Better days are coming!

 

So yesterday my occupational therapist and her colleague came to give me a trial run of my new motorised scooter, similar to the one pictured here.

It has all terrain wheels and an hour's worth of charge, plenty for me to go visit my sister who lives nearby.

It is part of my Aged Care package and will make my life so much better since I can no longer drive.

This scooter requires no knee action which is great for me as that was the reason I can no longer drive.

Also my bath lift seat is coming in a few days and I am looking forward to that as well. I have bought some Magnesium bath flakes to soak myself in. I am hoping it will lessen my fibromyalgia muscle pain...

As far as hygiene and travelling independence goes, I can say that better days are coming! 

First we have coffee!

 

As you probably know, my twin sister is ill and has been living with us for the last five months.

She has now moved into her own new rented home and my son, her carer has moved in with her. She's in need of a carer.

Helping her has left both Chris and I spoonless and that condition is not going to improve any time soon. We have now found a new rented home two minutes away from them and the move is happening in a few weeks.

Although we feel the effort will be worth it, finding the spoons to move is a hit or miss thing. I must force myself to keep going.

I am suffering from an expected fibromyalgia flare, my knees are hurting and I cannot move my neck thanks to polymyalgia rheumatica. 

I am happy to be moving but not so good with the pain. But I pace myself taking frequent breaks and drinking endless cups of tea.

My kettle is constantly boiling for a cuppa and it is the first thing I do each day. I join millions of others in enjoying to lifting qualities of coffee or tea to start each day.

Like I read in a book, "First we have coffee!", it has proven to be true for me, only my lifting beverage is tea! 

Shanks as pony

So today I handed in my driving licence. Sitting here tonight, the enormity of my decision and resultant actions gave me pause to think.

The fact that I have torn ligaments in both knees meant that I no longer have enough strength to apply the brakes or accelerator. I have become a danger to myself and others.

With constant brain fog from fibromyalgia as well, I felt it was time to stop driving.

Vic Roads sent me paperwork to have my doctor and optometrist clear me to keep driving as I suffer from type 2 diabetes and that can effect the eyes.

I was going to get this done but then I realised that my eyes are not the only risk when I drive- my knees not working is as great a risk.

So instead of going to get my eyes checked, I decided to just stop driving. As I said, I handed my licence into Vic Roads.

And now, I am sitting wondering if I have done the right thing- yet I know I really had no choice.

There is always the option of walking around if I have no one to drive me somewhere... it is known as shanks as pony- using one's legs as the mode of transport.

Herein lies the problem with that- there is no shanks as pony, because I can't walk with torn ligaments that can't be fixed.

I hadn't thought much about it until now, but here it is- no driver, no car, no money- and sadly now, no shanks as pony!

My cactus sofa

                            

We all like to find a comfortable place to sit or lie down. You know, somewhere to put one's feet up and just relax. But I am finding with my fibromyalgia flaring and my spinal problems that this is not easy.

No matter where I sit or however comfortable a chair looks, it's usually uncomfortable. Take for instance the new computer chair I recently bought to solve that problem.

It looked so suitable on the website and I was certain it would do the trick, but when it was finally assembled, it was not comfortable and it seemed to aggravate my lumbar region, making my legs go numb.

As far as furnishings go, the chair wasn't cheap and like so many things I have bought to relieve pain, it is not being used.

The lounge suite with recliner ends can't be used either. The recliners are so hard to get in and out of. Thanks to fibromyalgia giving me muscles the size of sparrows' knee caps, I cannot operate the side lever to bring the recliner footrest out.

If Chris helps me with that, I also cannot get out. I have no muscle power in my legs, thanks to fibro again, torn knees, and spinal problems. The only good thing it's for is to lay on.

And speaking of laying- even my bed is hard to get comfortable in. With muscle pain at an excruciating crescendo by the end of the day, no matter how I lay, it feels like I am trying to sleep on a concrete slab!

