Freedom Part II.

In my last post I spoke of how I feel about my loss of freedom, with RA. It was depressing as I was feeling down, to say the least. Yes, much has been taken away from me.

Then, there is my mind. In my mind, I travel to strange lands and have the most wonderful adventures. My legs are strong and I stride over hills, down valleys. I lie next to rippling a brook and place my hand in the cool water. I look up at grapes hanging above and reach out one of my straight arms and twist off a succulent, sweet bunch. The juice drips from my mouth as I savour the sweetness. I walk down a cobbled street in Edinburgh and walk into a cafe. It is cold outside and I cup my latte with both hands. I watch the people passing outside with quiet happiness. All in my mind.

So fly in your mind even if you can only hobble with your body.

Freedom Part I.

I was watching a television show earlier and I suddenly felt this terrible sadness. I did not understand the reason for awhile. Then it struck me. I have lost so much of my freedom.

I can't dance like I want to, like I used to love to dance. I can't roll around with my dogs as I used to. I can't even get down to the floor even if my neck could take the roughhousing. I can't go out to my beautiful garden and plant organic vegetables. I can't read a book for too long anymore as my neck hurts and my arms hurt. I can't just take the car and drive to a Starbucks gor a latte. I can't go on holidays.

I need help for many things I do now. I cannot understand. I was stronger and more independent a little more than three years ago. I could walk to the shops across from my office alone, I could drive, albeit with pain. I exercise now, more than I ever did. What has happened.

I mourn this great loss. Today I feel this loss so much. Rheumatoid Arthritis, you have taken so much from me.

Mikey.

Mikey is my toy poodle. My daughter and I share his attentions. He is lying on the floor next to me while I type. Every time I get up from my chair, he gets up too, looking at me with anticipation. Poor thing, he wants to go to bed but he wont until I do.

You only get this kind of loyalty from a dog. A dog has the patience to sit and listen to you without any shore of boredom or irritation. How many times can you talk about your pain to a human being, even a family member, before eyes glaze over or that person starts feeling uncomfortable.

A dog knows no boundaries when it comes to his love for you. Mikey is prepared to wait all night if need be for me, to decide to go and sleep.

When I stumble, and I do that often, I curse and grumble at Mikey. He just looks at me and wags his tail. He knows I am not really blaming him. He is like Mary's little lamb who followed her everywhere. Mikey does that too and he looks like a little lamb.

So, if you have chronic pain like I do and need someone to show their care all the time, get a dog. I have three.

Mikey.

In the Heat of the Day and the Night.

Its been so, so warm these last two days and nights. Well its crazy hot in that it makes me crazy!

I am writing this before I bring in the two monsters a.k.a my german shepherd and my bull terrier mix. It's bad enough trying to manage two hyper dogs with RA and then having to do it in this heat. I have the RA not the dogs, if you are confused. Do you know dogs can have RA?

The air conditioning unit in the spare room (where my computers are) is blasting out cool air. Doesn't feel very cold to me. Is it the drugs? It really is uncomfortably hot. The animals are uncomfortable too, poor things.

If I could I would jump into my car and drive somewhere and have a cold cold drink. I can't can I? Another one to be added to my list of what I can't do.

I am not feeling sorry for myself. Just the heat.

Meditation and Sleep.

I have thought about doing meditation and I have been advised to do meditation.

When I first thought about it and then thereafter, it was about pain control and management. I have not yet achieved any pain management with meditation but there has been a pleasant "side effect" of my efforts.

I sleep better. Hurrah! Those with RA, chronic pain will understand how I feel. You do not sleep well when you have pain. With RA you need to move often and your body wakes to do so. Its more than that. Its the leg spasms, the pain, the anxiety about the morning. Sleeping is a problem, waking and moving is the bigger problem. You need to push yourself up and get to the bathroom, brush your teeth, then...and then.... Sometimes I think its easier not to go to bed.

However, with the some rest I am getting, things are that much more manageable. A little goes a long way for me and those like me.

I say my prayers and then I meditate for just a very few minutes before bed. Try it. Go on the internet and read about the techniques. If you are religious use the name of Jesus if you are Christian or a name of God as a mantra or focus word. Even a minute's meditation will help.

I pray that your efforts at meditation will help you as it helps me.

Stress.

Stress is bad for everyone. Stress is not recommended for those with RA or other autoimmune diseases, to put it mildly. If you suffer stress, you suffer more pain. Whether it is really increased pain or just a perception of increased pain, you still suffer.

Don't forget those flare ups. Stress can cause them. You can be caught in a vicious circle, - stress - flare up - pain - stress.

You have to fight stress. I do every day. It is my enemy and I treat it so. Try deep breathing and other relaxation methods. Meditate, even if only for 2 minutes a time.

Let go. Let go of things that cause you stress , let go of people who cause you stress, and let go of hate. Hate eats into you.

When you have RA or other chronic diseases, there are so many limitations forced on you. Pain is your constant companion. You come to realise what is and is not important in life.

Do not waste your time and energy on those who do not care or who do not try to understand. You need it for yourself. Take back your life. Get rid of that unwanted stress.

Crooked Fingers, Beautiful Music.

