So very grateful

So we were watching TV together when I noticed Chris was shutting one eye and then the other. Then he told me he had a really bad headache.

I gave him some paracetamol and he fell asleep on the couch after taking it.

A day or two afterward, he was looking at me and I noticed his left eye was turning in. That's when the double vision came into play...

After putting up with it for a week, Chris decided it wasn't getting better, so we went to the ED.

They noticed his right eye stares straight ahead, making the left eye turn like it should, but causing double vision which made him feel nauseous.

They noticed his blood pressure was quite high and started him on more medication for it. They ordered a Cat Scan on his head and admitted him.

The CT scan showed no abnormalities, so they followed up with a MRI which did. Chris had had a stroke in his cerebellum.

It was not a bleed but rather a blockage, and they believe this caused his double vision known as Cranial sixth nerve palsy. They don't know if it will be permanent or not.

They are treating his blood pressure,  upping his insulin for the diabetes and putting him on aspirin as a blood thinner, as well as giving him statins for his high cholesterol.

He will be treated by patching one eye to avoid double vision and taking the aforementioned medications. This will be punctuated with GP visits, physiotherapy visits for eye exercises, endocrinologist and neurologist.

My fibromyalgia has flared as I am exhausted. I stayed everyday of his week long hospital stay from 10-7pm. The weather was changing all the time as we are in our spring and I have had angina because the stress was mind numbing..

We are so very grateful that the stroke wasn't worse and we are praying believing that the eye nerve damage will sort itself out. Also we are praying that he doesn't have another stroke.

Mostly we thank the LORD for another chance at life together..

 

I think I could sleep on the freeway.

We visited the doctor today.  I have extremely high blood pressure which the doctor feels is due to my fibromyalgia pain.  It has flared since the move and I have gone grey overnight.

He is increasing my antidepressants as I am stressed to the max. He believes they may help in my fibro pain. He has not offered anything for pain as yet. 

I feel totally exhausted and I need to help Dianne for the next month as she can't drive.  My spoons are gone before I surface each day.

My exhaustion is such that my legs feel like they can't hold me up. Yet like helping my daughter and looking after my sick husband, there are things that just have to be done.

My grandson walked to our place from school today and found no clean cups for a drink. I told him he will have to wash one out for himself as I have been so unwell that I haven't been able to stack the dishwasher.  

He selected a picnic cup instead of washing one and then asked to be driven home. I felt guilty that my kitchen is a mess but Chris has fluid build up in his lungs due to living with heart failure and hasn't been able to help.

As a fellow counter of spoons, he has to save them for driving Dianne to doctors' appointments and physio, so I do not ask that he helps with the housework.

My extra antidepressants are kicking in and I am feeling tired as we speak. I must straighten my bed first as it is very uncomfortable as it is. I need a good night's sleep.

It is true that you sleep better in a tidy bed. The way I feel right now, I think I could sleep on the freeway. 

It's all too much

 

So recently I have had chest pain in angina and breathing problems coupled with what I thought was fatigue from an ongoing fibromyalgia flare.

My blood pressure sky rocketed, requiring a visit to a cardiologist who ordered an echocardiogram. My general practitioner told me if the results were bad, he would contact me. And he did.

I got the call last Friday telling me to make an appointment for a phone consult so I ended up speaking to the doctor on Monday. He told me I have heart failure due to Pulmonary Hypertension.

There is no cure for it but there are some treatments. I am already on blood thinners which I will stay on as PH can cause blood clots in the lungs. I already take 7 blood pressure tablets a day.

I often have felt dizzy and this is another symptom of PH and I feel like I can't get enough air in at times. The time will come when I will probably need oxygen at home.

Forget about exercise- I nearly collapse with exhaustion after walking up our long passage to answer the door.

I will know more tomorrow when I see the doctor in person. This is needful because he wants to check out the swelling in my feet, ankles and legs. I suspect I have fluid in my abdomen too. It hurts and is tight like a drum.

I had a blood test yesterday to check on my kidney function and this will be a regular thing.

Lately it's been one thing after another and I am a tad depressed. Prayers would be much appreciated. It's all too much! 

