Topic: How to cope emotionally when I can't handle therapy?
SunRa
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Member # 3559
posted
I've lost a huge chunk of my 20s to this illness and all the stress (social, financial, family, etc) that comes along with it is just too much to handle anymore.
I've been feeling physically and mentally worse the past year and I'm not coping too well.
While I have a few supportive people to talk to in my life, most don't really get it and I also feel my problems are too heavy to put on someone else so I just withdraw into myself a lot. Of course I also cry at the drop of a hat!
With my head/brain symptoms, all my old coping methods - listening to music, creating art, playing guitar, exercising, etc - are too difficult for me to do now and only end up making me more sicker and more frustrated.
Also because my worst symptoms are in my head, I'm having a really hard time meditating or doing any kind of creative visualization. with my brain being so infected and toxic, I feel I've lost control over my mind and it's a terrifying feeling.
I know some people with brain symptoms are able to do it, and I used to be able to meditate in the past, but no matter how much I try, I just cant.
I feel like I need a therapist, but one of the hardest things for my brain is to talk a lot!!! especially in person when there is more sensory overload. Just trying to have a 2 min conversation with someone in person is often impossible. trying to organize my thoughts and get coherent sentences out makes me sicker and panicky...
I feel like I'm on a bad acid trip when people talk to me. I generally can't listen or comprehend what anyone says to me. If someone asks me a question, I often panic and even though I know the answer, I can't really put it in words until later when I'm by myself, away from people, noise, lights, etc.
So that's why I haven't tried therapy. It would only make me flare rather than feel better. I'm better with the phone, but still, there are weeks at a time when I can't even handle that and I'd be rescheduling appts left and right.
So how do I cope with all the emotional stress???
anyone with bad neuro symptoms have this same problem?
Any ideas would be deeply appreciated.
peace & gratitude, SunRa
[ 03. October 2006, 11:05 PM: Message edited by: SunRa ]
Posts: 1563 | From MA | Registered: Jan 2003
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posted
Well, if you don't get treated, you will not get better. No amount of talking therapy will cure lyme.
Any chance you could try HBOT or is that too expensive? Have heard of some cases of brain fog that were helped by questran.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
SunRa...OH MY GOD...I KNOW EXACTLY what you mean and reading your post was like reading my own mind...Just this morning I posted, "AM I GOING CRAZY". The typical coping mechanisms just dont cut it...seems nothing is satisfying, comforting, etc. I keep telling myself that its not me and that its the sickness, but regardless what "IT" is...IT still IS. I can only tell you what I do...I FORCE myself to run, swim, bike...when I first start out I want to cry and have a temper tantrum because I just DONT want to do it and I feel too tired and sick...but by the time I'm done I actually feel better...especially "head" wise for at least a little while and during that time I sort of feel "normal" again. Some days though, just the thought of running or doing anything makes me want to just cry! Most of the time I feel like I FORCE myself to do just about everything...sometimes that works and sometimes it doesnt and when it doesnt I stop and do whatever it is I feel like doing or sit there and ride the crap out...while my head spins and I think I'm going nuts... I feel like I have windows during the day that I actually feel ok...but most of the day is like damn torture and what is so frustrating is that no one really "Gets it" and so I dont say a word to anyone...I just trudge through it... I dont want to be negative...but the reality is what it is. What meds are you on? I'm trying the CSM deal (cholesterol meds) and hoping that this horrid head game is the storm before the calm.
Is there ANYTHING that works even a little for you? How DO you get through the day??
Posts: 45 | From NJ | Registered: Sep 2006
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posted
Lou... whats HBOT? I agree...no amount of therapy is going to cure this stuff! What will though?
Posts: 45 | From NJ | Registered: Sep 2006
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
quote:Originally posted by lou: Well, if you don't get treated, you will not get better. No amount of talking therapy will cure lyme.
Any chance you could try HBOT or is that too expensive? Have heard of some cases of brain fog that were helped by questran.
Hi lou,
I've been at this game for a long time, being treated along the way with all the abx/herbs in the world.
Thank you for the suggestions though. I wish I could try HBOT but it's insanely expensive. And unfortunately Questran has additives/sugars that I'm allergic to and it's too expensive to get at compounding pharmacy.
