really long post

[whrk]

hi everyone...i know i posted here before a little while ago, but i feel like i have to write another message because frankly, i don't have a lot of places left to turn to talk about this and today my strength level feels kind of low and i needed to write this. im not sure if it's really to ask questions or to get this off my chest because i'll go crazy if i don't, but i need to write it. on the plus side though...i finally managed to convince my family that i have this thing, as well as one very trusted friend, and my fiance, who i was terrified to tell initially because he though i was crazy the first time, but he finally realizes that im not a hypochondriac and that i don't have delusional parisitosis. my wonderful parents, after seeing what i was talking about first hand, even bought me detox teas, aveeno oatmeal bath, airborne to put in my water to get extra vitamins and more hydration. the strength and love i'm finding in them, even though i know it's extremely hard for them because they can't really do anything besides buy me tea, has been absolutely more than i could ever ask for and i am extremely grateful for it.

i am getting more and more frustrated because things seem to be alright for a couple of days and then the itching, this strange stuff that keeps coming out of my nose, the crawling feeling in every orifice of my body, and the little sores that never seem to heal come back with a vegeance. im drowning myself in water, detox teas (yogi tea, the detox ones, seemed to help a little, but that might just be because i wanted them to and i'm not sure if they really did or not), eating more vitamins than I ever imagined I would consume, getting plenty of rest, avoiding sugar (i didn't think eating yogurt would be a problem, but apparantly, even the sugar in that seems to make my skin crawl after i eat it), doing everything possible to distract myself from thinking about how i feel. i absolutely refuse to let this thing rule my life though....i am still going to get married to my wonderful fiance. Last week, I moved 3,500 miles to the stay in the UK to be with the most wonderful man I have ever met. I am on the verge of having one of the most important things in my life, and along with finally getting to stay in the UK permanately instead of making trips back and forth between the US and the UK, and having Morgellon's is certainly not going to keep me from having a family or a happy life...even though feeling like **** and having to pee every ten minutes because I pee more than a racehorse from trying to flush myself out with endless amounts of water, coffee, and tea feels a bit like this thing is trying to put a damper on my sense of humor and desire to be happy. I refuse to stay inside and let the tiredness and muscle pains take over my body. there has to be a way to beat this and im convinced that someone will find it.

on a side note though...does anyone have any tips though on how to talk to your loved ones, specifically your partner, about this though? my family is extremely supportive, so is the friend that i told, but my fiance is having a harder time with it. he is terrified of losing me to this thing and doesn't want to think/talk to me about it and i don't blame him in a way. i tell him it's all going to be ok but i know it's hard for him. i can't explain to him what it feels like and he doesn't understand why i can't just go to the doctors and have someone fix it. he's trying to understand but it's hard to explain to him that no one will believe me. i know the delusional paristosis label sucks, too and i deeply sympathize with those that have received that label. i won't go into details, ill just say that a really long time ago, thanks to medicine, delusional parisitosis actually did happen to me, and i was treated like i was crazy. morgellon's is pretty much like that experience, except its real this time. no drugs of any kind involved this time, so i have the pleasure of already having the label and then getting the full experience years later.


