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! 

Spoons are a distant memory.

 

Lately I have had a flare of my fibro flare. It's resulted in the most epic fatigue that it seems just breathing is an effort.

It's actually been going on for months. I keep referring to it as a flare, but today I realised it's a flare that never gives up. It's eternal- with no discernable beginnning and no end in sight.

I can sleep for 12 hours and still have no energy. 

We eat good nutrional food. I cook everything from scratch, but the ennui and corporeal exhaustion still remain.

I often think if I just have this or another cup of that, it will help me regain some spoons, but unfortunately nothing seems to help. I never got my first wind, let alone catch my second! 

My doctor is going to run some tests especially focussing on my thyroid and iron levels. I personally don't think it's that. My iron levels have been consistently high and my thyroid level is normal and has responded to my Thyroxine which I take for hypothyroidism. But I will do the tests anyway.

No, I think fibromyalgia is the culprit for my physical exhaustion. It seems now to be a way of life. 

Spoons are a distant memory.

For me, it's spoons!

It's Sunday morning here. I have brought in the online groceries and checked them off and put them away. 

I will soon be taking Chris's bloods and doing breakfast. Breakfast will be eggs and bacon and a cup of tea. Lunch will be ham and salad sandwiches. For dinner, I am doing a vegetable intensive beef stew. Fresh fruit for desert.

There's a hamper of clean clothes to fold and then I will be up to date with washing. Later I plan to make some coleslaw, if spoons permit. 

That's about it for today, except for cooking dinner. I don't want to put myself into another fibromyalgia flare or I won't have spoons to help my daughter tomorrow. As I always say: most jugglers juggle balls, for me it's spoons! 

A big part of my life

It's 11.30 Saturday morning here and already we have been to have blood tests, come back and had breakfast and I have done a load of washing, folded clothes and stacked the dishwasher. 

They weren't able to get blood from me today so I have to come back Monday. This in spite of drinking water beforehand. 

Chris is sleeping and I am thinking of having a nana nap as I have no spoons left. So tonight I will be cooking pork chops with mashed potato and salad. I may serve a fruit salad for dessert.

The fibromyalgia is flaring and I am aching all over. I haven't recovered from the move yet. In spite of knowing I could/should do some more around the house, I know that I need to rest or tomorrow will be a repeat of today. Pacing and resting are now a big part of my life since fibro.

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.

Spoons aren't transferable

 

So this morning I needed a shower as I have an important appointment later on in the day. With lockdown and being home most of the time, I have been fairly relaxed about it, but not today.

I did our bloods, gave Chris his insulin injection, ate breakfast and ran the shower. It was heaven on my aching muscles and I let the water run on my sore neck and back. I washed my hair and body and then started to feel weak.

Out of spoons, I sat on the side of the bath trying to catch my breath and get my second wind. It didn't come. 

By the time I had finally got dried and dressed, I was literally shaking and sick with fatigue.

Looking at the clock, I realised that in a few hours I will be leaving the house and walking around. Which normals think as normal, but us sufferers of fibromyalgia and other chronic illnesses know, we have to balance everything in the spoon equation. Once spent, they're gone! 

Sitting down to rest and trying to garner some spoons of energy, I realised once again that I simply cannot shower on days I have to go out to an appointment that simply cannot be postponed. 

You would think after 20 years of fibro that I would have learned that spoons aren't transferable.

The last one didn't make it home!

So this morning I am in my study checking my emails when I hear Chris talking in the nearby kitchen.

"So which of you is gonna be brave this morning?" he asks his upheld fingers as he searches for a digit that hasn't recently been jabbed for glucose testing..

They are all sore and he is running out of fingers... "Come on, Chaps! I want a volunteer!.... right then, You- step forward!"

I am giggling to myself because all my fingers are sore as well... but I stopped giggling when I heard him call out  "12.9!" -that's a high number for a fasting test.

Going to the kitchen to write it down in our diabetes diary, I asked Chris to retest it... sometimes the monitor needs recalibrating. 

I recalibrated it as Chris again studied his fingers. "I want another volunteer!.." I felt bad when the   result was still 12.9! All for nothing too with no need for the last volunteer  who didn't make it home. 

It's enough to drive me to drink!

So Friday I was talking to my new doctor about my back problems and asthma problems, my blood results and consequent treatment. My cholesterol and sugars were good as was my thyroid thanks to Thyroxin tablets. 

My uric acid levels were good, which they should be with me on medications to stop making kidney stones. And the conversation went like this: "Your uric acid level- have you always had high uric acid in your blood? No? well it probably is due to alcohol intake!" "Excuse me? I don't drink alcohol at all!" "Oh really? well- good: good! So it's just in your blood... OK!"

