The Emotional Side Of This

[Anonymousgurl]

deleted

[marciab]

Peace

Actually, IMHO, it's normal .... you have been traumatized by your illness and need to reprogram your thoughts ... I'm going through this too ... I don't have seizures anymore, but when I am tired and feeling a little shakey, I get afraid of having a seizure again. Mine weren't even that bad, but unnerving still and not something you forget.

I've had trouble walking since 1990 and am finally walking normally again. I've found that I have thoughts going through my head that were appropriate when I could not walk, but not anymore. I used to get really po'd if I went to Walmart and they did not have a motorized cart for me ... Consequently, I was a real b* by the time I finally dragged myself to the register ...

Now, that I don't even get tired when walking I have to reprogram myself not to get po'd when what I want is on the other side of the store.

I hope this makes sense.

Anyway, just start forcing yourself to live again a little at a time. Remember the movie What about Bob ? It's called taking baby steps ... Trust me, the happy feelings you get from living again, will make you want to do it more often ...

Now, if I can only make myself stop walking all around the mall ... Marcia

[mn farm gal]

I feel for you, I was there also. The only suggestion for you from me would be to make sure that you are totally gluten free, watch for the hidden gluten. Eat very simple things for a month or 2 to help heal the intestines. This gets boaring but is worth it. Then add the other gluten free things that you can make but first do plain meats, veggies and fruits. Try to go out with a friend for a shorter period of time even if it is to go for a cup of coffee or for a salad,(take your own dressing). This may get you into better thoughts. Good luck!

[tarnalberry]

*nods* Yep, fairly normal. Given the extent to which it's affecting your life, I would encourage you to work with a psychologist on this one. Your reaction is totally normal, really, and it's one you certainly *can* change. I only recommend someone who's trained in dealing with these situations to make a quicker, cleaner change than doing it solo would be.

[sunshinen]

it is completely normal to feel afraid of living again. i think the root is 1.) the unfamiliarity of it, how foreign it can seem, and 2.) fear that as soon as you really start to live, your health will disappear again. when you have been sick for a while the good days start to seem like hoaxes, like sick is normal and well is just a cruel joke that won't last.

BUT you have not been gluten free that long, chances are you STILL don't have any idea what well truly is, and while you already feel some better, you still are not truly well. things will continue to get better and in a few months you will have the energy and the mood to get out and live life. right now you are still healing and you probably aren't up to speed to fully get out there. that's okay. as marciab wrote: baby steps! take it slow. let your body heal and the rest will come.

[Guest cassidy]

I would be a bit easier on yourself. It is hard being sick for a long time and it takes a long time to feel much better. Even though you are better than you were, it doesn't mean that you are 100%. It is overwhelming to try to get out there and do things that are considered normal when you are used to being sick. I would give yourself some time and start slowly. You don't have to jump into everything but if you add one activity at a time it might be easier. You may wake up one day and feel so much better that you actually want to go out and do something.

Also, I think what you are going through is normal, but if it lasts for a lot longer, maybe you could get some help dealing with it. Dealing with life changes (even positive ones) is stressful and if you don't think you can get better on your own over time, then please talk to someone.

[Nancym]

I keep reading how vitamin D is connected to mood and heart function and even cancer prevention. It could be that since you've been cooped up being sick, your vit. D stores are low. People in the US tend to get pretty low, especially in the winter. You can take a supplement but you have to take one that has ... I'll butcher the spelling... cholecalcitrol and it should be in the oily form.

Its worth a try. Don't take too much though, it does get stored in the body.

Or, if you're in a place where the weather is nice you can get some sunlight on your arms and legs. But in the winter, the sun generally isn't strong enough in most places in the US.

[Looking for answers]

Hi,

Sadly for many of us who have been sick for years, our whole worlds have been turned upside down. Like someone who had a spinal cord injury and needs to learn to walk again, we need to learn to embrace life and transisition from being a "sickly" person to being healthier and more vivacious . . . this is an enormous step and it's completely normal for it to feel daunting. I think as you keep getting healthier and healthier this will become easier. Until then, don't be too hard on yourself and seek professional help if you need it.

My best,

Leslie

[allison]

I am also going through this right now--you are not alone! I am a little scared to go back to my everyday life--it often seems like it is all or nothing to me b/c if people see you doing some things, they assume you are ALL BETTER! and can do all things....not true! I think baby steps is right--otherwise you risk setting yourself back. I am trying to make this something positive too, but finding ways to deal with it now so that if it happens again (and with us it probably will though hopefully never again on this scale) I am better equipped to fight the batter. I hope...

