What Can I Do to Help?

This post is for those of you who are well & wondering how can I help my friend with M.E.
My friends have had to learn how to adapt & adjust to this illness. Our friendship often changes due to my health.....sometimes I can be present to celebrate life's events like birthdays & weddings, & yet other times I am unable to attend because of a worsening in my health. Friends need to be aware that the things I may be able to do today, I may not be able to do tomorrow. They need to not take this personally or be offended by last minute cancellations.

I appreciate my real friends who want to know how I am. Really know. They allow me to tell them the truth, even if it's not the most uplifting conversation. One of my closest friends Ann would often come & visit, & just sit beside my bed & tell me to keep my eyes closed. She doesn't need to fill the air with conversation. Often we would be quiet together. She has cried with me during those difficult times & stood by me no matter how much I could give in return. A true friend makes you feel valued, even when you're not out 'doing' like the rest of the world.

My dear friend Jess understands that if we go out somewhere, she will always drive, as this saves me the energy expenditure. Our friendship is built on mutual love & support. I think my friends understand that I can be there for them emotionally, but I can't be there to help them move house, or to take care of their sick child etc. I think we have an understanding. Other friends who I don't see as often send text messages or call me on the phone to show that they care.

Practical help is wonderful. Things like making a meal when I'm in a bad patch. Driving me to a medical appointment. Offering to pick up anything I may need from the shops. Offering to do some housework while you're over for a visit.

But most important of all is to share that emotional connection. To be valued as a friend. To love & be loved. And to my special group of close friends who have been there for me over so many years, I say Thank You. Xx

Tinitus

My ears buzz all of the time. All day & all night, every single day. I find it hard to hear over the constant buzzing. Our TV is often turned up loud so that I can hear it. I sometimes have to concentrate to follow a conversation. I don't know when it began, but the constant high pitched buzzing is a constant companion. I would describe it like a high pitched mosquito buzzing, or kind of like when your fridge makes that humming noise, only much higher pitched. My husband hears things that I don't. It's irritating but you do learn to live with it. I used to enjoy going to concerts, but now I get such loud screaming in my ears that I need ear plugs to be able to hear the music. Yet another weird, random symptom of M.E.

Arms

I feel like I'm falling.....falling back into the abyss that is M.E. Over the past 10 years I have experienced gradual improvement. The physical gains come oh so slowly. Sometimes it's not until a few years have passed that I could say I was a little bit better in some way. Don't get me wrong, everyday I still live within the confines of M.E. Always trying to function within my limits. Juggling the things of most importance to me, because I have to prioritize my energy. I can't quite get my head around the fact that I could come so far, & then end up back in the sick zone so quickly.

Now after a few minutes on my laptop (always lying down by the way) my arms start to ache & burn. Like the way your legs burn after walking up a steep hill. It burns from my shoulders down to my hands. My hands tremble with weakness. They are cold & clammy most of the time. Even when I lay still on my mat on the floor, which is where I spend the hours when I'm not in bed, my arms ache & burn. I don't move a muscle, but the burn continues regardless. They feel like 1000 tonne weights attached to my body. I remember a during a trip to New Zealand, my hubby & I fed the birds some bread. I threw the bread a couple of meters towards the ducks for a few minutes. I ended up in so much pain hours later. I could barely move my arms. It caught me by surprise that the simple activity of feeding some birds would cost me so much agony for days later. Next time I would have to consider whether it would be worth the pain to feed the birds.

I long for strong arms. Arms that can hold a baby & not quiver & ache in weakness. Arms that can massage my husbands back after he's been at work all day, without cramping in pain after a couple of minutes. Arms that can do housework like cleaning my dirty windows. Arms tender yet strong like I imagine the arms of Jesus. Useful, helpful, deliberate, loving arms. Instead I need to use my arms wisely. Use them when it counts, when they are needed the most.

Title Origins

You maybe wondering about the relevance of this blog's title. I have always loved music. Pre M.E. I used to sing publicly in church & at weddings, & I loved to dance up a storm at parties or clubs into the wee hours of the morning. I have many wonderful memories of dancing the night away with my friend Ann. I was like the energizer bunny back then! As my health declined I was no longer able to sing with much strength, & dancing became like a dream to me. Even now when I hear a song I love, I can picture myself dancing to it. I think to myself....I'm dancing on the inside. I guess it represents one of those things I long to do, but I am not able to because of the energy expenditure required. So even though you may not see me dancing these days, believe me it's happening in my head!

Where to Begin?

It's hard to know where to start this very first post. I guess I'll go back to the beginning.

I first became ill in 1993. I was in my second year of uni, studying a bachelor of education, & doing well in my studies. I had fallen in love with the man who was to become my husband. I had a very happy family life, a happy social life, a happy church life, a part time job & good career prospects. I caught a virus that I just never seemed to get over. Tests later revealed I had been suffering from Epstein Barr Virus, & my GP told me I would be fine in a few months time. Those months came & went, & I was getting no better. In fact I was going downhill pretty fast.

I fought against this so called post viral condition for months & months. Always trying to do more, hoping I would somehow snap out of it & back to who I was. I pushed & pushed. Unfortunately that didn't work, & I had to defer my studies, give up my job, & come to the awful realization that I had become chronically ill with the often misunderstood illness of M.E.

And so here I am.....19 years later. Still living everyday with this wretched illness. Always trying to make the most of my life despite these limitations.