posted
Hi everyone. I am just feeling so sick and depressed and completely hopeless at the moment.
I am eating the diet that my nutritionist recommended (including a weekly cheat day which I had today) and I am still losing weight.
I feel sicker and weaker each day, and I am still struggling with the abandonment of my friend.
I love my partner and my friends and father and I am still able to fake happiness, but my despair continues to grow each day.
I am extra frustrated that I am doing this nutrition plan and still losing weight. I just feel like it is all hopeless. I feel like I am just waiting for this to kill me, because I cannot kill myself.
I am completely disgusted with this.
I know so many people have it so much worse than I do and this is the only place where I ever complain or vent about this (aside from talking to one of my dearest friends who also has lyme).
Nothing ever improves for me. I feel THISCLOSE to giving up.
Thanks for letting me vent. Sorry if this is rambling. Jess
Posts: 870 | From ct | Registered: Nov 2012
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Carol in PA
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Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Sending thoughts of hope and healing for you. Believing that there is help for you, and that you can turn the corner. I don't know your story well but know that it is complex. Be kind to yourself.
Best wishes.
Posts: 873 | From WA | Registered: Dec 2005
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posted
Sorry you're feeling bad - I know you're at least trying your new diet program. I can't remember - are you scheduled to see any LLMD soon?
And then I guess my next question is for the board, for anyone reading this - are there LLMDs in the country who have experience managing people who are in Jessica's condition -
ie, experience of losing weight and needing to absorb nutrition? I'm just wondering if we need to connect with any other doctor's knowledge.
Posts: 13116 | From San Francisco | Registered: May 2006
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Ellen101
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posted
When is your appt with your new LLMD? Your diet seemed very restrictive so I'm not really that surprised you are losing weight. I'm also wondering if the loss of your friend is playing more of a role here and perhaps working on those issues with a counselor will help.
Posts: 1748 | From United States | Registered: Dec 2011
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Kudzuslipper
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posted
Jess. I am sending a big hug. You know what I think I think at this point you need good old fashioned medicine in a hospital setting to get your health back. I truly believe in llmd's and nutritionists, and forward thinking medical professionals... But at this point, I don't think it is the Lyme who is taking your health, I think there are basic nutritional needs that need to be addressed. And I think you need a new of eyes and a battery of new tests to give some new perspective.
Are you on anything to help out your mood? Some antidprsents and possibly counciling. I know you'll say "I can handle this". But if ever anyone needed some help to get through it is you! It's not a crutch, anyone would need it.
I feel like you need to give yourself over to someone/someplace to take care of you. You need to trust your loved ones not to let anything bad happen to you. You need to make th decision to get yourself complete 24/7 help before someone makes that decision for you. You will have so much more control and a better chance if you make this move yourself.
Does your husband read Lymenet? Does he know how you feel? Does he know the options available to you? Who does he go to for help in dwelling with this?
You need to keep fighting for your husband and all the poeple who love and care for you. And you need to keep fighting for you... So you can come back and write about all this and win a pullitzer prize for your great writing and ground breaking reporting!
Posts: 1728 | From USA | Registered: May 2011
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Kudzu-thank you so much for the endless support. I know that you believe I need to be in a hospital. I just cannot bear the idea of it.
I do not talk to anyone about this except one friend who also has lyme and I try not to bother him too much because he is also sick and dealing with a huge amount of stress.
I am not someone who shares their difficulties with people in general. I have an amazingly large fear of abandonment and my friend abandoning me recently has made those fears really rage again. As a result, I am keeping my emotions close and not burdening the people I love with how depressed and hopeless and ill I feel.
I am in such a dark head space and nothing is helping. I do not see the point in going back on antibiotics that will only make me sicker. I am clearly never going to heal to a significant degree at this point. Too much time and damage has passed, I feel.
I think my husband would be better off without me, frankly. He needs someone with a strong back and healthy body to love him. I love him more than life itself but I am sickly and sad and he deserves better. I feel like I have ruined his life.
I just see no end to this until this disease kills me. I am trying to keep my sense of humor and be happy, but it feels so exhausting. My head is never quiet and my body is never well. It is unbearable.
