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.

My Cleaning Schedule

           

As you know, I have now been approved for 2 hours of  home help a week. It has been a difficult time lately with a fibromyalgia flare that never seems to end. 

I have my sister here with us for the moment, so having some extra help especially in bedmaking, will help me immensely.

Just keeping the washing up to date, menu planning, cooking, dishes, food shopping, bill paying, and organising medicines for the week and ordering them from the doctor and chemist, is enough for me to cope with.

So this extra 2 hours will help me immensely. Maybe then my fibromyalgia flare will finally go away!

 

WEEK - MEL-6/9/2024

KITCHEN

MY BED AND CHRIS' BED

TOILETS/ ENSUITE

FLOORS

WEEK - TANYA -13/9/2024

KITCHEN

GUEST BED AND MY BED

TOILETS/ENSUITE

FLOORS

WEEK - MEL- 20/9/2024

KITCHEN

GUEST BED AND MY BED

TOILETS / SHOWER

FLOORS

WEEK - TANYA- 27/9/2024

KITCHEN

GUEST BED AND MY BED 

TOILETS / SHOWER

FLOORS

We walk that path together.

 

It's a sad fact that lately Chris and I wake up each morning feeling exhausted. We can sleep for 8 hours or sometimes 9 and still feel tired.

We ache all over and carry the "just woken up" brain fog all day. Our morning routine consists of bloods to check the blood sugar levels and then an insulin injection for Chris followed by a hearty breakfast of pills swallowed down with a nice cup of tea.

Our love language is spoons and our song of lamentation is that we don't have any or that it won't be sufficient for the day's activities. We live just to take another nana or grandpa nap.

Of course I have a double whammy of woes, with my diabetes and fibromyalgia. The pain never departs except for the brief few minutes Chris rubs my feet. I have the combined effects of peripheral neuropathy, in my toes especially and the foot pain that comes with fibro.

With ongoing chronic fatigue, I am certain to fall sleep just 5 minutes into my foot rub. I joke and tell Chris that these days it's better than sex!... only between us- I think it's true! I mean when everything hurts and it's hard to breathe with angina and pulmonary hypertension, foot rubs now are the only pleasure in life that steadies my breathing and still relaxes me..

And talking of breathing, that RSV flu type virus is still hanging around. Not as bad, but bad enough to have me keep my asthma puffers strategically placed at my dining table, computer desk and bedside. It too drains my energy and adds to the joy of a fibromyalgia flare.

Statistics show that more women have fibromyalgia than men, but I often wonder if Chris' chronic fatigue and constant body pains are indeed fibro... there's no particular test to find out, but it wouldn't surprise me at all...

Meanwhile, he lives the horrible life of a fibromite, but at least he doesn't have to validate himself with me. We walk that path together...

Sitting down brings no comfort

 

Over the years of chronic illness, I have noticed that what used to be a reward for spending spoons and being proactive was in having a comfortable place to sit.

Gradually the places that once gave me a comfortable sitting have become objects of pain. My armchair, couch or sofa, typist chair, dining chair and car seats have all become places of torture and there's no reward or rest found in them.

Like wise, my bed also yields no comfort to my fibro effected muscles or my spinal pain.. it can't be the furniture's fault.

I think the fault lies in my allodynia which is pain on the lightest of touch. It is often a part of fibromyalgia and/or diabetes neuropathy. There is no cure.

I cannot take many tablets that are commonly prescribed for fibromyalgia, such as Lyrica so I have had to find something that helps with the pain. 

With both peripheral neuropathy from diabetes and fibromyalgia, and with constant knee pain, I find the only time I can completely relax is when I am lying on my couch and Chris is rubbing my swollen feet. The swelling is from heart failure.

The massage seems to distract the nerve path that interprets pain and replaces it with a pleasurable sensation, allowing me to often drift off to sleep.

I know it's sad that a foot rub is the only help for me at this stage of my life, but it is what it is. And it is good for me as sitting down brings no comfort. 

You better go check yours out!

 

So as you know I have been having problems staying awake. Even after 8 hours of sleep, I battle keeping my eyes open during the day.

This has had me perplexed and I have blamed my fibromyalgia, which still may be a part of what I have been struggling with, but certainly not all.

