Guest post by Annie Ogden

Ugh… M.E. Honestly, that is exactly the way I feel towards it, every hour of every day.

Story time: age 11 I got sick and took a long time to get over it, carrying on with bouts of sickness until 14. Then I was in and out of hospital with a suspected spinal tumour because of back pain. I vividly remember laying in a hospital bed one day, motionless, unable to even open my eyes, but I could hear everything around me as if my brain was awake but my body was dead.

During this stay, I was badgered by every medical professional, asking if I was being bullied and just didn’t want to go to school. Unbelievable. I was discharged with no answers – they couldn’t find anything – so time passed, bouts of illness came and went frequently, but at 17 it just wouldn’t go away.

18 months later I was finally referred to a specialist. Diagnosis led to hope, but hope faded pretty fast when I realised what I actually had. It’s been nearly 14 years now. I had to quit my two jobs and college at 18; since then, life has just been same s**t, different day.

My M.E goes something like this: I have chronic pain, and feel like a hoover has sucked all the life out of me. I walk with an aid, feel like my bones are made of lead. I’m completely exhausted, feel sickly all the time, can’t sleep properly, and suffer from headaches, constipation, etc. My body feels like I went to sleep one night, many years ago, and that was it; the me I knew was gone.

Over the years, my symptoms have remained mostly the same but other things have been added, like a problem with my hip, kidney stones, water infections, and so on. Oh, and I have also developed anxiety and depression just – you know, for a bit more fun. Some more razzle dazzle if you will. The best way I can summarise all this is by describing it as like being ‘locked in’. I feel like my able, willing, wanting and wishing brain is locked inside a body that just won’t do anything I want it to. I will say M.E is not nice, and why anybody would want to fake an illness like this is beyond me. So trust me, we aren’t lying!

Over the years I’ve developed a hatred of doctors. It’s amazing what a doctor can say to you based on a 5 minute talk and a complete lack of understanding. I once attended an appointment at the pain clinic, where a psychologist said these words to me: “You are too reliant on your parents and you just want attention”. I was in my wheelchair, begging for help – but no, obviously I just wanted attention. Another doctor told me: “you know, people with M.E have these pains and they are all just in their head.”

I no longer want to even go the my GP for anything other than your bog standard problems, like tonsillitis or a water infection. I avoid them with problems relating to my M.E, because I know the answer. Each time you get told there is no help, a little piece of your heart breaks and you can’t get it back. So many other interactions with health professionals have gone exactly the same way as I have described, but these were the ones that stayed with me most. So after 14 years, if this is the case and I really am faking, then move over Leonardo DiCaprio; I am ready to accept my Oscar.

Being diagnosed with M.E, and going through all these horrible interactions, misunderstandings and lack of help, I’ve learned a lot about myself. I have my M.E, but you have your M.E. What works for you might not work for me, but it’s trial and error. We all suffer differently and that is OK because everyone is individual. I accept this – apart from the one woman who, when I told my story in a support group, responded: “Well it’s OK for the young girl to just quit her life and her job. I can’t do that; she’s lucky.” I was 23 and wanted to punch her in the mouth. Lucky?! Lucky!! Yes, compared to some other illnesses I guess I am lucky, but honestly I’d be relieved to be diagnosed with something better known. At least then I’d know there was some understanding and some help out there.

I’ve tried numerous medicines and alternative therapies but nothing really helps, and some things made me worse. Now for the most part I’m just resigned to the fact I can only do what I can, and if I can’t, tough. One of the most frustrating things about this is the ‘motivational’ talks people give you, like: “if you try, you can achieve anything”. No, sorry, if I try I end up splayed out on the floor wishing I’d never been born. We all try our best and, if that means lifting one leg out of bed in the morning, then well done! Only you know what is best for you. You can research, ask for all the help, try all the things, but you know in your own mind and body what is or isn’t working and that is completely OK.

When you get something like M.E I think you develop this warped and dark sense of humour, because being in a bad place is no fun. You make jokes about being sick and say things that seem distasteful to others, but it’s better to laugh than cry. I am going to end by saying that my main priority is always trying to do anything I can to get through. Right now, I am grieving for a life I have lost and never got to have. The love, friendships, heartbreaks, days out, and all the other things that come with normal life.

Don’t get me wrong, over the years I have had days out and holidays, BUT – and it is a big but – I have never been able to enjoy them fully because I know I’ll have to face the consequences afterwards. Everything I do in my life comes at a cost, literally everything. No, I’m not exaggerating, EVERYTHING. Sometimes you just have to take the hit and do something for your sanity, knowing your body will suffer later. I spend most of my life at home with my mum, dad and sister. I love them immensely, but I am so completely and utterly lonely.

The worst thing about M.E, for me, is that I feel like a forgotten human being. In all aspects – mostly the health system, but also from family and friends who just aren’t around anymore. In one way I’m glad, because you find out who the genuine people in your life are, but it doesn’t make the loss any harder. So if you feel lost or forgotten because of M.E, please try and remember that at least one other person in the whole wide world knows exactly how you feel.

You can find Annie on Instagram