Perhaps I am

 

So over the Christmas/New Year break, I have had a few disappointments. Once again fibromyalgia flares, lymphoedema and angina have plagued me when I particularly wanted to be well, and they've ruined my joy in life.

This year we weren't even invited anywhere for Christmas Day or New Year. When I asked about it, my children responded with "well you never come anyway!" It hurt because it's true, but I smiled and said "that's OK!" But it would have been nice to have been invited anyway.

Chris's children came to visit us a few days before Christmas and I was nearly demented with pain and fatigue, but I kept smiling and tried to be cheerful. I don't think they realised how much pain killers and determination went behind that smile.

I know some people think I am a malingerer because I don't look sick most of the time. And I think they believe that I am putting it on when I say how painful my life is- they have no idea the effort it takes to appear well. 

Not allowing illness to define me, I try very hard to overcome my pain, tiredness, depression and lethargy. Often it is overwhelming and I succumb to the feelings of loneliness and inferiority that drown me. 

But no one really knows that depth of suffering, and I do believe no one cares. So I will discipline myself and take control of what few spoons I have, for not many know how heavy the cloak of illness gets.

So when I occasionally do succumb to it, and mention it to others, I can see them looking doubtfully at me and judging me as a malingerer. They think I am acting and putting it on.

I do act a lot, really. Strong when I am weak. Energetic and able when I am clearly not. Smiling in spite of it all. Bearing my load stoically.

If they did know the depth of my pain they would know that I do act- I act out feeling normal. An actor who could win an Oscar to avoid being labelled as a fake. 

A good actor can bring to life a fictitious person and for me, that person is myself enjoying good health.

They say I am an actor- perhaps I am...

Time to go bye bye

 

Life has been a challenge lately with more housework than I can handle.

Last month Chris was in hospital, we acquired a new cat owing to a family emergency, my fibromyalgia flared due to the stress and Chris was/is too ill to help me.

Last week we both had some type of stomach bug and cancelled our home help visit, so that put the house cleaning back by a fortnight.

Plus as it's almost Christmas, I am expecting to have family visit and I just don't feel ready.

This year we decided to give the grand children under 18 some money as we are too ill to go shopping. Chris still can't see properly so he cannot drive. Due to broken knees, I no longer drive either.

I have purchased some ham and other Christmas goodies as it will just be Chris and I this year. We are simply too ill and tired to bother.

Depending on how I feel, I may get my son to pick me up and go to see my sister and he to take Communion together and give them a small gift each. And that's a wrap!

So this week I am trying to catch up on my neglected home and get my kitchen in order. Particularly the dishes.

Like I have vowed every year to do, I am going to try and clean it before I go to bed for the night. I know that lovely feeling of waking up to a clean kitchen and I want to feel it again.

So that will be the plan for the next week and hopefully will become a habit for the New Year. It's time to tuck my kitchen in at night and tell it to go bye bye! 

Our newest family member

So we have just adopted our new sibling for our white cat, Xena. Like most new additions to a family, there is an immediate reaction of rejection, forcing our new male cat Milo to hide in fear.

Most times Milo will venture out from behind the couch when we call him. He comes to sniff our hand and stays long enough for a quick pat on the head, but that's it.

We are hoping that he and Xena will eventually get on and we console ourselves that it is early days yet.

Not particularly wanting another cat, we couldn't resist taking him off family member's hands as they no longer wanted a cat. We couldn't bear the thought that he would be taken to the pound and maybe euthanised.

Chris and I love cats and with both of us being chronically ill, we find they help us relax and increase our enjoyment of life.

We both agree that the joyful company of two felines will be worth any initial trouble between Milo and Xena and the extra fibro pain as I clean up after them.

If it doesn't settle, down we figure that Milo needs us as much as she does. 

So far today I have made an apple pie with Hermesetas for sweetening. On the stove a Dutch oven holds my pumpkin soup.

I am hoping the enticing smells will make Milo hungrier as he hasnt touched any food since he got here.

Xena has eaten but is now on the guest bed chasing the sun... obviously keeping her distance from our newest family member.

I think I could sleep on the freeway.

We visited the doctor today.  I have extremely high blood pressure which the doctor feels is due to my fibromyalgia pain.  It has flared since the move and I have gone grey overnight.

He is increasing my antidepressants as I am stressed to the max. He believes they may help in my fibro pain. He has not offered anything for pain as yet. 

I feel totally exhausted and I need to help Dianne for the next month as she can't drive.  My spoons are gone before I surface each day.

My exhaustion is such that my legs feel like they can't hold me up. Yet like helping my daughter and looking after my sick husband, there are things that just have to be done.

My grandson walked to our place from school today and found no clean cups for a drink. I told him he will have to wash one out for himself as I have been so unwell that I haven't been able to stack the dishwasher.  

