Wednesday 15 November 2023
We need to share the load
Wednesday 28 June 2023
It's not about how fast we spin our wheel
Whether you have the flu or a cold or suffer like I do from fibromyalgia, you will have days where your body forces you to rest simply because you can't do anything else.
But that doesn't mean that resting will make it better. Nor does it guarantee that you will gather more spoons to use when you rise up from your sickbed.
When you are chronically ill, you don't get better and rest definitely doesn't leave you feeling refreshed and full of energy.
The most rest can do for us is give us a temporary respite from forcing ourselves way beyond our comfort zone to serve our family.
Needing to rest can make those who don't understand chronic illness to make us become the victim of nasty retorts stating that we are lazy and putting it on in order to take to our bed.
Being that fibromyalgia is one of many invisible illnesses, we are often maligned as malingers and the angst that this creates can cause us to become depressed as well as angry.
We didn't ask to be sick and most of us in fact push ourselves way beyond our comfort zone to prove to ourselves and others that we are not lazy.
I think as fibromyalgia is often a prolonged illness that we would do well to take thoughts of others directed at us to be taken into the captivity of Christ Who doesn't condemn us but Who loves us at all times.
He understands and doesn't condemn us. We have to take His Word that He loves us as we are.
We need to learn to switch off from those who condemn and criticise us for taking frequent breaks and nana naps. We know we are doing the best we can and our worth is not about how fast we spin our wheel.
Thursday 1 June 2023
It starts with you
Lately, I have realised that one of the reasons for my high blood pressure is probably in the way I stress about not being able to do what I want due to fibromyalgia.
Although I know that I am not to blame for being ill, I sometimes find myself berating myself and feeling cross that I am a lame duck. It really gets to me at times.
Often I succumb to false guilt, the guilt that comes from matters that are not in my control, and it is easy to go to the Pit of Despair. You do not want to go there.
On rare occasions, I burst into tears and it is then that Chris usually comes to my rescue, pointing out that it's not my fault, that whatever needs to be done can wait or he promises that he will do it...
It made me think that sometimes I am my own worst enemy. By self-condemnation, I am making a sad situation worse for myself.
When I realised that it was my thinking that makes me get so down sometimes, I smiled at the irony: usually I am trying to validate my tiredness and pain to "normals"- those who do not live with chronic pain and no spoons. Now the "normals" are validating me.
So today, after cleaning my kitchen and making lunch, I am going to "the beach" again. I am going to relax and only get up again when it is time to cook tea.
I am going to start to speak to myself as I would speak to someone else who was ill and blaming themselves: lovingly and kindly. Which just doesn't come naturally to me. I have patience with everyone except myself.
Wednesday 17 May 2023
Resistance is futile
Fibromyalgia is a really difficult illness/syndrome to live with. It's the most painful and yet invisible of illnesses. It is difficult to diagnose and there's no specific test for it.
It's infuriating that you can go years without a diagnosis. Especially frustrating when doctors dismiss you. Even worse if they suggest it's all in your head, when everywhere hurts so much you could cry. And do.
My diagnosis after many years of suffering and tests was clinched when my skin came up in red welts after the rheumatologist pressed on my trigger points. I have since learned that it's called dermagraphica or skin writing.
One can never leave fibromyalgia or move away from it. One is never really out of a fibromyalgia flare as the smallest over extending of energy drags you back into another one.
Fibromyalgia brings emotional pain too as one tries to avoid looking ill but fails as the pain overrides the best of our intensive acting like a "normal"
There's no cure and one really doesn't move on but moves through it flare by flare, day in day out, year by year. One staggers through it. Lives it 24/7. Endures it.
No matter how hard we try to live a normal life, fibromyalgia accompanies us like a cloak of gloom around our shoulders. We soon learn we must accept it, for resistance is futile....
