What it’s really like to Live with ME/CFS

Some of you may not know what it stands for; it is Myalgic Encephalomylitis, which is basically Chronic Fatigue Syndrome.

I would like to start off by saying everyone’s illness is different and everyone will deal with it in a different way. I am dealing with a mild syndrome as there can be severe cases where every task is a struggle and they may be wheelchair-dependent for mobility and can spend most of their life in bed.

              

 My Mini Story      

 I have been ill every day for six years which may not seem that bad, however when it is every day and stopping you from doing life, it affects you hugely. There have been other things mixed in there like anorexia for three years. This has meant I haven’t done full days all week since year 8, so for the whole of my GCSEs and A levels I did miss most of school. When I was diagnosed in the year of my A levels I was advised by the hospital, to take the year out and not do my exams as I have missed far too much I will fail. This put pressure on me, not doing exams, getting into university and so many things. It is long term so I will have this for the rest of my life, I am ill every single day; not all day but every day which is exhausting and mentally exhausting. 

                                                                                                                                                

Condition
  It isn’t just being tired all the time as it isn’t a straight forward illness. It is an immune disorder; it can literally affect any and every part of the body and symptoms vary and fluctuate from person to person. Basically, the brain can't connect properly to the spinal nerve tracts and so fails to control vital bodily function. The way I understand it my brain must work ten times harder than everyone else’s to understand anything, so I am using a lot more of my brain to do anything which can be exhausting, causing me to lose concentration and have memory problems.

Symptoms                                                                                                              

There are many symptoms and things that come along with it, one thing I find the hardest is the pain. I get a lot of pain everyday even if I have tried to take it easy, in all my muscles like up my arms and legs which makes my legs so heavy I would find it hard to get out of bed. Similarly, headaches which soon turn into migraines, that involve me lying in bed in the dark. My whole body will just feel in so much pain, all you can do is just lie there. I may feel ok one minute then the next horrible and there is no explaining it.

The answer to feeling tired or exhausted isn’t necessarily sleeping, even if I am so tired during the day I shouldn’t take a nap as that can make it so much worse and cause me to be even more tired than I use to sleep for days. So, I try to be very strict with myself and only have 8-10 hours’ sleep every night, the key is consistency so I am supposed to wake up and go the sleep the same time every day, however that does get hard to stick too. Also, I could be physically exhausted and not be able to sleep at all and I will be up all night.

Most of my symptoms consist of having the flu every day, for example headaches, sore throats, pain, fatigue, dizziness, heart palpitations, sickness, nausea, muscular pain and problems with temperature control.

                                                                                                                                                                  

Loneliness 
It can be quite lonely as you are being held back from life whether it is going out or doing anything. You defiantly miss out on nearly everything, especially when your friends can go out all night and do two all nighters then get up and go to work all day and get back and do school work all night. When you can barely do an all nighter and if you do you will find yourself in bed for days. It isn’t all about missing night outs though, just generally going into town, not seeing friends at school ever, going to do a food shop with your mum, visiting family, travelling anywhere. Anything can draw out all of the energy out of you.                                                                      

  I have developed anxiety, as my body has slowed down and my mind has filled up which increased any side effects or symptoms but mainly I have a lot of worries. Lately going places I will feel like I will throw up everywhere or have a big panic, however that is another story.                                

 I have been limited to balancing my life by having routine and only having five hours of red energy. This is any tasks that will take a lot for me to do; travelling, working, university, seeing friends, exercise, looking after animals. So, if I was working for four hours I would be limited to do anything else for the rest of the day, otherwise I will pay for it by being really ill for days after. 

Fear for the future    

There is of course a massive fear of what may future will be, in regards to keeping up with university and even after that.. getting a.. job. As I have not done a full day since year 8, I have no idea how I will cope in a 9-5 situation, well I don’t think I will. Soon I have to do a work placement and my illness effects everything so that will be hard. It isn’t about me being lazy, or not wanting a job or to do anything. I have had a job since I was 15 because I have needed one regardless if it has got in the way. I want to do everything; I would love to work in the fashion industry and put everything I have into it. I would love to just get on a plane and travel everywhere, just things can get in the way. 

Hard on people around me                  

 It has been hard to maintain friendships and being close when you aren’t meeting up with them as much as everyone else. I have an amazing group of friends at home and I hope and believe they understand and would never get annoyed if I had to cancel.                                                        

   It must be really hard on my boyfriend as every single day I am ill and even though I insist and do take care of myself every day, he feels he needs and wants to take care of me. As we are in a long distant relationship it will only be two days at a time when we get to see each other nevertheless I do fear one day he will get fed up. As I often don’t have the energy to do lots of crazy things and go somewhere all day and night. He’s hanging in there though and is always here for me. I still find it hard to remember things he tells me or who his friends are which is very frustrating and upsetting when you can't remember who someone is.                                                      

     Susie my mum has always been here for me and been as frustrated as me to find out what’s wrong and that there is nothing she can do to make me feel better. She has understood I have been too ill to go to school and never pushed me education wise, obviously told me to try my best and do some revision but she mostly relied on me being smart and just hoping it would go well. Neither has she babied me and never once done everything for me, she obviously helps me out and would do my washing or cook for me or done anything I asked her too. She also left me to do my washing and cook for myself every night and clean my room, as even if it is hard I do have to take care of myself. 

I just have to accept it and carry on.

  Thank you so much for reading, if you have any questions or would ever like to talk about anything feel free to message me through Instagram. Don't forget to subscribe or give this a little follow as I have just made this one and will be posting so many more exciting things and it means so much to me. I hope if you read this far you have a better understanding. I love you all so much, love from Tishhlah xxx