He selected a picnic cup instead of washing one and then asked to be driven home. I felt guilty that my kitchen is a mess but Chris has fluid build up in his lungs due to living with heart failure and hasn't been able to help.

As a fellow counter of spoons, he has to save them for driving Dianne to doctors' appointments and physio, so I do not ask that he helps with the housework.

My extra antidepressants are kicking in and I am feeling tired as we speak. I must straighten my bed first as it is very uncomfortable as it is. I need a good night's sleep.

It is true that you sleep better in a tidy bed. The way I feel right now, I think I could sleep on the freeway. 

We give You thanks

                                                

"We Give You Thanks"

Lord, as we gather at this table
May we be truly grateful
For the bounty You have given us.
We thank you for the earth and rain,
The good harvest and the wholesome grain
That went into our daily bread
And kept the stock that kept us fed.
Thank you for the hands that cooked and baked,
And for the water that our thirst slaked.
Please accept our thanks as we honour You
For Your goodness in giving us this food.

© Glenys Robyn Hicks

By him therefore let us offer the sacrifice of praise to God continually, that is, the fruit of [our] lips giving thanks to his name. Hebrews 13:15

A common thread

 

I recently saw this beautiful painting that evoked happy memories of both my childhood and my mothering days.

With a large family of seven to wash for, I usually washed three loads of laundry daily and hung it out.

So many years ago,  and a time when the days were long but the years were short. Now mostly a distant memory. I now longer can hang my clothes out.

Fibromyalgia and polymyalgia rheumatica has put paid to hanging the washing on the line. Flexing my sore muscles is so painful these days. I am forced to use the dryer.

I really loved the smell of line dried clothes and delighted in this painting with the children in the yard. 

Hanging the clothes out to me is synonymous with family life. It speaks of service to family, activity and life.

Globally, I think we can all concede that washing on the line is a common thread that unites the human family.

It doesn't take much!

As you know, we have my sister here with  us until she finds a new rented home. She's been here for 8 weeks now and I have been taking care of her.

My twin, like me, has fibromyalgia, heart and lung problems and has recently had RSV. It went through our house.

But until I am diagnosed, she is alone in suffering with Lupus. There's a question mark over whether or not I have it too. We are mirror image identical twins.

So suffice it to say, I have been looking after her and part of that is making sure she eats well. 

As I told you in a previous post nutrition can extend our life and certainly makes for a more pleasurable life. So I made sure my sister was eating lots of vegetables and fruits and red meat at least 3 times a week.

At her last doctors visit before moving in with us, she was told that the Lupus had made her very anemic so much so that she needed an iron infusion. She didn't cook much when she did cook... and sometimes her diet was not very nutritious. 

So, as I mentioned she's been with us for two months and her new doctor- (our doctor) ordered baseline blood tests. The results showed her iron has improved and she no longer needs an iron infusion.

This reinforced my belief that good plain homemade meals made from scratch with lots of vegetables and fruits, help extend one's life. The proof is there in the blood tests, for the life is in the blood. 

By eating well and staying well nourished, life can be made more enjoyable and prolonged. All it takes is a balanced diet and a little thought in purchasing our food. It doesn't take much! 

Fading fast...

 

Lately it seems that my life consists of pain, fatigue, breathlessness and pacing. pacing. pacing.

Life demands certain things of us and for me it's looking after a sickly husband, a house that is in need of a good clean and now a convalescent sister who is here to recover from a nasty fall after hospitalisation for lupus.

On top of that, we are trying to find rental homes for her and one for my son who was her carer. 

My fibromyalgia is flaring  because I am stressed and all I seem to do is pace myself to ensure I keep the few spoons I wake up with.

I am back to sharing a bed with my husband as my sister is occupying my adjustable one to alleviate some of the pain in her injured back and legs.  Neither Chris or I are sleeping well at night.

So I follow a plan for a rest between tasks and by the afternoon I am so overcome with tiredness that I have to take a nana nap in order to have enough spoons left to cook dinner.

And as I sit resting, I realise that most of the day for me is now resting and pacing in order to just get through. even with minimal tasks planned.

And as the spoons diminish, I realise too that my strength is fading fast with fibromyalgia and old age. It is what it is.

I am fading fast.. the only thing about me that is fast! 

"We give You thanks"

                                          

"We Give You Thanks"

Lord, as we gather at this table
May we be truly grateful
For the bounty You have given us.
We thank you for the earth and rain,
The good harvest and the wholesome grain
That went into our daily bread
And kept the stock that kept us fed.
Thank you for the hands that cooked and baked,
And for the water that our thirst slaked.
Please accept our thanks as we honour You
For Your goodness in giving us this food.

© Glenys Robyn Hicks

By him therefore let us offer the sacrifice of praise to God continually, that is, the fruit of [our] lips giving thanks to his name. Hebrews 13:15

Making memories.

