Jeez. What a year. Chronic Lymes flare ups (4 just this year!), loss of job, loss of health ins, Rocky Mountain Spotted caught late with vascular damage in shoulders, and endless job searches and losses. Can’t do the only work know how to do anymore: the fatigue, the anxiety, the arthritis, inflammation, shoulders weak as hell. Worst part is no one, and I mean NO ONE in my life understands. I’m a large fit male and my body doesn’t work right, not to mention my chaotic stupid brain. I know people do get by in their lives with much worse, and I never stop trying, I just can’t find a situation that works. My impressive resume was formed with pure will and resilience despite 27 years of lymes, ehrlichiosis, and babiosis and RMSF and no healthcare but clinics for 12 years. I’m just lost for what to do now. I make shit money and still have to slug out hard labor while supporting a wife and two kids, but now the will isn’t there and nothing lasts for long. I know none of you can solve my problems and you all have your own, I just needed to get this out there. I need a miracle right now, but I’m too ashamed of my life to even ask. The hell am I going to do?
NaturalE, I’m so sorry… just because there may be others whose struggle appears to be harder than yours, does not invalidate the struggle and hardship you are facing… so I am so sorry. I know not everything works for everyone, but have you heard of the Keto diet? That, along with a huge amount of supplements, seems to finally be helping me… I know it’s just another thing to think about/add to your plate. So if those suggestions overwhelm you, just disregard them. But don’t give up! You have pushed so hard for so long, don’t give in now. You are the same person with that strong will and motivation that you had before… the path you take may have to be different than what you are used to, but you can do this! I wish I could be more of a support, but I just want you to know someone is thinking of you.
Thank you, exactly what I need to hear right now. I have heard of Keto and will try it. my wife and i are looking into it right now, dietary changes can be difficult, I did one this year that didn’t do a damn thing as far as i could tell. Seriously, thank you for your kindness. it means a ton.
Natural E…as Kenai also stated, I am sooo sorry for what you’re going through. And yes, as bad as everything is about l ymes - people not understanding is worse. It’s almost as if even if they try, no One truly seems to have any grasp unless they have it. So I’m glad ur here posting your feelings. I keep trying to find a support group in real life, but it’s almost impossible or impossible to make it there. So, vent here, what else can you do. WE ALL GET IT. Job losses are tough to take, but try to remember life is hills and valleys. You won’t always have a flare up. And you can learn a new skill even if the thought of that with brain fog seems daunting. I just moved across the country and I’m scared as heck. I can’t believe that I left my exfiance and now have to support myself again, but that was two years ago. And I couldn’t physically move farther than my couch for a year. Due to the exhaustion and pain. I don’t know of the kept diet, but proper nutrition certainly helps…even if flares happen sometimes when you’re doing everything right. Oh, my brain fog is truly helped only by taking mass quantities of Now brand Aceytl L Carnitine. Tons vit c, magnesium controls my muscular twitching now as I’m late stage as well. Only 17 compared to ur 27…cant even imagine. I’m proud of you for carrying on and continuously doing ur best to care for your family. And it’s actually okay to feel like you don’t have the will anymore…i think we’ve all been there. Well, maybe not, but I certainly have. Still kinda there, tryin to crawl out for my son.
Thank you so much for offering your kind support. lymes is a lonely disease, isn’t it, with everything else? wishing you all the best in your struggle, i will keep faith with you all as needed. i really can’t thank you enough for your words.
Serenely here…yep super lonely. I’m here if you need anything else in way of support. Vent, yell if this had gone to private email I’m so non techie, uh you can swear all you like. Ur doing the best you can. And so am I. And so tired of no one who grasps it! Take care of yourself. Go outside, breathe deep and watch the clouds for a bit. Our creator is always here for us…or whatever made though amazingly changing tiger clouds, then hippo. And smile irregardless. I put makeup on near everyday. Which both helps and doesn’t. No one sees how sick and exhausted I am - On the flip side, it helps me to cover the exhaustion, spend some time looking at myself and saying see, if I look good I can pretend I feel for just long enough to workout so I don’t hurt any worse than I already do. Ha, just hypnotized myself into faking it through another ten minutes…BET U THOUGHT I was gonna say DAY lol! Hell no, not with this flare up!
i’m lucky in that my kids help me forget for very short bursts. i’m moving on from my career, being a chef just doesn’t gel with my condition. i’m not trying to boohoo, but i know you understand. spent almost all my time in the business, tried going alone, running kitchens, just working. i’m damned good at it, but inevitably my symptoms worsen. running into folks like you and is helpful; i am grateful. damn hills and valleys though right? you take care, and thank you for taking time to be there. feel free to expect the same.
Hey NaturalE,
For a start welcome to the Ben’s Friends Network. I’m glad you’ve reached out for some assistance and others have replied. I know invisible illnesses are the worst, that lack of comprehension and understand from others is HUGE. I have often said “…it would have been easier if I’d lost a limb…” people would be less inclined to pass judgement if the could see. We spend our whole lives building a career only to have it all taken from us and it can be so soul destroying. We can only push ourselves for so long before our bodies push back. Other’s talk of ‘pacing’ ourselves, but prior to my situation I had 2 speeds, full tilt and stopped. Now I can’t do more than a day without ending up bedbound and that’s only at half speed. It used to be that determination kept me going, not anymore.
