Hanging on by a thread revisited
For me, it's spoons!
It's Sunday morning here. I have brought in the online groceries and checked them off and put them away.
I will soon be taking Chris's bloods and doing breakfast. Breakfast will be eggs and bacon and a cup of tea. Lunch will be ham and salad sandwiches. For dinner, I am doing a vegetable intensive beef stew. Fresh fruit for desert.
There's a hamper of clean clothes to fold and then I will be up to date with washing. Later I plan to make some coleslaw, if spoons permit.
That's about it for today, except for cooking dinner. I don't want to put myself into another fibromyalgia flare or I won't have spoons to help my daughter tomorrow. As I always say: most jugglers juggle balls, for me it's spoons!
A big part of my life
It's 11.30 Saturday morning here and already we have been to have blood tests, come back and had breakfast and I have done a load of washing, folded clothes and stacked the dishwasher.
They weren't able to get blood from me today so I have to come back Monday. This in spite of drinking water beforehand.
Chris is sleeping and I am thinking of having a nana nap as I have no spoons left. So tonight I will be cooking pork chops with mashed potato and salad. I may serve a fruit salad for dessert.
The fibromyalgia is flaring and I am aching all over. I haven't recovered from the move yet. In spite of knowing I could/should do some more around the house, I know that I need to rest or tomorrow will be a repeat of today. Pacing and resting are now a big part of my life since fibro.
I think I could sleep on the freeway.
I am too tired to shout!
Today is Monday morning. I have to do some washing and restack the dishwasher. I have run Sadie the Roomba and am about to do bloods, meds and breakfast.
Later on at 11 a man is coming to do some flatpacks of furniture for us. I am hopeless at this and Chris can't do it anymore. It's a coffee table and TV lowline unit. It's $40 an hour but we had to factor that in when we bought them. It is what it is!
At 2.30 we have to pick Dianne up and take her to a doctor's appointment. Then I have to go to the chemist and get her meds made up.
It's supposed to rain for the next 10 days and the rain has been consistently heavy and constant. I think we are going to need an ark soon. It is making my fibromyalgia worse, and I am pushing myself to get Di to doctors and physio.
I will neverthless be busy with doctors and physio for the rest of the week and possibly next two weeks or more. I am glad Di's knee has been done though. It's all over bar the shouting! With no spoons at all, I am too tired to shout!
You just got to pass it on!
I ran our new irobot roomba vacuum last night. Xena hated it and ran under the bed. Roomba chased her under it and she came out like a scalded cat and bushy tailed.
Don't worry, she got lots of cuddles afterwards, but it was the funniest thing that's happened in a long time.
I highly recommend a roomba. It's very easy to operate and manages interchanging between carpets and tiled floors. It's really great when you have cats or dogs as it gets the fur vacuumed up easily.
Last night ours kept bumping into things as my phone is too old to download the app to schedule and program it. It still did a great job. I am keen to see how much better it does when I update my phone.
We are just staying home this weekend as there's going to be a few days of physios and doctors for Dianne next week. Being oldies, we are bushed! But ya gotta do what ya gotta do! Fibro flare or not!
I am not getting paid for advertising roomba but when you find something that helps with fibromyalgia and other chronic illnesses, you just have to pass it on!
A nasty dictator
Yesterday was a very busy day and I am feeling the after effects now. My fibromyalgia is flaring and the pain is incredible.
Dianne my daughter was not able to get the staples out from her total knee replacement because the doctors and nurse said a week out of surgery is too early to remove them- especially on a bending joint. We had to reschedule to next Thursday.
Then I was not allowed to accompany her into physio because I am not vaxxed against covid. So I helped her return her hired crutches-(she has her own) and left.
I accompanied her teen son into his counselling appointment, talked to the psychologist as he is a new patient, then left them to discuss things.
It was so much walking and in and out of cars that my own knees were quivering. Di's pain level was off the charts as it is difficult to get in and out of our car- it is high. She begged me to not undergo knee surgery myself. (I have both knees with torn ligaments) She didn't have to beg much. I don't like pain.
Today I am just resting and making a stew in my slow cooker. That's the best I can do today. Fibromyalgia is a wicked task master and a nasty dictator.
Stating your name and business
We love our new house
I can hardly wait!
Bother to lift us up and not tear us down
When I got fibromyalgia everyone told me it was in my head. I pushed myself physically to get through it but the emotional toll was so bad. Guilt. Failure. Self loathing. Exacerbation of it all. In the end it was all for nothing: fibromyalgia is real.
How one talks to a chronically ill person is important as often they can take those words and apply it to themself, even if that person really doesn't understand about their illness.
Quite often speaking erroneously and negatively can damage a person so much that they actually feel worse. Those words have the propensity to cause so much emotionally destructive thoughts that cripple a person worse than the disease or ailment they suffer does.
Unsolicited advice such as starting exercising, dieting, positive thinking, all sound great for most maladies, but alas, not so great for chronic illness such as heart failure, osteoporosis, spinal stenosis, lupus and fibromyalgia.