Going through my refrigerator last week, I sorted through the side top shelf on the door where I keep Chris's insulin injections and my thyroxin. Checking the dates, I was shocked to see that my thyroxin was out of date by two months!

I quickly discarded them and put a new week of indate tablets in my pill container for the week. No wonder I have had peeling skin off my face, hair loss and fatigue...

It's been 6 days so far with little change, but I would expect the synthetic thyroid hormone to build up in my system soon... I am hoping I don't have to wait long.

I am so switched on with medications and foods and so on that have a limited shelf life, but this time, it fell through the cracks...

Considering I have been battling a long term fibromyalgia flare for about 10 months... yes nearly 11 months since moving here, I guess I have to cut myself some slack. Nevertheless, when I discovered the out of date meds, I did tell myself  that I am an old sausage! And I am!  You better go check yours out! 

I find that very relaxing

 

If ever a picture epitomises you and your home and lifestyle, it's this one. A lady dressed sensibly and warmly with knitted socks looks out of the window watching the birds feed from the bird feeder. 

Her cats also watch, but with ulterior motives, mentally stalking them as prey. She has a cuppa in her hand and seems wholely relaxed.

Like our home, she has a blanket over her armchair, protecting it from the cats and adding a homely touch.

I would love to visit her home as I feel like we would be kindred spirits...

Anyway, today is the first day off the Prednisolone. I tried to halve the tablets but they crumbled. So I will be going off them cold turkey. I was only on them for four days...

My polymyalgia is improving but I still have a headache. I have just taken some paracetamol for that.

The Roombas have been run, I have pulled my bed up, done breakfast, bloods and meds and a load of washing which is now in the dryer. The weather is lovely today and I really should have hung it outside. But the PMR and fibromyalgia says otherwise, so I will have to listen to my body and just go with the flow.

I have a couple of pork chops on the kitchen bench thawing for tea tonight. I will serve mashed potatoes and a salad with them.

I am going to take the rest of the day easy as I have to pace myself.. fibro is raising its ugly head again.

Meanwhile, I will sit on the couch and let the fresh air fan me as I lay in the sunshine on my couch for a bit.

From my view on the couch, I can watch the clouds and I find that very relaxing...

She's a Diva!

 

I have changed my blood pressure tablets around and take the stronger of the two Physiotens at night and it has helped me sleep better again.

Consequently, I awoke with a few more spoons this morning and I paced myself and managed to catch up on some home chores I was behind in.

It's now evening and I am winding down for the day. 

I managed to fold and put away a weeks' worth of washing which was weighing on my mind. I always meant to get around to it, but fibromyalgia reduced spoons saw to it that I didn't.

Although spent and exhausted at the moment, I have a feeling of accomplishment. I like it. So tomorrow, God willing, I am going to iron my few articles such as our pillowcases and sort out my medicines.

It's going to be cold tonight, so I have already put our electric blankets on. Our cat, Xena has found the warm patch already and is asleep on my bed. It will be interesting  to see if she objects to me slipping in beside her when I retire tonight. She actually tells Chris no when he comes in to say goodnight.

They say cats aren't very expressive, but Xena is! She's also very bossy and fussy. We love her to bits, even if she's a diva! 

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! 

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! 

My eternal quest

 

I slept well last night but still had no spoons to speak of. After a morning of minimal chores, I sat down next to Chris to watch the birds coming to eat the food I had thrown out for them.

Because of my heart failure, my feet and legs are up like balloons and Chris rubs them for me to help move the fluid up towards my heart. With neuropathy from my diabetes, he rubs my toes to move the blood around and help the circulation. It is heavenly.

Suddenly, I heard sonorous sounds that woke me up: to my horror, it was me snoring! Chris just laughed when he saw that I had woken myself up and suggested I try to get some more sleep before lunch. But the moment was lost and I got up and made some grilled toasties for our lunch.

I soaked the few dishes in hot soapy water, removed a small leg of lamb from the freezer, did some computer work and fell asleep at the screen. So I went for a nana nap as that's the only thing I can do with a fibromyalgia flare.

After I napped, I put the lamb on to roast and completed the dishwashing. We ate dinner and Chris cleared up the kitchen. We took our night medications and Chris watched TV while I blogged.

And so, here I sit, talking to you and longing for my bed again. I had no joy today finding some spoons and it may well be that tomorrow I will be pursuing my search again- it is my eternal quest.

