But by the grace of God, go I

As you probably know, I suffer from a myriad of health issues from life threatening to annoying. Each day is a constant struggle to keep my home and look after Chris and myself and our little white cat, Xena.

Recently, I read an article about chronically ill bloggers who use the internet to feed their latent Munchausen's disease  The writer who obviously is not suffering an invisible chronic illness, concludes- falsely that we are feeding a desire for attention and sympathy.

This writer had no medical expertise and spoke with the confidence and freedom of a healthy person who knows nothing of the pain every day brings to us who aren't so blessed. It made me both angry and sad.

Anyone who manages to carry on a relatively "normal" life, sacrificing their comfort to serve and love those closest to them, know that the only thing we really desire is compassion. We rarely take delight in our symptoms, in fact the majority of us try very hard to appear as a healthy person in spite of being in pain and discomfort.

Goodness knows, we suffer so much with people judging us unkindly and this simply serves to push us further into depression and loneliness. Especially when our illness is invisible, like fibromyalgia.

Many of us chronically ill people are housebound for the most part, and therefore we feel a certain amount of loneliness and disjointment from society. We simply want to be respected and allowed to simply exist without the stigma of mental disease in the form of Munchausen's.

We bloggers of chronic illness do so because we know the feeling of disenfranchisement in a social sense. We are stripped of our right to live in peace and freedom from bullying ignorant people. 

Writing for those who suffer like we do helps us to reach out to people who would understand the psychological insulation and the sting of being misjudged and categorised as a malingering attention seeker. 

Whilst it is true that we have the LORD to love us unconditionally, it nevertheless hurts us that people are so cruel and instrumental in adding ridiculous labels to us that demoralise us even further.

Chronic illness and pain is a horrid  way to live and those who cast stones at us would do well to thank God that they aren't so afflicted. God has not chosen them to walk the lonely path of chronic illness and they also would do well to remember "but by the grace of God, go I" 

© Glenys Robyn Hicks

Beloved, I pray that you may prosper in all things and be in health, just as your soul prospers. 3 John 1:2

They're silently waiting for me

Anyone who follows this blog knows that I struggle with washing the dishes. It is a battle that is fought and lost on two fronts: emotional and physical.

The emotional part is owing to the fact that I don't have a dishwasher and the dishes multiply like rabbits and are a continual eye sore on the side of the sink. 

In spite of cleaning them up and being rewarded by not only an empty sink and benches and of course, clean dishes- I find the complete futility of feeling done with them is disheartening.

A terrible procrastinator, I promise myself that I will keep up with them, but illness laughs as it assails me with yet another flare, and they remain on the bench mocking me for being  defeated yet again.

So here comes the other side of this domestic dilemma: being completely out of spoons and suffering from broken knees and collapsing spine. I simply cannot stand.

And of course that horridly wicked ruler, Fibromyalgia ensures that I am in an almost constant flare, and it is the cherry on the top of my cocktail of pain. So not only is my physical health attacked, but also my mental health. It's depressing.

I know I could ask Chris for help, but he has heart failure and battles his own health issues. It has always been me who washes the dishes, and then he will usually come and dry them and put them away. I am grateful.

Until I can gather some spoons I will sit and wait for my Tramadol to work. I plan to clear the dishes up, cook some steak and vegetables for dinner tonight and rest. That's the plan. Meanwhile, they're silently waiting for me.

The cupboard was bare.

                                               

So with chronic illness, one has to find shortcuts and plans that whilst celebrating events, keeps the work involved to a minimum so we don't run out of spoons.

This Christmas, with the mother of all Fibromyalgia flares and hosts of painful ailments all vying for top position, my twin sister and I decided to buy KFC again this year, and make that our Christmas feast.

With her being a Fibromite with Lupus, we planned to buy it to eat as a family for our festive lunch. We had done it before and we found it just right. So the plan seemed sound.

However, it turned to dust as Chris and I travelled to my sister and son's house, looking up various KFC's on our phone. Each website showed it as being closed this Christmas Day! 

We called in to my elder son's home to wish them a Merry Christmas and exchange gifts, and I told them of our dilemma. Straight away, my daughter-in -law called my son to start carving up their enormous leg of ham.

