Help please

[dominorose]

Sorry to start a new thread but I really needed to create a post about coping tactics, support etc. I have an anxiety disorder and really am a mess these days, I just don't know how to cope anymore. I see a therapist, and talk to friends and family about it but they just can't do anything to reassure me. Their inability to help and reading pity/worry in their eyes is the worst thing ever.

I just need hope because I tend to focus on the bad stories I've read here. I have MGD/rosacea. I came back to work yesterday and am so lucky bc my boss is really understanding, gave me the time and breaks I need, etc. But yesterday he basically told me I had to accept my new condition and grieve my past life. I am only 25, so acceptance is really difficult. To accept the idea of being an handicapped person is just too hard for me. I want hope, reassurance, success stories, I just want to be sure there is an end to this nightmare...

[littlemermaid]

Hi Dominorose, Here's a gorgeous video made by children with undiagnosed conditions which may help http://www.youtube.com/watch?v=XVQW1JY8JJ8.

Have you found groups in Paris? We have attended patient days and public lectures at hospitals - they have been very hopeful because the focus has been medical science and future advances. Something very good to get involved in. Also in giving support to other sufferers and sharing the burden, we receive more than we give, especially in self-esteem - that's why group therapy works so well for some people.

Some people like 'mindfulness' techniques especially if they are negative thinking. Remembering to be thankful is helpful for me - for this forum, opportunity to learn from the internet, countryside and parks where we live, museums, impressive buildings, the children's energetic teachers, clever and hardworking doctors - even things like a cup of good coffee, fresh rain, beautiful fabric, wildlife in the garden. My daughter with the eye troubles loves comedy and films - that's a big antidote for her. What is on your list, Dominorose?

Also we realised many other young people around were managing quite serious hidden conditions (school friends - diabetes, scoliosis, asthma, anaphylactic allergy, heart pacemaker, even heart transplant). Knowing more about that made our difficulties easier to face. Eg career-wise, we have a kind young orthopaedic doctor round here who is deaf and lipreads consultations. There is a blind teenager playing flute in our orchestra and singing in senior choir. In the children's eye clinic we see babies and young children without an eye or with eye cancer and we count our blessings even though this eye condition is difficult to self-manage sometimes.

It doesn't matter where people come from as long as you find a bit of support. Be kind to yourself, and have comfort strategies ready for when you are feeling down. Do you have family in Paris?

111-Our-dry-eye-triumphs thread is good. It always cheers me up to read SAAG's adventures too, and she's had great improvement from a difficult situation (click on her name to Read Forum Posts).

[Almondiyz]

Sorry to start a new thread but I really needed to create a post about coping tactics, support etc. I have an anxiety disorder and really am a mess these days, I just don't know how to cope anymore. I see a therapist, and talk to friends and family about it but they just can't do anything to reassure me. Their inability to help and reading pity/worry in their eyes is the worst thing ever.

I just need hope because I tend to focus on the bad stories I've read here. I have MGD/rosacea. I came back to work yesterday and am so lucky bc my boss is really understanding, gave me the time and breaks I need, etc. But yesterday he basically told me I had to accept my new condition and grieve my past life. I am only 25, so acceptance is really difficult. To accept the idea of being an handicapped person is just too hard for me. I want hope, reassurance, success stories, I just want to be sure there is an end to this nightmare...

Hi Dominorose,
I have MGD/Ocular Rosacea & Subtype1 Facial Rosacea.
For me personally, it's a nightmare roller coaster ride I haven't been able to get off.

I wish I had the magic answer to your question because I'd like to know, too.
I'm replying because I can relate to your emotional AND physical pain.
Grief...no one has the right to tell you how to grieve. No matter what type of grief.

I've watched many who tell people to "move on...isn't it time to get on with your life?...it's in the past, just get over it..." and so many other insensitive *advice.* I do have *advice* about grief, try not to share/talk/explain how you are feeling to someone who dismisses your grief because that's the only way they'll answer & it just leaves you (me) feeling WORSE.

I understand how it's easy to focus on negative stories. It's very difficult for me to find hope in a dark place. MGD/Rosacea are chronic diseases. I do what I can to ease...whatever ease means at the moment...the pain/suffering. Also, flare-up prevention methods as well as what to do during a flare-up.

I don't know your symptoms of MGD, nor do I know if you meant Ocular or Facial Rosacea.

There are a lot of great supportive people on this forum.

[peter56]

Hello Dominorose,
I do understand that you are Feeling lost and alone.
There are now millions of people suffering from MGD.
MGD is difficult to treat successfully, but if the patients and the docs doing the optimal therapies,
it is possible achieving good improvements.

1. Starting with eye lid hygiene - or better lid margin cleaning.
Please look for - Hygiene papebrale - at
http://www.futurophta.fr/ - you will find a PDF on that.

Thea Pharma does offer a range of products to treat MGD and Blephagel is also good.

2. You do need a prescription for Azyter drops, or try to obtain Azasite drops from the USA-Canada.
Furthermore you do Need a prescription for an anti inflammatory steroid ointment, respect. Elidel or Protopic creames.

3. You do need some BUT tests to see how the qualities of your tear films are.

4. Later on an experienced ophthalm has to check your MGs. I don't think that in this early
stage a MG probing - sondage - will be necessary. But certaintly careful repeated MG expressions.

5. You may have to apply alternating gel and eye drops every 15 min!
Vidisic-gel, Hylo-Gel. Visc Ophthal-sine, Hyabak or Thealoz-Duo. Thealoz-Duo combines Thealoz and Hyabak.

For the nights a good ointment.

6. If you do suffer pain and mechanical irritations, then you may wear Bandage lenses for some weeks or even
some months.
Corneal protective contact lenses are the key to get out of the terrible vicious circle of irritations and inflammations!!

Small badage CL are available from B&L - PureVision.
Bandage lenses 15-18mm from Procornea-NL, or prescription-xr Hydro-lens from Cantor-Nissel-UK.
Even with the lenses in your eyes, you have to apply drops-gel frequently!

[dominorose]

Thanx for your answers. Littlemermaid, I would love to have a mother like you. Do you plan to come to france one day? I would love to meet you.

Yes I have my family but it's complicated. My parents are divorced, I dont want to stay alone in my appt and went to my father's place for 2 weeks now I'm at my mother's but I always feel like a burden everywhere I go. My mother think its in my head and just to attract attention, and my father...he's distant and tells me to stop coming on the internet to read things about dry eyes bc it makes me feel bad and anxious.