I went to a mind/body psychologist today, and told her that what I really wanted was to find constructive ways to deal with feeling like poo and the pain of getting back to everyday life. So maybe that will help. I will keep you posted. I don't really have any experience with psychologists/psychiatrists that is positive, so hopefully this will change things.

[CarlaB]

I also have Lyme Disease and gluten intolerance. Are you seeing a Lyme specialist? Are you taking something for the Lyme and the co-infections? It really needs to be treated for you to get better and a specialist is the one to do it. We discuss Lyme a lot on the OMG maybe I can eat dairy again thread. Jump in on the most recent page as it's a very long thread, but several of us there are dealing with Lyme and gluten intolerance, so it's a unique type of support there. I can't stress enough how important it is to be seeing a Lyme doc and not just any doc for the Lyme disease.

Also, I take St. John's Wort for depression and it helps a lot. Much of the depression is caused by the Lyme and the gluten intolerance, and many of us need some help overcoming it. If you take any prescription meds, run it by your doc before you start taking it, but it helps a lot and you don't need to feel bad that you need some help getting back your usual humor.

[draeko]

I too feel the same way as you do. I have felt good for 2 days now but am afraid to do anything to "jinx" it. Just know you are not alone....

I can't wait for the old me to be back, but I do know Iwill have to work hard at it. Wishing you all the strength and courage.

Melanie

[Rachel--24]

It's like I don't know how to be healthy...does that sound weird? I just can't seem to live life again, it's like I forgot how...and quite honestly, I think I'm scared to.

I can relate to everything you've written. I feel like its hard to move forward when I'm constantly dragged down by illness. I think I've forgotten what its like to just wake up normal and live life the way I used to live it. Its like I went from being happy and care-free to the complete opposite and some days I'm scared it'll always be this way.

I think its normal to have these fears....especially when our lives have been turned upside down.

I read your other thread and I can relate to the weight issues your're dealing with as well. I lost alot of weight but its gotten alot better this past year. I am very restricted with my diet due to many food/chemical intolerances. I only can eat a handful of foods right now.

I have Lyme Disease too. I'm pretty sure its what caused my gluten intolerance and probably thyroid disease as well. I agree with what Carla said about seeing a Lyme Specialist. I think its pretty much essential for recovery from this.

Have you been treated for the co-infection? What about Lyme itself??

I've only been recently diagnosed myself after 4 years of being really sick.

I find if I get a little overwhelmed or stressed my symptoms will get worse and depression sets in. I've been gluten-free for over a year and a half so I think my body just gets run down easily from the Lyme. All of a sudden it will be harder for me to cope with small things. Lyme creates neurotoxins which affect the brain (among other things) so its easy to become overwhelmed and depressed.

It really is baby steps...eventually you'll be ready to take bigger steps and get right back into living your life. Give yourself some time to heal. If you havent been treated for Lyme or seen a specialist...(not an infectious disease specialist)...I think it would be an important step in your recovery.

[Anonymousgurl]

WOW...thank you so much for your responses everyone. Your stories and advice made me feel a tiny bit better...because sometimes it just helps to know that you aren't alone. It also just helps to have some human contact outside of my family, because obviously I haven't been all that social lately, haha! It helps with that lonely feeling. But anyways...you guys are all amazing...the support you offer, and how QUICKLY everyone jumps to help....you all have great hearts.

Allison- Please do keep me updated! I too haven't had great experience with psychologists, my mom got me one that our insurance covered and she was HORRIBLE so now I'm just left to fend for myself. So I'd love to hear what the person you are seeing says! Really, please do keep me posted.

Carla- Yay, someone else who knows what it's like to have lyme! I am indeed seeing a lyme specialist. He's an M.D. but he specializes in Hollistic/Homeopathic medicince. Is your doctor homeopathic? You know, I think I'll take you up on that and join the board you were talking about. I'd love to compare notes with some of you.

Rachel- It's amazing how similar your story is to mine! It sounds like we might have gone through a lot of the same things. I'd love to hear more of your story.

I'd love to continue to hear stories or advice. you all are so great.

[Rachel--24]

Rachel- It's amazing how similar your story is to mine! It sounds like we might have gone through a lot of the same things. I'd love to hear more of your story.

