ME Awareness Week - My Personal Story

Dear Friends,

ME Awareness Week

Last week (6th - 12th May) was ME Awareness Week and I had planned to write a blog post about ME from a personal perspective. However, as we know, life doesn't always go according to plan and I wasn't able to blog last week. At first I felt frustrated at missing out on doing this, but then, I believe, God reasoned with me and so I came to see that there is no reason why I cannot share about it a week later.

I believe that having Awareness Weeks for various physical and mental illnesses are incredibly important. As a society we need to be more aware of what others face, we need to understand better their struggles and learn how we can support them and show compassion for them in their difficulties. Whilst awareness weeks are good, let's not stop talking about these things when the week is over, but let's continue to talk and be open. It's not always easy to share because it means allowing ourselves to be vulnerable. But when we share our own stories it encourages others to do the same and there is blessing when we do so.

Today, I want to add my story to the many others that are out there, because each person's story is unique to them. I want to help raise awareness of this illness and one way I can do this is through my blog. This is not a post which is meant to draw attention to 'Poor Me, see how I've suffered.' I want to write this with the message of hope I have - although I still have ME, my relationship with Jesus is one which brings me hope in the midst of the struggle.

Although more is known now about ME than ever before, it is still a misunderstood illness as many of the 'invisible' illnesses are. (Fibromyalgia and depression to name just a couple.) I think it's so important to raise awareness of these so called 'invisible' illnesses and encourage a culture where people feel safe to be honest and open about the things which they are going through. We need to create a place where people receive love, compassion and acceptance.

I became ill with ME when I was in my early twenties but because little was known about it in the mid-nineties it was not diagnosed until a couple of years later by which point I had become really ill as a result of constantly pushing myself to keep going. I remember feeling incredibly weak all over, severe nausea which resulted in losing a lot of weight as I just felt too ill to eat, muscle pain all over my body, so so tired, not the normal tired you feel at the end of the day, but something much worse, poor sleep, poor concentration and constant headaches/migraines. Going up the stairs in our home was such a task, I could have been climbing a mountain for all the effort it took me. Depression, not a symptom of ME but a side effect for some of us, soon kicked in. 

I remember one GP telling me before I was diagnosed that all I needed to do was take a walk in the fresh air! I was devasted by his response and lack of understanding. 

For me, there were a number of factors which led to developing ME. I was working as a supply teacher and was very busy as several teachers were off sick at the school I was in. I too became ill with some sort of virus but I refused to give in and let down the other staff. Until the end of the week when my voice gave out completely on me as I walked in the school building, and they then sent me home. I was getting married in a few months time. Of course, getting married is a special time but was also very stressful. Particularly because I knew just what kind of wedding dress I wanted, but could not find it anywhere! We had bought our new home a few months before the wedding, and whilst living at home with our respective parents, Jason and I were busy working on it. There was much to do before we could move in. At the same time I worried about my sister and a relationship she was in and that played on my mind a good deal.

When the ME was at it's worst I could do very little. I had pushed my body for so long that eventually it said, 'Enough is enough', and it gave up on me. That was the scariest time when I first realised I no longer had control over my body. Housework was beyond me. Most of my days were spent sleeping in bed as I had no strength to do anything. I gave up work and my involvement in church. I remember sometimes the thought of trying to wash my hair was just too much. Holding a pen and writing Christmas cards left me with muscle pain in my arms; at times a book could be too heavy to hold. (The Kindle is a wonderful invention!) I experienced brain fog when I couldn't reamember a particular word or a very random one would come out of my mouth. If you've ever had something like this then you'll know how stupid it can make you feel. And here I was in my twenties, not long out of Uni, with a teaching degree.

I felt useless and worthless - I was good for nothing. I could not live up to my own expectations of what a wife and mother should be. I put so much pressure on myself and then of course the guilt set in.

One day during a Sunday morning service the preacher made sure we all  had a square piece of paper and pen. He asked us to write down something we were good at. I don't remember what the actual message was, perhaps something about God giving each one of us gifts to use for him, which is a good message but as I sat there with the pen and paper in my hand I was paralysed. I had nothing to write on that paper, I couldn't think of one single thing I could do. My self-esteem was rock bottom, I had nothing to offer anyone. My friend next to me whispered 'Write down that you're good with children.' I wrote it down, but I didn't believe it. I had written a lie (as I saw it.) 

ME robbed me of my health in most of my twenties, all of my thirties and it is still having an affect on my forties. However, I am much better than I was in the beginning ten-fifteen years. I have been taught how to manage my life better, how to pace myself and to make myself have regular rest periods during the day in bed. 

I know up to this point, you may be thinking where's the hope in all this. Please bear with me because it is coming.

One thing I know for sure - my illness is not a punishment from God. Although, I do believe he will use situations in our life to get our attention. In his book, The Problem of Pain, C.S. Lewis wrote:

“We can ignore even pleasure. But pain insists upon being attended to. God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is his megaphone to rouse a deaf world.” 

God may well have been wanting to get my attention for a long time but I just wasn't listening to him. I was a Christian, a follower of Christ, but there was something he wanted me to know if I had only taken the time to listen. And I believe that being ill with ME was one way for him to gain my attention. I do just want to reiterate here that I am not saying he gave me ME, but I am saying he has used it to draw me closer to him and because of it he finally got my attention.

You see, I believe that what God wants more than anything else is for each one of us to have a close, intimate relationship with him. He loves us so deeply, pursues us so passionately, and will never give up on us. My pain has caused me to slow down, be quiet enough and still enough to hear him. It has taught me the value of just being with him and resting in him. He has done an incredible transformative work in me which I don't have time to go into now. He has changed me and is changing me, as the Bible says:

I am convinced and confident of this very thing, that He who has begun a good work in you will [continue to] perfect and complete it until the day of Christ Jesus [the time of His return]. Philippians 1:6 (AMP)

I'm not sure I would be the person I am now had it not been for living all these years with ME. I sometimes wonder who I would have been had I not become ill with ME and I realise afresh the extent of God's grace to me.

Through living with a long-term illness God has taught me various Biblical principles which each one of us would benefit from living out. Such as:

•  the value of a Sabbath rest;
•  regular alone time with God;
•  recognising my weaknesses and limitations and depending on his strength;
• doing that which he has called me to and no more than that;
• understanding that my identity is founded on being a child of God and not on  anything else.

Some days are harder than others and it's on those days when life is more difficult that it's important to remind ourselves this is not where our story ends. We just need to read the Bible to know what awaits us. 

In the second to last chapter of the Bible we read:

He will wipe away every tear from their eyes and eliminate death entirely. No one will mourn or weep any longer. The pain of wounds will no longer exist, for the old order has ceased.” Revelation 21:4 (TPT).

Halellujah! Praise God! What a day that will be!

To Think About:
Is there something you are struggling with? Perhaps it's poor health, money problems, relationship worries, addictions? Who can you share with who will support you in your pain? Ask God to give you wisdom to know you who you can open up to so you aren't bearing it all yourself.

What things have God taught you through your difficulties? Can you share this with another to encourage them in their own journey?

Is there someone you know is going through a difficult time? Is God directing you to be a support and encouragement to them? In what ways can you do this?

Vicki

If you enjoyed reading this devotional blog, then you may like to know that I have two devotional books both of which are available to buy from Amazon. (The content of these books is material adapted from past blog posts.)

Both my devotional books are available to buy through Amazon. "Dear Friend...52 Weeks to Encourage, Challenge and Inspire" If you would like to know more or would like to buy a copy then please click here

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