im extremely sorry for the long and rambling post (and congratulations if you've gotten this far...) but to whoever is reading this (and any who respond, thank you in advance). also...to anyone else who is reading this and is scared....i do have moments of being scared and sad, but i read somewhere else on here, i believe it was, that said you can't let this thing dominate your life and it's been a pillar for me throughout this and i really do admire the people who have had this much longer than me and are dealing with it so well. your strength, words, and suggestions have been an absolute blessing to me, so thank you. if anything..this is teaching me to not take things in my life for granted so much, to smile more, to give more hugs and love to those around me, and wouldn't you know it, that kick in the pants to eat as cleanly as possible and to exercise more. i just didn't expect getting a mystery disease that the CDC refuses to even class as a real disease at the moment to be the way life was going to try to get me to go about doing everything i was putting off doing because i was too busy, too stressed out, or too lazy to do for some reason or another. i know it sounds cliche or whatever you want to call it, but getting upset, worrying, getting stressed out, and letting something take over your life is unproductive, doesn't achieve anything, and robs you of your life. so please, don't confine yourself, if you have, to your home, and keep carrying on, and take something good from something that is trying to claim a place in your body when it doesn't belong to be there. i mean, it's really all i've got to offer in terms of advice, and trying to find something good in something bad. and to those people who are considering contemplating hurting themselves because of this disease, please don't. i know it's frustrating to have someone tell you nothing is wrong when it isn't, be it a doctor or anyone else and to feel like the people you're supposed to depend on to help you have turned their backs on you. this thing isn't normal, you're not crazy, your life isn't over, and please try to find strength in darkness. i don't know if any of you are religious or not, but God and life work in mysterious ways, everything happens for a reason and sometimes it's freaking terrible, but keep fighting. please. don't give up. this isn't optimistic crap and i don't mean for it to be. i'm just trying to help and if i've offended anyone at all, i'm apologize. i'd just like to add that i know people become more religious during situations and crises like this and i had a semi-religious belief before this, but praying has helped me through this so far. i don't really care what your views on religion are and i'm not trying to start a religious debate, but talking to someone, be it your family, friends, God, your partner, or even your dog about trying to derive strength from something horrible and attempting to overcome it will help. talk to yourself if you have to. face it. accept where you are right now and work on changing it. don't pretend like you'll wake up tomorrow and this horrible dream will be gone, because right now, it won't. tell this thing it has no business being in your body and unwanted and uninvited guests are never appreciated. especially in this case. i know that sounds crazy but that was my way of accepting this thing, trying to deal with it or manage it somehow, and then pick up and keep living my life...and i don't know any of you, but i still care about every last one of you and want you all to have find some kind of strength and to keep fighting and to not let this thing consume your lives. none of us wanted, or deserved this, but it's here now, and you have to either keep moving on or you give up.


anyway...i think that's really all i have to share...i just hope that maybe someone will find some strength and hope in this and i know i haven't had morgellon's for years and years so maybe i don't know what it's like at its full force, but i'm trying to understand and do my best to stay optimistic and happy and to not let this thing disable me as much as it wants to. take care and please try to stay happy.

ps, if anyone knows of a good doctor that actually is listening to morgellon's patients in the uk, please me know. i'd appreciate it.

[Kritters]

Other than that, Mrs. Lincoln....how did you like the play?

Hello, WHRK....I got through your post. Half way through, I got a fresh oj and vodka, took a stretch and continued

Too bad there's not a smiley for sarcastic.

You sound like a very nice person and I hope you feel better after posting here. We are your Morgie family, so you should feel at home.

What did you tell your family and fiance so far? That you have Morgellons?

Everyone has an opinion, and here's mine: I don't know what to tell you to do. On the one hand, if you already said Morgellons...it's good for people with Morgellons to have recognition, but sometimes that's something for a personal cause. I find personally that in order to just deal with the people around me who will not understand anyway to say I have Lyme disease. That at least is something they have heard of, is fairly common, and no one is expected to know all the details, so they don't think much of anything else except that you have some reason to justify your situation. I figure we will probably make more progress for the Morg community by researching between ourselves and find answers behind the lines than to pee in the wind and beat our heads against the wall, exhausting ourselves 'til the mad cows come home and lose all credibility and respect from people who (and it's not their fault) simply cannot understand unless they live it.

You have a great attitude and I'm glad your spirituality has deepened and helps.

xoxo
Kritts

[whrk]

Lol, thank you kritters, i know it was a long post, i just needed to get it out. Thank you for your response though...it really does help (and was very kind, thank you ) and it was really helpful. I actually should have gotten a drink as well :P Maybe not a vodka and orange juice...more like a six pack, haha.

To answer your question though... I haven't told anyone except my family, a good friend of mine, and my fiance. My cousin told me, when I told him it might come from something that had to do with people messing around with chemicals in food or that it might have something to do with Lyme disease told me the first one didn't surprise him at all because "there's no place for chemicals in a diet or anything else". I told my family everything that was going on, and they reacted with disbelief (and rightfully so) but I didn't tell my fiance as much because he just doesn't really understand. I told him that I had fibers and things coming out of my skin, that my muscles hurt, that it messed with my vision and concentration, and that I had a creepy crawly sensation under my skin and in my nose, ears, and in my throat. He doesn't want to talk about it because it upsets him too much and it frustrates him that he can't help me. He wants me to go the doctors....I think a part of him won't really believe me completely until I do, but I could be wrong. I'm considering e-mailing the local doctors office and asking them if they even recognize Morgellon's first. It's sort of a rotating whoever is on call office though so I don't even know what to tell them..."I've got stuff crawling under my skin and oh, I had surgery recently on my bellybutton, and there's white cottony stuff popping out of there". I definitely understand the pissing in the wind feeling on that one. They'll put me away before I even get a chance to schedule an appointment.