Plans for today: Today I had the lady come to clean our house and tomorrow we have a house inspection. My plans today are to keep the dishes under control and put away a few clothes from the washing today. Dinner will be pea and ham soup cooked in the slow cooker.
Flaring badly, I see a nana nap on my horizon...
Sunday 4 December 2022
Invisible illnesses hurt as much as a broken arm.
Friday 30 September 2022
Having patience with yourself.
Lately, I have realised that one of the reasons for my high blood pressure is probably in the way I stress about not being able to do what I want due to fibromyalgia.
Although I know that I am not to blame for being ill, I sometimes find myself berating myself and feeling cross that I am a lame duck. It really gets to me at times.
Often I succumb to false guilt, the guilt that comes from matters that are not in my control, and it is easy to go to the Pit of Despair. You do not want to go there.
On rare occasions, I burst into tears and it is then that Chris usually comes to my rescue, pointing out that it's not my fault, that whatever needs to be done can wait or he promises that he will do it...
It made me think that sometimes I am my own worst enemy. By self-condemnation, I am making a sad situation worse for myself.
When I realised that it was my thinking that makes me get so down sometimes, I smiled at the irony: usually I am trying to validate my tiredness and pain to "normals"- those who do not live with chronic pain and no spoons. Now the "normals" are validating me.
So today, after cleaning my kitchen and making lunch, I am going to "the beach" again. I am going to relax and only get up again when it is time to cook tea.
I am going to start to speak to myself as I would speak to someone else who was ill and blaming themselves: lovingly and kindly. Which just doesn't come naturally to me. I have patience with everyone except myself.
Sunday 3 July 2022
Pain is a disability
Anyone who suffers from chronic pain knows that it precludes us from a lot of enjoyment of life. Pain makes the vicissitudes of life that much harder to bear.
Everything is exaggerated both physically and mentally, and the only thing I can do is accept that this is not my usual self, for pain changes people.
Pain disables us in many ways. from physical activity. from family life. from sex. from sleep. from patience. from social life. from functioning normally. from life generally.
The effects of pain cause us to withdraw from people and become reclusive. It makes us feel isolated and unable to really feel understood or validated. We learn to be distrustful of others.
Because chronic pain, in my case fibromyalgia, causes us so much mental as well as physical angst, we decide to retreat to our home often preferring it even if we had enough spoons to leave.
Seeing as pain is such a disabling affliction, it makes no sense to me that we are often regarded by doctors with suspicion when we request heavy duty pain relief such as opiates.
Most of us cannot get enough medication to adequately help us with our pain. We often then succumb to depression and live as recluses due to agoraphobia.
We who suffer from chronic pain know that it is a disability. Invisible and destructive. We live in the knowledge that pain is disabling.
We just wish doctors were as aware of the ongoing relentless disability called Pain.
Saturday 30 January 2021
At least it has a name!
Most of us have waited many years for a fibromyalgia diagnosis. Meanwhile while we wait, we have been treated as malingers and have often been offered ill informed advice from people who don't even understand what fibromyalgia is. Many of us have been dismissed by doctors or told it is all in our heads as they write a referral to a psychiatrist!
We Fibromites know it's not in our heads but our muscles, tendons, neck, knees, and joints. We can hardly stay awake in the daytime, and given that we can't even sleep at night in comfort, we are often sleep deprived and anxious as we await our diagnosis. One that we are hoping will be key in helping overcome this horrid syndrome as well as validate our pain to others.
All these things prior to diagnosis are all brutal in their own way. And most pain relief does not really help us even after a diagnosis of fibromyalgia. The pain is debilitating. So are the flares which are limiting. The spoons for daily living are scarce. Or non existent.
It hurts us further that the fibro fog that robs us not only of clear thought but words, is the only thing that people can notice. All other stuff is invisible therefore to some our pain doesn't exist, especially as we usually don't look sick...
As there's no cure and very little that helps, our life doesn't change much after a diagnosis of fibro.. but even so, it is some small comfort that at least it has a name!