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...

They weren't forthcoming!

 

So Christmas has come and gone and I am totally down and out with a severe fibromyalgia flare.

Our festivities weren't grand and we stayed home. We had family come on Sunday and then on Tuesday and it was fun but exhausting.

Come Christmas Day, we just stayed home by ourselves. I was so fatigued and in pain that we decided that leftover ham sandwiches were good enough for lunch and dinner.

By 9 o'clock Christmas Night I was in bed and stayed there all Boxing Day. I was so tired and stiff in the muscles that I could barely move. Painkillers didn't help at all...

Saturday saw me cook dinner and lay on the couch and that was all I could manage.

Lucky that I don't believe in Santa any more or else I would be sorely disappointed... all I wanted was some spoons for Christmas... and they weren't forthcoming.

Christmas is for you!

Merry Christmas to all... may you accept the greatest Gift- the gift of salvation through Jesus' Blood shed for you for your pardon.

Coming as a Babe, He will return as the Victorious King... be ready. Get saved. Today is the day to receive the greatest Gift- eternal life...

© Glenys Robyn Hicks

Jesus said unto her, I am the resurrection, and the life: he that believeth in me, though he were dead, yet shall he live:  John 1:25

And she brought forth her firstborn son, and wrapped him in swaddling clothes, and laid him in a manger; because there was no room for them in the inn. Luke 2:7

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! 

Dwelling in acceptance and peace

 

So over and over again lately, I have had to have a nana nap in the afternoon. I simply can't stay awake all day.

In the past, I have tried to push through the daze and thick fog of sleep deprivation, only to find the fibromyalgia flare, angina pain, neuropathy and endless pills to keep me functioning put an end to it.

After 25 years of fibromyalgia and other chronic illnesses, I have decided that the spoons win. I have given in to their control. I now plan an hour or two hours sleep in the day.

After the daytime sleep, I find I can function enough to cook dinner and feed the cats.

I think being nearly 73 years old doesn't help either. I talk to my friends who suffer no chronic illness but are the same age as me, and they are finding a nana nap is indispensible. 

Another strange thing I have noticed is that I seem to have a better quality of sleep in the daytime. As a result there is more restorative benefit from giving in to the fatigue.

I have decided to once and for all accept that my body needs extra sleep and learn to live with it.

By taking a nana nap, I find that the spoons don't win entirely. Sleep truly is a gift from God...

Psalm 4:8 In peace I will lie down and sleep, for you alone, LORD, make me dwell in safety.

I know at this season of my life that I can take that nana nap when I need to or leave the clothes to be folded another day. Likewise I can go to bed as early as I want... there are no schedules to keep.

Each day brings its challenges but even so, I am glad to be here...life is still sweet!

Even in this quiet season of my life it is very comforting to know that I am just where God wants me to be-quietly dwelling in the simplicity of acceptance and peace.

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 can dream, can't I?

 

So I was visiting Chris at the hospital after his stroke, and was making painful slow steps with my walker along the miles of corridors to the lift.

Suddenly I was met by a rather large robotic sweeper cleaning the floors. He was almost as tall as me, and moved at about the same speed.

I knew that after I got off the lift that there would be a lot more walking to do until I got to my husband's room. And I was already feeling breathless and exhausted.

My fibro was flaring, my knees were hurting and my heart was paining me. Breathing was an effort, so much so that I almost felt the need to hang my arms around its neck and hitch a ride...

I smiled wryly to myself as I pushed the button in the lift to the Avon floor where Chris's room was. It will only be a matter of time before we have automated wheelchairs ready to whisk us to wherever we need to go in these places.

I could just see it in my mind's eye, gladly sitting in one whilst holding onto Chris's sportsbag of freshly laundered pajamas and toiletries for his stay.. 

These robotic AI directed chairs will have to have a name... and then a direction... yes, I can see it now, "Morning, Jeeves! I am glad you are here! Take me to Avon, and don't spare the horses!"... 

As I limped along, I thought how wonderful these chairs would be, but they won't probably be available in my life time... but meanwhile, I can dream, can't I?

                                       

Advice put into action

 

I have had a perfectionist streak all my life, but in the last twenty or so years of fibromyalgia and other ill health, I have had to learn to be content with a more relaxed approach to my home making.

Where once I would be consumed with (false) guilt because I made our bed without four corner tucks or I had the blankets bumpy on the bed, I have had to make do with a more lenient approach. I simply don't have the energy to do four corner tucks. However, even the bed made up quickly and sporting a lump here or there, is extremely satisfying to me now that I've gotten past the perfectionism.

