Are we self promoting…..? I don’t think so…..

Before I start, I havnt written this because I’ve been criticised or because someone has had a go at me. I’m writing it as a thought process after a conversation with another playmate.

In a previous world, not many years ago, the world was silent of those with dementia; we were locked away in asylums, left to die. Now we’re speaking, out it can only be a good thing. People will deal and react to speaking out in different ways, but the important thing is the voice . Who the voice belongs to is irrelevant …….

How we choose to use our voice is irrelevant. Some excel at campaigning, some locally, some nationally, some internationally…..all irrelevant. No matter what we do, how big, how small, it’s all equally important.

When we speak out we inevitably become ‘known’, our faces known, our actions scrutinised, our diagnosis questioned. It’s really exhausting simply living with dementia, our self esteem is stripped away from us when we’re diagnosed. So sometimes the evil side of being known can make us question what we’re doing, can reverse the good we’re doing. That’s the last thing we need or want.

Our physical self may be in the limelight, but what we’re doing is so much more and the physical face is irrelevant. What we’re promoting is a way of living, a way of adapting, a way of surviving this bummer of a diagnosis. A collective voice becoming louder as more speak out.

To some it must be difficult to see the fine line we’re walking along. If we’ve given others confidence to speak out, if we’ve taught others to be open, we must congratulate ourselves, we must celebrate. We mustn’t compare ourselves with each other, we mustn’t compete with one another, we mustn’t criticise one another, others will do that for sure. Instead we must stand equally together and recognise everything we all achieve.

As with life and people in general, all will respond to this challenge differently. Some will seek out the limelight, and that’s fine, others will be shadows in the corners, and that’s fine too. The main thing is we’re talking. Our collective voices in whatever way we choose or whatever way our talents allow,  are all relevant, all going some small way to changing the future.

That’s what keeps me going.

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

43 thoughts on “Are we self promoting…..? I don’t think so…..

  1. You are such an inspiration Wendy and your blog is helping so many people living with dementia to realise there is still a fulfilling life after diagnosis. Thank you

    Liked by 1 person

  2. Hi Wendy. I for one enjoy reading your uplifting words every morning. My sister has Alzheimer’s and you help me see into her world a little bit. Please don’t let the naysayers get you down. No one is forcing them to read your wise words! You are indeed helping others so please don’t stop. Warm greetings and hugs from Canada!

    Liked by 1 person

      1. Wendy, please keep writing/speaking, as you have the energy and inclination to do so. Every authentic voice needs to be heard. I recently met Dr Jennifer Bute who speaks very powerfully as someone else who lives wit dementia. Thank you for all you share.

        Liked by 1 person

  3. Wendy, until someone is in your shoes, there is no tolerance for questioning anything you say or do. I continue to be inspired by you and the dedication you have for bringing awareness to dementia. May God bless you and all the others striving to understand what its like to live with this disease and educate others!

    Liked by 1 person

  4. Hear, hear Wendy – you go girl and pay no heed to those who judge and criticise. Until any one of us has a diagnosis or been very close to someone who has they have no idea what someone living with dementia feels or experiences. Keep shouting from the rooftops. I will too. Sending warm hugs from Scotland.xxx

    Liked by 1 person

  5. You are an inspiration to many (including me) and are opening up people’s hearts and minds one by one. I am grateful for you for doing what you do, amazed at how much you manage, and interested to read, from New Zealand, of the many different perspectives that are helping to develop understanding and services (and quality of life) for those with dementia and their families and carers. You are educating me widely and enjoyably as I negotiate my future and plan what I can do, personally, to ‘leave something behind’ from this experience we live with. Turning a disaster into an opportunity!! All the best and a big virtual hug for all you do. Barbara

    Liked by 1 person

  6. Wendy, don’t beat yourself up/ get upset by someone criticising you. You have done so much opening up the debate on “ the Dementia Journey” for all of us, (including Carers). l/ We are fortunate to live in East Yorkshire, have had the pleasure to meet you.
    Your blog is so inspirational to all of us. And if it opens up debate- negative or positive!- it still questions our perception of Dementia and its consequences. So sorry if one persons comments have been hurtful to you, keep going.
    PS Given your change in tastes , have you tried Yorkshire Tea for Hard Water? ( green packaging) Regards.

    Liked by 1 person

  7. Wendy, I look forward to your encouraging words daily. Keep up sounding the word and be proud of yourself for doing so. Love to you, from Gayle in United States

    Like

  8. Hi, Wendy, Many people that have spoken out who have dementia have had their diagnoses questioned. This is not the fault of the people living the best they can with dementia and trying to help others, it is the system of the last hundred years, the worst thing the Dr. Alzheimer’s did, was to be a psychiatrist. And for all those professional who says “oh you are too young to have dementia” The lady diagnosed with Alzheimer’s was 42 and also Alzheimer was originally the name for people manifesting dementia symptoms before 70. Due to Dr. Alzheimers being a psychiatrist, for the last 100 years all the types of dementia were dealt with under mental health and they the professionals did not believe there was anything they could do. They also did not diagnose a person until a very late stage, they couldn’t remember who they were or their house. It is only been in the age of the internet that the number of people with dementia can collectively be heard. Thank you for being one of those voices.

    Liked by 2 people

  9. If I look at it from society’s viewpoint the response to dementia to date has been inadequate in light of the sheer numbers of people affected directly or via their loved ones. 800,000 people in the UK alone is an emotional, physical and financial burden that society cannot afford and should not accept. As you have noted before, senile dementia was a diagnosis that indicated an acceptance on societies behalf that this was just part of growing old for many people. Young onset dementia makes it clear that this is a disease which should and must be tackled. Self promote as much as you can because many of those with it cannot speak for themselves and are hidden from the view of society.

    Liked by 1 person

  10. We all must cope in the way that suits us best, like you I am loud and proud but cannot journey far but remember most things. People see us with dementia as “sufferers”, sitting in a corner. Organisations are worse because of their financial impact: I remember your argument with the DWP. For my sins, I used to be a benefits fraud investigator, not in EYorks, and it has taken me three years to stop thinking I myself might be a fraud as the symptoms are now so bad.

    Liked by 1 person

  11. Thank you, Wendy for being my inspiration for years. I hope that you are able to keep your blog because you have shown that not all dementia is the same and through you face many challenges daily, your heart and love shine through your blog and I often wish that I could see you in person.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.