I only have panadol osteo for pain relief as my doctor is very hesitant to give me any and I will not take Valium as a muscle relaxant. I was addicted to it for years as it was the first thing they gave me in hospital for my many weeks of traction for my Schuermann's Disease.

Fibromyalgia is a pig of a disease/syndrome. It rules my life and leaves me nowhere to turn off and seek some comfort. When you couple that with another malady such as my ankylosing spondylitis, it drives one over the edge emotionally.

As someone in need of some pain relief and her doctor too afraid to order it, I am seriously considering changing doctors. Until that happens, you will find me lying on my cactus sofa.

He's getting very rusty!

 

So I have been hobbling around with both knees paining me badly and hot as fire.

Last Wednesday I emptied the kitchen garbage bin in to the big wheelie bin for the rubbish collection. 

Wearing my nightdress and short dressing gown, I realised that if I bent over to pick up some of the rubbish that had fallen out, that my neighbours would probably get a good view of my bottom.

The remote garage door was up to allow me to pass behind the car, so I decided to be merciful to them and I bent at the knees to be more lady-like. Big mistake!

Both my knees popped out of alignment similtaneously and I actually gave a short scream! I staggered into the house and had a cry as I searched for my Tramadol which I keep for major fibromyalgia flares.

I  nursed my knees all week and they still are sore and hot and threaten to pop out of alignment at the drop of a hat.

It's hard to do much with knees that both have no ligaments to support them and no end in sight as surgery is too risky with all my co-morbidities.

So as long as I can keep shuffling I am OK but even so, it's more difficult by the day and I walk like Tin Man on the Wizard of Oz. Only now he's getting very rusty! 

 

I'm in love with my new maidservant

As you probably know, I cannot bend anymore. Thanks to back issues and torn knee ligaments, bending is a thing of the past.

I had a front loader and it was so difficult bending to load and unload it that I opted to sell it and buy a top loader.

As I am 4' 10", I have problems getting garments out of large machines, but I need one large enough to wash my doona and pillow in.

I ordered a 8kgs Haier machine and I am so pleased with it. It is large enough to wash bedding and yet small enough that I don't need a step ladder to reach inside it.

Muscle pain from fibromyalgia and polymyalgia rheumatica is lessened with washing with this new machine as I am not bending as with the older one or stretching to fetch a left over sock in the tub...

It probably is silly to some people that I post about my new maidservant, but it has saved me quite a lot of pain and expense. To wash bedding, I used to have to go to the laundrymat, which is very pricey these days.

It actually is a thrill to be able to add the leftover facewasher or something into the already started load and I love watching the clothes move smoothly around the tub. Unlike the front loader which just made me ill if I watched it too long...

I didn't realise how much I missed the simple pleasures of watching the clothes come clean. I guess you can say I'm in love with my new maidservant!

Helping ourselves

 

I need pain relief. My doctor's on holiday until Feb 9 so I had a phone consult with his doctor wife. I told her my pain is currently off the charts with fibromyalgia, polymyalgia and both knees paining me badly. I asked for a prescription for Tramadol but she said for me to wait until he comes back!

Too long to wait when you are blown away with pain. So I am going to take some Prednisolone for a few days. I have some in the house.

How is it that people with genuine pain issues who rarely ask for help, are regarded with suspicion and treated like a druggie? it's not fair... 

Sometimes you have to go against the medicos and do whatever gives you relief.. (as in taking Prednisolone for some relief) People who are chronically ill and in pain have been known to commit suicide... I can understand why- not that I am going to... just sayin'

We are judged so harshly because of those who rort the system and abuse the drugs.. We have to be our own doctor and help ourselves.

Ya gotta laugh

                                             

I got some of things I wanted to do done, but alas, it came with a cost. I have another flare of fibromyalgia.

I can hardly move and hurt everywhere. It doesn't help that we have thunderstorms on the horizon  either. So today I have only washed my dishes and I will cook dinner. It's all I can manage.

All our bedding is washed and dried and when our cleaner comes Monday, she will put more clean sheets on. I just did the minkie blankets and our doonas.

