The old hag came a'calling

There's a very scary sleep condition called Sleep Paralysis. Basically the brain is trying to wake us up but the body can be paralysed. It's also known as the Old Hag Syndrome because one often is conscious of something malevolent in the room or at close range.

I have had this happen to me. I woke up to find I could only move my eyes. I couldn't move my legs or head. It felt like someone was in my room and I had the most awful feeling of dread. I fell asleep again to wake up in the morning with the feeling that it was a very vivid nightmare.  It is the scariest thing...

I try not to allow fear overcome me when I try to go to sleep. In case I bring on a nightmare, I always go to sleep focusing on something positive.  With falling sleep being  difficult enough with fibromyalgia, I practise relaxation techniques that I learnt to cope with panic attacks.

This experience I liken to a nightmare, only I was conscious enough to know I was awake and it was real.

I really detest this happening as I guard my sleep judiciously thanks to it being so scarce with my fibromyalgia pain. After dinner, I won't watch anything on TV that may make me anxious, nor do I eat anything so as not to cause a disturbed sleep due to my digestive system handling food.

Feta cheese gives me nightmares, so I only eat that during the day. In fact all cheeses give me nightmares, and on occasion they have triggered a migraine.

After dinner I change into my pyjamas- if I have bothered to get dressed that is. I wind down with some rounds of Candy Crush and then I join Chris for a snuggle in front of the TV.

But even then I have to be very selective about viewing what he's viewing. If it's not a "chick flick" or is violent or will make me think too much, I just take him in a nightly cup of tea or hot milk and finish off another few rounds of my game. 

It seems I do become fixated on getting a good night's sleep, and it is true: I do.  With all my medications, about an hour after taking them, I feel the need to head towards bed. And saying about the medications, I am on 24+ pills a day and if I don't sleep for 9 hours, I wake up feeling hung over.

Anyone who suffers from Fibromyalgia will know that a good night's sleep is crucial to coping with the daily pain and they will also guard their bedtime habits like I do.

I want to enjoy my sleep, and I don't ever want to have to tell you that once more, the Old Hag came a'calling...

Even pleasant times are draining

Yesterday we had Chris's daughter come for his birthday which was Saturday. She brought a cake and a gift- the top fitted perfectly, but the slippers were too tight for his swollen feet.

Tomorrow we will go and exchange them as I have the docket. We were going to Kmart as Chris was given a gift voucher from my daughter, but he is feeling tired today, so we will make it another day. 

Chronic illness dictates our lives now. Chris with his heart failure and me with my fibromyalgia. Spoons are dictators that seek to keep us immobile with no social outlets. 

These days, we are fortunate in that people come to us. Over the years, they have realised that often it is impossible for us to leave our home to visit them- especially if there is a time-table. One just never knows how many spoons will be available on any day-not until the morning at the earliest.

I only have basic house chores today as all the washing and dishes are caught up. So that will be all I have to worry about with no spoons available today.

It's funny how even pleasant times can drain one of spoons...

Above is a picture of Chris and our grandson Lachlan who also shared his birthday with Grandpa. 

We need an ark!

THURSDAY NIGHT: We are having unseasonable weather with flooding and high winds. Currently having our tenth power outage in 24 hours with large trees blown over lots of roads and in the parkland opposite our house we are out of our diabetic medicines and we can’t get to the chemist.

We have been advised to stay home for safety. I am so glad we are on a steep slope.

FRIDAY: We managed to get through to our closest chemist so we have our diabetic medicine again! We had dinner at Chris's son's as they had gas to cook with. They live near us! 

We have no heating whatsoever and it's winter and the weather is freezing. My fibromyalgia has come out to play! 

SATURDAY:  So pleased that the power came back on last night. 

SUNDAY AFTERNOON: We have just got the modem back on but the phones are still on SOS only. 

The waters came up very high so that the cows couldn't get any food from their pasture behind our back garden. A farmer asked us if he could go through our back garden to leave some hay bales for them. Of course we said yes and he managed to place some in the small island of land in the middle of the flood waters. 

I don't need food or medicine so it doesn't matter that we can't get out for the moment. 

The farmer who came through to feed his cows was very nice and he said he's lived here all his life and has never seen the weather and floods as bad as this one. The weather bureau said the waters should recede soon.

This is the view today from our back porch. The hay was delivered to the island strip of land because through habit that's where the cows were plodding looking for feed. The farmer's house is in the background.

My focus for today is to wash all the dishes and do some washing... I will be cooking lamb stew for tonight. 

More rain is forecast for the next few days with more flooding. If it gets any worse, we are going to need an ark! 

Enjoying some morning sunshine

 

Chris and I are not getting enough Vitamin D so we took the opportunity yesterday to sit on our garden swing together and catch some rays.

Xena found some meat I had left out for our magpies and kingfishers and you can see her in the start of the video. 

We just listened to the silence punctuated with some birds calling and we just luxuriated in the warm rays.

Just beyond our fence is a stream running through the back of our property with some paddocks rolling out along the stream edge. The cows come to graze a couple of times a day, moving right along all the paddocks, grazing as they go.

With winter on us now, we try to get outside and get some sun and it is really nice to feels the rays on our skin but I have to be careful as it's very easy to fall asleep. It wouldn't be very restful to fall onto the scoria under the swing.