It's OK to have a simple Christmas

As you know, I have been having problems with my heart and fibromyalgia. My blood pressure is barely controlled and I am constantly tired.

We have decided to cancel Christmas this year. I haven't even put up a wreath on the front door, let alone, a Christmas tree.

We are staying home and nobody is coming. Contrary to how I would feel in years past, this year's plan gives me peace.

We plan to play games online with my sister and son. There's nothing like a game of online Scrabble with familiar people who are well matched in scores.

None of us is able to attend church these days but that doesn't stop us from worshiping God and remembering Jesus on the day we choose to celebrate as His birthday.

Next week I will be ordering my Christmas food and I will be buying a ham and organic salad vegetables for Chris's and my lunch. I will also be buying some grape juice and matzo crackers, as we plan to take Communion online with my sister and son like we did last Easter.

It is not an ideal Christmas, but with all of us feeling unwell, it is making the best of a bad situation.

We all feel that as long as we remember that God sent His Son Jesus to bear the sins of the world and be our Saviour, then that is what Christmas really is.

Besides, the first Christmas was extremely unpretentious and simple. It's OK if ours is too...

This is a great help

 

As you know, I have been having problems with my blood pressure. So I have had to plan my days to include a lot of rest without having my house looking like it's been burgled.

Not for the first time, I have integrated the Lists for a chronically ill home keeper into my day. I will be following these Lists from Sylvia Britton of Christian HomeKeeper for the next week or so.

I find them invaluable. Here's the link if you want to try them too.

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.

Not falling off the vine

 

Since turning 70 last May, I have noticed a rapid decline in our health. Heart issues are worsening, pains are hurting, fibromyalgia is making spoons are scarce and my mood is darkening.

We both are enjoying the peace in our home that has been jealously guarded and nurtured. Quite simply, we cannot cope with other's dramas.So much so that we have become reclusive.

The days when we don't have to leave our home are cherished days. And even though we make a point to get dressed each morning, we are not adverse to having a couple of Pajama Days occasionally.

In short, we are wearing out. Physically, mentally and emotionally, we are spent. I can say that we aren't spiritually spent because we pray and worship a lot. It does help.

I have been posting a little spasmodically because of excessive fatigue, and I have decided that from tomorrow onward, I will post in a diary form recording bloods, blood pressure and so on. Plus anything else the LORD puts on my heart.

Today is Sunday and I have just done the least I can do to keep our home manageable. With the fatigue being bad and no spoons, I took a nana nap and it turned into a grandma nap. Three hours.

But I woke up and felt a bit better and managed to fold some clothes that had spent their new clean life in the laundry basket...

Anyway, I had a comforting thought which I will share: there's an old saying that the aged say... "I am so ripe that I am falling off the vine!" Not very comforting. 

But the next thought was comforting- physically, yes I am- but spiritually, not so. Instead I am grafted into the Vine- Jesus and He sustains me and gets me through this painful path called life...

So, with His help, I am definitely not falling off the vine! 

It starts with you

  

Lately, I have realised that one of the reasons for my high blood pressure is probably in the way I stress about not being able to do what I want due to fibromyalgia.

Although I know that I am not to blame for being ill, I sometimes find myself berating myself and feeling cross that I am a lame duck. It really gets to me at times.

Often I succumb to false guilt, the guilt that comes from matters that are not in my control, and it is easy to go to the Pit of Despair. You do not want to go there.

On rare occasions, I burst into tears and it is then that Chris usually comes to my rescue, pointing out that it's not my fault, that whatever needs to be done can wait or he promises that he will do it...

It made me think that sometimes I am my own worst enemy. By self-condemnation, I am making a sad situation worse for myself.

When I realised that it was my thinking that makes me get so down sometimes, I smiled at the irony: usually I am trying to validate my tiredness and pain to "normals"- those who do not live with chronic pain and no spoons. Now the "normals" are validating me.

So today, after cleaning my kitchen and making lunch, I am going to "the beach" again. I am going to relax and only get up again when it is time to cook tea.

I am going to start to speak to myself as I would speak to someone else who was ill and blaming themselves: lovingly and kindly. Which just doesn't come naturally to me. I have patience with everyone except myself.

