More than a place to sleep

Recently someone asked why do we make our bed? I gave it some thought as I have recently been making my own bed daily, in spite of regularly going back into it for a nana nap. Here's a few thoughts on why I use my precious spoons to make my bed.

Physically its more comfortable to sleep in. 

Psychologically its more inviting.

It makes the room visually more esthetically pleasing.

The bed's the centrepiece of the room like in a painting. 

It gives the illusion of order and calm.

It uplifts my spirits when I come into my bedroom.

With fibromyalgia, angina and back problems, I make mine but often get back in it. So I remake it.

When I make it, I don't get on my knees as they are broken and I do not do hospital bed mitred corners. I pull up my top sheet, then turn back the minky blankets. With arthritic hands, the only tucks I do are at the bottom of the bed to secure the bedding...

But, being honest, I sometimes let it go when I have a fibro flare- being satified that the sheets and bedding is clean. But the majority of times, my beds are made. 

Beds are more comfortable made up or at least straightened and are more than a place to sleep.

It still is what it is!

You may remember me telling you that I bought a bath chair lift so that I can have a bath. I was so overjoyed when it came.

Unfortunately it didn't work out for me and I only used it twice before I sold it. It came down to awkward plumbing and knees that don't work anymore. 

To say I was disappointed would be an understatement, not only disappointment that I couldn't bathe but also for the fact that it cost me $870AUD.

It was still immaculate and under warranty so I decided to sell it. I did after a couple of weeks, but I sold it for only $400AUD with ebay fees of $53.90 so I didn't make much back on it. 

On the bright side though, I did find that the shower in the main bathroom has an easier accessible shower stall and better water pressure than the ensuite one. 

And speaking of showering, I have purposed to have it at night now due to my spoons being scarce with my latest fibromyalgia flare. It doesn't matter so much if I run out of spoons if I am on my way to bed anyway.

Victoria has been experiencing very wild weather with lots of rain and thunderstorms. The pain in my joints and muscles gets too much to bear at times and I find I am needing to take a Tramadol some days.

 I haven't been spending much time on the computer for this reason as Tramadol makes me feel spaced out and I can't focus to write properly. Like everything to do with fibromyalgia, it's a tough task master and a tyrant, but it is what it is! 

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! 

A nasty dictator

 

Yesterday was a very busy day and I am feeling the after effects now. My fibromyalgia is flaring and the pain is incredible. 

Dianne my daughter was not able to get the staples out from her total knee replacement because the doctors and nurse said a week out of surgery is too early to remove them- especially on a bending joint. We had to reschedule to next Thursday. 

Then I was not allowed to accompany her into physio because I am not vaxxed against covid. So I helped her return her hired crutches-(she has her own) and left. 

I accompanied her teen son into his counselling appointment, talked to the psychologist as he is a new patient, then left them to discuss things. 

It was so much walking and in and out of cars that my own knees were quivering. Di's pain level was off the charts as it is difficult to get in and out of our car- it is high. She begged me to not undergo knee surgery myself. (I have both knees with torn ligaments) She didn't have to beg much. I don't like pain.

Today I am just resting and making a stew in my slow cooker. That's the best I can do today. Fibromyalgia is a wicked task master and a nasty dictator. 

We love our new house

 

I pushed myself today to do some work and unpack. I know it's not the best thing I can do with a fibromyalgia flare, but I need to get my home organised. We are about two-thirds unpacked. 

But of course the cooking, cleaning, dishes and washing have to be kept up and I managed to get the kitchen cleaned and a load of washing done. 

My daughter Dianne came home from hospital after her knee replacement. She's doing really well, praise God. 

Chris isn't feeling too great so I have to wait for the heavier things to be unpacked. We really like our new house.

I can hardly wait!

 

As most of you know, I have both knees injured with torn menisci and ligaments. Showers are difficult as it's hard to stand. 

I find myself grieving the loss of independence and the ability to take a bath. So it was with great joy that I found this The Aquatec orca bath lift a bath lift for getting in and out of the bath. 

We went to the Mobility Aids shop and I bought one. It was $875AUD including delivery of $70. It will be delivered this Friday. I am overjoyed.

I know it is expensive, but I figure it will be worth every cent. Plus you can pay it on Afterpay. And Chris will also be able to use it so that's good for him as well.

At the end of a fibromyalgia filled day or a day of back pain, a bath can be so comforting. I can hardly wait! 

Chipping away at the stone

So my fibromyalgia is back with a passion, making every muscle ache. I tried to take a bath a couple of days ago and I had great difficulty getting out. I had to use a pillow under my knee and I had no other option than to lean on it to get up. It was so painful and the consequences are enormous.

I know I shouldn't have tried with both knees with torn menisci and other ligament damage.  I was in so much pain that I longed for a bath to hopefully relax my muscles. It didn't. Nor did it help my sore neck with another episode of polymyalgia rheumatica.

This constant pain is wearing me down. My doctor is too afraid to give me pain relief and I am considering changing doctors. This creates anxiety in me. And to top it all off, I have been cranky and not really a nice person to be near at the moment.

With Chris ill himself, I seem to be carrying everything myself with no help in sight. Take this morning for example. I put on a load of washing, cleaned Xena's litter tray and unloaded and loaded the dishwasher.

Testing our blood sugar level before breakfast,  I asked Chris what he wanted for breakfast. He told me what he wanted, just sitting there waiting for me to get it for him. I am sorry to report that I arced up and told him to get it himself.

