YouTube Channel launch to highlight Severe ME

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I have Severe ME and I am launching my own YouTube channel to show people just what it is like to live with a Chronic Illness.

I am so nervous about this but as I always say “What doesn’t kill you makes you stronger”

It is all set up . My YouTube channel is done and in the next few weeks I will officially be a vlogger . I love this page so I won’t be neglecting my blog, but I feel passionate that I can’t be upset about people not understanding my illness when I don’t allow them to see me on a bad day. Life with Severe ME is life changing in so many different ways and I feel the best way to let my friends and family in is to show it.

Its going to include so much more than just my illness it’s going to show brands and manufacturers that we are still here. Take mattress companies , over the last few months we have seen companies like Casper & Eve roll out big advertising campaigns all with pretty , able bodied people in .         They claim to give the best nights sleep , yet have they have someone with Severe ME or Fibromyalgia test out their mattresses ?                                                                                                                                       If something out there could help me have a restful nights sleep then I would be beating their doors down . You can’t claim to be the best when the absolute worst sleepers haven’t tried your products.  

Same with sofa companies , on the run up to Christmas our TVs will be full of companies offering guaranteed delivery before the holidays. They don’t understand for people like us we need to have sofas which are a little higher , so that getting up and sitting down is still achievable. So like everything else for people like us it will probably have to be specially ordered at a premium and an extended delivery period.

We should be asked what will make our lives easier. Our lives and needs are different.

I would love for someone to come out with a mainline range of fashionable clothes for wheelchair users or a bag that I can hold when I use my stick or crutches .

Getting dressed is so difficult for so many people in the world but designers don’t take that into account.  

Make up gurus have hundreds even thousand of videos on YouTube , all showing the latest make up looks which take 30 to 40 minutes just to do the eyes , it makes me laugh.  I haven’t spent a total of 40 minutes in the whole of 2017 to do my makeup let alone just an eye look.  

Hairstylists show us how to do a simple up-do. They don’t show hairstyles for people who can’t lift their arms to put bobby pins in. How can you show us how to curl your hair when we can’t even wash our own hair. I’m lucky that I have one of my closest friends who does my hair for me but I rely on my daughter to brush it every day .

We are still a part of society. Now I know that some people are sitting thinking you self entitled so and so. Just hold on ! . I do appreciate that I have clothes on my back and food on my table . I’m not selfish and I do a lot for anyone less fortunate than myself so calm down.

It is 2017 when are we going to include every part of society on TV and print media . Advertising campaigns & TV/Film need to stop excluding someone because it isn’t the look they are after.     Just because some thinks that clothes only look good on a size 0 model doesn’t make it right .

Every one should be included , our world should now be Inclusive.                     

We have to stop accepting an ideal in marketing campaigns and on our TV.  After all these organisations are happy to take our hard earned money.

I will admit that I am really scared to put myself out there . My self confidence is so low and I have big hang ups over the way I look. As well as cringing about the way I sound but I feel like I have to.

The only way for change to happen is to just do it. 

So I will be showing the world what living with Severe ME is like.                                                                           I will be giving tips on hair , make up & fashion.                                                                              Products reviews and unboxing of things which advertise that they make our lives easier.                   I will be showing you just how it feels to be out in a wheelchair on days out & shopping trips.                                                                          As well as giving you as much access as I can to hospital & GP visits .  

I have lists and lists of contacts in the ME community. I will be putting questions to ME specialists and researching why the ME community is how it is. Life with Severe ME is so much more than feeling a little tired or more run down than usual.

My focus will be pushing to make change , real change. I am talking about something which will make a real difference in peoples lives.                                                                                                    The medical community has to change, we have to change .

The release of Unrest has shown just what can be achieved. We can not allow that progress to slip.

This channel will be a positive platform for change. Life of a Severe ME sufferer and just what that means.

Of course it will evolve with help and comments from The Spoonie Squad. I love that name and think it describes us perfectly .

The ME community is amazing and I know that by working together that we really can make a difference .

I have include a link to all of my social pages below , please let me know if the links don’t work.

Subscribe to my ……….

 

YouTube. 

https://m.youtube.com/feed/account

Facebook.                                                                                          https://m.facebook.com/alishawhittam/                                             https://m.facebook.com/MEPJParty/

Twitter.                                                                                                       https://twitter.com/alishawhittam/          

Tumblr.                                                                                                                    https://whitts.tumblr.com/ 

Pinterest.                                                                                   https://www.pinterest.co.uk/alishawhittam/

Instagram.                                                                                   https://www.instagram.com/alishawhittam/

 

Let me me know what you think and what you want to see , I really do want hear from you x 

Much love to you all x 

Alisha 

Related Posts

What is Myalgic Encephalomyelitis

According to the NHS Website, Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness

For more information please visit https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS:

  • Can be severe.
  • Is not a result of unusually difficult activity.
  • Is not relieved by sleep or rest.
  • Was not a problem before becoming ill (not life-long)

Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before illness. This is known as post-exertional malaise (PEM).

Sleep problems.

Many but not all people with ME/CFS have other symptoms.

Pain is very common in people with ME/CFS. The type of pain, where it occurs, and how bad it is varies a lot. The pain people with ME/CFS feel is not caused by an injury. The most common types of pain in ME/CFS are:

  • Muscle pain and aches
  • Joint pain without swelling or redness
  • Headaches, either new or worsening

Some people with ME/CFS may also have:

  • Tender lymph nodes in the neck or armpits
  • A sore throat that happens often
  • Digestive issues, like irritable bowel syndrome
  • Chills and night sweats
  • Allergies and sensitivities to foods, odors, chemicals, light, or noise
  • Muscle weakness
  • Shortness of breath
  • Irregular heartbeat
Information is taken from The CDC Website https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms

Myalgic Encephalomyelitis does not have a cure.

Find a Dr or Consultant who listens to you is the first step

It is a manageable condition and depending on the severity of your symptoms the more difficult this can become.

I advise learning to listen to your body and what it is telling you. If you feel tired rest and if you feel pain find a solution to reduce that pain, this could be through pain medication prescribed by your Dr.

I am not saying that finding a Dr who listens or listening to your body is going to be easy as this illness is incredibly complex for some and manageable for others.

Having a Dr who listens to you or reads about the latest drug that sufferers are recommending can take a lot of unnecessary stress and anxiety from the sufferer.

It would be best for me to point you to the above question What is Myalgic Encephalomyelitis? 

Most pages list the illness as ME/CFS or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or sometimes even Systemic exertion intolerance disease (SEID).

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