Taking the pressure down

 

There's no nicer time of the day than the evening. All the angst of fighting pain and battling fatigue with fibromyalgia, diabetes, angina and spinal problems is over for the moment...

Whatever the worry of checking and medicating sugars and blood pressure is has been and gone..it is what it is.

As the sun goes down and the moon rises, there is the hope of a restful sleep and whatever chores were meant to be done are either completed or waiting for tomorrow.

We can rest and wind down, enjoying whatever simple pleasures we have left after the raviges of pain and illness. Whatever helps us unwind and take the pressure down is welcome and wanted..

The drapes are closed, the fire lit, the kettle has recently boiled and a tea tray awaits our attention..a final sip of our favourite beverage accompanied by quiet reflection and conversation.

One knows that the morning will bring its own anxieties that life struggling with chronic illness brings, but for the moment the hope of a restful night's sleep resides in our bosom... hope is what keeps us going.

As we lay at last in our bed awaiting sleep, we can reflect on those things that light the wick in our candle of hope. Those things that have given us comfort and peace throughout the preceding day..they are worth remembering...

Being thankful for the good things in our day helps us get a better sleep and is a way of taking the pressure down...

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! 

Failing fast

You may have noticed I haven't been posting much lately. Fibromyalgia, heart disease, high blood pressure and now boils have taken over my body all at once.

My body is failing me and the fatigue is not only sapping my strength but my mental faculties. It is hard to formulate a sentence these days.

I have been to the doctor. My blood pressure meds have been increased (200/86) and that in itself makes me tired.

These days it takes me all my time to look after Chris and my home. Forget socialising.

I am on the strongest oral antibiotics, taking 9 a day. They have brought the boil on my spine to a head. I am waiting for it to pop itself, rather than try to squeeze it. Though I think I would die from the pain if we tried to do that. The boil is quite large.

I pace myself to try to eke out my meagre spoons but I find I just have to have a nana nap in the day to have enough spoons to cook dinner.

I am praying that I feel better for Christmas as we are having family here for lunch Christmas Day. Most certainly I will have to be stronger than what I am now. My body is failing fast.

Worth every cent!

 

I have enjoyed using my Roomba robotic vacuum so much that I have bought another robotic vacuum that also mops the floors.

Our home has lots of tiles on the floor and it takes a good deal of spoons to keep them clean. These two robotic vacuums saves me on energy and pain.

There's been little energy and a lot of pain these last few weeks. My blood pressure is still high even with me resting more. It's a bit of a puzzle really as emotionally I am good-or as good as someone with constant fibromyalgia pain can be. So I am not stressed.

I am enjoying our new home and it is finally decorated and things unpacked. I have also been decluttering and have given away quite a few things that I found were only taking up space without bringing me joy.

Anyway, I highly recommend all Sacrificial Home Keepers get a robotic vacuum- preferably one that mops as well as vacuums. They are coming down in price but I assure you, they are worth every cent!

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! 

Having patience with yourself.

  

Lately, I have realised that one of the reasons for my high blood pressure is probably in the way I stress about not being able to do what I want due to fibromyalgia.

Although I know that I am not to blame for being ill, I sometimes find myself berating myself and feeling cross that I am a lame duck. It really gets to me at times.

Often I succumb to false guilt, the guilt that comes from matters that are not in my control, and it is easy to go to the Pit of Despair. You do not want to go there.

On rare occasions, I burst into tears and it is then that Chris usually comes to my rescue, pointing out that it's not my fault, that whatever needs to be done can wait or he promises that he will do it...

It made me think that sometimes I am my own worst enemy. By self-condemnation, I am making a sad situation worse for myself.

When I realised that it was my thinking that makes me get so down sometimes, I smiled at the irony: usually I am trying to validate my tiredness and pain to "normals"- those who do not live with chronic pain and no spoons. Now the "normals" are validating me.

So today, after cleaning my kitchen and making lunch, I am going to "the beach" again. I am going to relax and only get up again when it is time to cook tea.

I am going to start to speak to myself as I would speak to someone else who was ill and blaming themselves: lovingly and kindly. Which just doesn't come naturally to me. I have patience with everyone except myself.