He was running through the blood tests which showed my liver GGT was unusually high. "Why do you think that is, Doctor?" I asked. "Probably too much fat or excessive alcohol intake!" "Ahem- I don't drink alcohol at all!" "Oh, yes. Of course!" 

I do not drink alcohol, but his reaction to my liver problem and high uric acid level annoyed me somewhat. I mean, if it was a problem, I would tell him so instead of worrying myself as to what it is caused by.

My blood pressure was slightly up which isn't surprising when I am meeting a new doctor. Especially one who suspects that his new patient is a drinker of the new wine! or casks thereof! 

So next we had a discussion on which diet program to follow as the fat lady with the drinker's pot belly needs to lose weight.

And right in the middle of a discussion of Keto and diabetes, I stopped mid sentence and lost my train of thought. Embarrassed beyond belief, I told him I was having a bad fibromyalgia day and it was just brain fog!

He just looked at me over his glasses and I could tell what he was thinking... it's too much imbibing of alcohol that does that!... 

Leaving the clinic with a handful of diet pamphlets and scripts, I asked Chris to drive me straight home. 

I headed for the kettle to make myself my favourite beverage- tea. But I swear I was so upset by the insinuations that I cried out to Chris's surprise, "It's enough to drive me to drink!" and it almost is! 

Sometimes old school is better

So when we lived in the fifth wheeler, we needed to find a vacuum that actually picked up cat fur, wasn't heavy and didn't take up a lot of room in storage.  We bought a Dyson V6 Animal with disappointing results. 

It became clogged with Xena's fur mainly and it was difficult to unlatch it to empty. At $700AUD, it wasn't cheap.

While it was kind to my sore back, it was not at all kind to my arthritic fingers. In fact, as soon as there was the slightest relaxation of pressure on the red button to run the motor, the thing died.

Last night Chris was able to resolve a problem of it stopping and starting erratically. He dismantled it and cleaned the filter and removed dirt from around the collection area. It improved and pulsed properly, but it still is a big disappointment. It simply blocks up too easily and quickly. 

For those Sacrificial Home Keepers with arthritic hands and fingers, or fibro hands, I would not recommend a Dyson. Something old school that runs with a power cord would work better.

Fortunately, we have a Volta Red Devil that has a long cord and we find this better in the long run. Unkind on my back, it doesn't hurt my hands or fingers. Sometimes old school is better.

Today we had our blood tests for diabetes: HBA1C. We went to the chemist to pick up some prescriptions and headed home. Chris needed his insulin injection and breakfast.

I am under the weather with fibromyalgia- same old story: weather changes = pain. So I followed the Wednesday List on Sylvia's Lists and had a much needed nana nap.

We are having a late dinner tonight as we have to wait 8 hours between Chris's injections as we were late with it due to the fasting this morning. Not feeling overly hungry, we are going to just have a frozen dinner.  We eat really well most nights, so a frozen meal occasionally won't harm us.

I am a firm believer in eating nutritious foods and we live on three veg and meat dinners cooked from scratch.  I know take away and fast foods are convenient, but once again, old school is better...

I am wearing my blanket!

We are in our winter here in Australia and where we live in a small country town, it gets very cold. Sometimes it even snows. 

With my thermostat being broken due to fibromyalgia and then being on blood thinners for my stents and antiphospholipid syndrome, my blood is like water and I really feel the cold.

You kinda know your blood is thin when you get a blood test with your husband and when it's standing in vials next to mine, his is dark red and mine is watery pink! So yes, I feel the cold keenly.

Our home is all electric and of course our only heating is electric too. So when the bill came, I gasped when I saw how much it cost! 

When I saw the Oodie on Face Book, I asked Chris if I could have one for my birthday! I ordered it in April but didn't get it until the beginning of June. Just in time for the coldest months in Australia. I figured that if it was as warm as they say, that it would recoup the cost in just one billing cycle!

Now Chris is from England, and he is quite used to the cold and doesn't feel it like I do. When he saw how warm I was without using the little fan heater in my study, he mentioned that he might like one for his birthday!  Since getting older and feeling ill with high sugars and vertigo, he declared that he was now feeling cold too.

So he tried it on and apart from mine being the pink you see in the picture, it was perfect! So I ordered a navy one for him. Size is not a factor as they are made oversize and one size fits all! 

The only problem is that he won't get it until July as they are pre-ordered and very popular here!

They are expensive and I got mine on Afterpay which helps a good deal. We love Afterpay!

Today is Monday and I am doing Sylvia's Lists today as I am feeling under the weather with fibromyalgia flaring. The last few weeks have been stressful, especially the day Chris was taken ill and I thought he had suffered a stroke.

We then had to sort out his new insulin regime which I did, and although he is now improving, I still am suffering rebound fibro flares from the stress.