Tomorrow may be better

 

So Friday night I developed a raging toothache. By Sunday I was so desperate for relief that I was seriously considering going to the ER at our local hospital.

I only had Panadol or Tylenol here and it wasn't helping at all. Waking up Monday morning, I rang the emergency department in our local dental hospital and they made an appointment for me that afternoon.

My tooth was cracked, exposing the nerve, so it had to be extracted. It was a difficult extraction and my jaw had to be planed down as it had jagged edges after the tooth was removed.

The dentist would not prescribe opiates for pain relief and told me to see my doctor. Fortunately for me, he did a phone consult and left a script for Tramadol for us to pick up. Chris got it dispensed for me and it was a life saver.

With my knees both paining me and a fibromyalgia flare brought on by the extraction, I felt like I was drowning in pain. So yesterday I spent most of the day in bed.

Today, I have a lot of dishes to wash and owing to how I feel, it will be the only job I make myself do.

I will make some Jewish Penicillin for dinner tonight and we will have a salad sandwich for lunch.

Hopefully tomorrow will be better.

So what's on your plate?

I am trying to balance a plant based diet with red meat. I have a diet full of salmon and other fish, chicken and red meat, with about 50% per meal of plant based food. 

As I am a chronic kidney stone maker and have too much uric acid in my blood, I can't eat too much calcium oxalate. So I can't go on a totally plant based diet. 

When I had the Nutri Bullet/Ninja I drank vegetable based smoothies daily and I had 5 stones in 6 months. The uric acid mixes with the oxalate forming uric acid crystals. So I have to take allopurinol daily. 

It's a delicate blend- the vegetables and the red meats. It's a fine line I walk daily, trying to eat right. I have 120lbs to lose, by the way. Not easy. 

Today I am going to the doctors and I am going to ask him if he can allow me to start my Prednisolone again for my fibromyalgia pain. Also for my arthritis in both knees.

There's only so much you can bear and I need some respite from the pain. Coupled with dietary and weight issues, it's not fun.

Today I am asking how you are doing with your chronic illness and weight. So what's on your plate? 

More than enough to do

We are on a snap lockdown.  I need to get some prescriptions filled.  Also I have some mail to pick up at the post office.

Apart from essential services such as post and chemist, everything else is closed or people are working from home. 

This is our fourth lockdown  this  year and  is mainly because  people  are not following protocols when they have been interstate. Oh well, as the young ones say, it is what it is. 

I  have dishes to do,  a  load of washing  to fold  from the dryer  and cook dinner.  After the chemist and post office. 

The way I feel today with my fibromylgia flaring and back pain,  it will be more than enough to do...

I am so glad it's over.

 

It has been a long day of catching up on dishes left in the sink and washing left in the hamper.  Chris has been unwell and is just starting his antidepressants. Not being able to turn off thinking enough to sleep and other symptoms of depression, the doctor thinks they are warranted.

Because Chris is temporarily unable to drive, I have taken over and it has injured my good knee. Tonight, it is as painful as the one with the meniscus tear.  I have been unable to bear any weight on it. Hence the housework waiting for me.

After three days off the leg, I have just been able to get the dishes washed and the washing caught up between limping back to my couch. Chris was well enough to dry the dishes and put them away for me. As we speak, he is putting the folded clean clothes away.

My BP is soaring, no doubt to the extra pain. My knee pain is just the cherry on the top of a delightful fibromyalgia flare and bout of sciatica. I feel like retiring to my bed and staying there for a week.

But where does a wife who is a carer to her carer husband go for a break? There's no such thing and the most she- I, can hope for is to do my housework in my dressing gown.

Life goes on regardless of fibro or knee pain, or exhaustion or.... whatever.  I have sorted our pills for the next week and given Chris' his as I took mine.  

Xena's been fed and I poured fresh water into her bowl. The electric blankets are on with the promise of soothing warmth for my aching back and muscles. 

So the day is nearly over and my house is in order once again- and I am so glad it's over.

My daily homemaking chores

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

WAKE UP: BLOODS, JAB AND MEDS FEED XENA

1.  There is the breakfast hour, which includes tea-time. First we prepare the meal and set a table.  I often set up a tray- table and sit in the parlour before anyone else is awake.  I am an early riser so I have my tea while the sun is just beginning to rise.  I enjoy this quiet time of resting from the brief bit of morning work.