I'm still searching for the right treatments for me, and of course therapy won't cure lyme, but right now I just really need ideas for coping.
Posts: 1563 | From MA | Registered: Jan 2003
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posted
I see. Got no ideas for you. Music helps me, but you already do that. Guess you know there are herbal treatments that some people like. Samento, etc.
Run - HBOT is hyperbaric oxygen treatment, like divers do to avoid the bends. There are some medical uses for this as well. But it is expensive, takes a lot of treatments, and ins usually won't pay.
Posts: 8430 | From Not available | Registered: Oct 2000
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SunRa
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Member # 3559
posted
Hi run4fun
thanks for your response. I'm so sorry you have similar problems.
due to certain symptoms, I can't force myself to exercise much, but I do find some peace and laughter playing with my dogs. I don't know how I'd cope without the unconditional love of animals. The best part is you don't need to explain anything to them!
That and deep yogic breathing help at times.
I guess what gets me through the days is the faith that I have the capacity to be well again someday.
Posts: 1563 | From MA | Registered: Jan 2003
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SunRa
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cave, thanks for the encouragement. ahhh I can't wait until this is all a distant memory...
Posts: 1563 | From MA | Registered: Jan 2003
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The symptons that you are referring to are mostly neurological in nature. I am sure that you know that. HBOT ( Hyperbaric Oxygen Therapy )is an adjunctive therapy to antibiotic therapy. It facilitates the crossing of the blood brain barrier.
The therapy is most effective when used in conjuncition with other therapies as well. I have also seen chelation added to the mix. To remove heavy metals from the brain which can keep you from getting better.
I know that HBOT is expensive. But I firmly believe in the therapy and I offer it primarly to those affected with lyme. It will clear up the brain fog that BB causes because it replaces the oxygen that the spirochete takes away.
BB does not like oxygen! So it creates a great host enviorment in your brain...
If you are interested in the therapy I do offer it very affordable as compared to other hyperbaric facilities. I am in New Jersey, let me know if you would like some information on the therapy.
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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arg82
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Member # 161
posted
I'm so sorry you're feeling so awful. I know how awful this disease can be, especially when it's affecting your brain so much. I have days (or weeks or months) where I just get so exhausted from conversations.
I'm a little different from you in that phone conversations are actually more tiring for me because I sometimes have trouble understanding what people are saying over the phone and during an in person conversation at least I can look at their facial expressions and read their lips to some extent.
I don't have any great advice of things to help. Do you have an LLMD? (If I remember correctly, we e-mailed before about your LLMD.) It sounds like you're having trouble tolerating any kind of treatment. Does your body overreact to the medications? If that's why you can't handle medications, PM me and I'll give you some info on someone who might be able to help you.
If there are other reasons why you can't tolerate meds, please let me (us) know so I (we) can try to think of something else that might help.
I am thinking about you and sending lots of good vibes your way. We are all here for you. And feel free to PM or e-mail me if you need to talk or need anything!
posted
Hi SunRa- You seem to do well in organizing your thoughts in writing-and that's exactly what I do for therapy with a social worker.
I write, type, my thoughts down on the computer, print and take them to therapy and read them outloud. It's the best I can do for now.
If I don't take a written list of things to talk about then there is silence and long pauses while I try to organize my thoughts .(not very cost effective)
I also keep a spiral notebook next to my bed, and when I have something I want to talk about with her I hand write it down and take it to my session.
Talk therapy at least gives you another support-where anything that is on your mind can be talked about. Lyme can be a very isolating illness, especially with all that goes on in our heads.
A therapist should be able to meet you at the level of your needs-and if you need to write things down for now-then so be it.
As I said- you did a good job of expressing yourself on this thread-use writing as a tool for communicating with a therapist-that's what I do.
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Sometimes those with POTS or NMH CANNOT tolerate meds. *SOME* can, but I was one of those who couldnt tolerate any kind of treatment , heck, including WATER when I was at my worse because it made me THAT much sicker.
I used low dose meds to get through the worse of the orthostatic hypotension treatment and was able to tolerate injections ONLY on top of that, but it worked.
Let me know if you want to talk about that?
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Have you considered the possibility of systemic Yeast in your system?
Sudden allergy type symptoms to meds and or foods and smells are often associated with yeast.
After 7 1/2 yrs of treatment I myself fell into this path, as many do some quicker then others.
