I don’t know how but I’m going to try to explain just how bad it is. Most days are filled with pain the type of pain that consumes everything. Nothing , absolutely nothing can divert your mind from it , pain killers dull it but they don’t take it away. You can try as hard as you can but you still won’t find a position comfortable enough. That’s my life.
If you are new here , Hi I’m Alisha and I share as much of my life as I can in the hope that I can help to raise awareness of ME. I was diagnosed with ME in December of 2012 and I vowed that I would beat this, yet no matter how hard I pushed it , it pushed me back harder.
The first few years I was still working , well trying to. Every time I had a good day I would call my employer to tell them that I would be back off sick leave the very next day , unfortunately ME doesn’t work like that. So I spent time fighting a battle that I couldn’t win and I paid for it.
My daily routine would be up at 6am to get into the shower, here I spent the whole time with my head pressed up against the shower door as I just didn’t have enough energy to stand on my own. Then the first coffee of the day, the first of many. As my body was in so much turmoil I started putting on weight. My body started swelling at the same time so nothing would fit me , I had to wear maternity trousers as I needed additional space to swell as the day went on. I could spend a day drinking water only and my body would still swell enough that I could feel my skin stretching.
I had to be alert enough to drive 24 miles to work and as soon as I parked that car I had to sleep. No joke , I would arrive at work and spend 30 – 45 minutes sleeping before I even went into the building.
The first time that I knew it was really bad was when a colleague who I had sat next to for 3 years started walking towards me and I couldn’t remember his name. This wasn’t someone I saw once a week this was someone I sat with , had lunch with , chatted on our breaks with , that type of colleague. Yet him walking towards me smiling filled me with panic, dread, anxiety , no matter what I couldn’t remember his name. I knew this illness was winning.
I was already on very strong pain relief at this time and I thought that it couldn’t get any worse. That was until I was driving home from work one day and suddenly I felt the car shaking , I had fallen asleep ! . That noise was me hitting the rumble strips on the side of the motorway !
I started losing days the worse the illness took hold, I was sleeping 23 hours a day. Some days I would wake for 30 minutes and then sleep for another day, not another hour , another day. No matter how much sleep I got I just never felt like me again. I tried setting alarms to allow me to keep some sort of schedule but just standing and walking 8 steps to my bathroom , was enough to wipe me out again.
I started losing weeks, some weeks I was only speaking to my husband for 50 minutes over a period of 5 days. The pain was getting worse and even lifting my hand to change the channel on my iPad wasn’t even achievable. I couldn’t eat as lifting the spoon to my mouth exhausted me. It was like each time I picked up that spoon it weighed a ton. I had lost the ability to do most things for myself . I couldn’t prepare food as I had too many accidents. I wasn’t able to use a glass to drink out of , I now used a plastic tumbler with a straw.
My family stopped me using anything glass or ceramic as I was dropping everything. My mug became a travel cup as that had a lid on it with a smaller opening which stopped me spilling hot drinks down myself. I was able to brush my teeth as I had an electric toothbrush so I needed very little exertion. Yet I couldn’t wash myself or my hair. I couldn’t shave my legs or do anything else that made me feel a little better about myself. That didn’t help.
All the little things that make a woman feel a little confidence stopped. I felt and still do feel a mess. This illness has taken everything from me.
I was no longer living , I was existing.
ME is like having the worst flu you have ever had in your life , add to that the worst hangover you have ever experienced topped off with migraines, toothache, not just toothache the type that makes you feel like you have been smacked in the head with a bat. Everything hurts from the hairs on your head to the nails on your toes. The pain never lets up and nothing that you do or you take will take it away.
The past few months have been hard. All I can do is lie there , any movement hurts so I get in the most comfortable position that I can and I don’t move. I can’t move , the pain is too much. I do all that I can to distract my mind , I watch YouTube videos of people living the best life they can. I like comedy and travel vlogs as it allows me to keep hope alive, I dream of leaving my room and being on an aeroplane flying to somewhere hot . I dream of eating food again and enjoying it.
The most important thing that I have taken from this is that you have to keep hope alive. No matter how bad the pain is or how difficult it is to move your body you have to keep thinking of a day in the future when your life will be different.
I want to do all that I can to make a difference , right now all I can do is write so that’s what I will do.
This illness is a very lonely illness , maybe that’s where we can start to bring about change. Maybe just being there for each other can be the start of something huge. This illness doesn’t just affect us , it affects our Husbands/Wives/Partners , it affects our children , our parents, close family and extended families.
This illness takes away our old friends , maybe that’s what we can be for each other , new friends.
I have so many things that I want to achieve in my life but today I just want to reach out to tell you that I am here for you. I don’t care where in the world you live , I’m here for you x
Together we can make a difference x x