Sorry that this is so rambling. Thank you again Kudzu for the support. xo Jess
Posts: 870 | From ct | Registered: Nov 2012
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lululymemom
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Member # 26405
posted
It seems youre making progress.. Didnt you go from 84 to 89 pounds?
posted
Thanks cozy. I think the cruel words said to me by my "friend" and his abandonment are really breaking me down. And I feel immense guilt at burdening my husband with having a sick wife. Yes I know that he knew my situation going in, but it still pains me to think that I am keeping him "down". I also am incredibly worried that he is just going to leave me.
I have been quite suicidal throughout my life. I cannot kill myself because I have my father and some friends and Jeremy of course who would be devastated if I died. But I also feel that if anyone else abandons me, I do not want to live.
I would cope much better if I were not battling about 1000 symptoms every minute. UGH. I am just so sick and tired of being so ill and fighting so hard and never getting a reprieve. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
Oh, Jessica - don't for one minute feel guilty about being a sick wife - your husband married you "in sickness and in health". You deserve to be cared for by your husband and loved ones.
I know how despondent things can get - believe me - I've been there. It's a constant struggle for me.
Also, if you are at these depths, please consider going to a psychologist familiar with lyme (please pm me and I can send you a name near you). You do not have to go through this alone.
We are all here for you and can completely understand your plight.
Take one day at a time and, like Kudzu says, you should probably get another opinion about your situation. Trust your instincts.
I can't tell you how many times my leading LLMD has missed the big picture with my treatment. Fortunately, they are agreeable to hear what I have to say and are willing to modify treatment.
I know how tiring it can be to constantly be your own advocate - but it is something that will make all the difference.
And we are hear to be your sounding board. Trust your instincts and lean on us - we are here for you!
posted
Jessica, Have read many of your posts. Life is rough and dark for you right now, and I feel for you.
Having said that, we all want you to find that little bit of hope and optimism--yes, even when things seem impossible.
You've just gone to a dietician/nutritionist. How wonderful that you got in for that appt.
Give it at least three to four weeks, for your body isn't used to your new regime. Also, ask how long until you add more substantial calories/protein.
You've mentioned in several posts that you've dealt with depression and suicidal thoughts much of your life. I'm so sorry that your path has been so overshadowed by these.
Knowing you've had many different meds and talk therapy (from other posts), it seems you have had health issues come up that meant a different combination is needed.
Think about writing out or printing out sections of your thoughts and taking them to the doc next time. I realize some may not agree, and I'm not suggesting giving them to the doc, but rather reading or relating them so the doc gets the full picture of your despair.
Prioritize what your needs are. Weight and nutrition first, perhaps? Next or of equal weight, your depression/suicidal thoughts. Third, your other health issues.
Write a plan out, post it around your home, and stick with it at least three weeks. Daily rate your mood and health on the calendar with whatever scale you devise.
Journal, write letters to yourself or people who have impacted your life (you don't send them!), and examine these for patterns.
This last one may seem overwhelming, but I see my younger self in your youthful attitudes and pain. Ask your new husband what makes him feel loved and cared for. Write out ten things and post these. Try to do at least one a day. You also make a list of 7-10 items and post these.
For instance, one list I had once stated that having a cup of hot tea made for me helped me feel loved and having the laundry done completely (washed, dried, and put away) made me feel loved, and cuddling under a blanket while watching a show or listening to music for at least ten minutes.
Even when you feel like you can't lift your head or move, on the days when you can, giving of yourself to someone you love lifts you out of the blackness, at least for a time. Talk therapy and meds may be another part of the equation, and that may change as your body and chemistry changes over time.
Jessica, you are a person of value and have something to offer the world. Only you can discover what that is. Don't you dare give up, for the days when I want to shake you and say, "Grow up, I've been there, and I know you can make it," are often.
Though we've never met, we have met. Here. And there is more than just your husband and father. You would be letting us all down if you gave in to the despair. You would be letting me down if you did. I need you to succeed, too.