I added some other truths about him acting like he's the only one with pain and that I am tired of being his servant when all he does is watch TV and sleep all day. You gotta understand, that usually this isn't an issue, but the pain has truly worn me down.

Chris asked me what I had done so far this morning. I told him and he replied that it isn't necessary to push myself like I am doing. Push myself? Doing minimum household chores?

I told him I was just trying to live a normal life and he replied, "But you aren't normal! You have got to realise that and accept it!" But in fact, what I do is pared down to the bone housekeeping compared to what it was even 10 years ago. How much less can I do and still manage to live a relatively clean and organised life? Single handedly.

Over the 23 years of having fibromyalgia I have had a determination like stone. I would not let fibromyalgia or indeed any of my other painful conditions control my life. And for the most part it hasn't. Until today. It's chipping away at the stone.

We have gone mad!

It may seem strange to some, but even in the worst pain, you will find me playing Candy Crush in an effort to distract my mind from the pain.

The rheumatologist suggested to my daughter who suffers from fibromyalgia and pain post chemo, to use it as a distraction from the pain. She was one of these mind over matters kind of doctors. We were not very optimistic to be honest.

As a sufferer of not only fibromyalgia but ankylosing spondylitis, spinal canal stenosis coupled with bad arthitis and angina, I thought it may help me. It helps a little. But Tramadol would be better!

My doctor won't let me have them. Even though he knows I only take them as required for high pain days like today.   He gave it to me when my second knee tore and it helped my fibro pain so much. Then he closed shop!  

I  know there have  been many who abused pain-killers but when  basic pain relief is available only with a chemist's approval such as Panadol with codeine, it makes life more difficult for the person like myself,  to get any relief at all. 

With fibro flaring and another episode of polymyalgia rheumatica, I have been tempted to take some of my Prednisolone, but I am worried about the side effects. I tell you truly, I am feeling desperate.

So even though you may see me playing Candy Crush or online a lot, I can honestly say that it's for  medicinal purposes. I will be a Candy Crush addict any day if it will relieve the pain.

Just don't tell the do-gooders. If they think we are liable to become addicts, they'll make FB take it off their site! You fellow pain sufferers know they will. We have gone mad in our correctness!

The downside of country life

So  the other night I was going into my bathroom when I noticed this huntsman on the frame near the door. My heart nearly stopped!

Walking into the bathroom, I must have passed close to this horrid spider who could easily have jumped on my head and such is my fear of spiders, it possibly would have killed me in a cardiac event brought on by fear!

Not an overly big spider by huntsman standards, he would have been about 3 inches across. But he was big enough to induce panic in us as we scurried to find a broom and the fly spray!

I didn't want to lose this guy as we wouldn't know where we would find him, so there was a great over use of flyspray and frantic loud bangs of the broom. Suffice it to say, he got a burial at sea!

It is said that they come in pairs, so we were watching everywhere until his mate was found. And she was...

I was in the adjacent laundry and found her sunning herself on the glass panel in the back door. I grabbed my flyspray and went to spray it, but then realised that she was outside the door. She too had to be gone because I didn't want her coming in the house. I'd had enough excitement with her mate's intrusion.

A few sprays of the flyspray had her on the move, and a few heavy thumps of the broom, and she was no longer. Except for food for the birds and ants. 

Indeed, I had to chuckle at how fast I moved, considering my two damaged knees and fibromyalgia. It's marvellous what an adrenaline rush can do for a body! 

Not only did the fear of losing the huntsman to perchance come back to terrorise me, rattle me, but so did realising that I had married a man who refused to rescue me from dangerous wildlife! Such was my expectation of my knight in shining armour! :)

Don't get me wrong: I still love living here in the Australian bush with my liver-lilied Chris,  but snakes and huntsmen are definitely the downside of country life.

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. 

My new wheels

                                               

So if you have read on my other blog, I am now wheel-chair bound. I am relieved that I have an easier method of transportation and that it will be easier for Chris to push, but I am also sad that my life has come to this.

So, the MRI results are in. I have a meniscus tear, fabella, torn posterior crucius ligament, bursitis and osteo arthritis behind the patella. It needs surgery as it does not repair itself.

I am to see an orthopaedic surgeon and meanwhile I must rest the knee and use pain killers. 

We have bought a shower chair and a wheelchair. I have had Chris push me on the seat of my walker, but it is a big strain on his heart and I worry about him. 

It is difficult to focus enough to write at the moment and I spend a lot of time on the couch aka the beach, or in bed with my electric blanket.

I am just able to stand enough to wash some dishes, cook a meal and stack the washer and dryer. Chris helps sometimes and has been my legs.

I am making use of the slow cooker a lot, cooking the meals as I am able to stand.

As with all new health issues, I am trying to come to terms with this "new normal" and the constant struggles with fibromyalgia are now "normal" and this new challenge is calling for all my ability to accept my new lot in chronic illness.

I am disheartened that both my knees have now given way (I have a torn meniscus in my other knee), and am trying to feel grateful that I could afford a wheelchair. Thank goodness for afterpay.

I am trying to be thankful for my new wheels, and I am also trying to give this new situation over to the LORD. I guess it's all a part of grieving what I have lost and accepting it, and not giving way to self-pity. It's hard.

However romantic a picture I can find really doesn't cut it for me as I struggle to accept that I am now wheelchair bound, and instead of a new car, a wheelchair is my new wheels.

© Glenys Robyn Hicks

My flesh and my heart fail; But God is the strength of my heart and my portion forever. Psalm 76:26