When you got no spoons everyone has to help!

So my respite from pain has come to a sorry end. I have been hit with the Mother of all Flares. Just breathing is too much effort and sleep is brief and light. The truck that hit me didn't even stop. 

I have been pacing myself majoring on keeping the dishes and the washing up to date. It hasn't been too difficult really as I have planned in advance for the inevitable fibromyalgia flare that comes after a respite.

Most people who don't suffer from fibromyalgia would call me a pessimist, but we Fibromites know how fickle our body is and how greedy it is for spoons. We never can have enough spoons to say we are energetic. Spoons are energy measures

It's enough to have enough spoons to take a shower some days, and we usually suffer after for it in spite of the pride in ourselves that we made the effort and did it..and the luxurious feeling that being dainty brings.

No, we are realists who accept that our bodies are treacherous. They lure us into a false sense of joy in a seeming abundance of spoons- well enough spoons to make us believe that we can change the sheets, bake a cake, vacuum the lounge room or go shopping. In real life shopping, not just on the computer.

Knowing better really, but delirious in the freedom that a few spoons brings, our joy knows no bounds and we actually dare to live like we did before Fibro claimed our lives, bodies and joy. And we keep living in the moment full of joie de vie until the joy and spoons are gone.  

No, I knew from 20 years experience that my respite from pain would be short-lived and it was.  But because of planning for it, it hasn't seen me in a total mess, overwhelmed with meals and mess.

I had my dishwasher and I kept up with the dishes. I did a load of washing a day and I dried it in the dryer. But my greatest life saver was my frozen dinners I have in the freezer. They saved the day.

In all honesty, though I haven't kept the house running smoothly all by myself. I have had to enlist Chris to help me with stacking and unstacking the dishwasher and I asked him to put his own clean clothes away as soon as they came out of the dryer.

He has been really good actually- a blessing really. He also encourages me to take a nana nap, and feeling so fatigued and sore, I am so glad. We all need a hand when we are feeling so wretched and when you got no spoons everyone has to help! 

Do you find that too?

We are in need of haircuts but it is such an ordeal getting out that I placed a query online in our local group on FB and a hairdresser who comes to the house pm'd me. 

It will be nice to have my hair styled short. Not sure what to ask for- I can't have a fringe or hair on my nape because with fibro, I itch too much and scratch my skin...

Fellow fibromites,  do you find that too? 

Making hygiene fibro friendly

                                         

I have been ill with fibromyalgia for about twenty years now. In that time, lots of things have changed, and one of them is my personal hygiene routine.

One would think that taking a bath or a shower would be an easy thing to accomplish, but if you suffer from chronic fatigue, fibromyalgia, back problems or angina problems like I do, you would realise that it consumes a lot of your spoons. So I had to do a bit of rethinking of my daily routines. I've discovered that one of the places that takes a lot of my spoons is the bathroom.

Because bathing and drying and dressing exhaust me, I varied my time in taking a bath depending on how well I feel. If I have enough energy, I would bathe in the morning, if not I would take a shower before bed as Chris is home and he helps me get dried and into my nightie. (When you are chronically ill, you quickly get over being humbled by needing assistance- you are grateful for any help available.)

I have found that if I take a bath or shower in the morning I am left with no energy for the rest of the day. If I take my shower at night, I have just enough energy afterwards to get myself to bed, which works out much better.

Hot baths or showers leave me too exhausted and give me angina pain, so I take showers with only warm or tepid water. While I would prefer to shower every day, showering is best done every other day for me to avoid flare-ups of pain, fatigue and soreness. I have decided on some new course of action to make time in my bathroom more fibro-friendly.

One of the first things I changed was how I take a shower, or rather, the position in which I shower: sitting. Here I find those telephone type showers are useful. When I get out of the shower, I sit down to dry off.

I can no longer blow dry my hair so by necessity my hairstyle has been wash and air dry for years now. Time in front of the sink brushing my teeth or washing my face has been modified by resting one foot on a stool while standing. Because of spinal problems and being a short person, I have a glass in my bathroom which I fill with water and use for rinsing and cleaning my toothbrush without straining to reach the tap.

I no longer wear makeup, the standing in front of the mirror and the use of my hands in holding the various tools of the task, is now limited to special occasions only; it is too painful a task to do on a daily basis. Also, my face is so sensitive that it breaks out in red welts at the slightest pressure... which includes smearing on foundation. This is called dermagraphia.

The bottom line is taking a shower is a real workout now. In addition to modifying how I take a shower, I am going to follow these 3 rules: I will only take a shower at night, I will only take warm water showers and I will only take a shower every other day. With the employment of a good deodorant after each shower and a fresh change of underwear each night and morning, I have found that I don't offend anyone and remain feminine and dainty.

Life with chronic illness is complicated, but at least I manage to stay clean while living it!

