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

Smelling the roses!

 

The last few weeks have been full of drama and it has seen my body collapsing with the mother of all fibromyalgia flares and a (non Covid) viral infection. Most things have been resolved and I have my peace back again. 

I have taken back control of my house in which I had fallen down during my illness, and I have had help from a cleaner from my aged care package. 

A lot of our Corona limits have been lifted and I have been able to see my family. That has helped. More things will be lifted next Sunday and it looks hopeful that we will be able to see family at Christmas.

Chris is recovering well from his surgery and no longer needs special dressing of his wound. In fact, a bandaid suffices now. I am so cheered that he is well. I hate it when he is unwell. 

The days are getting hotter with tomorrow set to be 33deg C but I am not concerned since we aren't going outside and we have air conditioners now.

We saw the doctor today for routine blood results and my blood pressure check as it was high last week. With giving my situation to the LORD and regaining my peace, it was 134/80 and the doctor was very pleased.

We have found a couple of Christian networks to watch wholesome movies and they have been very uplifting. One is New Faith Network for which I pay about $8AUD a month and the other is free for 14 days then $8AUD a month-  ACCTV.net from Australia. 

Chris and I sit of an evening and watch TV together and it all helps to bring stress levels down as well as blood pressure.

We are enjoying our back garden with a return of the prolific bird life that is so colourful. They have returned from their migration north to beat the winter and they are a joy to watch as they come down for the seed and food we leave for them.

Life can be so difficult, but can also be so wonderful: a great deal of the wonder of it all is to take time in smelling the roses! 

Life's looking up!

 

I am a very happy girl today. Our landlords have just put a reverse cycle air conditioner in our bedroom. It is just in time for the summer which officially starts on the 1st December.

It is very difficult to sleep in the front room in summer as it becomes a sauna. With fibromyalgia and a hole in the heart which stops oxygenation of the right lung, the heat just literally takes my breath away.

With a few hot days under our belt already, the timing has been perfect.

I am very happy that we will be able to sleep even during the hottest night. The air blowing on our faces makes it easier to take a deep breath and even on cooler nights, you will find me with a small fan to get that air.

With restrictions being lifted that will allow us to travel this Christmas, I can say that life's looking up! 

Making holiday plans

 

After nine months of lockdown here in Victoria, at last some restrictions have been lifted, paving the way for families to get to together for Christmas and New Year.

Gone are the endless days of watching movies and becoming totally indolent because of boredom and depression. We can now make plans for the holidays.

It was horrid being in a state of limbo due to the Government's tight rein on us travelling because of Covid 19. We didn't know what would be happening this year, but hopefully now we will be able to reconnect with family.

It will be good to travel without being pulled over by the police or defence officers. Shopping for food and presents will be fun, even though we still will have to wear a mask and practise social distancing.

This doesn't really worry me as I do all my gift buying and food online, due to fibromyalgia and heart problems. But it will be great to know that we can actually visit our family instead of posting presents. 

My aged care home help lady has been coming and it is such a relief. I have the place tidy for her and she said our place is fine. Apparently some people won't do anything in their house at all.

I have had Chris receiving hospital in the home care daily and last Friday he was discharged because the wound has granulated sufficiently that it doesn't need packing anymore.

We are experiencing quite changeable weather and my fibromyalgia is off the charts. Along with the chronic fatigue a flare brings.

I am looking for Christmas gifts online and am planning my Christmas dinner menu. We are so glad that at last there is a lessening of active Covid cases here in Victoria and it looks like Christmas will be a time to enjoy with family. 

I am rejoicing and feel alive again, now that I will see my grandchildren and other family and I will take great pleasure in making holiday plans.

Spoons aren't transferable

 

So this morning I needed a shower as I have an important appointment later on in the day. With lockdown and being home most of the time, I have been fairly relaxed about it, but not today.

I did our bloods, gave Chris his insulin injection, ate breakfast and ran the shower. It was heaven on my aching muscles and I let the water run on my sore neck and back. I washed my hair and body and then started to feel weak.

Out of spoons, I sat on the side of the bath trying to catch my breath and get my second wind. It didn't come. 

By the time I had finally got dried and dressed, I was literally shaking and sick with fatigue.

Looking at the clock, I realised that in a few hours I will be leaving the house and walking around. Which normals think as normal, but us sufferers of fibromyalgia and other chronic illnesses know, we have to balance everything in the spoon equation. Once spent, they're gone! 

Sitting down to rest and trying to garner some spoons of energy, I realised once again that I simply cannot shower on days I have to go out to an appointment that simply cannot be postponed. 

