Open letter to companies and brands .
If you work somewhere or are related to someone who could help me then please forward this email to them .
I need this to be shared and for ME to get the attention it deserves for all the right reasons . We are not definied by this illness , we are so much more .
I want this to be something that I am proud of .
I have Severe ME which has me completely bedridden for 95% of the time .
I am totally reliant on my Husband, 17 year old daughter and a wonderful lady named Debbie to care for me .
My body may be completely useless but my mind is still firing on all cylinders.
I want to make a difference, more than that I know I can make a difference but I need your help.
When I was first diagnosed with ME I went through a really dark time .
My friends & family carried on living their lives , lonely & lost I started making friends over the internet who helped me understand this illness and help with the loneliness.
The more people I met the more apparent it was that every single one of us no matter where we lived ,had all been let down by our health systems.
We all had one thing in common feelings of loneliness , confusion and an absence of hope.
Friends & families didn’t understand our illness and what it was doing to destroy our lives . They just went on living their lives and because let’s be truthful there is only so many times they can agree to rain check on your pre made plans .
ME is so misunderstood and it frustrates people if you don’t take their advice to just put on your make up and you will feel better or once you get out of bed you will be ok. This leaves ME Sufferers feeling like they are talking but no one is really listening.
So divisions happen and ME Sufferers go one way and your friends & families go on living their lives .
Meanwhile ME Sufferers speak to Drs , consultants . We end up in A&E as we can’t manage our pain . Our lives ultimately become trapped in 4 walls .
I was determined that if I had this god awful illness that I had to do something to help others .
So I set up a FB page to introduce ME Sufferers to other Sufferers who understood how each other feel .
I get involved in raising as much money & awareness as I can , well as much as my body allows.
Last year I launched ME Pyjama Party for ME Awareness Week which is the 12th May onwards .
It is the only event in the whole ME calendar worldwide that every single ME Sufferer can join in with .
All you have to do is take a picture of yourself in your PJs and post it to our social media boards .
If you want to you can also set up a just giving page and ask for sponsorship.
My dream is that #MEPJParty will trend one day .
Imagine looking on Instagram or twitter and seeing thousands of ME Sufferers, a person not just a statistic.
Let me get to the point .
I was finally able to do a soft launch of my website www. alishawhittam.com
It will primarily be a blog site but will show my attempts to vlog in the near future and I will be honest I am terrified. I look and feel so different to the person I was.
I will be product testing and give my honest opinion on items which are supposed to make a difference to people with limited mobility.
A section called “Ask Alisha “which allows people to ask me anything.
It will allow other carers to get in touch with my Husband & Daughter for help & support.
I will feature “Views from the experts” where I ask ME specialists and consultants all across the world what they are doing . If they aren’t doing anything I will ask them why . Science & medicine hold our futures in their hands. Anyone can sit and listen to how someone is being affected by this illness , can you really call your self a specialist unless you know absolutely everything in the world that is happening in our community.
It takes just one person to start a revolution, one person to coordinate worldwide efforts .
My blogs/will have a “help section” to advise people about benefits & grants and any other help which may be available to them .
I will vlog days out so that people everywhere can see just how hard it is to get about in a wheelchair and also how people treat you when you are in a chair .
I want to be able to flip this illness on its head and give people a way of still being the person they were before this illness , make people feel that this illness is not the defining feature of their personality.
I want to get brands involved to give make up tips , wheelchair fashion , easy to manage hairstyles .
I want people to feel like them again , I can’t even begin to describe what this illness takes from you .
I will also be setting up meetings in Liverpool to allow our local community to meet up .
Hopefully this will create a domino effect where other people stand up to do the same where they live .
So many ideas but I need the right equipment.
I need to be able to use voice recognition for writing . I need editing software so that my daughter and I can teach ourselves new skills like editing what we film.
Graphic design.
Logo designing .
It needs to be professional, I want to be proud of it . I won’t settle for anything less than that .
The ME community could make a difference, a real difference in our lifetime by joining together.
I will eventually be launching are also looking for merchandise to sell .
I am thinking of Pyjamas for MEPJParty, hoodies with #spooniesquad on .
A Spoonie is someone with limited energy to get through their day and was perfectly described in a story wrote by a lady called Christine .
Have a read , it is a perfect analogy of our lives .
I was thinking of branded water bottles as I know that from personal experience, I need a cup with a lid as I drop things a lot .
So I ask you if there would be anything at all that you could do to help out someone with a big heart who wants to make a difference. Every blogger or vlogger needs somewhere to start and a little supports
I am going to put everything I can into this and I know that it is going to make me very ill .
I’m going to do it because of the stories that people have given me the honour to read .
I love a challenge and I am passionate about making a difference.
I look forward to your reply
With Love,
Alisha Whittam