We really like our new house

 

I pushed myself today to do some work and unpack. I know it's not the best thing I can do with a fibromyalgia flare, but I need to get my home organised. We are about two-thirds unpacked. 

But of course the cooking, cleaning, dishes and washing have to be kept up and I managed to get the kitchen cleaned and a load of washing done. 

My daughter Dianne came home from hospital after her knee replacement. She's doing really well, praise God. 

Chris isn't feeling too great so I have to wait for the heavier things to be unpacked. We really like our new house.

On a wing and a prayer

We have been busy looking for another home to rent. It's been a nightmare. There aren't many homes to rent and when we apply, we are vying with about 20 other people for the same home.

Most days we have to go to look at these houses and as we are in the country, it is at least an hour's drive each day. I am exhausted.

So much exhaustion is hard to take, especially when it brings on a fibromyalgia flare. But as in lots of things in life, it just has to be done.

I think the most stressful part is actually securing a property to move in to. The actual move is not so bad, and this time we will be paying my grandson to help us move.

With the fifth wheel and tow vehicle sold, we are in a position to get someone to do the move for us and it's especially important with our failing health to enlist help this time.

We are going to miss the birdlife here for sure, but with us being in our 70's, we have decided that we need to be closer to family and hospitals if we have an emergency.

This house is old and has no insulation and is incredibly cold and it's our winter now. With the price of electricity going up on July first, we won't be able to afford the heating in our all electric dwelling.

We are feeling the cold and are looking forward to ducted heating again.

Today there's no house viewings as it's Saturday. I have used the time to catch up on washing and I have two slow cookers going with different meals in them.

I am contemplating using Prednisolone for a few days so that my neck and jaw pain (TMJ) abates. I don't know if it will help my muscle pain in my shoulder and upper pain, but it can't hurt.

Today is the first day for awhile that I have been able to post as my muscles feel like they're tearing. But I just wanted to touch base and tell you what's happening in our part of the world at the moment.

Next week is another day of house hunting and tonight I feel like I am running on a wing and a prayer.

 

Or should I say, how little!

It's Wednesday morning here. I have cleaned my kitchen and taken meat out to thaw for dinner. I am going to cook pork chops with mashed potato and greens with gravy.

My sister's son came to visit her for Mother's Day. He brought some homemade scones with cream and jam for her and my nephew to enjoy. They share a house together.

During the visit, he shared that his own son is at home with Covid. Yesterday, he rings and says he's now positive too. With lupus, fibro and other diseases, and with my son with breathing problems, they are worried that they will catch it too. They aren't vaxxed. So far my son and my sister are OK but are getting some RAT's this afternoon. 

Chris is sleeping sitting up on the couch. He really needs to go back to the doctor as he's feeling like he's drowning in fluid. I have been encouraging him to go, but he's very stubborn. Consequently, he doesn't get much sleep and can't lie down. 

It's hard looking after him because of this fear of doctors and hospitals. It's not like he's a child and you just take them....

There's not much else planned for today. My fibromyalgia pain is bad. I'm so glad at this stage of my life that I can decide how much I will do each day. Or should I say, how little!  

It's alright for them!

Since Chris's discharge from the Emergency Department for heart failure, I have been suffering the Mother of all flares. My fibromyalgia has hit an all time high.

No doubt this has been from the stress and anxiety I have experienced since his diagnosis and the blase  doctors who laughed and joked when I asked what his prognosis was.

They made light of my anxieties and wouldn't even engage into any conversation about what exactly was happening to Chris's heart and why. 

I was thinking of making a complaint against them but Chris doesn't want me to.

Their blase attitude to Chris and I reminded me of trying to get my diagnosis of fibromyalgia. The doctors I saw all gaslighted my complaints of symptoms and the anxieties I felt.

It is wrong that they do this to their patients and their family. They should have a little respect- after all, it's not knowing what's going to happen that makes patients anxious, but they often are dismissive and arrogant.

And why not? because it's ok for them to be so nonchalant: it's not their life and marriage potentially going down the toilet. So it's alright for them! 

In for a bumpy ride

 

Life has its good and bad days. They say we all need some rain, but lately life has poured out a torrent of rain in the form of new health issues for Chris and I.

A diagnosis of severe cardiac issues for my husband and worsening arthritis that sees my hands now locking in two trigger fingers has given us both some new challenges.

Unable to drive at the moment, I will have to be chauffeur to Chris and take him to his many tests and doctors appointments mapped out for us.

I don't particularly drive well  because of pain issues with my back, knee and now my thumb won't bend and I am afraid that I won't be able to hold the steering wheel properly. And all the more challenging is that my trigger fingers and thumb are on my right hand.

I have been stocking up on grocery shopping and keeping up with prescriptions that we need in order to not have to leave the house much. It will be enough for us both that we need to get to hospitals and the doctor and chemist weekly.

In my old age I find I cannot take stress as well as I used to and this has created the Mother of all Flares in my fibromyalgia. I truly am afraid for my husband.  But I must stay strong for him and he will never know how anxious I am.