Posts: 374 | From NJ | Registered: Aug 2006
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posted
SunRa I'm SO glad you have your unconditional loving, all understanding and patient pooches...you can't beat that medicine!!! And I'm glad that they bring some laughter and joy into your difficult days!
Posts: 45 | From NJ | Registered: Sep 2006
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posted
oops...thought that was just a smiley face...
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Michelle M
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Member # 7200
posted
Hello, Dear Sunra.
Good to hear from you, post- spinal tap.. After all that misery, did they find out anything useful, other than high opening pressure (typical lyme thing)?
Your symptoms are so much like mine; I have neuroborreliosis with mercifully very little joint or muscle involvement. I find myself avoiding people and even avoiding talking on the phone as it requires such an intense mustering of concentration to get through. Sometimes even the sound of my own voice will seem odd.
People begin to perceive you as reclusive or aloof when really you just need to retreat and sort things out and process them. Our brains cannot react and respond fast enough to keep up. If more than one person is talking - forget it. If someone is talking and the television is going - DOUBLE forget it. Thoughts -even important ones - vanish before they can even be set to paper.
At times while driving I have to think hard repeatedly to recall even where I am headed. And that is assuming I can figure out how to get there.
On the plus side, a year ago I could not even remember, even with prompting, events of the past week. On bad days I could not follow a phone conversation at all.
So like the ever-wise Cave, I am going to have to say 'Hang in.'
I firmly believe that neurolyme people have impaired perfusion in their brains which is largely responsible for the problems you experience, assuming infections such as lyme or co-infections have been dealt with. I feel this is so because my cognitive abilities nosedive so horrifically in parallel with how much my head hurts. However, when I take a Relpax (a powerful but pricey Vasodilator), I can actually feel blood returning to my brain and can immediately think, reason, and speak in sentences again and be nearly normal.
Keep trying and don't give up. You WILL find your way back!
Michelle
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SunRa
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posted
thanks for all the replies. while i do actually have much difficulty tolerating many treatments, I think my initial question got a little lost, or maybe my choice of words was confusing.
don't get me wrong, i am sooo grateful for all your caring suggestions!!! but I am really just needing ideas on how to cope emotionally.
I am doing the best I can at tackling the lyme and co-infections with the treatments my body can tolerate, but I'm emotionally not doing so well after all i've been through - illness, distant friends, family issues, losing my previous social life and independance, and giving up everything i had been doing and working towards before i got sick. I know many of you can relate.
I guess in a way I've supressed some of the resentment, fears, and anger for so long, thinking I was gonna be cured shortly and all would go back to normal. But I'm coming up on my 5 yr mark and I'm still not better so it's been hitting me really hard and I need to find a way to deal with this.
I feel like I really need some form of psychotherapy, but due to my neuro symptoms, the talking and listening would be more stressful than helpful.
Cobweb - Thank you for that suggestion!!! That is exactly what I have to do for ALL my dr appts or else I will just sit there in silence and waste a lot of money just like you said. I don't know why I didn't think of trying that with a therapist! I guess I just always associated therapy with talking a lot and needing to listen. But maybe I can find someone open-minded enough to creatively work around my neuro barriers. thanks so much for that suggestion!
arg - thanks I will email you soon so we can talk more.
Michelle - wow, we must have been bitten by the same tick!! Although I do have some joint/muscle involvement, they are now much more mild and bearable for me than the neuro/head sx. And many of your descriptions like your own voice sounding weird, the talking/TV issues, etc are so terrifying and daily problems for me too.
and thanks again with all your help with the LP situation. I'm still dealing with some back pain and that dr is now avoiding me!! I have tried relentlessly to get copies of my results, but I have yet to receive them. However, the nurse says everything was "basically" normal. I'm anxious to get the report myself.
Thanks again everyone. Sorry if I sounded a little cranky. It's been a lonnnng day. I know you understand.
love & wellness, SunRa
Posts: 1563 | From MA | Registered: Jan 2003
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We are "kindred spirits". Some days are a lot tougher than others, and I don't mean physically. Some days I find myself wishing that I could just lapse into a coma and not wake up until there is a fast, easy, complete cure.