Later, when the family has their eggs and toast, or fresh baked muffins with fruit, it is time to do the dishes.   We wash the table and the counters and do the sweeping.   All the work of tidying and making things neat are part of the breakfast duties. 

2.  Often, during the morning hours, we do the laundry or the dusting and vacuuming. Each day has its special work. It may be Wednesday is for washing floors. Perhaps Thursday is for cleaning the bathroom.  The mid-morning hours are a good time for many of us to do these special duties of making a home look pretty. LIST WORK FOR THE DAY

3.  The Lunch hour is such a wonderful time to stop and rest.  We put out a fresh, clean tablecloth.  I love my white-and-teal checkered cloth.  It looks so homey and old fashioned.  We can set up our plates and napkins. We can do this even if we are just serving grilled cheese sandwiches, pickles, and chips!  It makes the lunch - work like a reward when we sit at that pretty table and rest and eat while we enjoy the family.  Next we do the sweeping and the dishes, much like we did in the morning.  

4.  The dinner hour is such a precious time in the day.  I often start working on the evening meal at 3 in the afternoon. I work slowly and take lots of breaks. Sometimes I peel potatoes and start getting a little casserole ready to bake.  Other times I might do much of the work for a pan of lasagna. I like to put these pans of prepared food in the refrigerator and then just take them out to bake when it is just about dinner time.  That way I get a great deal of rest between all the work.  CLOSE THE BLINDS AND LIGHT THE LAMPS.  BLOODS JAB MEDS 

Sitting with the family and hearing the blessing (or the prayer before the meal) is such a peaceful experience.  It is lovely to just sit and enjoy dinner at the end of a long day.  Then the work of tidying, doing the dishes, and sweeping the floor happens.  We make everything look neat and pretty. But I do not like to rush.  I do not want to just "get the work over-with." I take my time and go at a steady pace.  The work of cleaning and accomplishing the beautiful work of making a neat home makes me happy.  It also brings peace. SHOWER OR BATHE 

These four tasks of homemaking do not take a great deal of effort.  They may seem simple and ordinary.  They may seem mundane.  But if we dress up in something pretty, wearing an apron, and keeping our hair up in a pretty style, we may find ourselves enjoying the work.  I have an old blue-and-white gingham apron that I love to wear. It is getting old and ragged. I will have to make a new one this coming fall.  I need a fresh supply of lovely aprons to wear as I do the housekeeping.

When we look extra nice as we do our work, we can find joy in the labor.  Doing the little tasks of keeping house, each day, with a feeling of contentment, will bring a true feeling of comfort and happiness to the family.  It will help them feel welcome and loved in a happy and simple home.

The old hag came a'calling

There's a very scary sleep condition called Sleep Paralysis. Basically the brain is trying to wake us up but the body can be paralysed. It's also known as the Old Hag Syndrome because one often is conscious of something malevolent in the room or at close range.

I have had this happen to me. I woke up to find I could only move my eyes. I couldn't move my legs or head. It felt like someone was in my room and I had the most awful feeling of dread. I fell asleep again to wake up in the morning with the feeling that it was a very vivid nightmare.  It is the scariest thing...

I try not to allow fear overcome me when I try to go to sleep. In case I bring on a nightmare, I always go to sleep focusing on something positive.  With falling sleep being  difficult enough with fibromyalgia, I practise relaxation techniques that I learnt to cope with panic attacks.

This experience I liken to a nightmare, only I was conscious enough to know I was awake and it was real.

I really detest this happening as I guard my sleep judiciously thanks to it being so scarce with my fibromyalgia pain. After dinner, I won't watch anything on TV that may make me anxious, nor do I eat anything so as not to cause a disturbed sleep due to my digestive system handling food.

Feta cheese gives me nightmares, so I only eat that during the day. In fact all cheeses give me nightmares, and on occasion they have triggered a migraine.

After dinner I change into my pyjamas- if I have bothered to get dressed that is. I wind down with some rounds of Candy Crush and then I join Chris for a snuggle in front of the TV.

But even then I have to be very selective about viewing what he's viewing. If it's not a "chick flick" or is violent or will make me think too much, I just take him in a nightly cup of tea or hot milk and finish off another few rounds of my game. 

