Just living is a physical ordeal.

 

Lately I have been finding it difficult to be joyful. My fibromyalgia doesn't get better, my knees are paining me, my angina's worse and I have had bouts of asthma.

Sitting for long periods hurts my back, and my eyes and face and general skin is dry, but I need to keep the house warm as the cold winter temperatures aggravate everything.

I have tried returning to a more realistic sleeping schedule, but I find even if I go to bed at a reasonable hour, I still wake up a couple of hours later. Then I can't get back to sleep for another 4 or so hours. 

I am tired, people. Tired of all this pain. Trying to keep it all together. Trying to live a "normal" life. I mean taking a shower without assistance or cooking a meal from scratch or hanging out some washing should all be within the bounds of normality for a homemaker. Not so for me.

I wear tiredness like a heavy saggy wet cloak, and I never wake up refreshed. My circadian rhythm is all out of whack and I can't restore it. Through no choice of my own, I have become a night owl.

With Chris being ill with his heart failure, he doesn't sleep well either and sleeps sitting up. He starts off in bed, but graduates to his recliner armchair.

The fluid in his lungs makes him feel like he is drowning, so that necessitates sitting up to sleep. It. is. what. it. is... But I watch him struggling for breath and I feel that I am losing him by degrees...

I have thought about trying to be upbeat and falsely present myself as someone who is coping with all this, but if I did it would be a lie.

So apart from a nana nap later, I am planning to spend some time in prayer and worship. Hopefully, that will give me the strength to emotionally and spiritually rise above the physical ordeal just living creates.

It's a good thing, fibro or not!

 

Chris and I have both had glandular fever which lasted for months. He is being checked for fibromyalgia as he has every indication that he has, even though it is mainly a female disease, it can effect men. Here is an article written by a doctor about that link....

Epstein Barr, the virus responsible for glandular fever or mononucleosis, has been linked to the development of fibromyalgia – a chronic, painful condition of the muscles and connective tissue.

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 are already both on fluid tablets due to heart failure. But apart from that, we are going to implement some diets changes and other suggestions.

With us both suffering similar pain issues, it is easier to understand each other and offer love and support. Which is a good thing, fibro or not! 

What you see is what you get

 

If I had the opportunity to be Mum to as many dogs and cats as this lady here, I would be a very happy woman.

Dogs and cats have been wonderful companions to me throughout my life and I am hopeful that I will see them again in glory. They have been my friends when I felt all alone and they have also ministered to me when I have been ill or depressed.

They are so loving and non judgmental and I often feel we could learn a lot from them.

Not for the first time, I have thought that I like animals better than people at times. 

Animals are just animals. No pretence, no ulterior motives, what you see is what you get. I just look at this picture and I feel happy. 

Today is pancake day!

 

So today I wanted to make some pancakes for Chris's breakfast. I went to my pantry confident that I had a few packets of plain flour there, waiting to be used.

Sure enough, I not only had plain flour, but self raising flour and cornflour. I always keep a spare of everything in my fridge and pantry. Just in case there's a shortage or I don't have money any pay period.

I measured the plain flour and noticed it was a little dark. So I tasted it. Bitter. So I checked the use by date. Best before July 2021. 

Flabbergasted, I checked the other flours and they all were out of date- by two years!

When covid was at its height, I remember buying extra flour and sugar so that I could at least bake something tasty when we were staying home... 

Feeling a bit guilty that I havent baked for a couple of years, I recalled that my fibromyalgia had been bad all that time, and I toasted a couple of crumpets for Chris and promised to add flour to the shopping list for next week.

He was so longing for pancakes but settled for the crumpets and tea. 

Pancakes weren't meant to be today: but next week I am sure Chris will say, "Make me some pancakes for today is pancake day!"

There'll be no divorce

 

If housework and you were married, there'd be no divorce... it would be a co-dependency relationship though.

You need a clean environment and housework needs to be done! 

The only way I could see a divorce would be if the fictitious fairy godmother were real, and cleaned for us and therefore the codependency would be over.

Housework is something that is never noticed until you don't do it, and it becomes a personal embarrassment when your lack of intimacy with it is noticed... so the desire for constant attention that housework demands is given ones full compliance in order to not be embarrassed... codependency at its best! 

Such is the grip housework has on even us chronically ill fibromites, we will appease it way beyond our comfort zone or we will pay someone to clean for us.

As long as there is a dwelling to clean, housework will partner with us and will turn up on the winning side every time. 

There's nothing like dirty house to bring out our guilt and unhappiness and the heartless housework will  unmercifully multiply its untidiness inducing a desperate response from it. After all, it doesnt care how or who does it... as long as its top dog. 

