I have never been so embarrassed!

 

So as you know, my husband Chris has recently been a week in hospital. We saw many different doctors in the lead up to his diagnosis of Cranial Sixth Nerve Palsy caused by a stroke.

As Chris was not aware of all the medicines he was on, he left it up to me to discuss all medical matters and medications.

I was already stressed and feeling the effects of a fibromyalgia flare. Truthfully, I was exhausted and hurt all over. 

It was an effort to stay awake every day as I sat by his bedside but I wanted to know what was ailing him.

Eventually the doctor in charge of his case came in to update us. I had an important question to ask him and I knew I would forget it if I didn't ask him immediately while it was fresh in my mind. Fibromyalgia does that...

So jumping straight into his conversation with Chris, I told him that my fibromyalgia was flaring and that I had to ask him something important before I forgot.... and I apologised for interrupting yada yada...

Then I forgot. Silence. Expectation. Pregnant pause.

I was so busy explaining my fibro fog and flare and apologising, that the reason for the interruption was over. The question hung in swirling mists of fibro brain fog and I sat red faced and embarrassed.

The doctor looked at me and waited, allowing me time to gather my thoughts and when they weren't forthcoming, he resumed his conversation.

I hate fibro. It rules my life and ruins my credibility as an intelligent woman. It pains me and weakens me, enveloping me in a cloak of weariness that no amount of rest can cure. And it embarrasses me.

I have never been so embarrassed! 

We rarely get any validation

 

Those of us who suffer from fibromyalgia often have little sympathy or even care from a lot of people.

Most people haven't even heard of it and most who even have, often believe it is not a serious syndrome to suffer from.

They don't realise that fibro is in fact all encompassing to the afflicted person and has the potential to dictate how we live.

Not only does fibromyalgia dictate our physical life, but our social, mental and even spiritual life. The person who states that it does not have a great impact on their life has not experienced a full blown fibromyalgia flare.

It is a sad syndrome as it has very few visible symptoms and people imply that we are faking it.

The only thing we fake is feeling better than what we do. We rarely get any validation.

We walk that path together.

 

It's a sad fact that lately Chris and I wake up each morning feeling exhausted. We can sleep for 8 hours or sometimes 9 and still feel tired.

We ache all over and carry the "just woken up" brain fog all day. Our morning routine consists of bloods to check the blood sugar levels and then an insulin injection for Chris followed by a hearty breakfast of pills swallowed down with a nice cup of tea.

Our love language is spoons and our song of lamentation is that we don't have any or that it won't be sufficient for the day's activities. We live just to take another nana or grandpa nap.

Of course I have a double whammy of woes, with my diabetes and fibromyalgia. The pain never departs except for the brief few minutes Chris rubs my feet. I have the combined effects of peripheral neuropathy, in my toes especially and the foot pain that comes with fibro.

With ongoing chronic fatigue, I am certain to fall sleep just 5 minutes into my foot rub. I joke and tell Chris that these days it's better than sex!... only between us- I think it's true! I mean when everything hurts and it's hard to breathe with angina and pulmonary hypertension, foot rubs now are the only pleasure in life that steadies my breathing and still relaxes me..

And talking of breathing, that RSV flu type virus is still hanging around. Not as bad, but bad enough to have me keep my asthma puffers strategically placed at my dining table, computer desk and bedside. It too drains my energy and adds to the joy of a fibromyalgia flare.

Statistics show that more women have fibromyalgia than men, but I often wonder if Chris' chronic fatigue and constant body pains are indeed fibro... there's no particular test to find out, but it wouldn't surprise me at all...

Meanwhile, he lives the horrible life of a fibromite, but at least he doesn't have to validate himself with me. We walk that path together...

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.

 

We need to share the load

Sometimes I feel guilty for letting off steam at times but I really believe I could have a bit more support than what I am getting. 

We sometimes have words during my fibromyalgia flares and when I have polymyalgia rheumatica at the same time, it can make me scream in desperation. I just want a hand. It helps me emotionally as well as physically and I feel nurtured.

I know my husband is unwell and he has my understanding and utmost sympathy. But sometimes, the pain gets so bad and I have so little spoons that I will yell at him to come and make his own cup of tea or whatever.

After words,  I often cry because I aren't usually like that.  Pain changes people.  Especially unrelenting pain. And unrestorative sleep. Especially that.

Yet, to those who don't know the desperation that pain drives you to, they would just think I was being unreasonable and using my fibro to elicit a response from Chris. 

It's not that at all. Our health issues mean that there are times when we have to help one another. And lately when Chris is not well, I find I am left to push myself beyond my own comfort level while he sleeps on the couch.

His pain is not at the same high level mine is. His health issues relate to other issues regarding heart problems. But his issues are difficult for him to bear. I know that. 

Chronic illness in both people in a marriage presents its own problems. Each one having pain that makes the eyeballs bulge, causes arguments of who's pain or condition is worse than the other's. A form of validation if you will.

But here's the scoop about chronic illness. It's not a contest. Just another thing about chronic illness that most don't understand. We need to share the load.