I'm really happy that you're seeing someone knowledgeable about Lyme.

My Dr. is an M.D. who specializes in homeopathic medicine as well. He mixes both types of modalities...so he does use traditional medicine as well.

I was REALLY sick for over 2 years and had to be off work during that time. I couldnt function well and my mind wasnt too clear most of the time....MAJOR brain-fog. None of the Dr.'s could find anything wrong with me so I kind of got the "its all in your head" diagnosis after having a million tests done. Noone ever mentioned Lyme though. I asked my neurologist if I could have it...she said no. I asked the Infectuous Disease Specialist to test me and he refused. I mentioned that I believed I had Candida and he pretty much laughed me out of the building.

I ended up getting myself somewhat better by going totally organic and not eating anything processed...only drinking water...stuff like that. A major overhaul for someone who's favorite resteraunt was McDonalds.

I have to avoid chemicals, molds, stress.....all the things that bring down the immune system. I can really feel the affect of these things....especially stress. I actually think stress is what "triggered" the Lyme infection to begin with. I'm pretty sure I had it for at least 2 years before it overcame my immune system and got me sick.

In the beginning I felt really poisoned.

I still worry about my weight sometimes but not as bad as last year. I was really self-conscious about it and feared people would think I was anorexic. I was down to 94 lbs. at that time but now I'm pretty stable at around 110. I would love to be able to gain more though....its kind of hard with such a restricted diet though. Alot of foods that I'm intolerant to actually cause me to lose weight so I really do have to stick to my few "safe" foods if I wanna keep my weight up.

I saw my Dr. for the first time in Sept. and right off the bat he wanted me tested for Lyme. My main complaint going in there was multiple chemical sensitivity and food intolerance. I have alot of other symtpoms but these are the ones that hold me back from living life. I feel I can deal with alot of the other stuff if I could just get these things under control. Eliminating alot of the toxic stuff in processed foods, avoiding alcohol, gluten, etc has really helped my mind and I can think alot clearer now.

My Dr. tells me that this is a lonely disease I have...and he's right. It takes everything away. I sometimes feel trapped because I have the "desire" and even the "energy" (some days) to do all the things I enjoy but the environmental sensitivities rob me from getting out there. I'm always scared I'll get sick. This is the worst part for me. I miss my life and it gets really lonely but at the same time...I push everyone away because its hard to be "different" and to not participate the way I'd like to.

I just started my Lyme treatment yesterday. He started me on TOA-free Cats Claw. An herbal treatment for Lyme. He didnt want to attempt antibiotics yet because I have too many sensitivities, big candida problem and I'm too toxic already.

I go to treatments twice a week for trying to reduce all of the sensitivities. My immune system apparantly went haywire and started reacting to *everything*. It sucks but I have to remind myself that I'm in good hands now, they're figuring it out and even though its a slow process I'll be working my way toward better health.

I went 3 1/2 years undiagnosed so I think that makes it harder on me.... sometimes I'm impatient.

I started a thread 8 months ago...when I was trying to figure things out on my own. Alot of people with similar symptoms joined me and we've learned alot along the way. I found out I had Lyme in Oct. and CarlaB...and a few others have also been diagnosed since then....some people are still waiting for test results.

We're all pretty new to this and learning together....you're welcome to join us if you'd like.

Open Original Shared Link

Just go to the last page and jump in...

[Anonymousgurl]

It's amazing how similar our experiences are. Thank you so much for opening up and telling me your story. It really makes me feel less lonely to know that someone else out there is experiencing similar things and feeling the same way.

My Dr. tells me that this is a lonely disease I have...and he's right. It takes everything away. I sometimes feel trapped because I have the "desire" and even the "energy" (some days) to do all the things I enjoy but the environmental sensitivities rob me from getting out there. I'm always scared I'll get sick. This is the worst part for me. I miss my life and it gets really lonely but at the same time...I push everyone away because its hard to be "different" and to not participate the way I'd like to

You just stated EXACTLY how I feel. This pain, these sensitivities...they're robbing me of my teenage years. I feel like I'm completely missing out on the normal teenage experience and I'll never be able to get this back. How do you get through it all on a daily basis?

It sounds like our food sensitivities are quite similar...and for me that's one of the hardest things to deal with. Food sensitivities and weight. People judge me based on both of those things, and it sounds like you have that problem too. How do you deal with that? Holidays? Restaraunts? It's all so tough.

Thanks again for sharing, it just helps to be talking to someone.