© Glenys Robyn Hicks

So teach [us] to number our days, that we may apply [our] hearts unto wisdom. Psalm 90:12

I need him awake and aware

 

I was a bath a day girl all my life. It just was so nice to soak and think of pleasant things as the warm water soaked away the aches and pains of the day. This was great until my knees packed up and I couldn't get out of the bath.

So obviously the next thing to do was to become a shower girl, and that worked for a while until fibromyalgia took over my life and sucked my spoons dry. I simply had no energy after a shower but that wasn't the worst of it.

No, the worst of taking a shower for me has now included panic attacks whilst in the cubicle. I am so unsure of my knees being able to hold me up that I hyperventilate. Not good when you have limited oxygen in the first place thanks to a hole in the heart and asthma.

I have tried all the hacks for taking a shower safely and peacefully: I have a shower seat, I turn the exhaust fan on so that the steam isn't too bad, I do not have the water too hot. But it doesn't really help much. 

Once the adrenaline takes over and my breath is cut short, the angina kicks in and my heart pounds like a sledge hammer. So I try to not have water running over my face as this sets the panic mode off.

I have managed to shampoo my hair with my back and face away from the stream of water and I have a very quick wash routine so to ensure my ordeal has been successful as well as quick.

In the old days, Chris used to help me shower, but alas, with his heart failure and chronic fatigue, he has enough trouble showering himself and I don't want him exerting himself on my account.

I have got a shower down to a reasonable time and I can be in and out in 10 minutes- out as in dry, powdered and in my PJ's. All I have to do is dry and brush my hair.

Because my spoons fail me really quickly, I brush my teeth before the shower and have my ablutions at night. I can just stagger to bed if need be. And sometimes it is needed- a shower in the daytime can knock the wind out of my sails for the entire day at times.

I admit it galls me that all my little pleasures like bathing and showering make me feel like I have run a a marathon, but it is what it is. What was a routine like breathing every day is now planned with precision around Chris's sleeping pattern. I need him awake and aware in case I fall. 

The spirit is willing

 

So I decided to take a bath today. No mean feat when one is chronically ill or disabled. It turned out to be a big mistake.

Chris helped me get into the bath as it's pretty high. I no longer have my bath lift  so that made things a bit harder again.

It was so difficult to make my knees bend enough to sit down in the water, but when I finally was in, the water was so soothing. I lay there for about 40 minutes, just luxuriating in it.

The loofah did a marvellous job of exfoliating my body and once again, I was so glad to actually be able to bathe.  Then came the hardest part: getting out.

I tried every way to get out without kneeling on my sore knees, but in the end, I had to. There was no other way. It hurt like crazy!

Today my knees are aching and it is with sadness that I realised-(not for the first time) that it will have to be showers from now on for me.

I have no painkillers here so I am just taking paracetamol... which is pretty much useless for strong pain.

So I have made a short list today for chores I want to do.

I have put away the online groceries that came this morning.

I have done a load of washing that is in the dryer.

I have a slow crocker full of pork sweet and sour rice for dinner tonight.

After all these years of chronic illness, mainly fibromyalgia and shuermanns disease, I think I have worked out how many spoons I can save during a bad day.

As it is written," The spirit is willing, but the flesh is weak!" Matthew 26:41  Indeed it is! 

We need to talk

So I am aging, overweight, have had over 50 kidney stones and 5 surgeries to remove them when they were impacted, and have given birth to 6 children.

Because of this, I used to find that a sneeze could have disastrous results, causing me embarrassment and discomfort as I wet myself. So much so, that I went to a physiotherapist who taught me how to exercise my pelvic floor using Kegel exercises.   They helped me quite a lot.

Nothing else has changed - one cannot change the past- but the only difference was my consistent Kegel exercising. This is for men as well as women, I was told. Anyway, I recommend them to everyone who has stress incontinence.

However, as much as Kegels have helped me, I have noticed that when I am in a flare of fibromyalgia, often I rediscover the joys of stress incontinence. 

It seems to me that fibromyalgia weakens my muscles in my pelvic floor and causes lack of control of the bladder. Just another problem fibro brings that many don't recognise or talk about.

I have purchased some undergarments that absorb urine yet look like normal underwear  I wear them when I am in a fibromyalgia flare, and they do a great job. (There are similar ones for men) It seems lately as I am in almost a constant state of flaring, that I am wearing them more often. 

It's just another pain for us Fibromites to endure, and I hope by sharing about this, it helps you if you have the same problem. It's nothing to be ashamed of and it's something we need to talk about.

Take me as I am

Over the course of a 57 year old friendship, I have always made sure my house was clean and presentable when Ann came.  Not that she was judging me at all- it was just how I rolled.