Like you, my 20's have been shot. My kids don't remember what it's like to have a mom that feels like going out and doing fun stuff with them. Or cooking something beside macaroni for dinner. My husband... well, let's just say that even with such a great guy, it has been incredibly straining on our relationship.
I don't have any answers for you... sorry... just wanted to say that I completely understand. I feel a lot of anger because my life has basically been taken from me and I can no longer do any of the things that I once loved, the things that made me part of who I am. I am, unwillingly, a different person now.
I am contemplating buying a paintball gun to let off some steam. Just for some tick-drawn targets in the backyard, of course... Posts: 220 | From central TX | Registered: Jun 2005
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Cobweb
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Just a PS about my therapy,too. She knows me well enough that when I come in she shuts the venitian (SP) blinds, and if for some reason the lamp is on next to my chair I turn it off-so there is just a low light next to her chair.
She also has this perpetual motion toy that is occassionally running when I come in and it drives me bezerko- I immediatlely stop the damm thing, and fantasize about smashing it against the wall someday.
I can hear her clock ticking and a couple of times I have told her what she had for lunch (chicken sandwich) or to drink(blueberry tea) because I could smell it an hour later.
One day I just about died because I think the client ahead of me had gas- I was too polite to say anything-but boy was it stinky. I knew it was the client ahead of me because I heard her ask where the bathroom was when she left.
Anyway, just some more of my experience. Carol B
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Andie333
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SunRa,
I was trying to explain this to someone Saturday night -- how very difficult it is to deal with a disease that's multi-systemic and affects you physiologically, psychologically and neurologically.
I had a lot of sensory sensitivity so wasn't even able to listen to music much...nor did I have the inclination to make music as I'd always done in the past.
And like you, sunRa, conversations were so dam*ed hard for me. I couldn't follow what was being said and would forget my own thoughts mid-sentence.
I couldn't exercise away my bad feelings, either. When I would try to push myself physically, this disease would push back, and it was ugly.
Several things have helped me, I think: I faithfully use an essential oil from Young Living oils called Peace and Calming. It somehow manages to take the edge off really raggedy feelings and helps me calm down a little.
Also, as Carol suggested, I found that writing was a great relief. I tend to write too slowly longhand so I started a private online journal (www.my-diary.org). The format is clean, the journal's password protected, and I've been able to really get a lot of my feelings down there.
I also took an anti-depressant and think that helped me, too. I've subsequently cut back on that dosage and don't think I'll be3 on it at all much longer.
Just some thoughts. I really hope you're able to find some relief; I could completely identify with what you were saying!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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SunRa; Tried replying yesterday but couldn't find my password ++ Anyway; just wanted to say that I understand what you are going through. I am also in my twenties and having neuro-lyme. It is awful. It seems that all my coping-mechanisms go down the drain when a depression hits me. I don't even bother trying no more to get on top of it. All I do to try and cope is to watch a dvd, go for a walk after dark, read a very easy book and hope it will go away eventually.
It is terrible to enter "the dark place", cause there seems to be nothing to do about it. But it will pass.
Guess I didn't answer anything for you, I don't cope very well either. Just wanted you to know you are not alone in here.
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SunRa
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Member # 3559
posted
sorry I disappeared for a bit. as if my usual symptoms weren't enough, a virus kept me in bed the past couple days and splitting migranes kept me away from my laptop.
Thank you to TexasChaos, siggy, and Andie for the helpful suggestions and support!! just hearing from you all is therapeutic in itself (although of course I'm sorry that youre going through the same thing). And I love using essential oils, so I'm anxious to try that blend.
And thank you Carol B for the laughs! I'm sure I'm alone in this one, but your post actually made me crave blueberry tea. Posts: 1563 | From MA | Registered: Jan 2003
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TheCrimeOfLyme
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I didnt think I would be able to do this when I was at my worst, but somehow I managed: I used alot of visualization therapy. MOST of the time it would be all messed up with things I wasnt trying to think, but it DID WORK. Let me know if you want taught.
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I'm SO glad you have your unconditional loving, all understanding and patient pooches...you can't beat that medicine!!!![[group hug]](graemlins/grouphug.gif)
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I will email you soon so we can talk more. ![[Wink]](wink.gif)
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I knew it was the client ahead of me because I heard her ask where the bathroom was when she left.![[loco]](graemlins/loco.gif)
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