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! 

A longing for a cup of tea

 

As you know, I have been put on insulin and my sugars are still unstable. My doctor and I are trying to get my sugars stabilised and it's been a bit of a nightmare, to be honest.

On top of this, my fibromyalgia has flared majorly due to us entering our spring, bringing changing weather and muscle pain that is unbearable.

My knees are totally killing me as well and there's not really much I can do. The lymphoedema is progressing nicely, making my legs and arm swell. Again there's not much anyone can do.

The sugars are peaking and at times like these, I feel like I am having a panic attack. It's not, it just feels like one.

My fingers are sore from constant blood glucose testing and I have bruised my stomach where I have injected. This probably so because I am on blood thinners.

I have a raging thirst with the sugars being high and I usually drink loads of tea over the day. I have bought zero sugar soft drinks and cordials, but the horrible after taste mingles with the fruity breath from the burning sugars, so I have been cutting down on them too.

At the moment I am trying to train my taste buds to go without sugar and though getting a big urn for instant boiling water was something I wanted to do, I have put that too on the back burner.

It will stay there until or if, I find a sweetener that doesn't leave a bitter after taste. I hope it's soon because I have a deep longing for a sweetened cup of tea...

Some more to add to the mix

 

I have another couple of issues to add to the mix. Lymphoedema with skin changes similar to this picture above.

I also have sugars over 17 fasting and it's making me feel dreadful.

I have just changed doctors since the move and she has gone on vacation for two weeks. I need to go on insulin.. 

I have been putting castor oil on my legs and it seems to be stopping the scaling which hopefully will stop the legs getting infected. My right arm is also affected...

To add the final nail in my health, I have been suffering from costochondritis which is very sore.

With a fibromyalgia flare happening as well, I am truly feeling dreadful. Prayers would be very much appreciated.

I am my own doctor

 

So we have recieved more bad news from our doctor with a change of medications which, as it turns out, hosts a long list of dangerous side effects.

Our 3 monthly blood tests for diabetes and cholesterol etc came back showing a rapid rise in our sugars and cholesterol.

Our doctor is not pleased that we have stopped taking our statins, agreeing that the brain needs the cholesterol but saying with our chronic heart disease and failure that we should take them as the benefits far out the risks... and she wasn't swayed that both of our mothers died of alzheimers.

So I am sitting here praying and reflecting on what to do and we have decided to resume taking our previous medications that came with less side effects.

I am not happy that she changed our medications without informing us that they come with a host of possible dangers... as I said a few years ago, sometimes you have to be your own doctor.

Enough acid to rival Chernobyl

 

I have been on Somac for GERD for at least 20 years and I have just learned that it has been allegedly responsible for giving stomach cancer and kidney disease to many users.

Honestly, I don't know what to do and so I have made an appointment with my doctor next week to discuss it.

My GERD causes me to aspirate my acid and stomach contents thus inducing aspiration pneumonia three times so far. I am now in a dilemma to know what to do.

There's been a class action in Australia and it seems that many people have suffered after taking it. I will update after I have discussed it with my doctor.

Honestly, it's a bad time to stop using them with being stressed, tired and fighting a long fibromyalgia flare. I pump out enough acid to rival Chernobyl's meltdown.

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.

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.

Being your own doctor

So over the past few weeks, I have been having problems with my blood pressure. I currently am on  seven different tablets a day to lower it and my doctor has been trying to improve the results by switching around how I take them.

So along with my other blood pressure tablets, he had me taking my Physiotens .4 in the morning with my other Physiotens .2. As well as the other ones.. all at once.

This did not go over too well with my body. An hour after taking them, I became so sleepy that I fell asleep at my computer. I then had to sleep them off for about three hours in bed.

My mouth was so dry I couldn't swallow easily as food would get stuck in my throat.and my eyes were dry, making them red and sore. I was craving water like someone in the desert...

It was aweful at times as I would suddenly come over sick and nearly retch. I got normal BP readings but I was not happy with  how I felt.

So I did a Google search and Viatris who make Physiotens said that the maximum dose a day was .600 and that amount should not be taken at the same time. Further, all my symptoms were side effects of the Physiotens or Monoxidine

I had a phone consult with my doctor and told him the story and said it's true  not to take the .600 in one hit, but on occasion it had been done in cases of stubborn high BP and was effective. But at what cost? I thought.

I told him I wasn't happy with how I felt so he said to experiment myself. I felt like saying.. but I am paying you to direct me but I didn't... he usually is very good.

Anyway, last night  I woke up for the bathroom and I felt weird. I could hear my heart thumping in my ears, I felt dizzy and my legs didn't seem to want to hold me up.

I ran my wrists under the cold water in the ensuite vanity, took a couple of paracetamol tablets and went back to sleep- which hasn't been that good since I changed the tablets around- another side effect apparently!

Waking up at 8am, I felt nauseous and dizzy so I thought my BP would be low- it was high at 214/88 with 69bpm. My bpm is usually 59-60. I immediately took all my tablets, except the .2 which I plan to take tonight.

I checked my BP an hour later and it was 161/82 62bpm. I went to sleep for a few hours and retook it. It was 136/73 57bpm which was much  better.