It's nice to focus on pretty birds, cats and cows and get away from the news and I only really listen to it once a day. I need to know about lockdowns rules and so on. After I find out, I switch it off.  

We have been on lockdown again last week and metropolitan Melbourne has had it extended for another week. It has been lifted a bit for us as we are regional. But we can't travel far.

My fibro and polymyalgia are flaring and I find myself longing to go to bed, but I try to resist going back. I prefer sitting on the swing holding Chris's hand and enjoying some morning sunshine.

Kudos to us all!

kudos

/ˈkjuːdɒs/

Learn to pronounce

noun

1. praise and honour received for an achievement.

   "she was looking for kudos rather than profit"

   Similar:

   prestige

   cachet

   glory

   honour

   status

   standing

   distinction

   prestigiousness

   fame

   celebrity

   reputation

   repute

   renown

   notability

   admiration

   respect

   esteem

   acclaim

   acclamation

   applause

   praise

   credit

   approbation

   tribute

   Opposite:

   obscurity

   infamy

   • INFORMAL•NORTH AMERICAN

     compliments or congratulations.

     plural noun: kudos

     "kudos to everyone who put the event together"
   • 
     

   Anyone who manages a home whilst battling chronic pain, illness and disability will know that there is a sacrificial element: we are the most selfless and courageous of women. We Sacrificial HomeKeepers sacrifice our comfort and exert ourselves beyond limit for those we love.

   
   

   As a chronically ill woman, I can identify with women who are sacrificing themselves in trying to maintain normality in their home and family. I believe I am well qualified to write about chronic illness as I suffer from a myriad of health problems ranging from life-threatening to simply annoying.
   
   These posts are written as a diary of thoughts and articles through my days as a sufferer of chronic pain and illness. If you share that journey, please feel free to read this and perhaps comment, for illness can be a very lonely and isolating experience

I know that many of us would cling to our beds or couch and wouldn't do a thing if we weren't so loving. I know that a lot of us work in our dressing gown, such is our devotion. 

We are just amazing and I love every one of you Sacrificial Home Keepers for it. Kudos to us all! 

It's the only silver lining

 

So there's been 26 new cases of Covid19 in Victoria, and the government has called for a lockdown of our entire state again.

It's a bit of a drag because we are trying to sell our fifth wheeler and family members are trying to move. With only essential workers allowed to leave the house, it will be all put on the back burner until at least next Thursday.

As Chris is unwell and I am suffering from polymyalgia rheumatica and fibromyalgia flares at the same time, it will not be too inconvenient for us to stay put.

I have been weaned off Prednisolone and after just a few days, I wish I could go back on it. Panadol slow release tablets don't do much to relieve the  pain and my fingers and hands are seizing up again. How I wish they could find something that is as effective in pain relief.

So today I only will be cooking dinner, doing a load of washing and later taking a shower. I am so low on spoons that to me it's a marathon.

With this being our autumn in Australia, I am finding the inclement and changing weather effects my fibro really badly.  So in not being allowed to go anywhere this week gives me a welcome break from having to push myself to get dressed and go out.

I guess it's the only silvcr lining. 

Our winter wonderland

Yesterday my step-son and his wife came and detailed the fifth wheeler and tow vehicle. Today they are coming to take pictures and we are going to advertise it on RV magazines. Prayers that it sell quickly. 

We must get a newer car as ours is on its last gasp and is not fixable. Being in the country with our nearest supermarket and chemist a half hours' drive away, a car is essential. 

It's Saturday morning here and I only have some dishes to wash and cooking for dinner to do. Which is great as I am nearly out of spoons already. Once again, my fibromyalgia is  taking my body hostage. Just after I thought my flare was over.

I woke up at 5am feeling cold so I had to boot up the electric blanket again. Chris did the same with his. We woke up to a winter wonderland. Even the bird bath was frozen solid. 1deg C which is cold for us Aussies. We are still in autumn and winter officially starts 1 June, but it is just preparing us for a cold wet one I think.

You have to flex with fibro

 All of us who suffer with fibromyalgia know that it's a very unpredictable illness. We just can't plan with it as we don't know how we will feel until we wake up- and even then it's unpredictable.

We can start our day with extreme stiffness and pain, yet can come better by mid morning some days. It makes planning our day difficult to say the least.

I can't count the number of times I have had to apologise to someone for not being able to socialise or go shopping. I felt well at the time of arranging or accepting the invite, but fibro had other plans and held my body hostage.

Countless times I have planned to declutter my house or some other chore, and I have even gotten started only to find that my body was yelling at me, "Seriously??" and I had to stop. 

It is very challenging and even depressing. But it is what it is. Fibromyalgia is a pain in so many ways!

Lately, I have learned to say to people that I would love to come/do something but because of my fibromyalgia, I won't really know until the day how I will feel. So I will say a tentative yes and hope to be there/see you! 

I have had to learn to not be dogmatic about when I will do a certain chore. For example, all my life as a homemaker, I have changed my sheets every Monday. But with the coming of chronic illness, I might not feel well enough to do it that day. I have just had to accept it.

Part of accepting our new normal as Fibromites is to not get too upset if our body fails us on any particular day. We have to remember that tomorrow is another day, and even then it may not support us the day after that. It is just that unpredictable.

I have learned the hard way too that it's no use getting into a funk or berating yourself if fibro calls the shots and shoots down your day. It's not the end of the world, and you just have to flex with fibro...