She also gave us a large tray of pasta salad and a frozen dessert suitable for 4 people. They both saved the day for us.

Arriving at my younger son's and sister's, I was informed that her cupboard was bare. She also planned on KFC as our Christmas fare and hadn't anything else available. She was so relieved when Chris came in with the food from my other son. 

We ate lunch with great relish, exchanged gifts and hugs and took Holy Communion together. It was quite special and we enjoyed remembering Jesus's birthday.

Later on, I talked to my son and his partner and told them they had saved our Christmas. Faced with nothing to eat and an empty pantry, it made me think of Mother Hubbard and how she must have felt when the cupboard was bare.

Oh no, no ho ho!

So we had our little granddaughter Taylah for a few days, and picked her up Friday, but it didn't go to plan. After a full day, in spite of me making an effort to play with her and give her my full attention, she decided she wanted to go home. 

She said she missed her mother, and so we made the 2 hour trip each way to drop her off again. Even though I didn't drive, I was exhausted. Even being a passenger is gruelling when you have a fibromyalgia flare, angina, sore back and broken knees that throb with every heart beat.

I had bought a rolling pin with the nativity on it and planned to make Christmas cookies as gifts. Well, I did make cookies as promised with Taylah helping me, but not the ones I planned to give away. They were plain cookies. 

When I told her we had to refrigerate the dough for a couple of hours, she said she didn't want to have to wait. So the Christmas cookies didn't come to pass. 

The Mother of all Flares has come to pay me yet another visit- or maybe I just haven't recovered from the last one. I am feeling so exhausted I could collapse. So yesterday I had a nana nap and went to bed earlier than normal.

I was hoping that would do the trick and give me some wind under my sails, but in truth I awoke with no spoons. No spoons on Christmas Eve is a disaster!

We were supposed to leave our home around 11am today and visit my children and grandchildren but I felt unsteady on my feet, due to wonky knees, foggy in head due to fibro and hurting so badly with my spinal stenosis that I had to cancel.

Tomorrow we are supposed to see Taylah open her presents, visit my sister and son for lunch and go to my step-daughter's for afternoon tea before driving the two hours home before dark.

Truthfully, unless I have a miracle, we won't be going. After I finish chatting to you, I will be letting the Tramadol work by going to bed to rest. I really want to feel better.

As much as I love my family and Christmas, it would seem that it is going to have to be cancelled. It's a pity but it is what it is! Besides, nobody wants a spaced out whiny woman around them on Christmas Day. And I don't want to her, but unfortunately it's hard with illness to have any ho ho ho. 

No mojo with fibro

So leading up to Christmas, I had my 9 year old granddaughter Taylah, stay with us until Christmas Eve, when she would be taken home in plenty of time for Santa to come.

I promised Tay that we would make Christmas cookies make cubbies, play school, go swimming and have a play date with her cousins. 

Day one started out well and we played school, office workers and shop keepers. I showed Tay how to touch type, taught her a bit of Italian and French in a fun way and then I promptly ran out of spoons.

I simply had to give in to the pain and take some Tramadol to keep going. I made some lunch and felt like I might pass out. Dizziness assailed me and I felt vomity. Probably the Tramadol.

I had to explain to Tay that I love having her here, but am not well and I need to take a nana nap. She got a crash course in fibromyalgia and chronic fatigue. 

She had lost her paternal grandmother last week and was very anxious about me so I didn't want to frighten her too much, so I said that if I don't go to rest for an hour that I would not enjoy her stay because I would be cranky. If I went to bed just for an hour, I would enjoy it so much more, and so would she.

As she accepted this fact, she immediately bombarded me with "but I thought we were making cookies, playing out side and making a cubby house?" I told her we could do all that if I took a nap. She said OK then got her ipad out. I went to bed and allowed the Tramadol to do its magic. It didn't.

No, it didn't do anything except make me nauseous, even after a 20 minute nap. That was all I got. So, I got up, made us all a cup of tea and sat down with Chris to watch a video he wanted to show me.

Taylah pouted and demanded to make cookies, as I had had a nana nap. Groaning, I got up and started taking ingredients out to make the cookies. 