Now, go do something loving for that guy of yours, and then do something good for yourself, too. This cruddy path takes time to negotiate, and what else do we have but time.
Hugs, a finger shook in your face lovingly, and a prayer.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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posted
Reading through this, some of this is physical and some is emotional/mental. We definitely deal with all of this in our efforts to heal.
We're happy to chat with you here about what you're feeling, and I'm also wondering whether you might find it beneficial to connect with a really good psychologist to talk through all your concerns. I don't know if you could travel to see someone? If not, maybe phone consult.
I was referred to several prior to a Lyme diagnosis. I knew that psychologically, I wasn't causing my pain, but I found it very comforting and helpful to have a person trained in psychology to focus on me and ease my thoughts about coping.
I still practice some of what I learned. Like not blaming myself for what was or what wasn't happening, to focus on myself instead on what others would think, to be on my own side, etc.
Someone above here said they sent you a referral. Is this something you could see yourself doing?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Robin, I suppose so. I am not a big fan of therapy, mainly because I have a very hard time expressing my emotions to people. I am painfully shy. I am also really scared of being judged.
Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Keebler
Honored Contributor (25K+ posts)
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posted
- Jess,
Therapy is not just about expressing emotions. In fact, you can say that you'd rather not do that so much as learn more efficient communication and thinking skills.
It's amazing the differences in just how the words or thoughts are arranged as you think or say them. It's like a puzzle, and there are some fabulous communication styles that therapists can introduce you to without even having to express feelings.
In fact, any therapist that just sits while one expresses feeling but does not work at how one might better interpret, reframe, & think, speak and act differently is not much of a therapist.
It's about learning new skills. New LANGUAGE ARRANGEMENT patterns & styles.
Therapy is essential, I think, for everyone as it's really esquisite communication training that we get no where else.
It challenges us in ways that help us change, for the better the WAY we navigate stormy waters - or just make more solid plans - how to sort it all out and ORGANIZE.
And it can help us better know and love our real selves (and better appreciate the full range of human dynamics) in that process.
It can cut through a lot of muck & stuff, these skills. Saving us much turmoil in the long run with more efficient techniques and communication styles. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Bonus Day may be a good way to reframe "cheat" day regarding diet.
I will never understand why any diet counselor would ever use the term "cheat" or "cheat day" -- as, on a good healthful diet, there is no need to ever "cheat" and that language is dangerous and puts the patient down as a deliquent child when they just want to enjoy a treat.
Any diet allows treats. It's about how they are prepared, the ingredients, etc. There are always going to be certain ingredients we will never eat again - and that's just fine once we learn how to get the fabulous flavor in better ways, with better ingredients.
Sure, some days or times one may enjoy some options that are to be occassional treats. But, please drop "cheat" from your vocabulary. It's undermining.
And, as your situation is that you need to consume more foods, I'm puzzled as to just what the dietician might think is a "cheat" food for you:
fast food? Never a good idea because of the toxic fats from the methods used.
Sweets? Sugar is still not a great idea with candida yet there are always ways to get a sweet taste with glycemic balance. It's about now to combine. And that can be done daily. No need for "cheating" there, either.
Still, rather than that other word that you don't even want to verbalize anymore because our brains are just so literal, it's a "treat" - Enjoy.
That is just one way that therapy can help to reframe a way of thinking and language. Of course, when dealing with matters of the human heart, it's clearly more complex. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Someone may have already said this, but have you tried an anti-depressant. I have been where you are now and I was prescribed Prozac. It pulled me out of that dark, dark, place. It didn't solve everything, but I wasn't as hopeless. It can take 3-4 weeks to kick in thoough.
-------------------- "Sometimes you're the windshield; sometimes you're the bug." Mark Knopfler Posts: 111 | From East of Eden | Registered: Mar 2012
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posted
Homesick, antidepressants give me HORRIBLE side effects. I avoid them like the plague as a result. . Jess
Posts: 870 | From ct | Registered: Nov 2012
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Jess, IMO anyone who mentions suicidal thoughts is in dire need of counseling. Please call the therapist I told you about. LMK if you need the contact info again. This person has many years of experience and is not judgmental (any therapist who is shouldn't be a therapist to begin with!), is very well connected with the Lyme community and can connect you with topnotch LL docs and NDs as well as point you towards other resources you might not be aware of.