It seems I do become fixated on getting a good night's sleep, and it is true: I do.  With all my medications, about an hour after taking them, I feel the need to head towards bed. And saying about the medications, I am on 24+ pills a day and if I don't sleep for 9 hours, I wake up feeling hung over.

Anyone who suffers from Fibromyalgia will know that a good night's sleep is crucial to coping with the daily pain and they will also guard their bedtime habits like I do.

I want to enjoy my sleep, and I don't ever want to have to tell you that once more, the Old Hag came a'calling...

Our home is so nurturing

Yesterday we went to the doctor who doubled Chris's fluid tablets as he has fluid in his lungs. He doubled one of my blood pressure tablets taking the total to 8 different types a day. 

I have fibro fog really bad and forgot to bring the repeat prescriptions we needed to get made up, so we came home and now have to go again today. 

On the bright side, we have been staying home most days and we both are feeling really content with the house we are renting. We both feel the LORD picked it just for us- it is perfect and nurtures us both. 

A lot of time is spent lying or sitting on the couch aka "the beach",  and the big window leading to the back garden is beautifully showing the birdlife. It is like a screen saver- it is never still and always changing with a bird or butterfly passing by. So exceptionally soothing for us both at this season of our life.

1. Today I must do a load of washing
2. Go to the chemist
3. Cook a stew for dinner tonight.

And my people shall dwell in a peaceable habitation, and in sure dwellings, and in quiet resting places; Isaiah 32:18

Just when we came up for air!

 

So today I had just finished ordering my groceries online when I received the news that all of our home state, Victoria, is going into a five day lockdown starting tonight at midnight. It was a snap decision.

I have been preparing for this, so it didn't catch us unawares. Well, the timing caught us unaware, but the possibility that we could be forced to stay home again didn't.

Since the lifting of restrictions that saw us locked down for nine months, I have been gradually adding extra tinned foods, non perishables and drinks to our pantry. 

I have been gradually getting extra prescriptions and insulin injections made up in case of another snap decision by the Victorian government to enforce a lockdown. I am glad I did.

Although it is supposed to be for five days, with this virus mutating and so on, one never knows. It is  best to be prepared.

With no visitors allowed to our home and nowhere to go,  it will be easy to recover from my most recent fibromyalgia flare that has seen me unable to think clearly, let alone write a blog post. 

I won't be feeling guilty for going to bed during the day, but even so, I would prefer the freedom to come or go as I feel led. 

We Victorians are getting old hands at being cooped up at home and it can be depressing. Especially as we were just starting to relax and relish going for drives and visiting family. 

It was certainly a lovely time and we should have known it wouldn't last long. Typical of events with this horrid virus... it took us back to nine months lockdown just past and coming just when we came up for air!

   

I just want to stay in bed!

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

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

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

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

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

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

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

 

Help is on the way!

So last week I got a phone call from the Aged care people to inform me that they can send a woman to clean for me. She will be wearing a mask and social distancing they tell me...

She is coming today early in the morning, so I have gotten up, dressed and breakfasted and stripped off our bed for changing. My fibromyalgia is flaring, but I have had to ignore my sore muscles and look to the next few hours when the cleaning lady is here.

You can't imagine the relief I feel as we can't manage heavy cleaning anymore. Vaccuuming, mopping and bath/shower cleaning knock us both out. As I have said to the Aged care people, I can do things at waist level like cooking and washing dishes. 

I no longer use the clothesline to dry my washing which is a shame because there's nothing quite like fresh laundry that's been dried by the sun. However, since my polymyalgia rheumatica bouts, I have trouble raising my arms: it even hurts to brush my hair. Which is why I now wear it short. It's manageable.

Today is the day I refill our medicine containers and that means that later on I will have to get to the chemist to get prescriptions refilled. I also need to buy electrodes for the glucose monitoring machines.

Our sugars are still too high, even though Chris is now on 20 units of insulin twice a day plus his oral medications. I have been put on Januvia 50mg a morning with 2 diamicron tablets. We are not winning this battle against diabetes 2.

So I am looking up dishes to make that are low GI and trying to learn about reducing blood sugar. And although it seems like I am taking steps backward, at least I am winning in the cleaning stakes because mercifully, thanks to Centrelink, help is on the way!