Picture showing a stick figure with flowers saying It’s Hurting again .

Support

This keeps me awake at night so I’m just going to say it . I feel like I have no support.

Dont get me wrong , I know I have support from my immediate family and a few friends . Yet why don’t I hear from anyone else?

 

If my friend had anything wrong even though I can’t drop everything and be there for them , I would send messages telling them that I am here for them. I have done this so many times even stretching to include an invite to come and stay here if they needed some space.

I only have to post something on Facebook asking for support and people I count as close to me don’t like the post or share it . Don’t get me wrong I understand that people are busy and they have their own lives , let’s be honest here I absolutely need that love and support right now.

I have been really bad this past year and I know that I am not the best company in the world but hearing that someone has popped down to visit another family member who lives very close to me is heart breaking . Not just to me , I had to sit my daughter down yesterday to tell her that she is adored by the family. I know that this illness has caused that , I know that is the reason that no one calls in or messages us.

It does make you think that I was only a part of everything because I made myself a part by driving to events or calling people to say hi.

It really is heartbreaking to see people you love viewing a message yet not responding.

Luckily I set up a few support groups as if I felt this way others must be feeling alone too. I have met some amazing people online as well as catching up with friends from school.

Loneliness is a huge part of this illness but it shouldn’t be , we need the love and support of our families and friends ,now more than ever . We need friends who understand exactly how we feel too, setting up Friends with ME was one of the best things I have ever done . I know that together we can achieve anything and Millions Missing proved that . Until 14th May I had never met another ME Sufferer in all of the time that I have had this illness and I wasn’t the only one .

Life with an illness that destroys lives shouldn’t be coped with on your own.

If you have a friend or family member that you haven’t spoken to in a long time because they have ME or any other Chronic illness please call them or send them a message . They have a lot to deal with right now , more than you will ever know.

Their whole life has been destroyed, they may have lost their job , have financial problems, they may have changed , they could be angry , they may feel hopeless or even suicidal . No matter what they need you in their life even if it is only a text message once a month to say Hi.

I know that some will be reading this thinking well why can’t they get in touch with me or All they do is moan or talk about being sick. I even offer things that may help and they just ignore me . All I can say to that is STOP . If you have someone who was special in your life then please just message them right now and say Hi .

Please x

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Alisha

Proud Wife, Mother and Nanna . We married 19 years ago in Rome, Italy surrounded by our friends and family. We have the most beautiful, caring, considerate daughter, she makes us proud every single day. I am nan to Alfie, our Black Labrador and he is my best friend in all the world, I love how he understands that just laying next to me is all I need on a bad day and on a good day well it is cuddles and kisses galore. Liverpool born & bred, I never had enough guts to ever move away. Maybe it’s on my cards in the future. I have an illness that has destroyed my life, that illness has led me to blog my life with no filter. I put everything into raising awareness of Myalgic Encephalomyelitis and I would do anything to make sure no one else has to feel the way that I do. We have fun in our little home and I do anything to make my family happy. Love meeting new people over the web and hearing their stories. I Love making new friends and just trying to make a difference in this world.
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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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