 

It's school holidays her in Australia and I am waiting for my granddaughter to bring my great-granddaughter to lunch today.

Of course my fibromyalgia has decided to flare up and I have had to really push myself to get up and do my morning chores.

Years ago, I realised that sometimes we have to push ourselves to actually live. I could put off the visit until I feel better, but memories must be made.

Today is pancake day!

 

So today I wanted to make some pancakes for Chris's breakfast. I went to my pantry confident that I had a few packets of plain flour there, waiting to be used.

Sure enough, I not only had plain flour, but self raising flour and cornflour. I always keep a spare of everything in my fridge and pantry. Just in case there's a shortage or I don't have money any pay period.

I measured the plain flour and noticed it was a little dark. So I tasted it. Bitter. So I checked the use by date. Best before July 2021. 

Flabbergasted, I checked the other flours and they all were out of date- by two years!

When covid was at its height, I remember buying extra flour and sugar so that I could at least bake something tasty when we were staying home... 

Feeling a bit guilty that I havent baked for a couple of years, I recalled that my fibromyalgia had been bad all that time, and I toasted a couple of crumpets for Chris and promised to add flour to the shopping list for next week.

He was so longing for pancakes but settled for the crumpets and tea. 

Pancakes weren't meant to be today: but next week I am sure Chris will say, "Make me some pancakes for today is pancake day!"

Welcome! Come in and lie down!

                                                    

So yesterday we  had plans to visit my son and my twin sister who share a house together..I had been looking forward to it for a while.

When it was time to rise, I didn't feel well enough to go and it was only because I had to deliver some medications that I made the effort to leave the house. My fibromyalgia and polymyalgia were both flaring and my body was missing the Prednisolone...

On our way there, I kept falling asleep, only waking up when the seatbelt garrotted me... I felt weak and disoriented.

By the time we arrived after a 40 minute drive, I couldn't focus and after ordering McDonalds online for lunch, I fell asleep at my sister's computer.

We ate lunch and I still felt like my head was full of cotton wool and my muscles especially in the neck and shoulders were so sore I nearly cried.

My twin and son who has chronic pain issues from a work injury and fibromyalgia, told me to go and lie down in her bed. My sister joined me and my son went to his room, leaving Chris to watch TV and/or sleep.

I don't know how long I was asleep, but Chris came in and asked to go as he was feeling unwell with his high sugars and wanted to go while it was still daylight.

We quietly let ourselves out and took the scenic easy route home...and I slept on and off throughout the journey...

Next week my twin and I will be 70 and they are planning to come to our place. Although I am looking forward to seeing them, I know it will be a shortlived visit.  

Chronic illness in the form of fibromyalgia, polymyalgia and lupus for her, dictate our lives somewhat... in spite of the best intentions, spoons dictate rigidly and always win.

We will eat, they will leave to go home to sleep. It looks very like I will be saying, "Welcome! Come in and lie down!" 

    

             

Right where she loves to be!

Our white cat, Xena loves being near me. She always follows me around and sleeps with me as well. I guess she's her mother's girl.

She can be a bit jealous though. When Chris comes in to say goodnight and tuck me in and he always gets greeted with "nooooo!" from her. Especially when he kisses me. For that, she always gets up and comes to me, rubbing my hand or licking it.

Whenever we sit on the couch watching TV together, Xena jumps up and wiggles her way between us. We find it endearing and amusing.

Recently we got a new desk for my study nook and there's plenty of room for her favourite daytime sleep- her igloo. So knowing how close she loves to be- usually lying over my keyboard as I try to type- I put her igloo up on the desk in the corner, very close to me. She loves it!

We both love this house and feel really nurtured here. And so does Xena- and why not?- she's right where she loves to be! 

Silly season's begun already

 

This year because we finally have a larger home, I am hosting Christmas Day lunch. As always, I need to plan and pace myself because of my chronic fatigue, so I am looking into buying my foods and gifts early.

I know I am going to have a fibromyalgia flare by Boxing Day, but it will be worth it to have some good memories. Sometimes you just have to push yourself or you never do anything. I am looking forward to it! But to minimise any major flare after Christmas and leading up to it, I am planning already!

Last weekend our 10 year old granddaughter Taylah came and she loves Christmas and decorating, so we gave her the tree and decorations and told her if she wants, she can decorate it. She wanted to!

So except for Grandpa Chris holding her to place the star, she did it all by herself. We think she did a sterling job!

To be honest, if we weren't hosting lunch this year, we probably wouldn't be bothered with the tree but with family coming, it seemed worth the effort. So the tree is up albeit early. With both of us feeling under the weather, and with a little willing helper, it is cheerful and jolly. And good timing!

Taylah placed the solar lights so that the tree turns on at dusk and turns off at dawn. So there's no upkeep and even though the tree is minimalist by most standards, it still heralds in the festive season.

