It’s been a tough few months and I am trying my hardest to get back to some sort of normality but I will be honest, right now ME is kicking my butt!
There are so many things that I want to do , not things for me but things that will make a difference to the lives of others . That is what I am fighting for.
Maybe the worst thing I can do it to try and fight this illness but I can’t give up. I have been through tough times in my life, things that stick with me and no matter how hard I try to put them in the past and leave them there , well it just doesn’t happen like that. I suppose that has a lot to do with the things from my past that have caused me pain are still playing a really prominent role in my life.
I constantly feel like I am not good enough and that people don’t care enough. ME Sufferers all over the world live with pain and rejection every day because of what this illness is. See people don’t understand ME , they don’t get it. I have been told that if I brush my hair and put on a bit of make up that will make me feel better. They don’t realise that to brush your hair you have to be able to move your arm to head height and the simple act of putting on make up is pretty difficult when your hand is shaking uncontrollably , not forgetting by the time we have done the brushing and make up putting on we are too exhausted or that the pain is now so bad that we can’t even stand up.
Our lives aren’t simple. Some think we sit at home all day and watch daytime TV yet anyone with a level of ME that warrants them to be home all day will probably be unable to watch TV because the moving pictures and the sound causes pain. Personally I can’t even sit up to watch TV as it take energy to sit up and I just haven’t got it and then if I watch TV for any length of time I will start seeing quadruple of the TV . If my Husband and I watch TV it is in our bed and on an Ipad screen and it’s not for long periods.
Tonight has been hard , I have been feeling different bones in my body hurting. Not just in one place for example , this morning it was the bones around my eye. I do have pain all the time which I try to control with medication but that feels likes a different type of bone and muscle pain, like the kind of pain you get when you have the Flu. Right now I can feel the bones in the right side of my foot hurting badly as well as my ribs , just sitting on the toilet can leave me in tears it feels like when something is bruised severely but I have got any bruising.
I write my blog in the hope that people who are affected by ME directly or indirectly will be able to relate. Maybe someone you work with suffers from ME and you just think it is all BS or your Aunt suffers with ME and you don’t contact her anymore because you don’t know how to act around her or you are scared of saying the wrong thing. Here is my advice , we haven’t changed , our lives are just very different. That doesn’t mean we don’t want to come to your night out or a party , it doesn’t mean we can’t still laugh and joke. We are still the same person we were before we got sick, if it is your Wife/Husband/Partner then they still want to feel sexy and desired by you, we still want to be treated and have date nights. Here is the tough part , sometimes our body will not let us. That doesn’t mean we don’t want to or we don’t want you to stop asking.
If I am honest I don’t feel sexy anymore , I don’t feel wanted or that I bring anything to our relationship. I don’t feel like a good Mum , I feel like a burden and I feel that if I wasn’t here my Husband and Daughter would have a much better life. I even find it difficult to pick up the phone to my Mother in law now because I feel like I have let her down, before my Father in law passed away he asked me to look after her and I always did before I took ill. Silly things like I would never let her carry a bag if we went shopping and if we went anywhere I would always take her with us. Now I just feel like a burden.
I want to do all that I can to make a difference, I want to stop others feeling any negativity because they have ME. I have to keep on telling myself that I am sick and that I just need to stop judging myself so harshly.
Living with ME isn’t easy unfortunately for most of us ME isn’t the only illness that we are dealing with.
I receive emails from all over the world telling me how bad things are and how they feel like they have no one to turn to. That’s not true I want to hear your story .
Ok , Imagine going to your Dentist because you are suffering from severe pain, pain so bad that is keeping you up all night and how you have tried every pain killer out there and yet you have no reprieve. Your dentist puts you in the chair and looks in your mouth , they sit you up and tell you that as they can’t see anything you must be fine . They send you on your way , yet you are still in agony , you can feel it , you know what pain feels like after all. You go back a few days later and say that the pain is unbearable , this time they don’t even put you in the chair they just tell you that as they can’t see it there is nothing they can do. That’s how we feel every day , we get it from medical professionals, medical services, employers, family , friends , Dentists, we even get funny looks from strangers.
That’s why you have to be the difference, yes YOU ! ME Sufferers all over the world just need one person in their life to really care, it takes just one person to make a huge difference, it takes just one person to start a revolution.
I want to start a revolution and I need your help. I want to help educate the world about ME and how it really effects people. I want to give people the opportunity to see my life without filters , I can’t sit and put make up on to make my self look glamorous so that people click on my blogs or YouTube videos.
I want to show the world that different doesn’t need to be scary , you don’t have to filter what you say to us, you don’t need to avoid us or cut us from your social circle. I have already uploaded a video to YouTube sharing what ME really looks like which was received really well so if you haven’t already go and have a look. Don’t forget to like and subscribe 👍
Life is hard with ME and right now I am fighting a relapse. As soon as I can I will be doing more videos . I want to be able to show people just what a bad day looks like, as well as recording any times I can get out of the house . I want everyone to see just how difficult it is navigating anywhere while you are in a wheelchair . I want to show people things that you probably never have to take into consideration, things like bags . Bags is a good one and something I used to choose based on what looks good. Now I have to get backpacks or cross body bags , think about it ! See I can’t put a bag on my arm when I am using my crutches as it shifts my balance and I have to make sure that it can fit over the handles of my wheelchair if I need that to get around , backpacks are my current favourite.
I have set up social pages so people can keep up with me and my life. Let’s be honest you aren’t going to see me with full make up on and looking glam, 9 times out of 10 I will be in my PJs and with ZERO make up. Don’t let that put you off 😜 I want to do things that might help you like testing products that will help make your life easier and if it doesn’t I will tell you honestly. I want to try out wheelchair fashion and show you how to get hold of sparkly crutches like mine. I will try tips and hacks , I don’t really see what the difference is between a tip and a hack though!
I really do love hearing from you so keep sending emails and DMs . To help all you need to do to help me is read and share my blogs, vlogs and social pages. I also want to hear what you want to see , so make sure you send suggestions to my email or leave a comment.
I know that together we can make a difference .
Facebook – Friends with ME Global
Thankyou for helping , I really do appreciate it .
I love you all so much ❤️
P.S Make sure to like and subscribe x x