I am planning to cook lamb strips in a marinade of mongolian beef with green veg and mashed potato for dinner. Depending on Chris's sugars, I will serve some artifically sweetened jelly and sugar free icecream for dessert.

By the way, I am not getting paid to advertise my Oodie. I just wanted to pass on my great comfortable friend for your consideration to anyone here who feels the cold. I really love mine: I can find anywhere is a great place to sit and be cosy as I am wearing my blanket! 

Flat out like a lizard drinking

Our little white cat, Xena has found the perfect spot for a daytime sleep. We have her little bed in front of the back sliding door and she loves sleeping in it. The sun comes round after 11am and shines right in on her. Until it gets too hot, she sleeps happily in it.

We have been enjoying the autumn or fall afternoon sunshine as well as the days are cold but the sun coming through our door is delightful. Plus, it gives me Vitamin D which I am low on.

I am taking my afternoon nana naps on the couch now. With the door open a crack, we can hear the stream running behind the property, and of course the birds are chirping. It's hard to keep awake with the heat and birdsong. So I give into it.

Later on today I am going to purchase some magnesium tablets in an attempt to relieve myself of the muscle pains and calf cramps. I think maybe it's not just my fibromyalgia so I think it won't hurt to give the magnesium tablets a go.  My last blood test did say I was low in it. I am just so over being in pain.

I think more than being in pain all the time,  my sometimes being snappy with Chris hurts me more. I am so very glad he says he understands and doesn't hold it against me.

On my to list today is to do the tea dishes- (yes I left them last night) and to do some rissoles with mashed potato and veggies for tea.

Apart from that you will find me on the couch taking in the sunshine, flat out like a lizard drinking!

You can't have one without the other!

Having to pace myself yesterday, I woke with some spoons which was just as well as we had to take our daughter to the Alfred Hospital in Melbourne. She is a survivor of APML leukaemia and she needed her six monthly blood tests in preparation for her visit with her haematologist next month.

As we had to be in Melbourne early, we had an early start from home. We virtually just had breakfast, dressed and ran out the door. So no lists or housework plans were made. That will have to be tomorrow.

The trip was 400kms all told and it was very tiring. For all of us. We all had a nana nap when we got home.  We got some fish and chips on the way home as we just wanted to eat and crash.

In this picture of the Alfred, you can see the room I was in when I had my 3 stents put in in 2007. It's the third level, last window on the right. Chris and I would watch the helicopters come in on the heliport just in front of the hospital. It is built over the road and leads directly to the Trauma Centre.

So, housework wise, it was a dud of a day, but we were able to help our daughter with her cancer journey, fulfilling our promise to her the day she was diagnosed. 

In chronic illness you sometimes have to push yourself to live the life you want. It isn't easy: in fact it takes a lot of determination and prayer.  Lots of both. I don't think you can have one without the other!

The life is in the blood!

Today we went to see our new doctor for our blood test results. Basically we are doing OK except for our diabetes. Our sugars are quite high. But I have low magnesium and vitamin D. I will have to get some supplements for those.

So we are both on new diabetes medications with strict instructions to cut out sugar and to visit the chronic illness management nurse next month for a care plan.

I have grocery shopped today with weight loss and lowering of sugars in mind. It has been a busy day and I am almost ready for bed.

Today was a wipe out as far as housework is concerned. I didn't follow any list, in fact I had enough energy to blink my eyes and breathe. Good job it is involuntary.

Hopefully tomorrow will  be easier. Tomorrow being the first day of my new resolve to lower the sugars. 

We like this new doctor and we know he would be genuinely pleased if we did as he suggested. There's no hiding from him if we don't become proactive in regaining our health: the next blood tests will tell the tale- the life is in the blood! 

It has to be enough!

Since moving here, there is always something to see in our backyard. It's like a screen saver: it's always changing.

This morning I found some rosellas enjoying the seed Chris put out for them. They were later joined by some King Parrots: green headed girls with red and two shades of green in their feathers, with the boys red headed with the same two shades of green feathers. 

We were woken up with a kookaburra laughing outside our front garden and he was later joined by some magpies warbling. If you love birds, you would love our place! 

I am in need of a nana nap this afternoon to tide me over till tea time. We saw a new doctor recently and we needed to get our blood tests done today. We fasted for these ones and in spite of my drinking heaps of water,  the phlebotomist couldn't get any blood- in three tries, nothing.

So Chris had to drive me to another clinic 20 minutes away and she got it first go. I was praying and sweating as my veins are very tricky. They wimp off at the first sign of a needle.

My spoons are all gone so very little is on my to list:

1. Rest
2. Cook chops, veg and mashed potato for tea

It's not much of an effort, but it's all I can do today. It has to be enough!