After that, I was too exhausted to clean the kitchen. I cooked dinner and then it was time for Tay to have her bath. That wasn't a big deal as she's nearly ten, but she wanted me to play MacDonalds with her, so I got some wooden spoons and plastic cups for her to play with. 

I sat on my shower stool and bought some Big Macs,"no pickles, no onion and a soft serve cone for my daughter." We blew bubbles with the Imperial Leather soap and I did what Fibromites do best: I tried to hide my pain and pretended to have a good time.

By 9 o'clock I insisted that Tay go to bed and I joined her. Before we went to sleep, she told me she missed her mother and wanted to go home.

In the morning, she assured me she loved being here and she loved me but wanted her mum. I told her I understood and that it was fine. We would take her home. She was humming to herself as she played teacher and when I went to the fridge, I found a love note from her to me.

I was glad as I worried she didn't stay with us longer because I was a boring old lady. And I fear I am. Cos everyone knows there's no mojo with fibro.

Resting my tired twinkle

So I did a thing that stripped me of what little spoons I had. I took a shower and went to click and collect a few Christmas gifts I ordered on line.

I came home and cooked dinner and had a bad asthma attack. I couldn't breathe properly. Chris tidied up the kitchen for me and I sat down for a while until I felt better.

The Mother of all Fibro Flares has paid me a visit. I ache everywhere and feel too exhausted even to talk. It is nearly 9pm here and I am ready to go to bed. 

You just have to listen to your body in times like this. Hopefully tomorrow I will wake up with some spoons.

After 6 months of not seeing my little granddaughter, Taylah, we are picking her up Friday and having her for a few days. I just have to be well enough for that. We have missed each other. Fortunately she is nearly 10 years old, so she doesn't need a lot of care.

I am too pooped to worry a great deal about Christmas this year. We have bought a few things online and that will have to do. Sometimes you just have to rest your tired twinkle! 

Something to remember if we move.

Yesterday's house inspection went well. She thanked us for keeping the house nice and said the owners will be pleased. I am glad to hear that because Chris wants to move closer into the bigger towns when/if we sell the fifth wheeler. I want to move closer to my children if I have to move. I am not keen on moving again. Anyway, we will have a good record as tenants if we have to move.

I have arms that feel like they're made of lead today. Fibromyalgia. I did our online shop again and it's due to be delivered this afternoon. It's the easiest way for us to do it these days. I have some dishes to wash from lunch and breakfast and I will probably have a nana nap to be able to cope with cooking diner and putting the shopping away.

Lately I've been spending quite a bit of time in bed. It usually doesn't get made much for that reason. But with it looking nice yesterday for the inspection, I decided to take a snap of it. Something to remember if we move.

A merry little Christmas

                                                

We are waiting for the real estate to carry out their 6 monthly house inspection for our rental. There won't be any problems. We love our home and have a lady come do some cleaning every two weeks. Just the stuff like vacuuming and mopping that we can't do anymore. 

I have washed all our bedding over the last few days and stored our doonas away because we are now in our summer. Next week I will wash our pillows.

I will be making some sugar cookies to try out my Christmas nativity rolling pin. The cookie cutters came yesterday. I want to get the dough right before I make them up for Christmas gifts. If  our little granddaughter is here before Christmas Day, I will let her help. She loves being in the kitchen and I let her cook or bake. 

Our doctor is going to do a phone consult for us this afternoon. It's mainly for prescriptions but I need some advice on meds for Chris's fluids. His feet are swollen like balloons. (He has heart failure) I could have gotten in to actually see the doctor this afternoon, but Chris won't go, so I settled on the phone consult.

I put our little Christmas tree up and hung a wreath on the door..

Just taking things quietly each day.  With another flare of fibromyalgia, it's enough. Like my 18" tree!  We are going to have a merry "little"  Christmas.

But then again, maybe not!

 

With the start of our summer tomorrow, we have been having some very lovely days this last week and today. I have enjoyed the respite from constant rain and so has my body.

Fibromyalgia has taken a back seat and I am enjoying having some spoons. It's been so long that it is a surreal feeling. 

I have been washing our bedding after the winter months and will be packing away our doonas. We both don't sleep very well and so we prefer minkie blankets. They are light and easy to throw off if we get too warm, yet warm enough to preclude the need for the heavier doonas for a drop in temperature.

