an employer that I can do a job that I know in my head & heart that I cant? I am hoping I actually submit this to the discussion board because Ive wrote many of them only to delete them because I feel what good will it do for me to tell anyone how I feel? I just wish I could go back to my old life… Because Ive lost everything I had to Lyme disease my job, home, everything I own was lost to storage, no health ins, no real friends & no dignity… So whats left? How do I pick up the pieces? Where do I go from here?
Hi BDB,
The crisis hotline is not just about suicide, but about living in tough situations. They have some fantastic resources at their disposal that could be of tremendous help to you, and when you call, they put you through to someone in your area.
From my understanding, if you qualify there are numerous government assistance programs, you just need someone to point you in the right direction, and those people or a social worker would be the best people I can think of.
One of my friends on the fibromyalgia site put together a long list of help, and I'll go look for it now.
Hi BDB,
I have similar feelings, sometimes the despair is too much and it's all overwhelming - I know my past is gone, my future can't be what I thought it would be, and I want to find a way to "make the best of what can be", but I just don't know how/where to even start when it seems like things are in ashes.... I'm still hanging on to a job, but that's tenuous, everything else is shaky. I've only been on the board for a week - I haven't tried posting online because I don't feel comfortable "airing my dirty laundry", but at some point, there's just no pride left.
Stay with us, keep talking, there's support here. We care, we know what you're talking about when you talk about needing to take a rest just to get your feet under you. As for the job search, I think that's a "one thing at a time" deal.... you're not signing up to dig a tunnel, you're signing up to pick up the shovel for that one day, and then we'll see what happens on day number 2. Personally, I don't like that approach, but we can only focus on what we can control.
Please hang on, we'll get across the finish line together if we all watch each other's backs!! :)
Hi BDB,
Thank you for being honest about how you feel and what you are going through. I have had similar experiences, and I know many people on this site have too...so please keep your post up! I also got denied for SSI but am still fighting for it. I recommend getting a representative (doesn't have to be a lawyer) your local social security office will have a list of people in your area. I tried getting SSI for about three years before finally finding someone to represent me. It is free until I win my case.
If you are feeling like you lost all friends this group is a great place to vent and get support. Many of us have gone through the same thing you describe. I quit school and work a few years after getting sick and have lost all semblance of my former self- fun loving and adventurous has turned into chronically fatigued and ill. As LostGirl said though one day at a time. Looking too far forward is completely overwhelming! Hope you are having an ok day, please let us know if you ever need to vent!
Great quote, Richard!
Thank you dkel for your kind words. And I agree we are all still in there somewhere...can't always express it verbally but being able to "talk" by typing it out definitely helps. Until soon...
How are you, BDB, hoping that today is a little better, also hoping the link I gave you has something helpful for you!
Hang in there girlfriend! We're all pulling for you!
Hi BDB - I hope we hear back from you soon.! :) You've been in my thoughts and prayers - stay in touch.
Sorry its taken so long to get back to everyone but since I posted I have been so sick to my stomach that I couldnt do anything let alone read something but today is better than yesterday & hopefully tomorrow will be better than today… I have a question about pain because sometimes mine is simply unbearable!! Ive read quite a few post on here about back pain associated with Lyme & Im wondering if this disease is the cause of this terrible pain? I also apologize for jumping around so much from subject to subject but my memory isn’t all that great so I write what I can as I think of it… The lonesomeness is another huge downer in my life for example Ive spent this entire weekend sitting alone in my room & I find myself getting angry with others for “not caring” but being that they dont understand what Im going thru I try & give them the benefit of doubt though it still hurts to feel like no one cares & having the horrible feeling that things will never get better… Id like to thank everyone for their well wishes & I want you all to know I feel your pain & my prayers are with you all…!
hi am so sorry for you and this horrible disease that has us "UNDONE" want to "talk" to you more privately but need your e mail address... best not to post it here... are you on facebook??? maybe you can check with David the moderator... he can give it to you.... hope to talk soon...hang in there...) Richard
YES - PAIN IS TERRIBLE!!!! It's not just in your head... it's REAL!!!
Lyme can get in all of your joints, it seems to start in the major joints and then works it's way down to the smaller sized joints (examples based on my experience: lower back/hips, knees, shoulders, and then it moved to hands/fingers and ankles/feet). I believe it's a combo of inflammation of the joint and then after time, it turns into arthritis. The coinfections add to the pain, Bartonella causes LOTS of foot pain - it's almost unbearable to stand and/or walk, but with treatment, the pain does become much more manageable. If you're having muscle pain (especially spasms) you might even try some magnesium supplements - they've helped me quite a bit over the years.
Stay with us, keep in touch, and feel free to ramble and jump around (sometimes it helps to keep the conversation lively!!).
Hi BDB,
I too understand the terrible experience of pain that is unrelenting. As others have mentioned I find that staying as calm as possible and try8ing to meditate through it can help. I also take Tramadol and muscle relaxers for pain and spasms which are in all of my joints. Like you back pain is the worst for me. And as SK mentioned Lyme affects all of the joints and can even rotate between them. I suggest talking to your doctor about pain management and perhaps asking for referrals for acupuncture, massage, or physical therapy if you can. I just did physical therapy recently where I found out my pelvis was tilted, which added to the pain tremendously. Perhaps there are underlying issues contributing to your pain as well.
Lonesomeness is one of the worst parts about this disease; isolation, fear, pain and losing friends are all things that many of us have gone through...so please feel free to vent about it anytime. We are all here for support! Hope you are having a good day, sending positive vibes your way.
good post.. agree let's all "STAY IN TOUCH"...
Thinking of you BDB and hope you are doing okay. Let us know if you need to vent!
same goes for me too...!!!