And yes, I'm glad my spirituality has deepened as well. Maybe my family telling me a belief in God, drinking lots of water, going to bed early, and being kind means they were right after all...hmmm (I don't think it's wrong to admit they were actually right )

If you don't mind me asking, how did you decide who to tell? I suppose it's just on a basis of who will understand and who wont...

[whrk]

Btw, just as a random note, I'm really not the type of person to go to tannning beds, but someone mentioned somewhere, I can't remember where, that tanning in tanning beds helped relieve some of their symptoms. I got a bad sunburn on my arms and face and I really didn't put any stock into that statement before (but then again, after getting this somehow, I'm pretty sure anything is possible), but it seemed to help a bit. I'm not going to do that again, but I do suggest it if anyone likes tanning.

[Kritters]

I decided to only say I have Lyme disease along with co-infection complications because WE don't even know what this is, so I'm not going to stress myself out further by having to deal with people who couldn't possibly understand. This is not a normal situation and your family may be behind you, and your fiance loves you, but he is probably a tad worried as you can expect. Yes, I'd say you have to know the person you tell very well and whether or not it will freak them out. That's about all I can think of from my perspective! It surely isn't a cut and dried situation.

Kritts

[whrk]

Thanks again for the response Any suggestions or comments are helpful! I definitely agree with you though....I know there are a lot of people that couldn't possibly understand it. When I sent my parents an email about it to help them understand, I included clips from youtube that I thought might help, including stuff from news programs and notes about Dr. Phil mentioning it and those articles about Joni Michell and Jay Koch (sp??) the pitcher and his family I don't know if it helped or not, but I don't think it hurt. I don't know if that would be the best solution for anyone else, but I think for facts and figures kinds of people, including stuff from reputable programes and stuff from the CDC helped (or it helped my dad anyway).

[Kritters]

Well, that was only from my perspective. If you have strong people behind you who listen and are open-minded, that's a wonderful thing. It sounds like you do.

Best,
Kritts

[hilly]

whrk.... I also don't tell anyone except my family and one or two very close friends that I have morgellons... everyone else I say I have Lyme disease... altho' this is not well recognised it is kind of more 'respectable' ! and people don't run a mile from you thinking they are going to get it, or just think you're 'potty'.... I live in the UK and I do have a great GP who excepts that I have morgellons although he does'nt know what to do about it. He's just very good at going along with any suggestions or ideas I have.
I'm so glad you have a devoted and loving fiance, that's wonderful. My hubby is great also and very supportive and does his best to help....(brings me endless cups of green tea ) lol Best luck with it all.. so glad you are still going to get married.
Hilly x

[pat]

Well I don't tend to say Morgellons now and stick to lyme as mentioned above.
What to say to friends and family...well in my case a wooden mallet would be handy to bash them over the head so it sinks well in!! They tend to nod the heads and make soothing sounds like this would never affect them.I spent ages telling someone about lyme and got nowhere.She rang me his week to say that a woman had been on TV warning of Lyme and she was in a wheelchair,and how it was spreading in England etc etc. The really annoying thing is she believes it now because its been on 'telly'.
My advice would be to play it down and talk vaguely of arthritic pain etc. Have you had any tests at all?? If not think about getting some..not that the UK is a leader in that but Germany seems to do effective testing though don't know how you get it there.
Depending on where you are there is the Breakspear hospital in Oxford but you have to be seriously wealthy to get treatment there and think the Finchley clinic in London does stuff too.
Interesting to see if anyone close to you gets any symptoms....my friend was disbelieving about the whole thing till she started with some symptoms.

[tcmgpt13]

I have posted this page recently, but will post it again here as it is an online list of UK doctors who may be a bit more open to different treatments than more conventional doctors. No doubt someone in the UK will pm you privately about sympathetic doctors. I am sorry to hear you are ill whrk, but there are ways to improve your symptoms at home. I wish you the best in finding help. Good to hear your nearest and dearest are showing concern.

Doctor referral list