I have always tried to be so positive when it comes to this illness but this year it feels different , it feels like time to give up!
How do you fight an illness that takes everything from you ?
This year has been harder than most probably because I felt so isolated from everyone. I hardly saw and friends or family in 2019 and to start 2020 off , my Dad held a birthday party for his 65th and I couldn’t attend it, I couldn’t even get in the shower to start getting ready for the birthday party let alone get to the venue. That hurt a lot.
I will be totally honest with you things in my family like many of yours isn’t ideal. I don’t speak to my Sister or see my niece which is very hard but unfortunately just too much has happened to ever change that. I did try sending her a message when my Dad said how much it was hurting him over the Christmas holiday but I never got a reply.
This year has just felt so hard , I have felt so alone and isolated . You can’t understand this illness until you have lived with it. It’s different from so many conditions as for most illnesses you get support , your friends and family are all there to support you , but people don’t understand Myalgic Encephalomyelitis. This really got to me in 2019 and I have cried so much.
Then again so many of my days in 2019 where spent absolutely out of it with exhaustion, crying because I felt helpless or crying because of the pain.
See Myalgic Encephalomyelitis isn’t like any other illness , if you have Flu for instance the flu passes and you are then able to build your strength back up over days or weeks but Myalgic Encephalomyelitis feels like you are fighting your absolute worst flu like symptoms. I describe it like feeling the worst flu you have ever had, your head hurts but it’s not a headache it feels like your head is fluffy but heavy with it and lifting it is difficult , you feel pain in your ears, your jaw , your eyes ache. You feel like your throat is scratchy and it hurts to swallow. Every single muscle and ligament , bones even all hurt , they feel heavy and uncoordinated. The pain hurts in your finger nails down to your toe nails. You feel hot and cold while your skin hurts to be touched. Where as you would normally try and stretch your muscles to get them working or even rub them to relive a little of the pain but with Myalgic Encephalomyelitis that makes tomorrow’s pain worse. You can’t stretch to relieve the pain , you can’t go for a walk or get in the shower or bath as you don’t have enough strength for any of that.
I have had to take baths over the years where I have had to add a piece of string to the plug just in case I fell asleep in the water , that’s how exhausted you feel. Just think of how bad you must feel to come up with a solution like that just to get in a bath and relieve some of the pain in my muscles.
Every single move with Myalgic Encephalomyelitis costs you energy and pain , the worse you feel at the moment the worst the pain will be. That flu like feeling I mentioned earlier I forgot to mention that those flu like symptoms of the worst flu you have ever suffered are multiplied by 10 !
The worst your Myalgic Encephalomyelitis becomes the less you see of friends and family until you don’t see or hear from anyone anymore. It’s silly little things that shows you just how much someone cares but in a bitter sweet way because it also makes you think about just how little your perception of how many others think of you. This has made me feel very lonely in 2019.
I wanted to change that in 2020 but how do you make a change when you have only been able to shower once since the start of the year.
I was lucky enough to have a motorised wheelchair delivered in December and it is amazing , I absolutely love it but it really made me think when my daughter was home. See I asked her what she thought of it as she hadn’t seen it as she was away at university, I could see she was hesitant so I asked her , her reply was “I thought they were only for very sick people” . I hadn’t thought of that but it is.
So for now my 2020 is going to be ensuring that I attend all of my medical appointments starting with root canal on Tuesday. My Daughter is travelling back from University so that she can look after the dog while my Husband attends the appointment with me.
I do have to give a little recognition to my baby boy Alfie , well less Baby boy and more Black Labrador . Alfie is with me every single day and when I say with me he is never more than 4 ft away from me day or night. Right now he is lay at the bottom of my bed , I truly don’t know what I would do without him. He is my best friend in the world, he is there to calm me when I get anxious or upset , he follows me every where and is always checking up on me if I go up or down stairs. This week I had a fall and he must have stayed with me as he was licking my face when I came round. I know that I am very lucky to have such an intelligent dog. As I don’t leave his side day or night when I had to go the dentist last week, when I got home you would have thought I had left him for years not 40 minutes.
I just wanted to get all of these feelings down as a way of getting things off my chest so I apologise if this is everywhere.
If you are reading this and you have any type of illness or anger, hurt I absolutely would try this as just getting those thoughts and feelings out can make a huge difference.
If you feel alone or overwhelmed please reach out , I don’t ever want anyone to feel any of the feelings that I have felt.
My email is alisha@alishawhittam.com
Alisha x