It's not the first time that I have thought it is sometimes better to be your own doctor these days.

It still is that for me!

 

Yep, it's still Safeway for me!  With fibromyalgia brain fog and old age, tell me the new name of a place or person I knew, and it is lost forever... they will forever be the name I first called them!

So I had a phone consult today and the doctor wants to wean me off prednisolone after only four days.. it hasnt really done it's job quite yet, so I am going to spin it out for a few more days ...

Today I have washed some minkie blankets off our beds, ran and then emptied the Roombas, cleaned the toilets and ordered online medicines and groceries.I  did some rounds of crochet in between tasks..

Chris loves bangers and mash so that's what I will be doing for tea tonight..

The Prednisolone fills me with fake energy, but I don't care... I will milk this Polymyalgia rheumatica situation for all it's worth!  I know I won't be long on the meds so I may as well turn the antsy feelings for my good...and get the benefit of some pseudo spoons!  

For those who don't know... in Australia Safeway Supermarkets took on the name Woolworths many moons ago: but as I said, it still is that for me!

No spoons required

So yesterday was a really good day. In spite of my fibromyalgia flaring and angina. But it's because of those things that today has been so good.

My diary showed a doctors' appointment to attend, then the chemist for scripts and then the inevitable grocery shop for the week. A full day for a chronically ill person.

I thought it through and decided to ring the clinic and change a face to face consult with a phone one. Then I rang the chemist to advise them that the script I owed them for some blood pressure tablets would be coming in the afternoon. Then I arranged the medicines to be delivered to me.

Then grabbing a cup of tea, I did my online shop and arranged delivery of it for tomorrow. And I played Candy Crush until the doctor rang me.

He arranged for the escripts to be sent directly to our chemist. I made another cup of tea as the doorbell rang- the girl with our medicines delivered them very promptly.

Cooking a simple meal, I found I had energy to work on my crochet project until bedtime. I had plenty of energy as all the errands had been done with no spoons required.

I am beyond tired!

 

After a good day yesterday, I ended up flat on my back. Actually that is in bed. My doctor said my BP was too high at 187/87 and he put me on more meds. I planned to do some organising of my wardrobe but it was not to be.

Half an hour after taking my BP medication, I found I couldn't keep my eyes open, so I went to bed. Woke up a couple of hours later just in time to cook dinner. Dinner wasn't very exciting- a steak sandwich.

Tonight I had to take my usual dose of BP tablets and I am just about to go to bed. It's so frustrating! But with chronic illness, it is what it is!

I have to go back to him in two weeks. He is going to discuss giving me Endep for my fibromyalgia pain.

Unable to sit for long, I have culled a lot of FB groups and deleted my Twitter account. I want to reserve whatever spoons I have to look after Chris and our home. I need to spend more time with him and not on the computer.

This dance with chronic illness has it lead all the way. It steps on your toes and cramps your style. It holds you captive. I just want a break from it. I am beyond tired! 

Between my nana naps!

 

Today is Saturday morning here. I have had a busy week with doctors appointments and physio for my daughter who is doing really well. 

My son had a possible cancer in his bowels, but the first test was a false alarm and to be honest, it made me anxious. I didn't realise how anxious until he was cleared. 

This son was born with a forceps injury to his eye- it looks normal but he has very little sight in it. He has developed a pterygium or sun damage in his good eye and has surgery next Friday to remove the growth because it is growing across his eye and may interfere with his vision. I will be glad when it's done and his eye has recovered. 

All this has given me the Mother of all Flares. My fibromyalgia is killing me at the moment and I am taking frequent naps to cope with it. I have a few housework chores to do and some folding up of clean washing. I will do it- in between my nana naps! 

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! 

Pain is a disability

Anyone who suffers from chronic pain knows that it precludes us from a lot of enjoyment of life. Pain makes the vicissitudes of life that much harder to bear. 

Everything is exaggerated both physically and mentally, and the only thing I can do is accept that this is not my usual self, for pain changes people.

Pain disables us in many ways. from physical activity. from family life. from sex. from sleep. from patience. from social life. from functioning normally. from life generally.

The effects of pain cause us to withdraw from people and become reclusive. It makes us feel isolated and unable to really feel understood or validated. We learn to be distrustful of others.

Because chronic pain, in my case fibromyalgia, causes us so much mental as well as physical angst, we decide to retreat to our home often preferring it even if we had enough spoons to leave.

Seeing as pain is such a disabling affliction, it makes no sense to me that we are often regarded by doctors with suspicion when we request heavy duty pain relief such as opiates.

Most of us cannot get enough medication to adequately help us with our pain. We often then succumb to depression and live as recluses  due to agoraphobia. 

We who suffer from chronic pain know that it is a disability. Invisible and destructive. We live in the knowledge that pain is disabling. 

We just wish doctors were as aware of the ongoing relentless disability called Pain.

Or should I say, how little!

It's Wednesday morning here. I have cleaned my kitchen and taken meat out to thaw for dinner. I am going to cook pork chops with mashed potato and greens with gravy.

