It’s a dark rainy morning as I peak outside. Graham is in the shower getting ready to go to work, he always gives me a cuddle before he leaves for work and some days we even manage to talk for a little bit.
A permanent companion as always is cuddled up at the bottom of my bed just waiting to give me big kisses. His love is so pure and uncomplicated all he wants is my love in return. It doesn’t matter to him if I haven’t brushed my teeth or showered for a few days or that my hair hasn’t been washed in 2 weeks , all he wants is belly rubs and to cuddle me. On a really bad day he won’t leave my side , he will cuddle in as much as he can and fall asleep. When the pain is too much for me he will walk around to my side of the bed and give me a little lick on my nose or my hand.
This beautiful dog who adores his family always knows , somehow he just knows. He loves it when I can get out of bed and sit on my bedroom floor as he know that means play time with Nanny. Nothing special just rolling the ball across the landing but for him it is everything. I love how excited he gets when he comes back with his ball in his mouth so that we can do it again. I know that he won’t ever leave me , even if I can only manage to get out of bed to sit and roll his ball again in another six weeks. He loves me anyway, I am his world and he is mine.
My Princess surprises me every single day , she frequently astonishes me with her maturity and her beautiful heart. Her life is hard and I hate myself for it. At 18 she shouldn’t have to clean the house or make an evening meal yet she does that every day. As well as cooking , cleaning and ironing she also looks after me. If I take a shower she helps me get in and out , she helps me wash as well as picking up anything I drop, trust me it happens a lot more frequently than you would think. See since my hands have been bad I no longer have control so I can go to pick something up and somehow it will drop to the floor , I constantly drop or inadvertently move things to the floor. Don’t get me wrong she gets annoyed and angry but she is always there for me. It doesn’t matter to her how bad I am or how fat, unattractive and useless I feel . It doesn’t matter to her how many times we plan to do something or go somewhere and it doesn’t happen, She will get into the bed next to me and tell me about her day or about something she is watching.
My Husband , My Daughter and Our Dog Alfie are the only constants in my life. They are the only people in my life that haven’t given up on me. My Dad calls when he can and my Mother in law asks Graham every day how I am and that is my world.
I can go weeks without speaking to anyone else. That’s hard.
I get it , I know that after you have invited me to do something and I have let you down that it must annoy you . I know that I must be boring to talk to now . I know that I am getting more and more difficult to understand because I can’t think properly . Having a word in your head that you can’t think of the name of must seem odd to you , especially when I am trying so hard to think about it that the words come out wrong. I get that the old me isn’t me anymore. I understand that seeing me in a wheelchair must be hard to wrap your head around.
I just wish you could understand how much it hurts when I see pictures of get togethers or parties that I haven’t been invited to or how you pop in to see someone who lives 5 minutes from me yet you didn’t pop in to see me. It feels like you have given up on me.
I’m not the easiest person to get along with and I have had arguments as well as fallings out but so does everyone else . I have done things that I am not proud of . I have secrets which eat away at me every single day that I will never speak of , secret things which happened so long ago which made me see just how dark this world really is. I have seen and lived through things which would destroy some people, most people.
I wake up every morning in the same room that I spend every waking minute in . I eat in my bed, I watch TV in my bed, I catch up on emails in my bed. I converse with other ME Sufferers from my bed , it isn’t the same as speaking to someone face to face but it is all that I can do.
I have never been really confident , I have appeared to have real confidence but it was an act, a fake it till you make it type of thing.
When you don’t hear from anyone you used to it makes you think that you are what is wrong. You begin to feel that you are the problem. All the relationships you have had in your life feel fake, you try to rationalise things in your head. Did you ever really have friends ? Did all the people who told you that they loved you and that they will always be there for you just say it because they felt that is what they should say ? Then you think no , it’s just that they are busy ! You think that everyone in your life, who still manages to see other people or visit others in the family are just too busy , that’s why no one calls or visits you! That’s right they are all just busy ! It not you !
Those feelings eat you up when you feel hopeless, worthless, useless. You feel that things you have done wrong in your life are somehow connected. That even though everyone makes mistakes yours are somehow so much bigger , they have to be , Right ?
Loneliness is soul destroying.
I can understand exactly how feelings like this can escalate into something so big . Loneliness, feelings of worthlessness and hopelessness on top of all this pain makes you understand how people don’t want to go on. How suicide can feel the only way out .
When I first got really sick I knew that there had to be a reason for it , I feel that I have to do something. At my worst I set up Facebook , Twitter and Instagram support groups and I can honestly say that they have saved me. I put meeting my Husband , having Rebecca , finding Alfie and setting up the support groups as the greatest achievements in my life.
If you have ME or are affected by ME in any way then please get in touch. Our support groups are so successful and full of amazing ME Survivors. We are here for you , we want you to share your story , you can even talk privately if you want.
I don’t want anyone else to feel the way I feel.
If any of my friends or family actually read this please don’t take offence. I just needed to get my feelings on paper. I love every single one of my family members & my friends and I would love to hear more from you, life is hard and I know that I am not the only one or that I am unique or superior in any way. I just wish I could have that part of my life back, yes I find it hard to get out now and I may not reply straight away but don’t let that stop you from getting in touch or inviting me somewhere. Please take into account what I have said here about not speaking to anyone , so if you want to ask about me then get in touch , don’t ask someone else because they do not know .
This illness has taken away my career , my aspirations and my dreams . I think it has taken too much. I am going to try fighting back again , maybe a little less aggressive this time .
We can do this together x
Please find below a list of all of our social media groups :
Facebook – Friends with ME Global
Facebook – Friends with ME Northwest
Facebook – Life with ME , A view from my bed.
Facebook – Millions Missing Liverpool
As well as our social media accounts you can get in touch using email or the forum on this website.
If you have a business query then I you can contact us at sales@alishswhittam.com or LinkedIn .
Love to you all x
Alisha x x