My piano is here and it gives me great joy. I took a few lessons eons ago and just practised and played a few tunes thereafter. What is great is that I can still remember a bit and have started playing nursery rhymes. It is a little difficult to place my fingers on the keys and keep them there.

Ok, ok, no genius here but so what? The practice helps limber up my bent, stiff RA fingers and I am doing it with all this time I have. When I play, I smile and miss my daughter a little less. When I play, I am far away in another land and I don't feel the pain.

I cannot walk fast or with any semblance of grace. When I sit and play, anyone watching and not knowing me would never think that I have any physical problems. He or she may well think what a poor pianist I am of course.

However, when I play with my crooked fingers, the music may not be great but it is beautiful to my ears.

Sadness.

A plane is lifting off right now with my daughter in it. I feel such sadness. I said goodbye on the phone a few minutes ago. I hugged her goodbye more thann 3 hours ago. I could not be at the airport to see her off because of this body of mine that has failed me. I do not want her to be sad for me. I will be alright. I am a survivor.

That is what RA has done to me. It has ravaged my body and taken many of my choices away. I will not let it ravage my soul.

I had a choice, whether to let my daughter go so far away to university or keep her here with me. I chose to let her go. I cannot run any more, I want her to fly.

RA will not defeat me.

Moans, Whines & Whinges.

Today is my day to do all of the above. I am entitled. My daughter is starting her 2nd year at The University of Edinburgh and I won't see her until Christmas. More than 3 months. I miss her so much when she is away and we quarrel a lot when she is home. I think I start to think about her leaving again whenever she is back. She leaves tomorrow.

I have beeen suffering from vertigo, saw the E.N.T. surgeon last night and he diagnosed it as benign postural inbalance. Its caused by some calcification as a result of accident trauma or, ye, rheumathoid arthritis.

Everything aches. Today is my day to indulge in my pain (not all physical). Tomorrow, I will be be strong and say goodbye to my daughter.

Puff the Magic Steriods.

One, two, three, Boom! That's the sound of the steriod explosion. Do I sound loony? It must be the steriods.

Yes, I am back on steriods, sob sob. Was that a voluntary act, done without coercion and undue influence? Just the gentle persuasion of my kind rheumatologist. After my last encounter with steriods, I puffed up like a puffer fish. Took me so long to get to my now svelte 40kilos, 88 pounds for the non metric people. But then I had vasculitis and was on long term high steriods. This time, it is only for four weeks. The problem with a flare up and steriods is that you have to be careful with the exercise. I was told, " just continue with your stretches".

You know what steriods can do. I'll chant the litany - damage organs, thin bones, affect moods...
You do know that I am talking about cathabolic steriods not that body building "roid rage" anabolic steriods.

The thing about my kind of steriods is that it cuts the inflammation and thus pain, so quickly that some come to like it too much and can't stop or reduce the dosage even when they are told so by their doctors. You can't really blame them. When you have known such pain, the relief given by steriods is bliss.

Whatever the problems, steriods are important for any inflammation.

That's why I still love my magic steriods - at times!

Pain : Part III - The Power of Pain.

No, I did not type incorrectly as I am wont to do and its not about the power of love. We will leave Ms Carey to do that.

Masochists - stop reading! There is no S & M here.

Pain does give you power in a strange way. It gives you the power to understand, it gives you the power to empathise, it gives you the power to strengthen yourself and it gives you the power to make it all meaningful.

When you have experienced severe pain, you come to be more understanding about the pain of others. You are not so quick to criticise someone who suffers from migraine for instance. You learn to empathise with anyone who suffers from pain, physical or emotional. It is not about everyone whining and.whingeing, it is about the deepest understanding of another's pain. You rise up out of the deepest depths of your agony to be stronger.

How does it all become meaningful? If you try, try and try, you emerge a stronger person with the power to do and be all I have said above.

But why me? Why so much pain? Well , maybe it is so you can use the pain to get that power.

Its not so easy to think this and be that when you are in so much pain. Take the time to think about it on a day the pain is not so bad. Perhaps it will not feel so bad when it does come back to coil around you. It will not be able to crush you.

"Upbeat it".

Today I was asked my reason for starting this blog and I was told that it was a bit gloomy.

Well I started this blog to share my life with RA in the hope that some with RA and/or chronic pain would get some comfort, some hope and laughter out of visiting it. I know what pain is, I know the feelings of frustration and anger at the limitations forced on you. There is always someone else worse off.

Its not all gloom and doom. I know too that life can and will be better.

So let's Upbeat It.

In the quiet of the night.

Its almost 2am and I am the only one (man or beast) awake, I think. I am sitting at my laptop contemplating life and my fingers. They are rather bent and stiff, my fingers that is. I still love them. They enable me to sit here, type and communicate with others through the wonder of the internet. My brain helps a bit, of course. Surprisingly, I am not sleepy and I serene.

In the quiet of the night, I ponder on how being alone is not being lonely. Oh, its so important to know this especially if you are suffering from an incurable disease,pain or your problems are crushing you.. This is the perfect time to look inwards, to think about life and your life. This is the perfect time to talk to God and know that it all means something though you may not know the meaning now. This is the perfect time to commune with the One who is always with you.

In the quiet of the night, I pray.