My sister's son came to visit her for Mother's Day. He brought some homemade scones with cream and jam for her and my nephew to enjoy. They share a house together.

During the visit, he shared that his own son is at home with Covid. Yesterday, he rings and says he's now positive too. With lupus, fibro and other diseases, and with my son with breathing problems, they are worried that they will catch it too. They aren't vaxxed. So far my son and my sister are OK but are getting some RAT's this afternoon. 

Chris is sleeping sitting up on the couch. He really needs to go back to the doctor as he's feeling like he's drowning in fluid. I have been encouraging him to go, but he's very stubborn. Consequently, he doesn't get much sleep and can't lie down. 

It's hard looking after him because of this fear of doctors and hospitals. It's not like he's a child and you just take them....

There's not much else planned for today. My fibromyalgia pain is bad. I'm so glad at this stage of my life that I can decide how much I will do each day. Or should I say, how little!  

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 arched 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.

The only nice thing about it

So we went to the doctor yesterday to get our results from blood tests taken a few days ago. My blood pressure was 140/90 which was slightly better than last time, but still high.

He asked was anything bothering me and I had to tell him I am worried about Chris. Both of us have heart failure, high blood pressure, diabetes and cellulitis plus I have fibromyalgia. 

We both have pitting oedema on our feet and legs and the fatigue that comes from obesity and feeling sick. Dressing and showering is shared in that we help each other and because of exhaustion from showering, we shower every second day, taking opposite days. That way, we can help each other.

Our love language is touch in the form of massaging each other's feet and legs and our speech revolves around spoons and how much sugar is in everything that passes our lips.

We rarely leave home any more except for the doctor or chemist and our rubbish bins go out more than us. The highlight of our day is to discover we don't have any appointments or need a blood test. We are extremely relieved to know we can just stay home and have a PJ day.

It is unusual to call on us and not find at least one of us having a nana nap, particularly if we haven't slept well the night before.

When massaging Chris's feet or watching him sleep upright so that he doesn't feel like he's drowning in his fluid, I become anxious about how ill he looks and I fret that I will lose him.

I can't bear to think of that and when I do, I have to give it to the LORD in prayer and trust that He will grant us more time together.

All this angst does nothing to alleviate my fibromyalgia pain or help me get over a flare and I find myself taking mild pain relief every 6 hours. As the doctor advised.

Our home is able to be company ready in half an hour as it is basically tidy all the time. True, there may be slippers in the lounge or a cup on the table, but this can easily be fixed. I just close our bedroom doors to hide the permanently clean but unmade beds.

We love our home as we feel it nurtures us and even though we only may be gone a few hours when we have to go out, we find we are really looking forward to coming home again.

When we were engaged, we agreed that it would be nice to grow old together and we have. Twenty-five years later, it isn't so nice. But thank goodness we have each other and that's the only nice thing about it.

A merry little Christmas

                                                

We are waiting for the real estate to carry out their 6 monthly house inspection for our rental. There won't be any problems. We love our home and have a lady come do some cleaning every two weeks. Just the stuff like vacuuming and mopping that we can't do anymore. 

I have washed all our bedding over the last few days and stored our doonas away because we are now in our summer. Next week I will wash our pillows.

I will be making some sugar cookies to try out my Christmas nativity rolling pin. The cookie cutters came yesterday. I want to get the dough right before I make them up for Christmas gifts. If  our little granddaughter is here before Christmas Day, I will let her help. She loves being in the kitchen and I let her cook or bake. 

Our doctor is going to do a phone consult for us this afternoon. It's mainly for prescriptions but I need some advice on meds for Chris's fluids. His feet are swollen like balloons. (He has heart failure) I could have gotten in to actually see the doctor this afternoon, but Chris won't go, so I settled on the phone consult.

I put our little Christmas tree up and hung a wreath on the door..

Just taking things quietly each day.  With another flare of fibromyalgia, it's enough. Like my 18" tree!  We are going to have a merry "little"  Christmas.

Sometimes you have to be your own doctor!

It's Saturday evening here. Not much accomplished today except I washed some dishes and will cook dinner soon. 

Chris's face is improving already with his Bell's Palsy and he can open his eye almost fully and his mouth is not as drooped. He is regaining his speech again and is not slurring his words as much. 

His sugars are way up because of the Prednisolone he's been taking. Consequently, he has been sleeping on the couch most of the day. The doctor wants him to discontinue the steroids so this morning was his last day. 

I was awakened by asthma early hours of this morning. The inhaler didn't help much but I still went back to bed because I was needing to sleep. Especially with my night medications. If I don't sleep for 9 hours, I can't focus properly. Plus I am having the Mother of all Flares with my fibromyalgia and can't stay awake.

We have watched all 14 seasons of Heartland and are now waiting for Season 15 next month. We miss it. There's not much on TV or Netflix that we really want to watch. But I like watching something with Chris.

We put our clocks forward an hour tonight as daylight savings ends. I hope to get a better sleep tonight and I have decided to take some of Chris's Prednisolone if the asthma comes back.-it is an average of a week to get into a doctor up here.  

Ya gotta do what ya gotta do! Sometimes you have to be your own doctor!