Numbing sensation down my forearms, pain shooting through the muscles each time I move into my fingers. Joints feel as though they are strapped too tightly, rubber bands for ligaments and tendons. Tingling in fingers and chronic exhaustion all around. Numbing sensation down front of lower legs with pain in toe joints and muscles.
Forearms barely able to support my arms and shoulders barely able to handle the weight of my arms. Back and spine struggling to keep me upright and ribs feeling compressed and making it hard to breathe. Brain sore and foggy, words struggling to come. Pelvis sore, as though I’ve been running and haven’t stopped, hip joints tender. Skin tender. Eyes tender. Ears tender.
Pain under my finger nails and barely able to speak for exhaustion’s sake. Every muscle seems tensed and hurts, fatigued and barely functioning. Twinges, spasms, numbness, light headedness, concentration problems, pain, pain, pain, intense fatigue that sleep does not alleviate.
Barely able to tackle the stairs. Shuffling one step at a time, one moment at a time.
This is my life right now. I have severe Myalgic encephalomyelitis. My name is Rachel and I am a follower of Jesus Christ, a “Christian” you might say. I am typing everything as it is or has been today and is right at this moment. My typing is slow and very painful but I type out of compulsion by the Holy Spirit.
Yes, I believe the Holy Spirit is asking me to type this. Might I be mistaken? Perhaps, but I will never know if I do not try.
Why is my God asking me to share this negative circumstance? Because I’m smiling right now. Even though a moment ago tears were falling down my face I am still smiling right now. Not in my own strength, though.
My name is Rachel and I am a follower of Jesus Christ.
The last eight or so years have been filled with days like today. What did I used to do? Curl up and sob bitterly, unable to comprehend what was happening to me. I gave my life to Christ about a year ago now, what has changed? I have a smile on my face and am laughing.
The above description is common place for me. It is a very real, very painful and very interesting place to be; I could be feeling “okay” (definition of okay: not in so much pain or as exhausted but still affected by ME) one moment then suddenly collapse in agony. There’s no tomorrow or a week, there’s just today. There’s no in a day, in an hour, just in a moment, just this moment.
I live moment by moment. And at this precise moment I need to take a break from typing.
Why am I typing this? Because the Holy Spirit encouraged me. Why? Because I believe God, my God, wants to let you in. I want to let you in now. See the ME. I bear it to you.
Screaming agony, inability to speak, unable to nod or shake my head some days I just lay in bed. What do I do? Do I cry? Sometimes because it hurts. Sometimes because, when I encounter God, I can do nothing but cry. Do you know what else I do? I pray.
I’m not typing because I think I’m better than you. Goodness, no. I am weak. I am severely flawed and barely able to care for myself. At twenty one I cannot prepare myself a meal and can barely wash myself. I do not say this out of self-pity, it is mere fact. At this time, at least.
I don’t like talking about myself. I don’t like all these I’s and me’s and mine’s. I’m doing it though because I feel the Holy Spirit is compelling me to. Why? Because if I don’t share my pain how can I share God’s grace? His working in my life?
“God, I need you. Jesus, I need you.”
Every time I have a day like this and every day where I do not have a day like this I say those words. I adore my God and I know he adores me. It’s taken a long time to accept and realize that. Why would he love someone so useless? How could he adore someone who, by modern day standards, is useless and hopeless and a waste and a burden?
Because he is God, the Almighty God, the perfect Father. He created me in his image. I am not useless. I hurt and am exhausted all the time but I am not useless. He doesn’t make us useless.
So why did God make me then allow me to get sick like this? I confess I haven’t asked him that question, I’ve pondered it myself though so let me give you my reply.
So I could learn to love him. So I could realize, every day, my need for him.
I’m losing the ability to type now, I barely have the strength to push down the keys. Guess what? I’m smiling again, though I’m too tired to really. But hey. There you go.
I do not enjoy pain or fatigue. I don’t hate it either. It’s just there. It’s a part of my current state-of-being. God is in control of it, he could heal me in a heartbeat. He’s chosen not to.
Why? So I could learn to love him. So I could learn to depend and rely on him.
Guess what? I’m doing that and can smile when my body feels like its being churned up by a meat slicer and going to explode. No, that is not an over-exaggeration. That is severe ME. Welcome.
Physically I can barely take care of myself but God has given me the strength to stay cheerful in the darkest depths. Do I always stay cheerful? Of course not. I have times of deep despair and frustration however I know he is there and I give him those times. He’s in control. I can rest.
I’ve finally, after over eight years of disease, accepted that it’s okay to rest. I don’t have to do it all. I don’t have to worry about not being able to get a job and be a “normal” human. I do my best each day and thank him for all the victories. I’m grateful to wake up in the morning. I don’t like hurting or being exhausted all the time but it serves a purpose.