My hope is that his appointments and tests are evenly spaced out because after a day of driving, my muscles rebel and my spoons are gone and I am done in. I simply must pace myself, but medical matters can't be organised like a new haircut or a dental visit.

For those of you who are believers, I would be grateful for prayer for strength and driving ability. Especially seeing as it is really going to rain and we are both in for a bumpy ride.

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

Endone envy!

These last few days and the next few have been extremely busy. Chris has been unwell and is awaiting surgery for a hernia/abcess as we speak. Also, my twin sister is also in hospital with heart problems again.

I don't usually drive, but these last few days I have had to. Driving sure has exacerbated my fibromyalgia pain. But it simply had to be done.

Yesterday, I drove Chris to the ER and then I drove myself home. This morning when I woke I could hardly raise my arms. 

Needing to go the hospital again this afternoon, I had to take a nap because I knew I wouldn't have sufficient spoons to make it there and back if I didn't.

It has been a hot day today. The first majorly hot day in our spring weather. There's more of the same. By the time I got my walker out of the car, then walked the miles of corridors to Chris's room, I was exhausted.

When I got home, I had a cuppa and some paracetamol. I will be having an early night tonight as tomorrow I will be visiting Chris again. 

I think stress exacerbates fibromyalgia symptoms as well. I feel torn about not visiting my twin and staying by Chris's side. Obviously, I can't physically be two places at once, but in my thoughts and heart, I am. 

I wasn't allowed to stay long with Chris due to Covid 19 restrictions, but the only thing that saved my emotions today was seeing the Endone had made him sleep. Seeing him without pain made it easier to leave him.

The kettle is on and my evening meds have been taken. I will ring both the hospitals and check on the patients before I go to bed. 

Fibromyalgia is consuming most of my thoughts right now, and for the first time in my life, I am actually envious of the wonderous soothing effects of Chris's Endone.

 

Basking in a new world

Over the years, I have spent many a time in a hospital bed.  For weeks at a time, I would lie in traction with Scheurmann's Disease, with hardly a visitor to see me.

I recall every time my mother came in to see me, she would ask if my (then) husband had been in. The answer was no. In fact, he would drop me off at the hospital entrance and then take off speedily. I would only see him again when I got home.

It got so bad that I would never let him know that I was trying to pass a kidney stone or needed another bout of traction until the moment I had to be admitted for treatment. Then all hell would break loose. It was just a sad state of life wherein I wasn't noticed or wanted until a meal had to be cooked or a shirt ironed.

Of course, I would lay internalising why he wouldn't visit me, and the end result was captured in one solitary, heart breaking and mind numbing word: rejection.

In between hospital stays, I limped along life, serving my husband and family, yet feeling terribly alone and miserable.

In the course of time I left my abusive husband and married Chris 4 years after leaving. All came crashing around my ears when I got fibromyalgia. 

I came home from seeing my rheumatologist for my wide range chronic pain and fatigue, and along with a negative result for lupus, came the diagnosis of fibromyalgia.  The trip home seemed unbearably long as I rehearsed in my mind the scene of rejection again awaiting me with this latest news.

You can imagine my amazement when Chris made me a cup of tea as he listened to the diagnosis. He was the epitome of compassion and love. When he handed me my cup, he was astonished to see me burst into tears: not tears of pain like before, but tears of love, happiness and relief!

Holding me against himself, he said he was so relieved I didn't have lupus, and vowed to help me in any way he could with this new thing called fibromyalgia. 

He was true to his word and together we learned about this new enemy that threatened to destroy my happiness. We vowed to never give it the power over us to come between us.

Twenty two years later, we speak in terms of spoons and nana naps and Lists. Pacing and paracetamol and heat pads are our love language.  

As for the young woman watching out for her husband from behind the curtain: she has gone now, to be replaced by an older happier woman basking in a new world of love and that vital word for all fibromites: validation. 

Help in a hurry

So we needed an ambulance Monday morning. Within 20 minutes not one, but two ambulances were at our house, tending to Chris. They were wonderful and stabilised him and got us to our local hospital in about 20 minutes..

This is something that was important to us as older people with many health issues. Living in the country, we weren't quite sure how long help would be if we needed it. We were very impressed and comforted.

The last few days have been difficult with looking after Chris as he becomes accustomed to injecting Insulin, and trying to overcome my resulting flare of fibromyalgia.

It was inevitable with having to drive to the hospital for a couple of days and not being able to sleep well... 

As a result I was so overcome with fatigue and muscle pain that my dear daughter-in-law pulled on some gloves and washed my dishes for me while her husband visited Chris. I am most grateful to her.

I have ordered my groceries online and am expecting them in a few hours. I think I have just enough spoons left to drag them in and put them away. So most likely I will serve a frozen dinner for tea tonight. I am so tired today that even breathing is too hard.

Anyway, I am pleased with country living in emergencies, even if the hospital care leaves a lot to be desired.... as I posted about here.  But at least we now know that it's only 20 minutes away if we need help in a hurry.

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!