It's a double whammy!

I am flat out resting today, trying to cope with the pain of a flare of fibromyalgia and polymyalgia rheumatica.

Honestly, it's hard enough coping with fibromyalgia flares, let alone PMR as well. And to make it more difficult it's Easter and there are no doctors available, and it doesn't seem to be urgent enough for ER.

Usually PMR fizzles out after about 5 years, but I have had it on and off for 20, often at first mistaken for fibromyalgia. 

My doctor told me that often it leaves the sufferer with neck and shoulder arthritis, but rarely, it can last a lifetime. Lucky me.

The treatment for PMR is prednisolone but I am wondering if I should take it without my doctor's permission. I have to remember that it elevates my sugars and they have  already gotten higher without it.

After a miserable night's sleep, I took a Tramadol which has helped a little. I took paracetamol as a baseline.. I will most likely have a nana nap soon.

The fibromyalgia is making my knees and back ache and where that lies off, my neck and shoulders and jaw with pounding headache take over thanks to the polymyaglia...

All in all, I am a mess and tired of feeling like this... PMR and fibro are bad enough separately, but this is the worst of all- a double whammy! 

It was good while it lasted!

So yesterday I woke up without the usual muscle pain and fatigue that characterises fibromyalgia.

I sensed that I had some spoons in abundance and I was in a quandary as to how I could best utilise them without giving myself a flare the next day.

I decided it would be sensible to pace myself which is what I did at first... I say at first because like all good intentions, they can fall by the wayside. And they did.

There was so much I had put on the back burner and left undone. But then it was a long time since I had any energy and to be honest, I was so used to living with chronic illness and fatigue that feeling energised seemed "abnormal"

So I started a load of washing and cleaned out Xena our cat's litter tray. Then I hung out the finished  load of whites... also something I have had to forgo due to no spoons and pain.

I rummaged through the fridge and cleaned out the out of date food. Then, remembering to pace myself, I made a cup of tea for us both and decided we needed some cookies to have for afternoon tea.

After I made a batch of cookies for the afternoon, I brought in my washing. It dried quickly because the weather has been rather warm.  Too warm in fact.

By the time I came back inside, I was wilting. My spoons were dissipating! Quickly! 

My muscles and back started paining me and it hurt to turn my neck thanks to polymyalgia rheumatica.

I left the clothes in the laundry trolley and kissed thoughts of ironing my pillow cases goodbye. I had so wanted to do that too... just one of the jobs that I had to put on the back burner, put back again..

Chris made me a cup of tea and I took some Tramadol. I only use them for top of the range fibro flares and knee pain.

As I sat sipping my tea and waiting for the Tramadol to work, I realised that I hadn't got much done in spite of some spoons. 

Xena had a clean litter tray. We had some cookies to wash the tablets down. The fridge had no science experiments but didn't get a thorough clean. And I hurt so badly for so little! 

If I ever get another day with some spoons, I will not bother to hang the washing out... I nearly always use the dryer since fibromyalgia found me. And I know my poor old broken knees will thank me for not walking so far up the back garden to the line.

I guess I can sleep on unironed pillowcases.. it has been known  to happen! And as the pain relief finally kicked in, I decided that you can't really win with spoons. They are devious little dictators!

Chronic illness is not for wimps and I refuse to give in to depression. I think all things considered, I do a reasonable job of keeping our home nice. 

Still it was great to wake feeling refreshed and alive! It was good while it lasted! 

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! 

 

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. 

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!

I just have to pursue it.

 So with a horrid year last year, I was quite happy to see the end of it. I messaged my friends and family and wished them a happy new year, then turned my phone off and went to bed.

It was only 11 o'clock, but I was exhausted and had no spoons left. The weather was really warm and I decided to forgo my electric blanket. With the help of a Tramadol, I managed to quell my fibro and back pain and soon fell asleep.

I woke up at 2am and realised that it was January 1st. Not that it makes much difference what year or day it is- for Chris and I one day is much the same as another. We stay home mostly.

This year, I am training myself to live in the moment. That's all we are promised anyway. I have worried about what lies ahead this new year, but I am going to stop thinking too far ahead.

I plan to read more of the Bible and saturate myself in uplifting read and videos. I am going to try to live with hope and not dwell on negatives.

The eternal optimist, I am going to believe that I am going to have less fibro pain and get more done. I mean, if one thinks only of horrible things it will ensure that I just exist and don't live.

I don't want to endure next year, but enjoy it. It's a big ask, but it is possible. I tell myself it's possible to live an abundantly happy life in spite of pain. I just have to pursue it. 

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.

Bathing in it

 

So, I have really had a hard week of it. I am physically and emotionally spent and it's all about the ravages of Covid in my family.

Firstly, we have had pleas of vaccinated family and friends to take the Covid vax ourselves. This is not going to happen unless our backs are up against the wall. We have spent a considerable amount of time defending our reasonings and copping flack for our choice.

The government is getting more strident in its call to be fully vaxxed and more and more punitive measures in restrictions are coming into play. So much for vaccination not being mandatory: it is really.

My adult children have decided to get vaxxed against my advice and  so has my teenaged grandson. It is their and his parents call I guess.

