Myalgic Encephalomyelitis leaves us lonely and desperately needing our friends & family to be with us. I understand that some of you may have had an argument or just lost touch or maybe you just got really annoyed that you haven’t had a message back.
Please If you have a friend or family member with Myalgic Encephalomyelitis read on or if you have a friend of a friend who has Myalgic Encephalomyelitis keep reading and then forward this to you friend of a friend.
Tonight like every other night it’s like I have a physical build up of emotion that’s pushing down on my chest , it gets hard to breathe. It’s always the same but I think I know what it is , its feelings of loss, anger, loneliness , feelings of worthlessness. It’s anger and frustration that I can’t do with my life what I want to do. Its infuriation that I can’t do what I have just asked someone else to do. It’s still having so many things in my head and I can’t do any of it or anything about it.
I lay in bed next to my Husband silently crying , it hurts , physically hurts , I have so much pain in my heart, so many thoughts, so many ideas for a better life. While I feel trapped inside this body , I still think about things I want to do , places I want to go but always above all else I want to leave this world a better place. I want to leave some sort of legacy.
Raising awareness of Myalgic Encephalomyelitis is so important to me. I don’t ever want anyone else to ever feel how or what I feel.
The loss of Family and friends hurts the most and I know I am not alone in this. Myalgic Encephalomyelitis sufferers across the world feel the speak out , I want someone to feel relief that someone else has been able to say what they are thinking or feeling.
Life with Myalgic Encephalomyelitis is such a lonely illness and people still don’t understand that , I can confidently say that if you have a friend or relative with Myalgic Encephalomyelitis they are hurting right now and that could have something to do with you. See we hide so much from everyone, we don’t talk about what goes on and we should. Right now your friend could be having relationship problems, they could be feeling really guilty that they missed a school play or parents evening. They might be missing you and really need to talk to a friend.
Something that we all hide from our friends and families is our relationships. I can tell you openly that if your friend has Myalgic Encephalomyelitis the last thing they are thinking about is a physical relationship. They could be having financial problems because they are down to one income .Things like this put stress on a relationship and it’s so hard to talk to people especially if it has been a while since you last caught up. It’s not like you can pick up the phone when you feel exhausted just to play let’s see if you can guess what I am saying when I don’t even know what I am saying .
I speak to Myalgic Encephalomyelitis sufferers every week who are having problems at home trying to reestablish boundaries.
Communication is a huge part of any relationship, from friendship to our partners. I find it so difficult to talk to anyone now and I try to ensure that all communication is text or email. That’s not because I don’t want to speak to anyone, it’s because this illness drains so much that stringing a sentence together is hard. I have to talk with my hands a lot now , I have to point to things if I have forgotten what something is, imagine trying to act something out to someone on the phone. Just a short phone call drains us so much that napping after a short chat is all to common.
I noticed that when I first got ill people sympathised about the illness , it’s now 8 years since my diagnosis and I don’t hear from anyone. I suppose that I should practice what I preach and take this opportunity to speak from my heart directly to my friends and family.
Here goes – To all of my friends and family I’m lonely so very lonely, I feel constant guilt and anger because not having you in my life today hurts so badly. I understand that it isn’t easy to maintain a one sided relationship , I get that but I never expected you to give up on me. I apologise if you are annoyed of me speaking out and this isn’t the best way to go about this. It hurts that no one even calls my Husband or Daughter, they shouldn’t be losing out on a family life because of me . I will admit that seeing pictures of nights out or events that I didn’t even get a invite to is like a blow to the heart. I know that I have changed , I am not the person I was before I took ill but I’m still me , just a very tired me. I know that some family members really don’t like me anymore but that shouldn’t be a reason for you to not get in touch. I feel like I got sick and lost all my friends as well as my family .
Since the illness I just haven’t got time to get involved in drama , gossip or any other useless emotion and yes that has led to me cutting people out of my life. I can’t be hurt again , as for me it’s not just mental it’s physical too.
I constantly feel like I am a bad person and that’s the reason I don’t hear from my friends & family . I blame myself.
I don’t want to live in a world without my friends and family. I truly hope that some of you are reading this, if you are please get in touch, let’s leave everything in the past.
If you have someone in your life who has Myalgic Encephalomyelitis please take this as an opportunity to text them or drop them an email.
Unfortunately sometimes articles in the press or online will cover someone who was magically cured of Myalgic Encephalomyelitis by only eating food that begins with A or they took vitamin shots. Let me reassure you , if you have a friend with Myalgic Encephalomyelitis , they will not be cured as Myalgic Encephalomyelitis has no cure. Myalgic Encephalomyelitis is such a difficult illness to understand that lots of medical professionals across the world can’t get there heads around it.
I suppose the news about the death of Caroline Flack taking her life, on Valentine’s Day made me want to speak out to Myalgic Encephalomyelitis sufferers who are alone and not coping .
We need people in our lives , yes the relationship is going to be different from what we had before but we are still us. Yes we can’t get ready and go for a night on the town but we can still do lots of things , maybe watching tv with us for a little while or pop up for a cuppa , although yes you will have to make it.
I am here for any of you if you feel alone or confused . As always if any of you need a friend please message me . You don’t have to go through this alone x x x