[tarnalberry]

I too haven't had great experience with psychologists, my mom got me one that our insurance covered and she was HORRIBLE so now I'm just left to fend for myself.

Some psych's suck. A good doc/patient relationship here is all about interpersonal compatibility, and you won't be compatible with everyone, so if you decide to go that route at some point, don't be afraid to do a little hunting around, and asking for recommendations.

[Rachel--24]

You just stated EXACTLY how I feel. This pain, these sensitivities...they're robbing me of my teenage years. I feel like I'm completely missing out on the normal teenage experience and I'll never be able to get this back. How do you get through it all on a daily basis?

It sounds like our food sensitivities are quite similar...and for me that's one of the hardest things to deal with. Food sensitivities and weight. People judge me based on both of those things, and it sounds like you have that problem too. How do you deal with that? Holidays? Restaraunts? It's all so tough.

Actually, I think this board has helped me tremendously as far as dealing with this. The friends I've made here and just having such a strong support group of people who really can relate and understand all this.....its helped me ALOT. I dont feel quite as alone.

I'm not a teenager but I can definately understand that being sick during that time would be very hard. There are positive things to think about though. One thing is that you have a DIAGNOSIS...and a good Dr. There are so many others who dont have that and they might be sick all their life because they dont know whats wrong or how to fix it.

I expect that since you're young and you have a diagnosis and a treatment plan you're gonnna get better and not suffer unnecessarily for many more years. It might *feel* like a lifetime is passing you by.....but in reality...its a short amount of time in the big picture. You've got your whole life ahead of you.

I'm in my thirties....so I've already experienced all the "fun" stuff and was just getting to the point of wanting to settle down and have a family. So....this pretty much threw a big monkey wrench into those dreams but I still have time. I just really focus on what I want out of life and I know I need to be strong and disciplined to beat this and get my dreams back. Actaully I think the illness has taught me how to be a better, more compassionate person and I dont take the little things in life for granted like I used to. I cherish them now.

The food stuff is hard. I dont feel like people are judging me but I dont really put myself in situations where I'd feel uncomfortable or out of place either. I dont mind going to a resteraunt and just not eating. If I'm with one or two people its fine. Probably if I was with a group of people that I didnt know very well...I'd be uncomfortable....because everyone would be asking me questions.

I learned I need to take care of myself first and avoid stressful situations. I try to only surround myself with the people who are caring and understanding. I wouldnt put myself around people who made me feel bad....simply because I know at this time in my life...its not the healthiest thing for me. I cant deal with things the same as I could before I got sick and I'm WAY more sensitive.

Just try to be strong and hang in there....better days will come.

We *are* lucky in that we have answers as to why we're sick. My mom knows someone whos daughter is your age and she is pretty much crippled with arthritis and so many other problems. Shes doing very badly....cant go to school and cant walk very well. Shes been diagnosed with Fibromyalgia and the Dr.'s say they cant do anything for her. I just feel like she probably has Lyme. I printed alot of info. for them but they werent interested and just trust that the dr.'s are right.

She might be sick her whole life if they stick with these Dr.'s and it makes me really sad.

You, on the other hand, are gonna get better.

[CarlaB]

Hmm, when I edited this post below, it reposted it, so I deleted this one.

[CarlaB]

Rachel has had excellent advice for you. I'm having a bad Lyme day today, so my brain just doesn't feel like it's working ...

I'm not a teenager either, in fact, I have six kids, three of them teenagers! As Rachel said, I just found out last December. A friend of mine (I have lots of friends on this board, this is a friend I actually see in person! ) also just got diagnosed with it. She really felt lost and discouraged by her diagnosis, but with the friends I have on this board, I felt thrilled. It's not a Lyme board, but there are several of us here who also have Lyme.

I've most likely had Lyme since I was 9 or 10, but only suffered from fatigue as a symptom until I was 19 and in college. Fortunately, I am someone who just needs to read something and I remember it, or I would have probably had to drop out from the severe depression and fatigue I had then. My roommate got so worried that she took me to the emergency room, but the docs told me I just drank too much and didn't get enough sleep (I did drink some, but drinking has never really agreed with me much).

About 2 years ago I started dropping weight. I don't have the food sensitivities that Rachel has, so I can eat whatever I want as long as it's gluten-free. So I eat a LOT of food! I even eat at 10PM right before I go to bed. I do maintain a healthy weight this way, but people can't believe how much I eat. It's actually a joke with my husband and kids that I'm really a Hobbit -- they'll see me eating and say, "Oh, is this second breakfast?"