Then yesterday my grandson got his second Moderna shot and ended up in ER with heart palpitations and fast heartbeat. He is now home, but they said it was a reaction to the shot. He's doing better today.

Furthermore, his paternal grandmother in her 70's developed a deep vein thrombosis two weeks after her  Astra Zeneca jab. But the hospital denies it was the vax. Of course.

My son has been double vaxxed and he and his partner have tested positive for Covid. The only non Covid related whammy for me this week was my other son succumbing to his back injury and being too afraid to go to hospital because of the chance of getting Covid as well. He hasn't been vaxxed.

Chris and I both have existing health issues that need a specialist's input before we are to consider it. So says our doctor. Otherwise we could get an exemption, but would still be limited in our freedoms and seen by the general public as a threat.

All this has ended up with a major fibromyalgia flare which is exacerbated by arguing our case with newly vaxxed family preaching vaccination benefits at us with evangelical zeal. It's all too much.

So today I am not answering phone calls but am going to try to rest as much as I can which should be easy with the measly amount of spoons at my disposal today. 

I want to not think of Covid and vaccinations at all, but I want to take a Tramadol for my considerable body pains and maybe go back to bed.

But first of all, I am going to boil the kettle and make a really large cup of tea. This should help the Tramadol work faster. Tea always is welcome for me and during a fibro flare, it is invaluable as a comfort drink and pick me up.

These days, the only problem with that is that I can't find a big enough cup to satisfy my thirst and tea cravings. To be honest, at the moment, I feel that I not only need to drink tea with gay abandon, but would love to be bathing in it.

Comfort from my kitchen

The weather has been shocking today and is forecast to be the same for four days. It's been so windy today and last night that I thought our tin roof was going to come off. It seemed to be lifting off. The rain just keeps pouring down with occasional hailstones. I think we are getting some of the tornado that came to Sydney.

I have been suffering from severe fibromyalgia pain, coupled with arthritis in my spine, fingers and knees. I have tried not to go to bed as I don't like sleeping my life away, but I will  have an early night.

Today seemed like the perfect day to warm up with some comfort food, so I made a slow cooker full of Jewish Penicillin.   Not only is it nourishing, but tastes great. I find it so comforting on days like today.

I had planned to do my overdue dishes today, but my spoons were vanishing as fast as my soup. Chris stacked the dishes for me and they are going to be waiting there till tomorrow now. I am planning on taking some Tramadol and go to bed about ten. 

I know I write a lot about fibromyalgia flares, but I think it's just the same long drawn out flare. Maybe this will be my new normal forever! I hate to think like that, so it's off to grab another bowl of comfort from my kitchen! 

Living on a wing and a prayer

Before I injured my knee, I bought a food processor and I promised to make Chris some sultana muffins. It arrived Friday and I just unpacked it this morning.

I can't stand on my leg for long, but I think I can manage to reach the processor if I sit on my high barstool which graces our breakfast bar.

Whilst hoping to make muffins for afternoon tea today, I am hoping to make a sweet beef curry in the slow cooker for dinner. It feels good to actually have enough spoons to cook. My fibromyalgia flare seems to have gone.

Later on after dinner, I am going to take a shower as my new shower chair has arrived as well. I should be able to manage if I can sit down. I will time it so that Chris can be nearby in case I run into difficulties.

It was bad enough with a meniscus tear in the left leg without another one in the right now, however life goes on and it is possible to run the house seated. You learn to adapt.

My cleaning lady came today and the house looks nice. I had it tidy before she came so that all she has to do is clean and not tidy everything just so she can start.

I am hoping my knee doesn't require the Tramadol today as it makes me so tired that I won't achieve my goals in the kitchen.

I am mindful of every step I need to take so if I am careful, I should get away with just Panadol or Tylenol.  One thing I can't get away with is a quick prayer as I am literally living on a wing and a prayer.

Walking like Tin Man!

So my right knee has been hurting for six weeks since I drove for five hours a day when Chris wasn't feeling well enough to do it. I was hopeful that it would come better, but unfortunately it hasn't and it came to a crescendo two days ago.

Making a pivoting step to turn round and grab something out of my fridge, I felt a searing pain that nearly made me pass out and I thought I had torn the meniscus in the right knee as well as the left one injured three years ago.

With pain still from my jaw following a dental extraction that saw my jaw planed which then brought on a bad fibromyalgia flare, the pain in my knee saw me getting wheeled into my doctor's office 2 days. I cannot put any weight on it at all and it feels unstable.

Two days later and Xrays under arm, we returned to the doctor who told me my ACL ligament had snapped and sheared off some of the tibia with it. He rang an orthopaedic specialist for a look at the films and a second opinion.

Turns out the tibia is intact, but I have a bony stone behind the knee called a fabella. I am having a MRI tomorrow which will tell us more and indicate what treatment is available for the ligament damage as well as the fabella.

I am unable to put any weight on it and have been told to rest the leg. I have been given Tramadol to cope with the pain.

So I am looking at getting a shower chair and possibly hiring a wheelchair. We find that easier for Chris to use as I am concerned about him pushing me especially with his heart problems.

For the next few days at least, it's rest, pain relief and trying to remain positive as I walk like Tin man in the Wizard of Oz!