You would think after 20 years of fibro that I would have learned that spoons aren't transferable.

The only perk of growing old.

 

Last Tuesday there was a knock at the door. We weren't expecing anyone, but were delighted to see a lady employed by the aged care. She was reporting for duty.

Seeing that I hadn't heard anything about a new cleaner since I dismissed the last cleaner, it was a very welcome surprise. 

She stayed for two hours and did a really good job.

Having a clean house lifted my spirits considerably. She will be coming weekly until December, then fortnightly.

I am so grateful for her help and my Aged Care Package entitlement is the only perk of growing old.

I haven't bothered to do it.

 

These last few days since my last post have been difficult to say the least. With Spring here in Australia, the weather has been at its' most changeable. 

In Melbourne where we live, it is possible to experience all seasons in one day and the joke of the day is to wear a bikini under your raincoat. It plays havoc with Fibromites.

We Fibromites know that inclement or changing weather patterns causes a fibromyalgia flare and for me it has run true to form.

I have been unable to think clearly let alone blog, and the depression that has enveloped me in its' dreariness has made it impossible to rise above the constant background of muscle pain.

By the time I have made our bed and tidied our home in preparation for the nurse from Hospital in the Home to come to change Chris's post op dressing, I am in so much pain that I just want to crawl back into that newly made bed. Sometimes I do.

Still on lockdown with Covid 19, we only go to the chemist or face to face doctors appointments when a phone consultation isn't suitable. And the way I have been feeling, it is more than enough.

It is not uncommon for us to prepare ourselves for a few hours out of the home as if we were planning a vacation. When I say "prepare ourselves" I mean emotionally.

We have to give ourselves a pep talk and conjure up motivation and spoons to leave home. Physically, there's not much to do.

We may or may not shower, depending on how recently we have had one. We get dressed and we rest. Avid clock watchers, we usually leave our departure until the absolute last minute, so loathe are we to venture outside these days. By the time we are no longer in lockdown, I think I will be preferring to stay home.

Close to the hour to depart, I will usually check my hair has been combed and on a really, really good day, I will pull all stops out and put on some lipstick. With mandatory masks, no one is even going to see that these days, so lately I haven't bothered to do it.

Buying it by the bucket

I have a very red, itchy face because I suffer with psoriasis. My face flakes like dandruff and is very dry.

This Australian company manufactures organic, totally natural skin care products and I bought a trial pack.

I have applied it twice and it felt really soothing and nice. This morning I have no scabs where I would scratch my face overnight in my sleep.  

With Chris being in hospital and now home, and needing  me to drive him around for daily packing of his wound, I am totally out of spoons.

By the time we get ready, get seen to and drive home, my muscles are begging for mercy and I can't stay awake.

Until Chris is finished with daily dressings, I don't think this fibromyalgia flare will abate.

With fibro, one usually tries to rest to overcome a flare, but for the moment, I just have to push on.

At least with this calming face cream, an itchy face is one less problem I have to deal with. I am not being paid to advertise, but when one finds a great product, it is only fair that one shares it with one's friends.

I will be ordering the large size container soon- and if they make it in bucket size, I will buy a bucket of it and apply it with a paint roller! 

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.

 

Hit by a truck!

 

Things are pretty bad here in Victoria. We have been in lockdown for months now and in spite of low numbers of new cases and deaths mainly related to aged care facilities being hit with Covid, our Premier is in no hurry to ease the restrictions. 

I haven't seen my family for about 3 months now.  We are country so our restrictions are stage 3, they are suburban with more cases so they are on the stage 4.  The borders are patrolled by police.

Chris and I are staying home except to go to the chemist and for a drive when we are going stir crazy. We are allowed to go for a drive as long as we stay in our general municipality. 

People in Victoria are desperate. There won't be many businesses to reopen when he finally allows it. The Premier is giving a live broadcast soon... I hope it's a lessening of restrictions.

With my fibromyalgia flaring due to imclement weather, I am trying to keep my peace and have a quiet and undisturbed spirit.

I am wearing my Oodie with the hood up so as to keep my neck and shoulders warm. They are aching so badly that I can hardly turn my head.

Most times because of my fibro pain, I am happy to stay at home. Especially nice at the moment is our new mattress which is more plush than our older one which will go into the guest room. 

It helps with my muscle pain and anything that helps is just the ticket for when fibromyalgia makes even laying down a painful chore.

Today I am resting and doing just the essentials in our home. I will be cooking a vegetable intensive stew for dinner. Nothing that requires a lot of preparation.

I will be doing some bible study later on and just vegging in my Oodie. Not much on my to do list today, which is just as well when one feels like they have been hit by a truck!