What I think has saved me all these years is that I've always eaten healthy. Yeah, I loved McDonald's, too, but I ate mostly healthy. Even in High School I would eat a salad every day for lunch. I just felt better when I did. My mom always cooked from scratch, so we ate healthy at home, too. I made smoothies for breakfast every day ... mind you, this was before I even knew I was sick!

I am seeing a Lyme specialist in New York ... I live in Ohio and I'll have to fly there. It's worth it to me to do what I need to do to get better! There is no specialist in Ohio. Mine integrates both conventional and natural medicine. I've always taken lots of supplements, and it's funny that the ones I've always taken are almost all recommended for people with Lyme. I've just been in touch with how I feel and take stuff that makes me feel better. I've also started on the Samento (TOA free cat's claw) that Rachel mentioned. I have a far-infrared sauna at home and I take one every day.

I've had three other flare-ups that have made me really sick and not capable of living normally. The other three times, I didn't know it was Lyme, but it went into what I'll call remission and I lived normally. I know intense stress sets it off. If I had known that when I was your age, I would have been able to avoid causing the disease to flare-up. Apparently, it's something we will always have to live with, but if you can learn to control the disease instead of it controlling you, I think that's the most important thing. I think this time I probably will need antibiotics as I just don't feel like I'm getting the upper hand. That's okay though, the natural is better, but that's what antibiotics are for ... for when we need more.

In addition to the samento, I also do a salt/vitamin c treatment (www.lymephotos.com) that is really what made me find out it was Lyme in the first place as it caused a herx reaction. I also take garlic, a natural antibiotic.

I am glad you feel less lonely ...

[allison]

Hey--forgot to mention that I'm 22 and I had this all through college! So I feel you big time!!! Especially because young people (our friends) who are so excited to have lots of energy and fun at this point in their lives have a hard time believing and understanding how we feel. You have to drill it into them....

[Anonymousgurl]

Hey--forgot to mention that I'm 22 and I had this all through college! So I feel you big time!!! Especially because young people (our friends) who are so excited to have lots of energy and fun at this point in their lives have a hard time believing and understanding how we feel. You have to drill it into them....

Oh my gosh...EXACTLY. How did you deal with it all? I'd love to hear your story. For some reason it just helps to know I'm not the only lonely young person out there, not out having the time of my life...LoL.

[AmandaD]

This may sound really simplistic. I try to completely distract myself with being consumed with my health or with food.

What I've learned to do is get crazy busy with something. Whether it's my dogs, or taking up a new hobby - like building a dollhouse for my kids with shingles and paints and wallpaper, painting a room or deciding I'm going to totally get into the Harry Potter books. I try to diffuse my stress and often my frustration with having Celiac by focusing on other things entirely...

Just thought I'd throw it out there...all that kind of stuff can really combat loneliness...

[Anonymousgurl]

This may sound really simplistic. I try to completely distract myself with being consumed with my health or with food.

What I've learned to do is get crazy busy with something. Whether it's my dogs, or taking up a new hobby - like building a dollhouse for my kids with shingles and paints and wallpaper, painting a room or deciding I'm going to totally get into the Harry Potter books. I try to diffuse my stress and often my frustration with having Celiac by focusing on other things entirely...

Just thought I'd throw it out there...all that kind of stuff can really combat loneliness...

It's so funny that you say that because I feel like I always HAVE to be busy. If I sit down and surf the internet for a while, or find myself with nothing to do, I become consumed by anxiety and a horrible lonely feeling. I feel like I always have to be moving or else I feel like a "loser" stuck at home with nothing to do. I know being "busy" all the time isn't good when I have chronic fatigue, but even though i'm exhausted i still feel better on the go (more emotionally than physically I guess).

[ajay]

Some psych's suck. A good doc/patient relationship here is all about interpersonal compatibility, and you won't be compatible with everyone, so if you decide to go that route at some point, don't be afraid to do a little hunting around, and asking for recommendations.

It's not unusual to talk with a few psychiatrists before you find one that you like & can work with. It's harder when you're limited by the insurance company. I would encourage you to try meeting with a few different ones and see if you can find someone to talk to. At this point, you deserve to have every possible thing that can help you, and a good shrink can be part of your healing process.

Good luck. I'm sure you'll find plenty of support in Rachelville!