Mornings are no longer the time for house keeping. I have to fit in what I can over however long it takes me... and be content at the end of the day that I actually got it done...

I no longer allow cleaning schedules to dictate to me what I must achieve in any given day or time frame: it gets done more or less within the schedule but on a time of my choosing. It's the only way a Sacrificial Home Keeper can manage..

In saying that I am no longer a perfectionist, I still like to live in a clean home. For me, there are basic things that are not negotiable. I cannot live my life happily unless these things are clean:

I must be clean.

My clothes must be clean.

My bed must be fresh and clean.

My dishes and cooking utensils must be clean.

I can't stand smelly toilets and these and my bathroom must be clean.

These days I need help to maintain this list of essentials.  I do not go into a spin if a fly has died on my window ledge or there is some dust on my furniture. I have learned to accept white cat fur as a part of being a mother to a white cat. The floors can be in need of a vacuum, but I now have Roombas to do them.  It has been years since I ironed something that only I will see... and I learned years ago that one can sleep on unironed pillowcases... it can be done!

I find cooking, shopping, menu and social planning, washing and folding of clothes, managing finances and being a loving wife to my sick husband is enough for me to cope with. I know from experience over the years that by not pacing myself, I will crash and burn and my recovery time will need more than an occasional nana nap...

Accepting our limitations is an important part of staying calm in a world that has become anything but. And for most of us Sacrificial Home Keepers, our world is our home. 

One final thought that helped me was remembering what our family doctor once said to me when my children were young: "A home should be clean enough to be healthy, but untidy enough to be happy!"  I am trusting that I have at last put his advice into action.

I have never been so embarrassed!

 

So as you know, my husband Chris has recently been a week in hospital. We saw many different doctors in the lead up to his diagnosis of Cranial Sixth Nerve Palsy caused by a stroke.

As Chris was not aware of all the medicines he was on, he left it up to me to discuss all medical matters and medications.

I was already stressed and feeling the effects of a fibromyalgia flare. Truthfully, I was exhausted and hurt all over. 

It was an effort to stay awake every day as I sat by his bedside but I wanted to know what was ailing him.

Eventually the doctor in charge of his case came in to update us. I had an important question to ask him and I knew I would forget it if I didn't ask him immediately while it was fresh in my mind. Fibromyalgia does that...

So jumping straight into his conversation with Chris, I told him that my fibromyalgia was flaring and that I had to ask him something important before I forgot.... and I apologised for interrupting yada yada...

Then I forgot. Silence. Expectation. Pregnant pause.

I was so busy explaining my fibro fog and flare and apologising, that the reason for the interruption was over. The question hung in swirling mists of fibro brain fog and I sat red faced and embarrassed.

The doctor looked at me and waited, allowing me time to gather my thoughts and when they weren't forthcoming, he resumed his conversation.

I hate fibro. It rules my life and ruins my credibility as an intelligent woman. It pains me and weakens me, enveloping me in a cloak of weariness that no amount of rest can cure. And it embarrasses me.

I have never been so embarrassed! 

So very grateful

So we were watching TV together when I noticed Chris was shutting one eye and then the other. Then he told me he had a really bad headache.

I gave him some paracetamol and he fell asleep on the couch after taking it.

A day or two afterward, he was looking at me and I noticed his left eye was turning in. That's when the double vision came into play...

After putting up with it for a week, Chris decided it wasn't getting better, so we went to the ED.

They noticed his right eye stares straight ahead, making the left eye turn like it should, but causing double vision which made him feel nauseous.

They noticed his blood pressure was quite high and started him on more medication for it. They ordered a Cat Scan on his head and admitted him.

The CT scan showed no abnormalities, so they followed up with a MRI which did. Chris had had a stroke in his cerebellum.

It was not a bleed but rather a blockage, and they believe this caused his double vision known as Cranial sixth nerve palsy. They don't know if it will be permanent or not.

They are treating his blood pressure,  upping his insulin for the diabetes and putting him on aspirin as a blood thinner, as well as giving him statins for his high cholesterol.

He will be treated by patching one eye to avoid double vision and taking the aforementioned medications. This will be punctuated with GP visits, physiotherapy visits for eye exercises, endocrinologist and neurologist.

My fibromyalgia has flared as I am exhausted. I stayed everyday of his week long hospital stay from 10-7pm. The weather was changing all the time as we are in our spring and I have had angina because the stress was mind numbing..

We are so very grateful that the stroke wasn't worse and we are praying believing that the eye nerve damage will sort itself out. Also we are praying that he doesn't have another stroke.

Mostly we thank the LORD for another chance at life together..