Fit or not, young or old, you do unwittingly partner with housework the minute you get a dwelling to clean... And the partnership will continue until you no longer dwell there...There'll be no divorce! 

We are so grateful!

 

We are so happy to be celebrating our silver anniversary today.

It's been the best 25 years of our life and we are very grateful that the LORD arranged our chance meeting with a very happy ending..

I need him awake and aware

 

I was a bath a day girl all my life. It just was so nice to soak and think of pleasant things as the warm water soaked away the aches and pains of the day. This was great until my knees packed up and I couldn't get out of the bath.

So obviously the next thing to do was to become a shower girl, and that worked for a while until fibromyalgia took over my life and sucked my spoons dry. I simply had no energy after a shower but that wasn't the worst of it.

No, the worst of taking a shower for me has now included panic attacks whilst in the cubicle. I am so unsure of my knees being able to hold me up that I hyperventilate. Not good when you have limited oxygen in the first place thanks to a hole in the heart and asthma.

I have tried all the hacks for taking a shower safely and peacefully: I have a shower seat, I turn the exhaust fan on so that the steam isn't too bad, I do not have the water too hot. But it doesn't really help much. 

Once the adrenaline takes over and my breath is cut short, the angina kicks in and my heart pounds like a sledge hammer. So I try to not have water running over my face as this sets the panic mode off.

I have managed to shampoo my hair with my back and face away from the stream of water and I have a very quick wash routine so to ensure my ordeal has been successful as well as quick.

In the old days, Chris used to help me shower, but alas, with his heart failure and chronic fatigue, he has enough trouble showering himself and I don't want him exerting himself on my account.

I have got a shower down to a reasonable time and I can be in and out in 10 minutes- out as in dry, powdered and in my PJ's. All I have to do is dry and brush my hair.

Because my spoons fail me really quickly, I brush my teeth before the shower and have my ablutions at night. I can just stagger to bed if need be. And sometimes it is needed- a shower in the daytime can knock the wind out of my sails for the entire day at times.

I admit it galls me that all my little pleasures like bathing and showering make me feel like I have run a a marathon, but it is what it is. What was a routine like breathing every day is now planned with precision around Chris's sleeping pattern. I need him awake and aware in case I fall. 

The only positive thing for spoonies

 

I was talking to my daughter this morning. She also has fibromyalgia. She asked me what plans I had for today and I told her I was planning to take a shower.

We laughed at how ridiculous that sounded and then we realised that once again, it's all about spoons and being organised.

Given the nature of fibromyalgia, one can never plan anything until we wake up each day, and then it is entirely dependent on pain and energy issues. 

We can never be spontaneous, but have to weigh up the need or desire to do something against the reality- having enough spoons to see us through the day.

If one thinks there just may be enough spoons to go somewhere or do something, we then go in to planning mode. We may cook dinner in the slow cooker instead of preparing something at the end of the day.

Perhaps we will go to a doctors' appointment and must organise our day with the idea that dinner is taken care of via the slow cooker and the bed will be inviting and will be calling us as soon as we get home.

We become experts at planning our lives as we go, and despite fibro brain fog, we usually can think on our feet as to what would be possible on any given day. Today I am making a slow cooker stew for dinner and saving my spoons for that shower. 

I really hate being ill, and I can't think of any positives about fibromyalgia and other trials we spoonie friends have to endure. But the one (the only) thing I can think of for us is that chronic illness has made us masters of organisation and planning. 

You better go check yours out!

 

So as you know I have been having problems staying awake. Even after 8 hours of sleep, I battle keeping my eyes open during the day.

This has had me perplexed and I have blamed my fibromyalgia, which still may be a part of what I have been struggling with, but certainly not all.

Going through my refrigerator last week, I sorted through the side top shelf on the door where I keep Chris's insulin injections and my thyroxin. Checking the dates, I was shocked to see that my thyroxin was out of date by two months!

I quickly discarded them and put a new week of indate tablets in my pill container for the week. No wonder I have had peeling skin off my face, hair loss and fatigue...

It's been 6 days so far with little change, but I would expect the synthetic thyroid hormone to build up in my system soon... I am hoping I don't have to wait long.

I am so switched on with medications and foods and so on that have a limited shelf life, but this time, it fell through the cracks...

Considering I have been battling a long term fibromyalgia flare for about 10 months... yes nearly 11 months since moving here, I guess I have to cut myself some slack. Nevertheless, when I discovered the out of date meds, I did tell myself  that I am an old sausage! And I am!  You better go check yours out! 

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.