I must say that drying the minkie blankets in the dryer has given them a slightly grey tinge, but they are still soft and smell great. Most importantly, they are clean.

My plan for the remainder of the day is to cook bangers and mash for dinner. I will take some Tramadol because my knees are hurting as well as the usual fibro pain.

Xena was outside for a bit and was attacked by a horrible Siamese cat who stalks her. I ran to help her and damaged both my sore knees. I am in too much pain to get down the steps and walk to the back garden to pick up my slipper that I threw at it. 

That Siamese cat didn't want to budge and would not leave the back garden. He's stubborn and has worn out his welcome. Much like my meniscus pain in my worn out knees: joking.  Ya gotta laugh. 

Hear me roar

So I have a bad habit of leaving my dishes until I feel like doing them. This is a big mistake because we all know that they multiply overnight and in the morning you cannot find the spoons to do them. So you don't.

Eventually you run out of dishes and knives and forks and of course, pots and pans. You work harder by having to scrub really dried on food. It's a drag.

So the other day I woke up and decided that this would be the day I washed all those dishes and cleaned my kitchen. With both my knees with meniscus tears, I doubted I would be able to accomplish this.

Anyway, in stints of about 15 minutes each, I managed to knock over the dishes and clean the kitchen. It was a novelty to see the benchtops clear of dishes and I pinched myself to make sure I was seeing the empty draining board and not imagining it.

Life has been tough lately with torn knees, sciatica and fibromyalgia flaring. I haven't been able to stand much and my muscle pain has been horrible. But I did it! 

To 'normals' reading this, you probably will be thinking it's no big deal- it's doing the dishes. But to me it's like climbing a mountain or going on a 30 mile hike. That's how my body reacts.

To my Sacrificial Home Keeping Sisters, you will be rejoicing with me because you know how even a seemingly small task can feel like a marathon.

It was a marathon and I won! you can't believe how extremely proud of myself I am feeling right now. And relieved. It's nice to prepare a meal in a well organised and clean kitchen. 

I am savouring the moment and don't care if you are laughing at me! I can do anything! 

I am woman-hear me roar! 

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! 

More than just 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 really like 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! 

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!

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.

On my cactus sofa

We all like to find a comfortable place to sit or lie down. You know, somewhere to put one's feet up and just relax. But I am finding with my fibromyalgia flaring and my spinal problems that this is not easy.

No matter where I sit or however comfortable a chair looks, it's usually uncomfortable. Take for instance the new computer chair I recently bought to solve that problem.

It looked so suitable on the website and I was certain it would do the trick, but when it was finally assembled, it was not comfortable and it seemed to aggravate my lumbar region, making my legs go numb.

As far as furnishings go, the chair wasn't cheap and like so many things I have bought to relieve pain, it is not being used.

The lounge suite with recliner ends can't be used either. The recliners are so hard to get in and out of. Thanks to fibromyalgia giving me muscles the size of sparrows' knee caps, I cannot operate the side lever to bring the recliner footrest out.

If Chris helps me with that, I also cannot get out. I have no muscle power in my legs, thanks to fibro again, torn knees, and spinal problems. The only good thing it's for is to lay on.

And speaking of laying- even my bed is hard to get comfortable in. With muscle pain at an excruciating crescendo by the end of the day, no matter how I lay, it feels like I am trying to sleep on a concrete slab!

I only have panadol osteo for pain relief as my doctor is very hesitant to give me any and I will not take Valium as a muscle relaxant. I was addicted to it for years as it was the first thing they gave me in hospital for my many weeks of traction for my Schuermann's Disease.

Fibromyalgia is a pig of a disease/syndrome. It rules my life and leaves me nowhere to turn off and seek some comfort. When you couple that with another malady such as my ankylosing spondylitis, it drives one over the edge emotionally.

As someone in need of some pain relief and her doctor too afraid to order it, I am seriously considering changing doctors. Until that happens, you will find me lying on my cactus sofa.