Once fibromyalgia came to overshadow me and steal my spoons over the last 22 years, she and I made a pact that we would visit each other no matter what state our home was in. Or else it would never happen.

As we grew older, we realised that things like neat houses sometimes were very scarce, and we agreed that visiting each other was too important to us than worrying about our homes' presentation. So we chose to each be hospitable and not worry about the extraneous.

Since developing fibromyalgia, I have had to rethink my own standards of cleanliness. My standards now are in order of priority and are non negotiable:

A clean body. 

Clean bed.

Clean clothes.

Clean dishes and kitchen.

Clean toilet and bathroom.

With no spoons during most days of a flare, it has been imperative that I reassess what's truly important in my life. God, family and friends were an easy choice. But not just any family and friends, I prefer kind,  like-minded people like Ann, who just takes me as I am.

I need him awake and aware

I was a bath a day girl all my life. It just was so nice to soak and think of pleasant things as the warm water soaked away the aches and pains of the day. This was great until my knees packed up and I couldn't get out of the bath.

So obviously the next thing to do was to become a shower girl, and that worked for a while until fibromyalgia took over my life and sucked my spoons dry. I simply had no energy after a shower but that wasn't the worst of it.

No, the worst of taking a shower for me has now included panic attacks whilst in the cubicle. I am so unsure of my knees being able to hold me up that I hyperventilate. Not good when you have limited oxygen in the first place thanks to a hole in the heart and asthma.

I have tried all the hacks for taking a shower safely and peacefully: I have a shower seat, I turn the exhaust fan on so that the steam isn't too bad, I do not have the water too hot. But it doesn't really help much. 

Once the adrenaline takes over and my breath is cut short, the angina kicks in and my heart pounds like a sledge hammer. So I try to not have water running over my face as this sets the panic mode off.

I have managed to shampoo my hair with my back and face away from the stream of water and I have a very quick wash routine so to ensure my ordeal has been successful as well as quick.

In the old days, Chris used to help me shower, but alas, with his heart failure and chronic fatigue, he has enough trouble showering himself and I don't want him exerting himself on my account.

I have got a shower down to a reasonable time and I can be in and out in 10 minutes- out as in dry, powdered and in my PJ's. All I have to do is dry and brush my hair.

Because my spoons fail me really quickly, I brush my teeth before the shower and have my ablutions at night. I can just stagger to bed if need be. And sometimes it is needed- a shower in the daytime can knock the wind out of my sails for the entire day at times.

I admit it galls me that all my little pleasures like bathing and showering make me feel like I have run a a marathon, but it is what it is. What was a routine like breathing every day is now planned with precision around Chris's sleeping pattern. I need him awake and aware in case I fall. 

My daily homemaking chores

So that we won't live in a pig stye, I try to keep to this schedule no matter how I feel. It is based on Sharon White's Legacy of Home blog.  I often read through this to motivate me, but for really fibro brain fog days, I have highlighted the chores for quick reading. I have modified it a little for my own home...

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 THE BLINDS AND LIGHT THE LAMPS.  BLOODS JAB MEDS 

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. SHOWER OR BATHE 

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.

The only positive thing for spoonies

I was talking to my daughter this morning. She also has fibromyalgia. She asked me what plans I had for today and I told her I was planning to take a shower.

We laughed at how ridiculous that sounded and then we realised that once again, it's all about spoons and being organised.

Given the nature of fibromyalgia, one can never plan anything until we wake up each day, and then it is entirely dependent on pain and energy issues. 

We can never be spontaneous, but have to weigh up the need or desire to do something against the reality- having enough spoons to see us through the day.

If one thinks there just may be enough spoons to go somewhere or do something, we then go in to planning mode. We may cook dinner in the slow cooker instead of preparing something at the end of the day.

Perhaps we will go to a doctors' appointment and must organise our day with the idea that dinner is taken care of via the slow cooker and the bed will be inviting and will be calling us as soon as we get home.

We become experts at planning our lives as we go, and despite fibro brain fog, we usually can think on our feet as to what would be possible on any given day. Today I am making a slow cooker stew for dinner and saving my spoons for that shower. 

I really hate being ill, and I can't think of any positives about fibromyalgia and other trials we spoonie friends have to endure. But the one (the only) thing I can think of for us is that chronic illness has made us masters of organisation and planning. 

I just want to stay in bed!

So today I woke with everything aching and no spoons. Yes, another flare of fibromyalgia. Actually, I am pretty sure my body is permanently flaring, it's just a bad day. Another one.

Everything within me says that I should stay in bed, but today is our grandson's birthday and a BBQ has been organised. I simply have to go.

So far, I have showered, dressed and breakfasted. The shower almost killed me this morning. The water felt like thousands of needles pricking my sensitive skin and it was a real effort to raise my arms to wash my hair.