Taking this on board for the person already grieving for their lost health can lead a person straight to the Pit of Despair. And it achieves nothing.
A little kindness would go a long way to helping the chronically ill retain self respect and accept their illness quicker. But most times those who give advice are anything but kind, sounding judgmental and arrogant. Which just expounds on how truly unhelpful they really are- or try to be.
Being kind and gentle to those suffering is Christ's way- so if you think you have enough knowledge and love to impart some wisdom and instruction to a chronically ill person- do so gently and kindly.
God Himself knows we have enough to contend with already as we walk the sad and lonely path of illness. We need less words and more acts that impart sympathy and compassion.
Pray for us and comfort us and be one of the few who bother to lift us up and not tear us down.
More spoons to enjoy life.
Out of my comfort zone.
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.
On the move again!
We aren't just tired: we're dead tired
It's a pain in the neck
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!
It's a good thing, fibro or not!
Fibromyalgia sufferers are mainly female and report chronic widespread pain and a heightened and painful response to gentle touch. One of the most important criteria to determine whether or not you may have this disease is significant pain in very specific areas of your body, including:
* Inside of your elbows
* Your collar bones
* Inside of your knees
* Your hips
Usually these locations are symmetrical, so you’ll have pain equally present on both sides of your body. Experiencing significant pain when someone presses on those areas, on both sides, is indicative of this condition.
Other symptoms can include fatigue, sleep disturbance, anxiety, bowel and bladder problems, difficulty swallowing and joint stiffness.
Conventional medicine offers no cure for fibromyalgia, although there are treatments like medication, exercise and behavioral interventions that can reduce symptoms.
The natural approach to treating fibromyalgia is to re-balance the immune system which may have been damaged by the effects of the Epstein Barr virus. It is also vital to relieve symptoms through nutritional intervention, graded exercise, stress management and re-establishing good sleep patterns. Let’s have a look at some of these natural treatments for fibromyalgia:
The mineral magnesium is a natural muscle relaxant that is showing promising effects on the pain of this condition. It should be taken as a powder or capsule along with magnesium-rich foods like fish, avocado, raw nuts and seeds, soybeans, green leafy vegetables, brown rice, apples, apricots and grapefruit.
Malic acid is also often low in sufferers and should be supplemented. Malic acid is found naturally in fruits like apple. It often gives unripe fruit a tart or sour taste.
To help relieve the fatigue seen in fibro and Epstein Barr, vitamin C and the B complex are recommended. Anti-inflammatory foods like fish oil, zinc, ginger, turmeric, pineapple and paw paw can also help.
Restoration of normal sleep patterns is an essential part of the recovery process. Herbs like valerian, skull cap, hops and chamomile are excellent. Epsom salt baths which are naturally high in magnesium should also be taken nightly before bedtime. These baths reduce muscle pain and tension and help ensure a good night’s sleep. Gentle exercise during the day – either a walk, swim or stretching exercises can also help you sleep better at night.
Diet wise, I recommend my Epstein Barr, CFS and fibromyalgia patients follow a low carb, high protein diet based around good quality protein foods and plenty of fresh leafy greens and other vegetables. Sugar, grains and the nightshade family of foods like tomatoes, eggplant, chilli, potatoes and capsicum, should be eliminated as they can trigger pain and soreness in the fibromyalgia patient. Remember too to drink plenty of pure water – at least 2-3 litres a day...... author unknown
I have to add here that I could never drink 2-3 litres of water a day and current medical advice is that we only need about 6 glasses. Too much water intake can cause more problems and we have enough to deal with already.
We just have to embrace it
Our fiver got to South Australia to its new owner and they rang us to tell us how pleased they were with it. So that's good.
We are taking our GMC Sierra to the mechanic for a good overhaul Monday and then we will decide what we will do with it. Over here they are seen as a luxury ute and we think a young buck would love it. That's what we are hoping.
My twin and son and granddaughter continue to recover from Covid but are still very much under the weather with it.
I am convinced that our prayers have helped keep my twin. She's so many serious health issues such as lupus and I was afraid for her.
I have done a load of washing, cleaned my kitchen and am about to make some lunch. I have a flare of fibromyalgia again and my spoons are nearly all gone. I will be taking a nana nap soon.
With an imminent move, I am not looking forward to the energy output, however I am looking forward to being nearer family.
I will miss the birds and our feral cat who is gradually becoming less timid as we feed him. We have named him Teddy Bear as his face is surrounded by bushy fur and he is gingery brown and looks like a teddy.
But I know in life that one rarely gets everything one wants and so we have weighed up staying or moving. We have decided that we want to be closer to family, particularly our daughter who has had leukaemia.
With a bird bath/feeder and garden swing to take with us, we will continue to feed the birds as we watch from the swing in the garden.
It's true what they say: nothing is sure except death and taxes. Life is full of change. We just have to embrace it.