Please share what you do to overcome the effects of this horrid disease. I don't know what to do to combat this brain-dead feeling. I feel like my body weighs 500 lbs. and I just don't have the energy or desire to do anything. I don't care how I look anymore, I don't even care if I take a bath or brush my teeth( what I have left), it's just too much trouble. My house is just filthy and I don't want to clean it, so I ignore it. I have tons of dirty clothes to wash but that's too much trouble too. I used to be a very good housekeeper and a good cook. I don't ever want to go anywhere because I look like such a freak. I don't have any hair, so I have to wear a wig. The wig always starts driving me crazy after a short time with the crawling sensation, but it's for real!! I have found the wig hairs imbedded under my skin!!
Is there something I can do to get myself out of this bottomless pit of doom? I keep wondering why I am still here, I don't feel like I serve any purpose, I can't even take care of my family!
Luv U Guys
susiq
Hi susiq, I had to check your profile to see when you first joined - 2006 like myself - and dang it you live in Texas, you poor woman.
I am very concerned to hear you say you can not take care of your family - your family should be taking care of you. Sorry if I am over stepping the line. I do not know your family and am not "judging" by any stretch. If your family love you (they live under the same roof) they must know this is real, are they also suffering this disease.
Reading your post was like you had stepped inside my mind and wrote a portion of my life, my tortuous nightmare that came like a BOLT out of the blue. I was like you, YES normal, clean home, had it together mentally, took so much pride in my appearance - I was a very beautiful looking woman - "drop dead glamour" some men had said, others were more focused on my butt (and I'd be a billionaire now if I'd taken $1 for everyone of those butt comments
)
Morgellons took ALL that away from me. I watched myself deteriorate. My physical body was changing and my mind was also changing - though in an entirely different direction!).
I am lucky to be in Melbourne (the poop hole it is) compared to yourself, being constantly contaminated (that is my opinion).
Straight up now about your question about coping - There is NO magic wand, plain and simple and a bloody hard truth to swallow. I too had worn a wig and I had all the same issues, the fibers from a pink wool hat, so that got put in the trash. The wig hair I would have coming from out of my armpits! I shaved my head around the end of 2004. My late defacto Tony told me to shave my head when he saw that my hair was growing into my right cheek. Hair was flying out at a rate of nots and Tony couldn't cope he dropped a big fat F BOMB! Shave your HEAD! He almost died when he came home from work the next day to see Ms Freak sat on the couch.
I cut the hair first, then finished off with an electric razor. The top of my head was like a thick rug - took ages to shave. My widows peak was half way down my forehead and my head was getting BIGGER by the day.
I was concerned about getting a cold head at night, as we lose most of our body heat through our head. I was wearing the pink wool hat, until my scalp was eating it. So then I slept bald, but the strangest thing was I would wake with a soaking wet pillow and my head on FIRE.
I am so lucky compared to you, I am through that horror.
Your brain and your soul are your biggest tools here and now. You are not in a position mentally or physical to follow any protocol; being internally and externally. You do not have the energy physically or mentally PERIOD! Dig DEEP inside yourself. YOU have to start to LOVE you, this is so very hard. You need to be alone for a lot of this, and you also need to do a LOT of crying. You are grieving for yourself. Misery loves misery and that sure isn't your fault. This is not a day at a time thing, often 10 minutes at a time. Don't go looking in the mirror. Remember this - EVERYTHING has a beginning and an END.
I would give anything to have the old me, but that is being unrealistic. WE here are all realists...?...YES we are.
Your journey from here on is about YOU inside. Please (I know it sucks so bad) cut yourself off from your physical body. Start from within, a wounded human spirit is (from my experience) the hardest "organ" (for want of a better word) to heal. You can not take a pill for the soul. We have been given something very very special and it will help you get well. The mind and body need to be in time together and you are not, most of are not either, though still working on it!
I wish with all my heart I could hug you and tell you it's all going to be ok - I can not - non of us are the same, though we do have the same disease and those FREAKIN fibers.....I'm still suffering and geeze Lordy lordy it's like "oh no...not again..I can not do maintainence I have to care for a home, a garden, a child, a cat, and myself and TRY to appear as though I'm normal".....phew out of breath with it all. The disease changes, you would know so well. Though I've learnt for a lot of the women the scalp issues persist and that is just so unfair.
When I was a bald, fat, house bound - I lost myself in my mind. Fantasy, make believe, I became like a child. I would watch YouTubes HAHAHAHAHA! yeah hehehe I can hear you all!!
Each to there own, however it is true that music stimulates every lobe of the brain. Anything that goes, try all sorts - yeah I know you don't feel like doing anything. Not sure if you like to smoke but if you can get some organic cannabis - take the edge of your nightmare DO IT!!
Here's an idea of the ways I would start my nightmare days - I'd watch something like this video and feel great for maybe half an hour - better than not at all.
www.youtube.com/watch?v=Edwsf-8F3sII not so long ago recently progressed to this video, it was literally talking of my life - though flipped over a little lol
www.youtube.com/watch?v=yoH367Dg4YYIF the videos you find make you cry ALL the better, you need gut wrenching tears to flow, sorry I know it hurts, but you have to get it out.
Any funny DVD's - yeah I know the right mood - but those days will happen. If you don't like something ie movie stop watching. You will know straight away if something will work for you. Listen to your body, how does it react to the frequency? to the energy in the room? do other people make you feel anxious? if so - get away from them. Keep the best basic hygiene you can. You must make that one commitment to yourself - shower & wash the vitals - front and back! lol and clean your teeth. Try to have fresh pj's - clean hair and clean bed linen as often as possible. REST rest rest when you need to, try to eat a balanced diet, and don't even consider guilt, worry, self loathing OK?!
Only recently I put this video on my Facebook Page - always been a KISS fan - I was listening to this song on my Walkman - it really touched a nerve and I needed it and it helped me. I was pumping up my tyres, we have too.
YOU are worthy, you are human, you are suffering so friggin bad along with millions of others. Right here and now I am reaching out to you with BIG HUG.
I don't blow wind up bums - I read your posts earlier and I planned to reply to your post after my evening meal. I feel like utter poop with a head cold, LOTS of stress been happening. I was almost falling asleep on the couch after tea. My body is sore after a fall at the cinema last night (I won't even bother going there!). Point being I wanted to be here for you however small.
So I digressed again....this is the video I watched to wake me up before writing this post.
www.youtube.com/watch?v=yfj07o8o9vULooks like a bombs hit the kitchen, but not to worry - school holidays have started yippee!!! I'm so looking forward to bed, just need the clean linen on, oh I must get that washing in and the dishes.....I'll see how my energy levels are. My son is turning 7 years on Sunday so I'm really under the pump tomorrow - I have to bake one cake haha! then rest so I can enjoy William's day with him and family.
Well I think I've waffled enough.
I/We care very much about you susiq TRUE. One more thing, talk to Morgellons people over the phone whenever you can. You need to hear voices of people who know your deep pain.
Take care strong lady - big HUG x