Being a male, I know the expectation too, even if it is a self imposed expectation. I kept pushing and my wife sat me down and simply told me ‘stop’ as she could see the results. Others talk of acceptance and I had a real battle with accepting this, but slowly I am learning to accept. I had to do the un-man-ly thing and ask for help and as difficult as it was, it was one of the best things I could do. It assisted me in changing the focus from what I couldn’t do to what I can still do.
I do hope you can find that assistance you need, but know that there are others dealing with similar scenarios and many of them are willing to give you the help and advice you need.
Merl from the Moderator Support Team
Merl, I can’t thank you enough for reaching out. It is incredibly inspiring to hear others speaking my reality, and I am now seeking help to revise my life to suit my issues. As we all must. I am pursuing a different career, though it pains me greatly, but my kids are worth it. I wish you many great things and again, I appreciate you and everyone at the LDSN.
Eric R Larsen
NaturalE,
I also left a career I loved, copywriting/marketing/advertising – what I had wanted to do since I was about 12. I have chronic migraines and in the end even the fun stress of working in the field I loved was too much. It took some doing but I was able to redefine myself and my life without advertising. I actually found a job that I’m damn good at, member services and escalation resolution. The beauty of it is there is zero stress. I clock in, work 8 hours, and clock out. If I’m not signed in, I don’t work. Period.
At first I felt stupid and useless, like I was working below my intelligence level. Then it occurred to me I was being VERY intelligent and taking care of myself before my career. Then I decided I didn’t need a “career” anyway, all I needed was a pay check. Ah, bliss.
So now I work a schedule that fits my physical needs, I make enough money to pay my bills, and have enough left over to keep three very spoiled parrots in very expensive bird treats and take my two huge dogs to the groomers 4 times a years – not to mention spending way too much of the time that I used to spend worrying about working shopping online for my dollhouse hobby!
You can still be a master chef at home, on your terms. Maybe set a goal to get on Chopped or some other Food Channel show! You can do that on your terms. I no longer write award winning ad campaigns, but I do write a mean short story and send it out for possible publication on my terms.
I think that’s the trick, actually, you need to learn how to live your life on your terms in a way that works for you, not for a career. Make sense? And trust me, it can be done! I’ve done it and am better for it!
azurelle
I couldn’t agree more. The moment I learned that what I loved about my career didn’t supersede what my life requires I knew I was done. It’s taken a lot of perseverance but I have just recently found a way to do it, and still pay the bills. It’s very hard to go from an excellent paycheck to an entry level one, but I have found a way that isn’t driving my body and mind into ruin. My wife and I are planning on continuing to try diets until we find one that works best for my Lymes, and I take Sam-E and other supplements which are starting to help. I can’t thank you enough for your kindness and support, and for sharing your story. All the best, my Lady!
Eric
So now you actually just sprang a tiny crack in my heart, for the both of us! I hear your passion for it and loss. I taught myself to cook when I was 18 cause my mom was uh, bland to put it mildly. Since then & need for nutrition, totally spent hours watching mostly Rachel and Guy okay well lots others too…id almost like to be a personal chef, but clearly that ain’t gonna happen. I’ve got Neuro lyme. So between the migraines not being able to stand upright alot, and periods of excruciating pain and dropping things, well you know. I decided on personal training since I have to spend my time at a gym for relief anyway. Otherwise I clearly hate all my muscles and ligaments all of the time. Prayerfully it works out and I can just schedule with clients and work around icing my head what seems like all of the time. Kids are a great distraction. Glad yours are helping you.
Hello Eric,
Believe it or not some people do get it, perhaps your just not related to them. To relate, myself I was deserted by wife the same week I was diagnosed, over the last four years, have been broke once or twice and had to sell off some retirement things to make it. Quite a few jobs myself.
On the bright side, people can heal from Lyme once and for all, almost there myself, my testosterone has been normal the last 18 months or so. It seems emotional stress is taking a tole on you, as it does all of us.
What treatments have you tried? Antibiotics do not work, and may help only in the short term. What the CDC tells us is inaccurate. Allow me to make a couple of suggestions.
Check out a website called envita.com it has great educational videos on the disease, and how the real treatments work. Myself prayer and a treatment called LDI (low dose immunotherapy) have saved my life.
The shots are affordable, I dont know what ins would cover it anyways, my Doc does not offer them for the money but do heal people, hope you can find someone like him. They cost around 60$ every four weeks or so in my case, plus the office call every two months.
Also the natural products called Reserveratol and cats claw proved very helpful on my case as well to keep the Lyme dying.
As you know, EVERYONE FIGHTS,NO ONE QUITS!
Raybo,
The brightest side of my most recent experiences has been folks like yourself sharing of themselves. I will check out the envita site once i’m done responding, and i’ve been implementing a ketosis diet for a couple weeks now. ugh! is all i can say. once the herxing stops things get better, temporarily, but aside from rosefrin nothing stops the lymes for longer than a few months. i mean thc helps i guess but i don’t have time for that stuff anymore. all that said, i appreciate you and that you took time to reach out. all the best forever.
Eric