My thermostat's broken!

 

Once I passed menopause, I thought I would be free of hot flushes and sweaty nights, waking up in a bed of sweat and feeling nauseous.

However, fate was not kind to me and as soon as I finished the menopause, I became ill with fibromyalgia.

To be honest, I am never at a normal temperature. On blood thinners for heart stents and antiphospholipid syndrome (or sticky blood), I feel the cold keenly and on any given day while everyone in my home wants to turn the heating off or down, I am there pleading my case for more heat.

Ten minutes after the heat is put up for my benefit, I have to turn it off again. I feel sick- I am sweaty and unwell.

About an hour before I go to bed, I turn my electric blanket on as I feel the cold so much. I sink into the warmth as it soothes my fibro muscle and spinal pain. A couple of hours later, I wake, sweaty, nauseous and out of sorts.

I strip the minkie blankets off but I feel cold so I put some back. Five minutes later, I am hot again and I stick one leg out of the blankets and fall sleep again.

This cycle of hot/cold repeats through the night. I am turning like a rotisserie chicken! Thanks to fibro, my thermostat's broken.

One leg out, one in!

So today we signed a new lease for another year at our little country cottage. We love it here and if one has to be in lockdown like we are, there is no better place for it. 

Because we have cold winters here, we have bought an electric portable heater with realistic flames like the one we have in our living room.  So as we still have cold days in October, I am hoping the heater comes soon. The cold is the only down side of living in this little cottage. 

With my fibromyalgia, I feel the cold especially and some days I feel like I can't warm up. Sometimes I go to bed with my electric blanket just to warm up.

Anyone who suffers from fibromyalgia know that our thermostat is broken. We act like someone who has a fever: we are hot, then cold, then hot again. It's a conundrum as well as a nuisance. Like so many symptoms of fibromyalgia, there's no real explanation as to why.

I used to think it was because I am on blood-thinners for my antiphospholipid syndrome and stents. That was until I joined a really helpful online group for fibromyalgia sufferers called Fibro Blogger Directory. 

There the other members shared about this and many other fibromyalgia symptoms and I quickly learned that I was not the only one with a broken thermostat who slept with one leg out and one in the covers.

 

Planning to live

 

As you know, I have had fibromyalgia for over 24 years. It never gets better, but by careful planning of my life, I find I can most times live a balanced life.

There are occasions in life that are unavoidable. Sometimes it is of a medical nature like the time I simply had to stir my stumps and get to hospital for my heart stents. It was literally a matter of life or death. No choices about postponing because of a flare- it just had to be done.

Sometimes it is something we have looked forward to and simply can't miss- like our 10am wedding in Melbourne 22 years ago. You may wake up like a train has hit you, but you have to go or life as you want to live it, would take a turn for the worse. As I said, there are occasions in life that are unavoidable. And sometimes, it's worth the anguish! 

Living with fibromyalgia is very tricky. One does not know how one will feel on any particular day, and often accepting an invitation to a social occasion or  keeping a medical appointment is always on a tentative basis. It depends largely on how intense one's pain is at the moment.

Planning to live with fibromyalgia is very necessary and as seen, it is not for the faint of heart. It is necessary to plan and plot moments in our life to allow certain events to unfold.

If I know I have a special event tomorrow, I will plan my menu for the next couple of days to include slow cooker or easy to prepare meals, or I will cook ahead if I have sufficient energy. Or do frozen TV dinners. Housework is set on the back burner for a few days, with me focusing mainly on just doing a load of washing if necessary- and even so, I will use the dryer to save spoons.

As we Fibromites know, after a day out, the next day or two (or three) can bring on a fibro flare and we will be trying to recover and will not be fit for much activity for those days. So we have to plan ahead to include rest.

If we take care to include days of rest after a day out, we should be able to incorporate days out when needed and in so doing, we will be able to feel that we are actually living and not simply enduring or existing.

Medical matters must be attended to look after our health and happy occasions must be attended in order to make memories. If we fail to plan to live, we will always feel that we are on the inside of the window looking out as life passes us by.

 So teach us to number our days, that we may apply our hearts unto wisdom.  Psalm 90:12

Still the mistress of our home!

Yesterday I came to the realisation that my fibromyalgia is not going to get any better. Nor is my diabetes, hole in the heart, back pain, angina, asthma or torn meniscus. 

My blood sugars are also high, but not as high as Chris's, but it is a warning to me as well. I certainly do not want to go through what Chris is going through with trying to get the right amount of insulin and the horrid symptoms he endures.

My hole in the heart means my right lung is not oxygenating properly and because I need a fourth stent which I have refused (another story), I have constant stable angina. And asthma on exertion.

My blood pressure is high as the pain from my back and torn meniscus in my knee is bad. Finally, with Chris being ill now, my depression is back. I hurt when he is hurting.

Like any Sacrificial Home Keeper, I am trying to keep my home clean and tidy and here I too am failing. I see no end to it...

I was talking to my twin sister yesterday and she said that it is possible to get a bit of subsidised home help through the Australian Government's Age Care plan. So I applied and am going to be assessed tomorrow. I am eligible, as I am now 67 and my husband is 70 in a few weeks and is unable to do housework with me.

I can do some housework if it is waist level: dishes, cooking, washing, dusting. But I cannot even sweep let alone vacuum or wash my floors, as my tendons and muscles scream for mercy with my fibromyalgia and my back joins in sympathy, followed by angina and asthma. So basically I need someone to clean my floors and to change our bed.

As a woman who has been a house keeper since 1969 and brought up five children, it really galls me that I have to admit that I cannot maintain my own home by myself anymore. 

So, I am throwing in the towel.... well, mostly. But I still will be doing meal planning, grocery shopping (online),  cooking, cleaning my kitchen including dishes, bill paying and budgeting, washing, ironing as needed, refilling prescriptions, social planning and gift buying, looking after Xena our cat, and most importantly, looking after Chris's and my health.

In saying I am throwing in the towel, I forgot how much I still will be doing. I guess I will still be the mistress of our home! 

You can't have one without the other!

Having to pace myself yesterday, I woke with some spoons which was just as well as we had to take our daughter to the Alfred Hospital in Melbourne. She is a survivor of APML leukaemia and she needed her six monthly blood tests in preparation for her visit with her haematologist next month.

As we had to be in Melbourne early, we had an early start from home. We virtually just had breakfast, dressed and ran out the door. So no lists or housework plans were made. That will have to be tomorrow.

The trip was 400kms all told and it was very tiring. For all of us. We all had a nana nap when we got home.  We got some fish and chips on the way home as we just wanted to eat and crash.

In this picture of the Alfred, you can see the room I was in when I had my 3 stents put in in 2007. It's the third level, last window on the right. Chris and I would watch the helicopters come in on the heliport just in front of the hospital. It is built over the road and leads directly to the Trauma Centre.

So, housework wise, it was a dud of a day, but we were able to help our daughter with her cancer journey, fulfilling our promise to her the day she was diagnosed. 

In chronic illness you sometimes have to push yourself to live the life you want. It isn't easy: in fact it takes a lot of determination and prayer.  Lots of both. I don't think you can have one without the other!