Even if you didn't mention the suicidal thoughts, just based on what you have encountered these past several months is more than reason to get counseling. You are carrying around quite a bit of baggage that needs unloading from your sick body. A good LL therapist will help you do that.
I also believe that your care would best be managed by a team--a therapist, a naturopath and an MD, all LL of course, as well as the nutritionist. There is an excellent naturopath in your state with many years of experience treating Lyme/cos. LMK if you need that contact info again too.
I hope and pray that this new LLMD promptly puts you back on TPN and knows what he is doing in that regard or at least can consult with a good gastro who can advise him.
You need sustenance, and with your digestive problems what they are I do not think it is realistic to think that you'll be able to gain 20 pounds just by following the dietary recommendations of the nutritionist. Your body is crying out for a nutrition intervention. Your gut needs to be healed and that's an area where a good naturopath will really be able to help you.
I think you are in your own way, so to speak, and you aren't seeing that. Jess, my concern at this point is that you will become too weak or too despondent to successfully advocate for yourself and your healthcare. If that happens, you will lose all control and you will not be happy with that.
I don't want to sound harsh or mean, but please try to look at yourself and your situation objectively without the baggage and emotions so you can see what you need to do to get your health on track. You need to take the bull by the horns and be more proactive regarding your health and other issues as opposed to reactive. Drive your own bus before someone else starts driving it for you.
I am thinking of you. xoxo
Posts: 1885 | From here | Registered: Jul 2012
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posted
Thanks Beaches. XOXO
Posts: 870 | From ct | Registered: Nov 2012
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beaches
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posted
Please take advice from the people here who really care about you. Posts: 1885 | From here | Registered: Jul 2012
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Razzle
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posted
Consider that this dark place you are in may be from the infections themselves, and not the real you.
There are options out there if you are open to trying them, for these emotional issues.
Bach floral remedies, homeopathy, counseling, acupuncture, polarity therapy, etc. can all help with emotional issues.
Many things have been suggested by others as well.
On the feeling badly that you've stuck your husband with a sick partner, I particularly understand that one. Being married myself, that is.
But in discussing with my DH, I have found his love transcends the physical condition of my very ill body, and we can connect by doing things together we enjoy, such as watching movies at home together.
And I think he wouldn't have married you if he didn't love you for who you are. The condition of your physical body is irrelevant to this kind of love, and that makes him a keeper
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Razzle, your comment is so well-said and so accurate and so beautiful.
Jess, you have a REAL man there. Don't waste your time and energy feeling guilty about being sick. That wasn't a choice you made.
Try to enjoy the simple things together, like snuggling up together and watching a movie or TV show, going to a cafe in your town for a cup of joe, watching a comedy/movie on HBO, cooking a meal together.
My parents were of very modest means so they (and us kids) weren't able to do/go/attend "insert whatever" Their motto was that "little things mean a lot"
And I have learned through the years that that statement is very true. It's the little things that really matter in the long run.
Posts: 1885 | From here | Registered: Jul 2012
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
up for Jess
Posts: 1885 | From here | Registered: Jul 2012
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posted
What a nice husband you have. Don't forget you also have some blessings...
Re your above comments about expressing yourself and not liking to be judged, therapy doesn't have to be about that. It can be a positive experience, sometimes an experience of providing some relief from painful feelings. It can be about other "thinking" options for you, and your therapist should be supportive of you and your feelings throughout.
We all grow up thinking that XYZ is the only reality there is, when in actuality, there are many ways of looking at life, ourselves and one another. It's good to learn some new options.
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I think at this point you need good old fashioned medicine in a hospital setting to get your health back. I truly believe in llmd's and nutritionists, and forward thinking medical professionals... But at this point, I don't think it is the Lyme who is taking your health, I think there are basic nutritional needs that need to be addressed. And I think you need a new of eyes and a battery of new tests to give some new perspective.![[Smile]](smile.gif)
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