All we have left to do for decorating is putting the wreath on the front door, but it seems a little too soon to go public yet and let everyone know that at Hicks' House, the silly season's begun already!

Planning already

This year because we finally have a larger home, I am hosting Christmas Day lunch.

As always, I need to plan and pace myself because of my chronic fatigue, so I am looking into buying my foods and gifts early.

Currently I am investigating if I can freeze a joint of ham and one of pork. Also, what type of ham is the nicest to buy?

I know I am going to have a fibromyalgia flare by Boxing Day, but it will be worth it to have some good memories.

Sometimes you just have to push yourself or you never do anything. I am looking forward to it! But to minimise any major flare after Christmas and leading up to it, I am planning already!

Of rosy cheeks and apple roses

This weekend we had our 10 year old granddaughter, Taylah come and stay with us. We had a lot of fun and part of that fun was making apple roses.

My fibromyalgia was really bad and I explained my need for a nana nap by relating the meaning behind the spoons. She totally understood and in fact told me to go have a nap and she would call me in half an hour.

True to her word, she woke me in half an hour, but my body whimpered and said, "No way!" However, because we had made a "pinky promise" and I wanted to keep it, I dragged myself out of bed.

We stayed up until 11 on Saturday night because it wasn't a school night, and we slept until midday. I couldn't believe that I had slept that long. Tay must have needed it too.

We baked  apple roses and kept some aside for when her mum and sister came to pick her up. It was the first time they had seen our new house. I rarely see them these days. 

I was happy that we had made more memories when I said goodbye to them and so was my little Tay, looking lovely and rosy cheeked, clutching a few more apple roses for them to enjoy later.

Between my nana naps!

 

Today is Saturday morning here. I have had a busy week with doctors appointments and physio for my daughter who is doing really well. 

My son had a possible cancer in his bowels, but the first test was a false alarm and to be honest, it made me anxious. I didn't realise how anxious until he was cleared. 

This son was born with a forceps injury to his eye- it looks normal but he has very little sight in it. He has developed a pterygium or sun damage in his good eye and has surgery next Friday to remove the growth because it is growing across his eye and may interfere with his vision. I will be glad when it's done and his eye has recovered. 

All this has given me the Mother of all Flares. My fibromyalgia is killing me at the moment and I am taking frequent naps to cope with it. I have a few housework chores to do and some folding up of clean washing. I will do it- in between my nana naps! 

For me, it's spoons!

It's Sunday morning here. I have brought in the online groceries and checked them off and put them away. 

I will soon be taking Chris's bloods and doing breakfast. Breakfast will be eggs and bacon and a cup of tea. Lunch will be ham and salad sandwiches. For dinner, I am doing a vegetable intensive beef stew. Fresh fruit for desert.

There's a hamper of clean clothes to fold and then I will be up to date with washing. Later I plan to make some coleslaw, if spoons permit. 

That's about it for today, except for cooking dinner. I don't want to put myself into another fibromyalgia flare or I won't have spoons to help my daughter tomorrow. As I always say: most jugglers juggle balls, for me it's spoons! 

Bushed but satisfied.

Today we have no physio or doctor appointments so we can stay home. I am ploughing through 3 loads of washing and I have to clean my kitchen. 

I am cooking a pork stew in the slow cooker. Chris is feeling unwell and is sleeping a lot. I would be if I could with my fibromyalgia flaring, but I am waiting for the cleaner to come.

I have finally found a cleaner who can fit both DD Dianne and my homes in for a clean once a fortnight. They are doing hers at 2pm and ours at 4pm today. 

Although my Roomba is doing a great job, it needs someone to get into the corners it misses so I will ask the cleaner to do that. Basically it's my floors and bathrooms that need cleaning today with the beds changed starting next Wednesday week. 

We only have Chris's "man cave" to sort out now- the rest is done and the place looks nice. We are totally bushed, but it a satisfying feeling to look around and see it all come together.

I am too tired to shout!

Today is Monday morning. I have to do some washing and restack the dishwasher. I have run Sadie the Roomba and am about to do bloods, meds and breakfast. 

Later on at 11 a man is coming to do some flatpacks of furniture for us. I am hopeless at this and Chris can't do it anymore. It's a coffee table and TV lowline unit. It's $40 an hour but we had to factor that in when we bought them. It is what it is! 

At 2.30 we have to pick Dianne up and take her to a doctor's appointment. Then I have to go to the chemist and get her meds made up. 

It's supposed to rain for the next 10 days and the rain has been consistently heavy and constant. I think we are going to need an ark soon.  It is making my fibromyalgia worse, and I am pushing myself to get Di to doctors and physio. 

I will neverthless be busy with doctors and physio for the rest of the week and possibly next two weeks or more. I am glad Di's knee has been done though. It's all over bar the shouting! With no spoons at all, I am too tired to shout!