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.

And the icing on the cake is...

Friday we went to the chemist and were treated to a cup of tea behind the counter. In between customers, we chatted and caught up. 

We were amongst the first of their customers and we have gone solely to them and rejoiced with them as their business grew. 

We don't go out much, and he and his wife know this. They are lovely people and we will miss them if we find a new rental- so much so, that we have decided we will still go to them for our prescriptions. 

Thanking them for their hospitality, they asked us to call in every Friday for coffee. Well, it looks like Fridays will be script days!   

In saying that, it will depend on whether my fibromyalgia allows me to travel. There are days when I just want to stay home as my spoons are few. But  just knowing that whenever we do see them, we will be welcome and missed is precious.

It does get lonely sometimes here. It's nice to have friends. The icing on the cake is that they are Christians! 

You just have to flex with fibro

 All of us who suffer with fibromyalgia know that it's a very unpredictable illness. We just can't plan with it as we don't know how we will feel until we wake up- and even then it's unpredictable.

We can start our day with extreme stiffness and pain, yet can come better by mid morning some days. It makes planning our day difficult to say the least.

I can't count the number of times I have had to apologise to someone for not being able to socialise or go shopping. I felt well at the time of arranging or accepting the invite, but fibro had other plans and held my body hostage.

Countless times I have planned to declutter my house or some other chore, and I have even gotten started only to find that my body was yelling at me, "Seriously??" and I had to stop. 

It is very challenging and even depressing. But it is what it is. Fibromyalgia is a pain in so many ways!

Lately, I have learned to say to people that I would love to come/do something but because of my fibromyalgia, I won't really know until the day how I will feel. So I will say a tentative yes and hope to be there/see you! 

I have had to learn to not be dogmatic about when I will do a certain chore. For example, all my life as a homemaker, I have changed my sheets every Monday. But with the coming of chronic illness, I might not feel well enough to do it that day. I have just had to accept it.

Part of accepting our new normal as Fibromites is to not get too upset if our body fails us on any particular day. We have to remember that tomorrow is another day, and even then it may not support us the day after that. It is just that unpredictable.

I have learned the hard way too that it's no use getting into a funk or berating yourself if fibro calls the shots and shoots down your day. It's not the end of the world, and you just have to flex with fibro...

Fibromyalgia is a wicked ruler.

So yesterday we went to see our daughter after lockdowns were lifted. The weather was beautiful and we bought some fish and chips for lunch and we ate them in the car overlooking some water. It was lovely!

We haven't been out socially for about 4 months, and it was a real novelty to keep on driving with no restrictions. We had a lovely cup of tea with our daughter and caught up. 

Driving home, we took the long scenic route. It made us feel glad to be alive. Last night, I slept like a baby but unfortunately woke up in top of the range pain. It's going to rain.

Fibromyalgia is such a wicked ruler. It can come and bite you on the heel, just  after you've had a lovely and special time. Maybe it was sitting so long yesterday, maybe because of the changing weather. I don't know. All  I know is I have another fibro flare.

Sitting here typing and in pain, I have come to realise that in spite of knowing that fibromyalgia will rear its' ugly head the next day, it's important to keep living.

The only alternative for me is to stay home permanently and wrap myself in cotton wool but be miserable doing it. I don't want that to happen.

So I will put up with rebound flares after using all my spoons if it means that I have a life other than that of an invalid. I am more than that.  I want to have episodes of pleasure in my life no matter how brief.

I need to make memories and keep in contact with my family. I will overcome it, even if fibromyalgia is a wicked ruler.

Things on my to do list are just basics today. Dishes, cooking and resting.

You have to flex with fibro

 All of us who suffer with fibromyalgia know that it's a very unpredictable illness. We just can't plan with it as we don't know how we will feel until we wake up- and even then it's unpredictable.

We can start our day with extreme stiffness and pain, yet can come better by mid morning some days. It makes planning our day difficult to say the least.

I can't count the number of times I have had to apologise to someone for not being able to socialise or go shopping. I felt well at the time of arranging or accepting the invite, but fibro had other plans and held my body hostage.

Countless times I have planned to declutter my house or some other chore, and I have even gotten started only to find that my body was yelling at me, "Seriously??" and I had to stop. 

It is very challenging and even depressing. But it is what it is. Fibromyalgia is a pain in so many ways!

Lately, I have learned to say to people that I would love to come/do something but because of my fibromyalgia, I won't really know until the day how I will feel. So I will say a tentative yes and hope to be there/see you! 

I have had to learn to not be dogmatic about when I will do a certain chore. For example, all my life as a homemaker, I have changed my sheets every Monday. But with the coming of chronic illness, I might not feel well enough to do it that day. I have just had to accept it.

Part of accepting our new normal as Fibromites is to not get too upset if our body fails us on any particular day. We have to remember that tomorrow is another day, and even then it may not support us the day after that. It is just that unpredictable.

I have learned the hard way too that it's no use getting into a funk or berating yourself if fibro calls the shots and shoots down your day. It's not the end of the world, and you just have to flex with fibro...

I just want to stay in bed!

So today I woke with everything aching and no spoons. Yes, another flare of fibromyalgia. Actually, I am pretty sure my body is permanently flaring, it's just a bad day. Another one.

Everything within me says that I should stay in bed, but today is our grandson's birthday and a BBQ has been organised. I simply have to go.

So far, I have showered, dressed and breakfasted. The shower almost killed me this morning. The water felt like thousands of needles pricking my sensitive skin and it was a real effort to raise my arms to wash my hair.

I was so worn out by the end of my drying off that I had to lay down for a bit. Dressing came much later, as did taking our bloods and administering Chris's insulin injection.

We have to leave soon and we are fortunate in that our hosts live close by. A long drive today would be too off putting and we usually love going on long drives. But not today.

When we get home I will be doing a light dinner for us and that is all. It has to be. And I have to be content with that.

Fellow fibromites will know that when you have no spoons, even breathing is an effort. If it wasn't for making memories today, I would be content with posting this and going to bed. I just want to stay in bed!