The Government has a plan

/ Disabled blogger, Myalgic Encephalomyelitis / By
Sick and tired of feeling sick and tired
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The Government has a plan but is it too little too late? When I was first diagnosed with Myalgic Encephalomyelitis in 2012 I was relatively lucky, now ok The appointment to see the ME Team in Liverpool was lost and then budget cuts happened so I didn’t see someone as soon as I needed to. When I did get an appointment I did receive support by having someone to talk to, I was referred to my local occupational health team and pretty quickly I had an additional bannister fitted on our stairs, I was given a shower stool, toilet surround and had a referral for a wheelchair. I was lucky.

I have spoken to other sufferers both here in the UK and sufferers worldwide, Some sufferers have nothing close to the adaptions in the home that I was offered, and some don’t even have a healthcare professional who understands Myalgic Encephalomyelitis. Since the pandemic, people have experienced many of the same symptoms as an ME Sufferer which is called Long Covid and resources have been allocated to find a way to make a difference in their lives but again at the medical professional level, people are being missed.

What needs to change? I spend every day in pain severe enough that I need to take Morphine to cope. When Morphine and my other prescribed medication aren’t enough I have to take Oramorph for that breakthrough pain. I know that I am extremely fortunate to have a wheelchair and crutches as well as a walking stick to help me get around my home on a good day. Having an additional bannister to help me get upstairs and a seat to sit on when I take a shower made a huge impact on my life. Most importantly I have a GP Practice that listens to me and a specialist team here in Liverpool should I need them for anything at all.

Everything that I have experienced that has made the most difference in my life is this community that we are building, being able to talk to someone over a Zoom call or the chance to meet up for a coffee gives me hope in life. It’s a very different life from the one I had but it’s life and that is priceless.

So is it enough that the Government has a plan? 

The government has a plan – To read the GOV plan to improve the lives of people with ME/CFS click the link below 

https://www.gov.uk/government/consultations/our-plan-to-improve-the-lives-of-people-with-mecfs-easy-read

 

Youtube

I wanted to take a minute to introduce you to my YouTube channel. 

Since I have been ill I have tried to keep my mind as active as my body would allow me to. It’s taken me 10 years to achieve skills that a healthy person could learn in 6 months but to me, it’s a huge accomplishment. Over the last week, I have achieved 100 subscribers and I am incredibly proud of that, every single person who subscribes to my channels is joining our community

This channel is a space of authenticity and connection. By sharing my journey, I invite you to join me in building a community where vulnerability is celebrated and support is abundant.

So, whether you’re a fellow sufferer, a dog lover, or someone seeking inspiration to overcome obstacles of the day, I invite you to hit that subscribe button and become a cherished part of our community.

By joining this ever-growing community, you’re not just subscribing to a YouTube channel – you’re becoming a part of a movement. A movement that champions inclusivity spreads awareness, and celebrates the beauty of life in all its forms.

So, hit that subscribe button and ring the notification bell to embark on this incredible journey.

My latest video talks about shopping online for Lingerie, I shopped online at both Next & Marks and Spencer and while shopping online is a necessity for me sometimes I get more than a little frustrated because the pictures don’t show me what I need to see. Seeing something on a model with a perfect body doesn’t give me an indication of how it Is going to look on my body. I really do hope that you enjoy it and please leave me a comment on the video on my YouTube if you are joining my channel from this website. Your support as always is greatly appreciated 🫶

 

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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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