Tuesday 16 April 2024
A boring home life
Wednesday 10 April 2024
A permanent thing
Sunday 7 April 2024
It's gonna be a PJ's day.
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.
Wednesday 6 March 2024
It was good while it lasted!
Wednesday 21 February 2024
I am not lazy!
Usually by the end of the day, you will find me resting in my recliner rocker or in bed. Especially when I have a fibromyalgia flare or a bad day with breathing difficulties.
Apart from the usual taunts such as "but you don't look sick" and the need to validate my need for rest, I find that the latest taunt is "you are so lazy!"
But appearances can be deceiving. If I were truly lazy I wouldn't even be resting or pacing myself in order to do a household task or cook a meal. I wouldn't even be entertaining the thought of cleaning or cooking.
People presuming to know my situation are often getting it all wrong. And it used to hurt. But these days, I have decided to let it run off my back like water off a duck.
I no longer let those unkind remarks get to me... Chris and I know the truth and that's all that matters.
Like looking well when I feel like death warmed over, resting to enable a task to be done does not mean I am indolent or don't care about my husband or my home.
Taking care of myself in order to take care of others may appear selfish. But nothing can be further from the truth: I am not lazy!
Friday 16 February 2024
The power of a nana nap
Sunday 24 December 2023
It is what it is!
Saturday 25 November 2023
When the fog clears, tea's on the list.
Sunday 19 November 2023
Not falling off the vine
Since turning 70 last May, I have noticed a rapid decline in our health. Heart issues are worsening, pains are hurting, fibromyalgia is making spoons are scarce and my mood is darkening.
We both are enjoying the peace in our home that has been jealously guarded and nurtured. Quite simply, we cannot cope with other's dramas.So much so that we have become reclusive.
The days when we don't have to leave our home are cherished days. And even though we make a point to get dressed each morning, we are not adverse to having a couple of Pajama Days occasionally.
In short, we are wearing out. Physically, mentally and emotionally, we are spent. I can say that we aren't spiritually spent because we pray and worship a lot. It does help.
I have been posting a little spasmodically because of excessive fatigue, and I have decided that from tomorrow onward, I will post in a diary form recording bloods, blood pressure and so on. Plus anything else the LORD puts on my heart.
Today is Sunday and I have just done the least I can do to keep our home manageable. With the fatigue being bad and no spoons, I took a nana nap and it turned into a grandma nap. Three hours.
But I woke up and felt a bit better and managed to fold some clothes that had spent their new clean life in the laundry basket...
Anyway, I had a comforting thought which I will share: there's an old saying that the aged say... "I am so ripe that I am falling off the vine!" Not very comforting.
But the next thought was comforting- physically, yes I am- but spiritually, not so. Instead I am grafted into the Vine- Jesus and He sustains me and gets me through this painful path called life...
So, with His help, I am definitely not falling off the vine!
Saturday 18 November 2023
Hear me roar
Eventually you run out of dishes and knives and forks and of course, pots and pans. You work harder by having to scrub really dried on food. It's a drag.
So the other day I woke up and decided that this would be the day I washed all those dishes and cleaned my kitchen. With both my knees with meniscus tears, I doubted I would be able to accomplish this.
Anyway, in stints of about 15 minutes each, I managed to knock over the dishes and clean the kitchen. It was a novelty to see the benchtops clear of dishes and I pinched myself to make sure I was seeing the empty draining board and not imagining it.
Life has been tough lately with torn knees, sciatica and fibromyalgia flaring. I haven't been able to stand much and my muscle pain has been horrible. But I did it!
To 'normals' reading this, you probably will be thinking it's no big deal- it's doing the dishes. But to me it's like climbing a mountain or going on a 30 mile hike. That's how my body reacts.
To my Sacrificial Home Keeping Sisters, you will be rejoicing with me because you know how even a seemingly small task can feel like a marathon.
It was a marathon and I won! you can't believe how extremely proud of myself I am feeling right now. And relieved. It's nice to prepare a meal in a well organised and clean kitchen.
I am savouring the moment and don't care if you are laughing at me! I can do anything!
I am woman-hear me roar!
Wednesday 15 November 2023
We need to share the load
Monday 23 October 2023
Ordinary is good!
Thursday 28 September 2023
When the spoons are gone forever
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.
Wednesday 26 July 2023
That to me is true love
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.
Sunday 18 June 2023
The only positive thing for spoonies
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.