Tag Archives: Support

Of Mindful Manner

This site crossed my paths and I knew it was one to be shared, I already have purchased two shirts to help support this site, it’s real, its helpful and fits in with my page, I just love the energy these women Cassidy and Savannah have and I am sure you will love there site, check it out, tell your story and lets help get the word out about Invisible Illnesses and rare diseases. There are more out there than you know, knowledge is the key, awareness is the cure and support gives us the want to continue to fight. Check it out.
Our Story
Of Mindful Manner was born out of a need to better represent the individuals of the world who show no outward signs of their illness. Coping with an invisible illness can be frustrating and painful, but these issues are compounded by a lack of knowledge and understanding. Our reason for being is to help enlighten and encourage our friends, families, neighbors, and co-workers to address individuals with empathy and understanding. At Of Mindful Manner we know that what you see is not always what you get, and because of that, each garment is carefully curated to serve as an invitation for conversation. The more conversation that surrounds invisible illness, the less room there is for stigmas, ignorance and misunderstanding.

We want you to know that we see you and we recognize the battle you are facing. There is a whole community at Of Mindful Manner that supports you.

The Founders
Hello, Cassidy & Savannah here! We are so thrilled you have found your way to our shop. We are sisters who have had our lives tremendously impacted by invisible illness. One of us has Dysautonomia and Chronic Migraines. The other one of us has grown up with a front row seat to living with these conditions, and has shared in the burdens they can cause. That’s the thing about invisible illnesses though.. you can’t tell by looking at us, which one of us fits which description.
We know our story is not unique. Nearly half of the U.S. population lives with some sort of chronic illness and 96% of chronic conditions are invisible. So while you may not suffer from an invisible illness yourself, chances are you know one or several family members/friends or co-workers that do. We pray the future holds cures for everyone, but in the meantime we will dedicate our lives to spreading awareness in hopes of making this world a more mindful one.
Search Returns Shipping Contact Us Blog. WWW.ofmindfulmanner, link located on the left hand side of page, bring ya right to it. Kelly

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Self Management for those with chronic illness.

Self management

Self management allows people with long term conditions to remain in control of their lives by working along side medical professionals to manage their condition. This involves supporting and encouraging people living with long term progressive disorders (e.g. Ménière’s) to access information and to develop skills to help them live with their condition, cope day-to-day and make informed decisions about when and how to draw on different types of support. It is important to:

  • get to know your condition and how it affects you;
  • accept that you’ve got this condition and that it may limit what you can do;
  • understand how your condition makes you feel so you can identify the support you need, plan for the future and use the support available to get on with your life;
  • recognise that you can get on with life but you may have to make some alterations;
  • talk to people who are in a similar situation to you, for mutual support and to share experiences—it can be a great comfort knowing that you are not the only one living with this condition.

By learning to cope with the dizziness you can continue to enjoy a full and active life. Some people find themselves restricting all sorts of work and social contacts in case they have a dizzy spell in public, or avoiding some physical activities in case they provoke dizziness. Try not to let the dizziness change your lifestyle too much. You may want to arrange for someone to be available for support if you have a severe attack; you may need to rest or keep to quiet indoor activities on your bad days. You might also want to take a stick or shopping trolley with you when you go out so that you can lean on them if you feel a bit giddy. But try not to cut down on activities you really enjoy. Dizziness can be frightening, unpleasant or even embarrassing, it is not actually dangerous. Once family, friends, and colleagues know about your problems and how to help, they are likely to be very understanding, and may be able to give you the extra help you need to maintain your lifestyle. So do not allow the vertigo to get in your way. With help you can find practical solutions to most of the problems caused by dizziness, and its effects on your life can be kept to a minimum.

Anxiety and stress

Vestibular disorders can leave people feeling isolated and helpless, especially when newly diagnosed or enduring a particularly nasty bout of vertigo. A large majority of sufferers experience feelings of anxiety just at the thought of having vertigo symptoms in public or at work. These high levels of anxiety can manifest and lead to panic attacks or even bring about an attack of vertigo.

Anxiety and the feeling of dizziness can be a vicious circle. When you feel anxious, stressed or fearful you are more likely to experience dizziness as your body’s natural reaction is the fight or flight response. This response is controlled by hormones, and is an alert state that allows the body to take instant action in the event of danger. Signs include sweating, fast breathing, increased heartbeat, wide eyes, dryness of the mouth, hair standing on end and a tight knot in the stomach. This response is designed to occur as needed and then dissipate, allowing the body to return to a normal level of stress in which it works most of the time. If this does not occur fully the body remains in a state of continual, heightened stress which can increase over time until undesirable symptoms of stress appear.

Coping with a chronic illness is made more difficult if you are excessively stressed. High levels of stress are often linked with the onset of a vertigo attack. It is therefore very important to manage stress and, if necessary, adjust your lifestyle to minimise stressful influences.

Anxiety and stress are very common and most people are able to overcome these without the need for professional help. For others they can become harmful if they begin to affect physical health and day-to-day life by preventing you from doing the things that you normally would. This is where self management comes in; helping yourself by indentifying what support you need and knowing what support is available to you.

Talk about it

It is important to talk about your condition and how it makes you feel. Try expressing your feelings, worries and anxieties to a friend or a family member. Not only does this stop negative feelings bottling up, but it helps your friends and family to gain an understanding of what you are going through.