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.

We both are spoilt girls

With heart failure and certain blood pressure tablets, my feet and legs puff up with fluid. I have pitting oedema which means that the indent when a finger is pressed on the limb, stays for a long time. My heart is not working as it should.

At the end of the day, when we watch TV together, Chris will automatically reach for my feet and gently massage them, rubbing the fluid upward towards the heart. He also rubs my toes which burn and sting with neuropathy from diabetes.

The other night as Chris rubbed my foot, Xena jumped up onto the couch and lay beside me. Not wanting to miss out on cuddles, she put her paw up on Chris's arm, purring loudly. It was a lovely relaxing time and helped lift our depression. 

Neither Chris or I are doing too well physically at the moment. Chris's sugars are uncontrolled and he has fluid on his lungs from heart failure.

Such is the loving nature of this man that he rubs my feet continually, even when he needs his own done. I do rub his feet and legs at least once a day and when I cut his toe nails for him. But it must be said that his ministrations to me are more frequent than mine to him. I simply have no spoons at the end of the day. 

I manage the house with all that entails and Chris knows that my spoons are in short supply, especially with a fibromyalgia flare, and so he seeks to bring me some comfort and pleasure at the end of the day.

Xena seems to pick up on the loving atmosphere and always makes sure she's between us in order to be included in the cuddles. 

She loves her Daddy too and we consider her as our feline child-and because she loves her Mummy as well, she purrs contentedly as she wonders which one of us is a spoilt girl. We both are spoilt girls.

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.

I am very grateful!

I am feeling excited today because I actually feel human. I even have a few spoons! This is so unusual that I feel like throwing a party! 

The Prednisolone has helped me get over my polymyalgia rheumatica and fibromyalgia flares and I am weaning off them. My blood pressure is coming down too.

It probably is because Chris had a good report from the doctor on Wednesday. Fluid in his lungs, on his legs and feet is gone. Bloods are better as are his sugars. Just high BP but not overly worrying.. He's sleeping in bed again... so. very. grateful! 

Those of us who are chronically ill know that stress exacerbates our illness and it certainly was the case the past fortnight. 

I am keeping up with the dishes as I mentioned a few days ago and I am pleased to report to you that they are still under control.

Today I have done a load of washing and I am presently washing and bleaching all my towels as I have been chucking them in the washer without sorting the wash and they are a horrible grey colour.

With the dryer my spoons will not be taxed too much. I am doing roast chicken, roast potatoes, and vegetables for dinner.

An old hand at pacing myself so as not to burn out for tomorrow, I will be resisting the urge to do more than I should.

In the recesses of my mind, I can vaguely remember that feeling of joie de vie that comes with youth and health. It's almost how I feel today. I am very grateful.

Hand over the Prednisolone!

I was too afraid to take the 5mg Prednisolone x 3 tablets the doctor gave me Monday for my polymyalgia rheumatica flareup and arthritic deformed hands...

He said to take it for a week and see how it goes, but I was so scared of the side effects that I wondered if I should avoid it. I know it will raise by blood sugars and I am diabetic. Also, I know it will raise my blood pressure. But still, the pain is rising so much that I really don't know what to do...

I have temple pain with the PMR and I am scared it may go into giant cell arteritis. I had them in my hand that morning, chickened out and put them back in the bottle....

I had a phone consult with my doctor later today and I discussed what was worrying me about taking Prednisolone. We discussed the risks and he asked me to try it till Monday when we both go to see him. My ESR was very high (50) so he is pretty sure it's PMR back again. So this morning I took them.

It's evening now and I am exhausted but feel a bit edgy so I am not in bed yet. I know this will sound untrue, but this arvo I have been able to move my thumb and bend my fingers for the first time in months! I hope it continues...

Twelve hours in, in the midst of this battle with pain, it seems like a miracle cure! I am a new fan. I am glad now that I weighed up the pros and cons as I weighed my burgeoning body.

Unable to hold a cake knife, I shouted to my husband, "Hand over the Prednisolone and no one gets hurt!” as I reached for another piece of comforting cake.

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