Share a story – Daniel

Hello my name is Daniel and I have been asked to share my ME story. I wasn’t given a diagnosis until 2012 after years of tests and too many blood tests. I had not really heard of Chronic fatigue syndrome or myalgic encephalomyelitis or fibromyalgia up to this point all I can remember is that I felt so ill almost every day and had such a deep tiredness and it never seemed to improve and would get excruciating pain in my joints and constant headaches and cognitive issues (Brain fog was a new set of words) and I had to do something about it. Sadly it took years to get my diagnosis and even longer to get help with my pain and it was frustrating and scary.

Like many though I have many other illnesses and have been hidden from the world since I was 14. I was first diagnosed with acute depression at 14 and before I even knew what it was showed signs of body dysmophic disorder and fell into the horror that is anorexia. At 20 I started to become very anxious about safety of myself and loved ones and this slowly developed into severe obsessive compulsive disorder which I’m sad to say is still very much in control of my life and I’m 42. OCD really effects my ME etc as you can imagine because when I get scared or triggered the compulsion is to make it better as soon as possible and it doesn’t care if I’m weak and have no energy so and OCD flare can then lead to huge payback.

I’m pretty much housebound very rarely go out but that is more for the OCD if I’m honest but I do get very weak days and times when I can’t do much and crowds and noise affect me terribly. I’m still trying to learn to pace but I struggle.

I think the hardest part of this illness is not being in the world and all the things we’re missing and worst of all is the loneliness. I am so grateful for online communities because I have learned so much from others and speaking to people who understand is so powerful and I have made some of the most wonderful friends.

Life is hard and lonely and scary but we matter and we count and we deserve to be heard. We do our best and I truly believe we are some of the strongest souls in the world. Never give up hope and find joy even in the littlest things. I love to write it helps me escape and is so cathartic. I love to express myself and if I can reach out to others and help them feel less alone and understood that is truly the greatest reward.

I had reservations about writing this because I know so many people who are suffering so much more than myself and it breaks my heart to see so many beautiful souls hidden from the world and forgotten but I know it’s not good to think like that because we’re all struggling and fighting and we need all need compassion and love.

Lastly I just want to share a poem with you and to tell anyone reading this that you matter and I see you and you are not forgotten and to those caring for them too.

I see you even if you feel lost and I hear your pain.

I know you feel lonely and hidden away.

I know your battles and I see your strength.

Please never give up my friend.

I see you, I hear you and you’re never alone.

For you my friend are a warrior and are stronger than stone.

From one sufferer to another I send you strength

and love and a massive spoonie hug!

Daniel –