Kudos to us all!

kudos

/ˈkjuːdɒs/

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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! 

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...

Hand over the Prednisolone!

I was too afraid to take the 5mg Prednisolone x 3 tablets the doctor gave me Monday for my polymyalgia rheumatica flareup and arthritic deformed hands...

He said to take it for a week and see how it goes, but I was so scared of the side effects that I wondered if I should avoid it. I know it will raise by blood sugars and I am diabetic. Also, I know it will raise my blood pressure. But still, the pain is rising so much that I really don't know what to do...

I have temple pain with the PMR and I am scared it may go into giant cell arteritis. I had them in my hand that morning, chickened out and put them back in the bottle....

I had a phone consult with my doctor later today and I discussed what was worrying me about taking Prednisolone. We discussed the risks and he asked me to try it till Monday when we both go to see him. My ESR was very high (50) so he is pretty sure it's PMR back again. So this morning I took them.

It's evening now and I am exhausted but feel a bit edgy so I am not in bed yet. I know this will sound untrue, but this arvo I have been able to move my thumb and bend my fingers for the first time in months! I hope it continues...

Twelve hours in, in the midst of this battle with pain, it seems like a miracle cure! I am a new fan. I am glad now that I weighed up the pros and cons as I weighed my burgeoning body.

Unable to hold a cake knife, I shouted to my husband, "Hand over the Prednisolone and no one gets hurt!” as I reached for another piece of comforting cake.

It is what it is!

Many of you will know that my husband, Chris is facing serious health issues. He has recently been diagnosed with heart failure.

With fluid on his lungs, he feels like he is suffocating when he lies down, and so he sleeps sitting up in the recliner.

The fluid tablets don't seem to be moving much fluid off his badly swollen legs and feet either. His feet are so swollen that no shoes will fit him.

I was able to buy him some orthopaedic slippers that come apart and are fastened around the feet, ensuring a comfortable fit. They are quite warm as well which is a bonus in our autumn chilly mornings here.

We have many cardiologist and doctor appointments and tests in the coming weeks and  it really effects my fibromyalgia badly. But we keep on keeping on because we don't have any choice.

After a day out for medical appointments, I am usually running on no spoons and that is when Chris looks after me.

He makes me a cup of tea and turns my electric blanket on. He encourages me to rest and chooses an easy slow cooker meal for dinner. I usually cook that on the day whilst we are out.

I allow Chris full reign of what he wants to eat as his appetite is not as good as before he got sick. So you will find us discussing menus the day before.

I do all organising for his appointments, ensure his medications are made up, sort them out for the week and drive him to said appointments if he doesn't feel up to it.

He in return guards my health and makes sure I get uninterrupted sleep as I don't sleep soundly due to fibromyalgia pain.

In line with this, we now share separate bedrooms. Our marriage is as strong and loving as ever, but due to illness we both have found we sleep better apart.

It wasn't what we really wanted, but it is just part of our own new normal. We still sit together watching TV and we hold hands all the time. But with health issues causing insomnia, it is the only way we both can help each other. It is what it is.

When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. Proverbs 3:24a

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! 

The only blessing about getting old

 

It's Tuesday morning here. I have our cleaning lady coming at ten. Before she gets here, I want to tidy the house and get a load of washing done. 

She usually vacuums and mops the floors and cleans the bathroom for me. As an aged pensioner, the government has certain home care packages for the aged and I have been approved for one. I do pay a fee for her services, but it is subsidised through the government Aged Care Plan. 

I consider myself blessed beyond measure. Those jobs are ones I can no longer do and as Chris is quite unwell himself, I don't even ask him to attempt to do them. 

Having home help is not a matter of being lazy- with fibromyalgia, heart and spinal issues and arthritis, there are a lot of tasks I just cannot do anymore. 

As I have written before, I am grateful for all my labour saving devices and the Home Package Care Plan I qualified for.

I think it's the only blessing about getting old...

An old hand in need of a new one

In trying to come to terms with my sore hands and lack of energy with my fibromyalgia, I have come up with some new tricks to help in cooking meals.

I have gleaned all the catalogued convenience foods available online and I have found some things that I don't have to peel or chop.

Getting my meat already diced and my vegetables pre-cut and peeled is more expensive, but if it means that we can still enjoy nutritious meals, then so be it.

My freezer has diced onions, pumpkin pieces, diced carrots, broccoli and florets of cauliflower as well as pre-cut chicken, stewing steak that has been diced and diced bell peppers. I no longer peel and chop and mash potatoes, but I use the frozen potato with butter added. It is worth the expense.

I have a jar of minced garlic so that I don't have to peel the cloves. Our pantry has spaghetti, penne and rice that cooks in the microwave in 90 seconds. I use that because I no longer can hold the colander to drain it. Our fruit is canned as I can't peel apples or oranges.

I keep our butter in a dish in the pantry because I cannot hold the knife to cut through hard butter or to scrape it. My diet lemonades now come in bottles because I cannot manage the pull rings and my tomato sauce is in an easy pour container for the same reason.

I am grateful for anything which will save my hands, like my electric can opener and my dryer as I no longer can hang washing out to dry. You don't realise how hard pegging something on is until your hands are too weak to push on the pegs.

But one simply has to go on and like all good Sacrificial Home Keepers, and I do. It just takes a bit more planning and a lot of research to keep at it when you are an old hand in need of new ones.

Here’s what works for my fibromyalgia blogger friends

• Cynthia from The Disabled Diva shares her top tips
• Shelly from ChronicMom blog shares her #1 recommendation
• Australian Sacrificial Home Keeper on tricks to help cooking  
• Mandy and Michele on their preferred medication
• Lee Good, who is discovering what works to help Fibromyalgia at Fibro Files 
• Katie from Painfully Living shares what’s worked for her
• Sue at Rebuilding Wellness blog shares her top tips
• Carrie shares her top tips at My Several Worlds blog
• Bettina shares what works for her in the hope that it will work for you
• Nikki from the Brainless Blogger shares her top tips
• Bethan from Hello Fibro Blog shares what she’s learnt since diagnosis
• Looking for the Light blog lists three recommendations for you to try
• Cynthia from My Inspired Fibro Life shares her tips
• Donna over at Fed up with Fatigue writes about the beneficial fibromyalgia treatments she’s used since diagnosis