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.

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...

Invisible illnesses hurt as much as a broken arm.

So yesterday I got my tooth seen at the dentist. I was overjoyed that she managed to save it. It was a gruelling 45 minute sit in the chair.

Those of you who suffer from fibromyalgia know that sitting stretched back with one's head tilted to the side is not an easy pose to stay in. Add ankylosing spondylitis and polymyalgia rheumatica to the mix, and it's a half hour of torture.

I must say though that the lady dentist was very patient, kind and efficient. I told her about my many ailments as required for a new patient, and I was amazed that not only did she know what fibromyalgia was, but was very careful to not touch my neck roughly. 

She also gave me double the novacaine because she knew I would be very sensitive to pain.

It so happens that her friend suffers from fibromylgia and she has a really bad time of it. To have the dentist allow me to sit up and have a rest every ten minutes was a blessing. In fact, she was a godsend.

She lowered the chair as far as it would go as I got out, and being aware of my torn knee ligaments in both knees, she helped me get out and stand up. 

Today, my tooth is not aching at all, but my jaw, ear and neck are. I suspect from the injections and keeping my mouth open for so long. I have TMJ as well.

Today I have been doing meals, cleaning my kitchen and folding washing whilst medicating with paracetamol. I have had to take it every 6 hours, but it is what it is. I am still better off filling the tooth as opposed to pulling it.

My plan for tonight's meal is to make a sweet curry pork dish with rice. Chris loves that and it's easy to do in the slow cooker.

My online shop will be coming in an hour or so, and I will put that away. That's it for today.

I loved that the dentist took fibromyalgia seriously. It's not often that it is. When you find someone like that, the validation lifts one's spirits. Thanks goodness some people believe that invisible illnesses hurt as much as a broken arm.

 

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.

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.

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! 

 

I'm not lazy!

You would not believe over the years how many people have shown their ignorance of fibromyalgia by gasping in horror when I say I do not have the strength or muscle power to even sweep my floor.

Because fibromyalgia is an invisible illness, people often think (and sometimes even voice) that I am lazy and a malingerer.

They cannot see the pain as my muscles and ligaments feel like they are tearing. The pain in my neck and shoulders and arms can be intense and it can last long after the floor has been swept.

Usually, it's my lack of spoons that stops me from doing cleaning, but it's muscular as well most times. I do have muscles, but they are like sparrows' knee caps! 

I honestly can no longer sweep, mop or vacuum. It sometimes gets to me because I know how most people think. Nevertheless, it is I who has to bear the pain of those tasks and the pain robs me of my rest and often is carried into the next day.

There are so many muscles involved in sweeping, mopping and vacuuming that come in to play with repetitious movements. Because they aren't used often, they whine and complain loudly.

Rather than pick up my broom I would rather put up with the rolling eyes and snide remarks of people who haven't even heard of fibromyalgia. I know what it is. I know who and what I am. And it's not lazy.

Today's tasks are:

• one load of washing
• Cook spaghetti bolognaise for dinner

Basking in a new world

Over the years, I have spent many a time in a hospital bed.  For weeks at a time, I would lie in traction with Scheurmann's Disease, with hardly a visitor to see me.

I recall every time my mother came in to see me, she would ask if my (then) husband had been in. The answer was no. In fact, he would drop me off at the hospital entrance and then take off speedily. I would only see him again when I got home.

It got so bad that I would never let him know that I was trying to pass a kidney stone or needed another bout of traction until the moment I had to be admitted for treatment. Then all hell would break loose. It was just a sad state of life wherein I wasn't noticed or wanted until a meal had to be cooked or a shirt ironed.

Of course, I would lay internalising why he wouldn't visit me, and the end result was captured in one solitary, heart breaking and mind numbing word: rejection.

In between hospital stays, I limped along life, serving my husband and family, yet feeling terribly alone and miserable.

In the course of time I left my abusive husband and married Chris 4 years after leaving. All came crashing around my ears when I got fibromyalgia. 

I came home from seeing my rheumatologist for my wide range chronic pain and fatigue, and along with a negative result for lupus, came the diagnosis of fibromyalgia.  The trip home seemed unbearably long as I rehearsed in my mind the scene of rejection again awaiting me with this latest news.

You can imagine my amazement when Chris made me a cup of tea as he listened to the diagnosis. He was the epitome of compassion and love. When he handed me my cup, he was astonished to see me burst into tears: not tears of pain like before, but tears of love, happiness and relief!

Holding me against himself, he said he was so relieved I didn't have lupus, and vowed to help me in any way he could with this new thing called fibromyalgia. 

He was true to his word and together we learned about this new enemy that threatened to destroy my happiness. We vowed to never give it the power over us to come between us.

Twenty two years later, we speak in terms of spoons and nana naps and Lists. Pacing and paracetamol and heat pads are our love language.  

As for the young woman watching out for her husband from behind the curtain: she has gone now, to be replaced by an older happier woman basking in a new world of love and that vital word for all fibromites: validation.