Contact with others via peer support groups and the Ménière’s Society can provide valuable support and information by sharing experiences and offering advice to one another. Simply knowing that you are not alone and that there are other people in a similar situation can be a great comfort

Counselling is a type of therapy which involves talking about your problems, worries and anxieties. The relationship with the counsellor is confidential and their aim is to help you find ways within yourself to adapt to make the most of your situation and the confidence in yourself to try new ways of thinking and feelings to improve the quality of your life. The counsellor is trained to listen therefore you are able to express your thoughts and feelings freely knowing that they will understand your situation. It can be a relief to share your worries or fears to someone who acknowledges your feelings and can reach a positive solution. Change of employment, financial problems, as well as personal and relationship difficulties can occur. Counselling can help with these and improve the quality of life.

Useful contacts: British Association for Counselling and Psychotherapy (external site).

The Ménière’s Society provides a forum for people living with vestibular disorders to get in contact and support one another. The Society has a list of local groups which are run independently across the UK and also provides support to anyone wanting to set up a new group. Our popular quarterly magazine, Spin, includes member’s letters; sharing views, experiences and tips on coping with symptoms. The Society also has a very successful penpal/e-pal network and members contact list, both of which are fantastic ways to get in touch with others to share experiences and offer mutual support.

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How Veda can help patients with Vestibular dysfunction.

Etrily’s Story

Have you ever had a doctor tell you that there was nothing wrong with you, that your vestibular symptoms are all in your head, and that you should just get out of bed and stop pretending to be sick?

That’s what happened to Etrily L. from Oxfordshire, England. For over ten years doctors dismissed her vertigo, imbalance, nausea, headaches, and brain fog as psychological symptoms. They even tried to get her children taken away from her.

“I didn’t have the physical or mental strength to fight,” says Etrily, whose voice quivered when describing her vestibular journey. And friend, I have to tell you, I couldn’t help but get choked up listening to the terrible trauma Etrily has endured.

That’s why I’m passionate about VEDA’s mission to inform, support, and advocate for the vestibular community, and, friend, I know that you are too! Together, we can ensure that patients like Etrily receive the care and validation they deserve.

Etrily once had a successful career as a holistic therapist. She described herself as a workaholic, and says she loved helping people find health and happiness through changes in their lifestyle.

Etrily operated her business out of a five-star hotel. In 2004, while at work, she went to check on supplies in the stockroom.

Without knowing what happened, she awoke hours later in the hospital. Hotel staff said that a heavy metal ceiling tile had fallen on her head, causing a concussion. She couldn’t talk or feel anything from the neck down. “I was scared and confused,” says Etrily. “I didn’t know what was happening.”

The hospital did all the normal scans, which showed no abnormalities, so they discharged her, claiming that nothing was wrong.

But something was definitely wrong. Etrily couldn’t even walk out of the hospital, so friends had to carry her. That night she passed out and was brought to the emergency room, where they again declared her “well.”

In the years later, Etrily went from doctor to doctor, all while fighting to retain custody of her children. It wasn’t until she found neurologist Peter Harvey in 2009 that she was diagnosed with a vestibular disorder.

She became so ill that she couldn’t work. She finally obtained permanent disability, but it wasn’t easy. The medical advisor on her case reported that she was well-dressed and acted normal, therefore there was nothing wrong with her. Finally, she got a judge who understood vestibular disorders and granted her disability claim.

Then Etrily found VEDA. “VEDA gave me many tools and introduced me to people who are in the same situation,” says Etrily. “Others don’t understand that the days you’re down you can’t even brush your teeth, let alone take a shower.”

I am sure this is a sentiment which rings true to so many VEDA members. And that is why the heart of VEDA’s mission is supporting patients like Etrily, who are struggling and have nowhere else to turn.

Thanks to generous donors like you, VEDA is able to provide information to help vestibular patients like Etrily understand what they are going through, tools so they can cope, and a support network so they never have to feel alone.

Today, Etrily is a VEDA Ambassador, sharing her story to help raise awareness about vestibular disorders. “It seems unreal that a whole decade has passed by and I’m finally out of bed!” she exclaims.

I’m sure you can relate to Etrily’s story, and I hope that you, too, have found comfort and help through VEDA’s Community of Support.

You should be proud of what we have accomplished together! With your help, VEDA continues to expand our educational resources while also making great strides toward reducing diagnosis times through our advocacy efforts. Just this week our patient registry exceeded 500 participants, and medical advisors are analyzing the data so that it can be used to increase funding for vestibular research.

VEDA is succeeding in its advocacy work, resulting in greater knowledge about vestibular disorders and the impact they can have on patients.

We need your support now more than ever to build on this momentum.

Please, would you donate $25, $50 or $100 today so that vestibular patients around the world don’t have to suffer alone?

Donate Now

Your gift enables VEDA to:

  • Connect vestibular patients with specialized healthcare professionals
  • Maintain and expand a library of medically-relevant literature on a wide variety of topics related to vestibular disorders
  • Provide one-on-one support to vestibular patients seeking answers, and
  • Bring patients and healthcare specialists together to collaborate on ways to reduce the time it takes to diagnose a vestibular disorder.
Thank you for your support! You give patients like Etrily the chance to reclaim their life, and the reassurance that they are not alone.

– See more at: https://vestibular.org/Year_End_Campaign#sthash.g9CN2pHG.ejM5TGeL.dpuf,

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