From diagnosis to learning to live with Fibromyalgia

Archive for May, 2011

When we become impatient when waiting!

It does not seem to matter what we are waiting for we can soon become impatient with the anticipation of what is to come.

It appears it does depend what we are waiting for??

If it is something nice, a birthday, a celebration, Christmas, these can be all things we get excited about and eager with anticipation. The waiting is not as bad, we do not become as impatient. Children can’t relate to time, you might explain how many sleeps to the event, as adults sometimes we can stress we have everything prepared for the event.

We know when the deadline is looming and this can have positive and negative aspects to how we view the event.

However when we are waiting for results from tests, be that exams or health tests our emotions can swing like a pendulum. From nervous to depths of despair to trying to think positively as to what’s the worst that can happen!!

For exams we generally know when we are going to receive those all important results, whereas with health results it is out of our control. You can feel vulnerable, you think the worst, your emotions can take over.

So how do you cope when you feel out of control, when you are facing the unknown. We can rely on our friends and family for support but there are only so many times they can reassure you and you still feel out of control.

Depression can be mentioned, but to be honest you not really depressed, you are not having suicidal thoughts, black thoughts, you just want answers and you it now hence the impatience.

I don’t know about you but I do not get impatient normally when driving or waiting in a queue but when it comes to my health and the unknown, the vulnerability takes over, you feel another person. Personally I had my MRI scan a week ago, I know it has been reported on by a radiologists but waiting to be told the results from a doctor may take another three weeks. This morning I decided I could wait no longer and definitely not three weeks. So I rang the hospital, found out it had been reported on but the consultant had not read it. So now I wait for a phone call, my heart is in my mouth every time the phone rings. I do not want to use the phone in case they are trying to ring me. When someone rings I want them off the phone quickly, when my family use the landline to make a call, I am checking the answer phone to check I have not missed that call.

It may not come, health professionals are busy, I am not the only patient but all this seems irrelevant when you are waiting. I am supposed to be writing my novel but can’t concentrate. My life is being gripped with fear of the unknown, have you ever felt like this, a paralysing fear that puts your life on hold until your fear is answered.

Well followers of this blog will know, I am writing this as a cathartic way of dealing with my health issues. Since my diagnosis you feel out of control, you life is not your own anymore or is it the little voice in your head. You know the one, the negative voice who tells you, no you can’t do that or this, you become gripped with your own fear!

I then remembered a book I had read years ago by Susan Jefferies “Feel the Fear but do it anyway”, we can take control of that voice in our heads. We can choice to let it dominate our lives or tell it to be quiet!

Yes I know this is easier said than done but if you ever find yourself in a similar situation I strongly recommend her book. You can tell yourself it is ok, it is normal to feel fear of the unknown but you can control it.

I need to learn as we all do with Chronic illness, we need to learn to pace ourselves or be prepared that if you choice to have a busy day with your family full of activities that you are probably going to pay the price. Extra fatigue, pain, exhaustion, poor sleep because you are over tired and your body can’t quite shut off.

The choice is, if you know you have a busy fun-filled day, you plan a couple of quieter ones to follow it but it is your choice. I read of one lady who knew she was going to pay with more pain but the joy of pushing her child on a swing to her was worth it!

So like me stop waiting and re start living, to quote a well known advert “Your Worth it”

Till next time take care and live your life the way you want to not the way your health dictates.


When you just have to face the facts!

It has been a rollercoaster ride since my diagnosis of that I cannot deny!

I had the added problem of losing the use of my left hand and shooting pains down my legs, hence it was unsafe for me to drive and walking very far is very painful.

This got my mojo down more as it seemed to rob me of my independence!

I know I am not alone in this and there are folk far worse off than me!

Some of my readers will know I am waiting for a MRI scan of my brain and spine, I joke with folk it is to see if I have one. We are great at self mocking when we are feeling low. I have recently returned from a sunny break in the South West of the UK.

You are going to ask well how is this of benefit to me?

Hopefully if you bear with me I will explain. I started this blog when first diagnosed as my way of dealing with it and I thought if anything I can share can benefit anyone else, then it was even more worthwhile.

During my visit I caught up with Family who themselves are adjusting to seeing me with a walking stick and in pain. However one person who I will never get tea and sympathy given on a plate  from is my younger brother. Well slight misnomer, he will offer a cuppa when I visit.

For once I was able to learn from my younger sibling, he had recently been through many changes in his life and he had adjusted and will keep adjusting as the needs be.

When I told him, I was waiting for my MRI appointment and hopefully it was a mechanical problem that could be fixed, he said”and what are you going to do if they can’t fix it”? You deal with it, you adjust your life and move on. The conversation was a little distressing at the time but you know what, he is right. Sometimes you have to face the facts and deal with it!

When my hands were sore from typing, did I cry in the corner, no I mentioned it on Twitter and soon came the suggestion that I try Dragon the speak/type software and I did and I was even invited to guest blog about it on my mentor’s site Nick Daws. In other words, I did not let my sore hands defeat me I dealt with it! My brother was not being hurtful, he was getting me to face the facts.

Sometimes we can live our lives in the what if???

What if I won the lottery?

What if I had the perfect health?

Well do you know what, I don’t even play the lottery, so that’s not going to happen, and I do not have the perfect health but so what!

I am alive, not always kicking, legs can hurt too much! Fibromyalgia is not life threatening, it’s not nice, it’s not even constant, it only constant seems to be is that it changes.

It is hard when you have stabbing chest pain and classic pains shooting down your arm. You start to think you are having a heart attack but the then Fibro laughs at you and the pain moves to your leg and head and you just have to tell yourself, it is Fibro messing with your head!!

I learnt a lesson from my younger brother, no matter what life throws at you, all you can do is laugh right back at it! We can adapt, we can change, that is what makes us human after all.

I hope you enjoy these insights with my journey with Fibromyalgia, drop us a line, feel free to comment, I will always reply.

To more good days than bad, enjoy the sunshine 🙂

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