Tuesday 16 April 2024
A boring home life
Wednesday 10 April 2024
A permanent thing
Friday 15 March 2024
Sitting down brings no comfort
Over the years of chronic illness, I have noticed that what used to be a reward for spending spoons and being proactive was in having a comfortable place to sit.
Gradually the places that once gave me a comfortable sitting have become objects of pain. My armchair, couch or sofa, typist chair, dining chair and car seats have all become places of torture and there's no reward or rest found in them.
Like wise, my bed also yields no comfort to my fibro effected muscles or my spinal pain.. it can't be the furniture's fault.
I think the fault lies in my allodynia which is pain on the lightest of touch. It is often a part of fibromyalgia and/or diabetes neuropathy. There is no cure.
I cannot take many tablets that are commonly prescribed for fibromyalgia, such as Lyrica so I have had to find something that helps with the pain.
With both peripheral neuropathy from diabetes and fibromyalgia, and with constant knee pain, I find the only time I can completely relax is when I am lying on my couch and Chris is rubbing my swollen feet. The swelling is from heart failure.
The massage seems to distract the nerve path that interprets pain and replaces it with a pleasurable sensation, allowing me to often drift off to sleep.
I know it's sad that a foot rub is the only help for me at this stage of my life, but it is what it is. And it is good for me as sitting down brings no comfort.
Friday 16 February 2024
The power of a nana nap
Monday 1 January 2024
More than a place to sleep
Recently someone asked why do we make our bed? I gave it some thought as I have recently been making my own bed daily, in spite of regularly going back into it for a nana nap. Here's a few thoughts on why I use my precious spoons to make my bed.
Wednesday 15 November 2023
We need to share the load
Monday 23 October 2023
Ordinary is good!
Friday 11 August 2023
I can't believe it!
The last five days have been a dream come true! I have been sleeping better and I have woken up with spoons!
I have been very careful to keep pacing myself as I don't want to get a rebound flare due to burnout. So far, so good!
It's been about 22 years since I have felt this well. I am very grateful for the respite from pain.
So unusual is this new found energy that sees me operating as a "normal" person, that it feels "abnormal"
But today, I will enjoy this new energy and thank God for it. If it wasn't me I would want to know my secret- no secret.. but in any case, I can't believe it!
Tuesday 1 August 2023
Spoons are a distant memory.
Lately I have had a flare of my fibro flare. It's resulted in the most epic fatigue that it seems just breathing is an effort.
It's actually been going on for months. I keep referring to it as a flare, but today I realised it's a flare that never gives up. It's eternal- with no discernable beginnning and no end in sight.
I can sleep for 12 hours and still have no energy.
We eat good nutrional food. I cook everything from scratch, but the ennui and corporeal exhaustion still remain.
I often think if I just have this or another cup of that, it will help me regain some spoons, but unfortunately nothing seems to help. I never got my first wind, let alone catch my second!
My doctor is going to run some tests especially focussing on my thyroid and iron levels. I personally don't think it's that. My iron levels have been consistently high and my thyroid level is normal and has responded to my Thyroxine which I take for hypothyroidism. But I will do the tests anyway.
No, I think fibromyalgia is the culprit for my physical exhaustion. It seems now to be a way of life.
Spoons are a distant memory.
Saturday 15 July 2023
Just living is a physical ordeal.
Saturday 27 May 2023
Taking the pressure down
Whatever the worry of checking and medicating sugars and blood pressure is has been and gone..it is what it is.
As the sun goes down and the moon rises, there is the hope of a restful sleep and whatever chores were meant to be done are either completed or waiting for tomorrow.
We can rest and wind down, enjoying whatever simple pleasures we have left after the raviges of pain and illness. Whatever helps us unwind and take the pressure down is welcome and wanted..
The drapes are closed, the fire lit, the kettle has recently boiled and a tea tray awaits our attention..a final sip of our favourite beverage accompanied by quiet reflection and conversation.
One knows that the morning will bring its own anxieties that life struggling with chronic illness brings, but for the moment the hope of a restful night's sleep resides in our bosom... hope is what keeps us going.
As we lay at last in our bed awaiting sleep, we can reflect on those things that light the wick in our candle of hope. Those things that have given us comfort and peace throughout the preceding day..they are worth remembering...
Being thankful for the good things in our day helps us get a better sleep and is a way of taking the pressure down...
Monday 16 January 2023
More than just a place to sleep
Wednesday 24 August 2022
Bushed but satisfied.
Today we have no physio or doctor appointments so we can stay home. I am ploughing through 3 loads of washing and I have to clean my kitchen.
I am cooking a pork stew in the slow cooker. Chris is feeling unwell and is sleeping a lot. I would be if I could with my fibromyalgia flaring, but I am waiting for the cleaner to come.
I have finally found a cleaner who can fit both DD Dianne and my homes in for a clean once a fortnight. They are doing hers at 2pm and ours at 4pm today.
Although my Roomba is doing a great job, it needs someone to get into the corners it misses so I will ask the cleaner to do that. Basically it's my floors and bathrooms that need cleaning today with the beds changed starting next Wednesday week.
We only have Chris's "man cave" to sort out now- the rest is done and the place looks nice. We are totally bushed, but it a satisfying feeling to look around and see it all come together.
Friday 15 July 2022
Out of my comfort zone.
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.
Wednesday 11 May 2022
Or should I say, how little!
Monday 2 May 2022
"It is what it is!"
Friday 1 April 2022
And a good sleep
Friday 25 March 2022
The only nice thing about it
Saturday 5 March 2022
When you got no spoons everyone has to help!
No, I knew from 20 years experience that my respite from pain would be short-lived and it was. But because of planning for it, it hasn't seen me in a total mess, overwhelmed with meals and mess.
I had my handmaiden, aka dishwasher and I kept up with the dishes. I did a load of washing a day and I dried it in the dryer. But my greatest life saver was my frozen dinners I have in the freezer. They saved the day.
In all honesty, though I haven't kept the house running smoothly all by myself. I have had to enlist Chris to help me with stacking and unstacking the dishwasher and I asked him to put his own clean clothes away as soon as they came out of the dryer.
He has been really good actually- a blessing really. He also encourages me to take a nana nap, and feeling so fatigued and sore, I am so glad. We all need a hand when we are feeling so wretched and when you got no spoons everyone has to help!