It's such a joy to open the windows throughout the house too. We are fresh air freaks. There's nothing like the smell of the early morning. 

I am going to make up my favourite cookie recipe today. And I think I will bake some sultana muffins for Chris. He loves them. 

In stark contrast to flare days, I have already had my shower and gotten dressed. I need to take our bloods and give Chris his insulin injection. I think I will serve him some soldiers for breakfast this morning.

I have pork chops thawing for dinner tonight. I may do an egg salad to go with them. It's salad weather here at the moment.

As I must pace myself so as not to bring on another flare, I think in between tasks I will go out in the back garden and sit on the garden swing. My friends the birds are so tame that they actually come down to eat almost from my hand. It's so relaxing!

I have a lot of things I want to do today, but nothing compares to sitting in the swing in the sun watching the birds. So maybe I will get all those things done, but then again, maybe not! 

My four tasks of homemaking

With severe Fibromyalgia and fibro fog, I find making lists helps me focus on what needs to be done each day in my home. I love following Legacy of Home blog by Mrs Sharon White and I have adapted her daily lists to my needs. On bad days I follow Sylvia's Lists. Here is my list. I hope it helps you too. 

WAKE UP: BLOODS, JAB AND MEDS FEED XENA

1.  There is the breakfast hour, which includes tea-time. First we prepare the meal and set a table.  I often set up a tray- table and sit in the parlour before anyone else is awake.  I am an early riser so I have my tea while the sun is just beginning to rise.  I enjoy this quiet time of resting from the brief bit of morning work.

Later, when the family has their eggs and toast, or fresh baked muffins with fruit, it is time to do the dishes.   We wash the table and the counters and do the sweeping.   All the work of tidying and making things neat are part of the breakfast duties.

2.  Often, during the morning hours, we do the laundry or the dusting and vacuuming. Each day has its special work. It may be Wednesday is for washing floors. Perhaps Thursday is for cleaning the bathroom.  The mid-morning hours are a good time for many of us to do these special duties of making a home look pretty. LIST WORK FOR THE DAY

3.  The Lunch hour is such a wonderful time to stop and rest.  We put out a fresh, clean tablecloth.  I love my white-and-teal checkered cloth.  It looks so homey and old fashioned.  We can set up our plates and napkins. We can do this even if we are just serving grilled cheese sandwiches, pickles, and chips!  It makes the lunch - work like a reward when we sit at that pretty table and rest and eat while we enjoy the family.  Next we do the sweeping and the dishes, much like we did in the morning.

4.  The dinner hour is such a precious time in the day.  I often start working on the evening meal at 3 in the afternoon. I work slowly and take lots of breaks. Sometimes I peel potatoes and start getting a little casserole ready to bake.  Other times I might do much of the work for a pan of lasagna. I like to put these pans of prepared food in the refrigerator and then just take them out to bake when it is just about dinner time.  That way I get a great deal of rest between all the work. CLOSE BLINDS LIGHT LAMPS  BLOODS AND JAB. MEDS AND MILK

Sitting with the family and hearing the blessing (or the prayer before the meal) is such a peaceful experience.  It is lovely to just sit and enjoy dinner at the end of a long day.  Then the work of tidying, doing the dishes, and sweeping the floor happens.  We make everything look neat and pretty. But I do not like to rush.  I do not want to just "get the work over-with." I take my time and go at a steady pace.  The work of cleaning and accomplishing the beautiful work of making a neat home makes me happy.  It also brings peace. .  Bathe or shower

These four tasks of homemaking do not take a great deal of effort.  They may seem simple and ordinary.  They may seem mundane.  But if we dress up in something pretty, wearing an apron, and keeping our hair up in a pretty style, we may find ourselves enjoying the work.  I have an old blue-and-white gingham apron that I love to wear. It is getting old and ragged. I will have to make a new one this coming fall.  I need a fresh supply of lovely aprons to wear as I do the housekeeping.

When we look extra nice as we do our work, we can find joy in the labor.  Doing the little tasks of keeping house, each day, with a feeling of contentment, will bring a true feeling of comfort and happiness to the family.  It will help them feel welcome and loved in a happy and simple home. adapted from Mrs Sharon White of the Legacy of Home