I was so worn out by the end of my drying off that I had to lay down for a bit. Dressing came much later, as did taking our bloods and administering Chris's insulin injection.

We have to leave soon and we are fortunate in that our hosts live close by. A long drive today would be too off putting and we usually love going on long drives. But not today.

When we get home I will be doing a light dinner for us and that is all. It has to be. And I have to be content with that.

Fellow fibromites will know that when you have no spoons, even breathing is an effort. If it wasn't for making memories today, I would be content with posting this and going to bed. I just want to stay in bed! 

 

Grieve and move on!

When confronted with the diagnosis of a chronic health condition like fibromyalgia, we can often grieve for the stronger, healthier person we were before it and it's like any other form of grief. 

We are angry, we bargain, we accept it, we move on. The hardest part in moving on is linked with acceptance: we have to find our new normal. 

I find there's a period of anger and denial, then acceptance. And it varies with each of us.  

Acceptance is the pathway to moving forward. So it is critical that we come to acceptance by focussing on what we have left, rather than what chronic illness has taken away from us.

As in all grieving, no one can say how long it will take us to come to acceptance, but it must come so that we can find our new normal and live our new life in that new normal.

What chronic illness takes from us is more than the physical. But even so, despite feeling down emotionally, we should and must focus on what it hasn't taken.

I have days where I still mourn the loss of basic abilities like home cleaning, showering and walking far. Today is one of pain with fibromyalgia to the point that I can't straighten my fingers and even my eyes ache.. 

My to do list today is not big, but it. is. what. it. is.

• Clean the kitchen
• Cook dinner
• Shower sometime before bed

Feeling nurtured

So as you know, I have been under the weather with my fibromyalgia and angina. No amount of determination and desire can call my spoons into action. I cannot function well at the moment. No matter what.

I have succumbed to false guilt, but after a heart to heart with Chris and some Quiet Time with the LORD, I feel a little better.

Having Chris bring me in some tea this morning and his offer to vacuum today has brought a smile to my face. I feel nurtured when he pitches in to help me.

I will be taking some Paracetamol soon and he has promised to give my feet and legs a massage. He gently massages my swollen ankles upwards towards my heart. It helps my weakened heart, and after I find that I can bend my toes and move my feet again. But usually it just makes me sleep. I am always glad to have a nana nap.

The only thing I am going to do today is make fish and chips in the air fryer. I will serve them with salad for dinner. 

Being a chronically ill wife, I sometimes worry about how Chris feels. It must be tedious for him, but when I mention it, he waves his hand and says it's all part of the job of being a husband... and he sure has me feeling nurtured.

It's not rocket science

Yesterday I wrote a post in my other blog about practising good hygiene like the Jewish people do. 

I really believed most people washed their hands and cleaned their homes on a regular basis. However,  with the shortage on hand cleaners and anti-bacterial soaps in supermarkets, it would seem that no one much has this stuff on hand like you would expect in a home where good hygiene was practised daily.

Simple measures like outlined in yesterday's post, sneezing or coughing into your elbow and avoiding large crowds will go far in not catching or bringing illness to your home.

I always have the antibacterial spray Glen 20 at home. I regularly spray it near Xena's litter tray and around the toilet floor, especially behind and on the seat. Sometimes I spray it on door handles too and I wipe my computer mouse and mobile or cell phone with antibacterial cloths in sachets.

People are panicking about catching the Corona Virus, but are lining up en masse at Cosco's to purchase toilet paper. This to my mind enhances the chance of catching something like the ordinary Flu that really has killed more people worldwide than the Corona Virus.

We are likely to stay well with simple hygiene measures. It is not rocket science.

Today's to do list is:

1. Clean my kitchen
2. Do some washing
3. Vacuum the middles of the floors
4. Feather dust
5. Cook a lamb stew for dinner in the slow cooker

No need to panic

So there have been a few cases of Corona Virus here in Australia. People have panicked and supermarket shelves here are running low on bottled water and toilet paper. Knives have been  pulled on people over a dispute on toilet paper. There have been stampedes. 

There is no need to panic. For starters, one- we have a very good health care system that can cope with helping anyone who succumbs to the virus and secondly, according to statistics, we have more of a chance of catching the common flu as we do of contracting and then dying of the Corona Virus.

I think the news is to blame, exaggerating and fear-mongering. It is no wonder there's panic in the ranks.  We won't be stock piling. But we will be following normal precautions by avoiding large crowds, airports and even shopping centres. We will shop online. And we will wash our hands frequently. It's just basic hygiene really.

With how I am feeling at the moment, with the fibro flare not over and constantly tired, staying home and shopping online will be the norm for us anyway. But in all honesty, we are not panicking.

My list of to do's today is basic:

1. Follow Thursday's List  
2. Do a 15 minute stint on FlyLady's Zone
3. Cook a stew in the slow cooker for dinner