What?! Illness serves a purpose?! Yes, for me it does. I am not saying you should be glad to be sick or impaired in any way, shape or form. It is a devastating loss when you lose your health however it does not have to rule you.
Yes. I said it.
My name is Rachel and I am a follower of Jesus Christ.
I like to repeat myself, I do it a lot anyway, nice to do it purposefully for once to be honest. Why am I repeating myself? Why not. I want to emphasize the fact that I am alive – right now – because of Jesus Christ. His grace saved me from physical and spiritual death. I can live now because of him. I had no reason to live but now I have a reason to die. I had nothing to live for but now I have someone TO DIE FOR.
What greater love is there besides this? He knew me before my life began, he knew every mistake I would make, every SIN I would commit, every moment of impure thought and speech and still he DIED for me. He DIED for you. He was REVIVED for all of us. He gave himself so that I could live and die for him.
He gave himself so that we could have a relationship with the Father. A relationship with God. No “you must do this”, “you must dress this way”, “you must blah blah blah”. I am not talking about religion, I am talking about a relationship. The purest and most powerful relationship a human being could ever have.
The relationship that – dare I say it? The relationship that every single human being is truly craving. Deep in your soul there may be a sorrow, a loneliness, an anxiety, a desire for the greatest gift at all. What is that gift? The gift of pure love, the relationship with Love himself, with God Almighty – Yahweh – Jehovah – the Lord of Hosts – the LORD – the Father, the Son, the Holy Spirit.
My name is Rachel and I have severe ME. I can barely wash myself, some days I cannot feed myself. I am twenty one years old, unemployed, unable to seek further education and without a future in “human standards”. What about God’s standard? I have a future with him. Even if I die tomorrow I will know that my life has served some purpose. I was created for him. I was created to share his Good News, his love – not his judgement.
Let no one under the name of “Christian” tell you you are not precious. You are precious. You are dearly loved. You are created in his image. He is calling you. He loves you. He longs for you.
I am losing the feeling in my arms and my hands are beginning to fail.
I want to let you in because I have made the decision to love, Jesus called me and has given me a new heart, a new life. My body is a prison sometimes but it’s okay. I can spend my day in prayer on my bed, speaking to the one who will never leave me. The great Counsellor, Comforter – Redeemer and Friend. He loves me.
Do I wish for more than this? Sometimes. I do feel like a burden sometimes to the point of tears however God reminds me that he created me and is in control of my times, he knows I’m sick. He knows my disabilities. I have had prayers for healing, I have prayed for healing, I’ve had healers pray for healing. No healing has happened?
Why? Because it is not the time. God is in control of my times. I have much to learn through the ME and will thank God for it.
Did I just say that?
Yes. I thank God for my severe Myalgic encephalomyelitis. The pain, the exhaustion, the concentration disorders and all that stuff. He didn’t inflict this upon me, he gave me hope. He allows it so I may learn and grow closer to him. It’s working Lord, I trust you. Do as you know best.
This wasn’t an overnight change. It took floods of tears, countless days of agony and torment from both myself and Satan and a great kick up the backside to get to this point. Thank God that the Holy Spirit is a gentle and powerful teacher.
You don’t need to fear judgement from God when you are a believer of Jesus Christ. He will make all your paths straight. He will bring every badness in your life to good. He will bring good out of evil. He will deliver you. He will sustain and provide for you.
If only you would let him.
Christianity is not a quick fix. It is not a “get out of jail free card”. It is a relationship, like all relationships it takes hard work and dedication to maintain and sustain. Thank God our God is our creator and knows us. This isn’t an easy road but my word the scenery is absolutely stunning. If only you would join me.
You’re more than welcome to, you know. You’re more than welcome to sit next to me and we can listen to God together. We can grow together. We can live in his Word together. Live in him together. He wants you there. That’s what matters. I do want you there too, of course.
What have you done in life that warrants regret and pain? What sorrows follow and cling to you like a parasite? What pain lingers in your body and soul that you would flee from him? The lover of your soul?
He longs to be with you. No matter your pain – no matter my pain – he loves you dearly. He may not prevent you from experiencing the pain of life but he will be right there with you, holding your hand.
He is the lover of your soul. He is God Almighty.
My name is Rachel, I am a follower of Jesus. The Christ. The Messiah. My greatest friend. I have severe ME and cannot type for much longer. My world is full of exhaustion and pain, isolation and regular failures. What is yours full of? He will be there for you, he can change your heart so you no longer feel that deep-rooted fear, he will not take it away, he will enable you to conquer it. He overcame the world. The creator of all things wants to talk to you.
If only you would answer him.