And this too?

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1

I really am not a negative person. I have tried all my life to adopt a Pollyanna approach to life. It has got me through some horrendous times. But now I am beginning to wear down, completely.

As we all know it is very difficult to have a chronic illness. Especially this TN story. The constant pain and all that goes with it is hard enough but when you come down with something else - even a cold - that someone else would brush off - it becomes a major issue. More meds and more meds.

I am completely strung out. I have a mouthful of ulcers and they are hurting like heck. Can't eat, can barely drink and am living on Yogisip and Bulgarian yoghurt. And cold soup.

Tried all the ointment stuff. DID not want antibiotics but when my husband met me at the breakfast table yy he said: "Let me see."

He phoned out GP who prescribed --- ANTIBIOTICS---. I had such an infection it was going down my throat.

THIS FOR ME IS A MAJOR CRISIS.

It shouldn't be, but it is.

Last night the throat pain triggered a TN attack. So, out came the injection paraphernalia which my husband administers. I was so tense, and nauseous and fainty that when he plunged the needle in I shied away from him he missed and had to start over. I yelled out. I try not to yell. It is not fair to him. He tries so hard.

He whispered:" I don't what else to do any more."

His head was in his hands.

Now I am in a slightly manic phase. It is now PC to say you are bi-polar. But really, it is manic and it is depression. Bi-polar does notr begin to describe it. And right now I am manic. Not too much. The last time I went over e top was at my daughter's bday party. (Why does it have to be in front of my children? Am trying so hard to hid all of this away from them. Don't want to lose them. The have also had enough. But they are my life.)

The psych increased the mood stabiliser and until today it seems to have been okay.

Oh I can't analyse this anymore but I feel as if I am going insane.

Oh,the pain has started and the mania is increasing. Must go. Before I fall apart in front of all of you.

Me

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If I was there, I would give you a big hug (not touching your face). I'm so sorry that you're having such a rough time. You can fall apart in front of me anytime. I flipped out completely last Sat morning, in front of my husband, for the first time (i'm recently diagnosed) he was taking me to the emergency room. I felt "bat shit crazy". I don't wish that on anyone.

I'm wishing you a big wave of relief

Beth

3

(((( dsm )))),
Just be gentle with yourself, the best thing is you are aware, you’re not sticking your head in the sand…this LwTN can be soooo tough. No harm in asking about an increase in your mood stabilizer…if it helps.
Forget one day at a time, try one moment at a time…don’t be so hard on yourself ( I know easier said than done, I struggle with this too).
I hope your mouth/throat starts to heal soon, don’t you feel sometimes like " are you kidding me? One more thing?"
I had a migraine with vomiting 2 days ago, and that’s exactly what I said out loud, to no one…like its not enough that I’ve been in constant TN pain to some level for months, and now a migraine?? Ugh…
I understand…In so many ways . Please don’t worry about venting here, here is where you should feel safe to do so…you can always message me if you prefer.
Know I’m thinking of you and sending you healing thoughts…
(( hugs )) Mimi

4

Just wanted to ask you a quick question. Are the ulcers in your mouth only on one side? I had shingles in my mouth the first time I had them, and no one knew what they were. I was so sick, felt like I had a virus, and the pain in my mouth was unbearable. The blisters were confined to one side, and stopped right at the midline.

PS How did you get a doc to prescribe anything over the phone??

5

Just keep writing.... is so good to hear another's experience of this manic / depressive lifestyle, diagnosed or not. You go out, in my case to a book launch, and up you get, pushing thru the pain - like running, when you really want to sit. But off you go, on tippy toes, putting on this huge performance for all and sundry. Keep yourself "up there " like some b... maniac... the family think " Oh Jeez, there he goes again! Will he ever shut up?!" Then you go home, collapse out of mental exhaustion, and just want to die. And I'm at that stage with all this that I know longer care what the world thinks. It's not about being balanced or whole with in one's self, it is nothing less than alienation and disengagement from society. And I know eventually I will not find even this disturbing. So dsm you are in my thoughts and thank you for putting your experience up there. It's even more difficult for you having an obviously caring partner who is an emotional causalty of this malady. It must be just so awful for him, having done all and nothing more remaining he can do. And you, on top of your own suffering, have to witness his. Like every one else here I do so wish there was a solution that one could pass on to you, rather than just carry on about the suffering. However, I am your witness here. I see your pain, your pain is real.

6

My darling USES. This refers to what I learnt a long time ago. There are the THEMS and there are the USES. We are all the USES. Only the USES can understand this dreadful malady.

Sorry, I have not been ignoring you. You have all been in my thoughts and while lying on my bed in a dreadful state have been thinking about you all and how I could not even get to the computer to write to you and communicate with you.

My dear Craig. You are such a special person. I sense so much light around you. You are gentle and loving and caring. Thank you for your wonderful, beautiful comments.

I was only diagnosed as manic/depressive in March when I went into a psych clinic for very deep depression. I don't think it was much of a surprise to those who know me intimately but I found it hard to get a handle on it. But it did explain a lot. Mood swings, up, down etc. Quite frankly I do no longer care what the world thinks but I keep getting reminded that at some level I have to care when it comes to my family and those associated with us. My husband and son are high profile figures in a certain industry and it just would not do for associates, if I were to have a manic episode in front of them. Besides my son, particularly, would never recover from the humiliation. Craig, I am almost always in a state or collapse and so often don't want to "be" any more. That is hard to explain. It does not mean I want to die but just don't want to be here in this state of mind. I do not live I only exist. Disengagement from society is invevitable because it is a form of self-preservation. I can simply no longer connect with people I knew or associated with. And quite frankly most of my "friends' ditched me 5 years ago.l only have 3 very close friends who can empathise with me and with whom I can visit and if I have a manic episode in their presence, we just laugh it off together. But such people are few and far between. Real diamonds.

It is sometimes impossible for my husband but he is a real keeper - as the young 'uns say today.
But he is a very deeply spiritual man and I think that is what has kept him going and continues to sustain him.

But he often says to me: "I just cannot stand to see you like this."

But it is what it is. And yes, my dear Craig. The pain is real and you, too, are a diamond.

Hi Candy. The ulcers were predominantly on the left side of my face (TN) side. But then they spread throughout and everywhere inside my mouth and to an extent down my throat.

Hey, I shouldn't actually let that cat out of the bag, should I? But we have known our GP for 29 years and he is in fact a friend of my husband's. He has also had communication with the psychiatrist and the pain specialist at the psych clinic where they administered meds that have really helped to a greater extent than any neuro did. I see him from time to time because he has to update some of my scripts. So when I had these mouth ulcers and my husband explained to him what they were he did give my husband the antibiotics for me. He trusts my husband's word and he understands that I simply cannot get out of the house (at times). Second time around, though, I had to go to his rooms. He was shocked when he saw the ulcers. Said he had not seen anything that severe in his entire medical career.

He said it was trench mouth - but just a fancy term for mouth ulcers that have got completely out of control. We normally only drink purified water but when my husband injured his back he couldn't fetch the canisters from the supplier so we drank tap water. I think that with my immune system being so down I got one fever blister and then with the contaminated water it just spread. The water in this city is said to be the cleanest in the world. However tests have proved otherwise so we take no chances and are now back to drinking purified water - a lesson learned the hard way. South Africa, is after all, a third world country and things are not what they should be. Standards are falling and we sometimes pay a heavy price.

Thanks for your communication.

And Mimi - what an absolute treasure you are. Thanks for your encouragement.

And Beth - yep you've been there. You are one of US. Thanks, my honey. Your comments and understanding mean the world to me.

dsm