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! 

© Glenys Robyn Hicks

Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand.’ Isaiah 41:10

We have to talk

So I am aging, overweight, have had over 50 kidney stones and 5 surgeries to remove them when they were impacted, and have given birth to 6 children.

Because of this, I used to find that a sneeze could have disastrous results, causing me embarrassment and discomfort as I wet myself. So much so, that I went to a physiotherapist who taught me how to exercise my pelvic floor using Kegel exercises.   They helped me quite a lot.

Nothing else has changed - one cannot change the past- but the only difference was my consistent Kegel exercising. This is for men as well as women, I was told. Anyway, I recommend them to everyone who has stress incontinence.

However, as much as Kegels have helped me, I have noticed that when I am in a flare of fibromyalgia, often I rediscover the joys of stress incontinence. 

It seems to me that fibromyalgia weakens my muscles in my pelvic floor and causes lack of control of the bladder. Just another problem fibro brings that many don't recognise or talk about.

I have purchased some undergarments that absorb urine yet look like normal underwear  I wear them when I am in a fibromyalgia flare, and they do a great job. (There are similar ones for men) It seems lately as I am in almost a constant state of flaring, that I am wearing them more often. 

It's just another pain for us Fibromites to endure, and I hope by sharing about this, it helps you if you have the same problem. It's nothing to be ashamed of and it's something we need to talk about.

I'm no longer a bunny!

 

So Easter has come and gone and so have all my spoons! I have been under the weather all over Easter and have a constant fibromyalgia flare, coupled with spinal pain.

With moving the homemaking help for the elderly stopped and it would take a long time to get it all arranged. We have decided to enlist a woman to clean for us fortnightly again.

This lady is very efficient and friendly as well and although we enlisted her for once a month cleaning, the truth is I need her fortnightly. I can maintain our home in between her visits, but with once a month, the house is needing a more thorough clean and therefore took more than the two hours I hired her to clean.

As always, I hate needing to have help these days, and Chris is too unwell to help me. It is what it is..

You would think that with having back pain for forty years and fibromyaglia and angina for twenty, that I would be more gracious to myself. I should be accepting my lot, but being a woman, I still find my perceived worth as a homemaker is dictated by how fast I spin my wheel without help.

So with my 70th birthday here in a few weeks, I am just going to have to accept my handicaps and be merciful to myself.

I should be glad that I have a husband who agrees to hiring help. A lot of women don't. So I will just stop the pity party and enjoy this season where we can afford her...

And also, when she comes, I am not going to clean the house before she comes... I am a  perfectionist, but no longer... where housework is concerned, I will get the help I need. I'm no longer a bunny!

© Glenys Robyn Hicks

God is my strength and power: and he maketh my way perfect. 2 Samuel 22:33

Making the most of my spoons

So for the last few days I have been enjoying a respite from fibromyalgia pain. The weather has been lovely and sunny and the warmth has permeated my being and soothed a lot of muscle pain.

I have been decluttering our home and making extra meals to freeze for later on. It has been a novelty and a joy to have spoons to do it.

Aware that it can bring on a flare if I do too much, I have been pacing myself. I do 15 minutes sessions of decluttering with a rest in between. With cooking, I do about half an hour of food prep then take a rest as well.

I am enjoying my new dishwasher too. It certainly makes keeping up with the dishes and keeping my kitchen tidier easier. And that I find, encourages me to cook.

I really don't know how long this respite will last, but I'm grateful each day that I have absence from pain and fatigue.

Until you have a respite, you don't realise how challenging your life is. So for the moment, however brief it may be, I will be making the most of my spoons.

 

Keeping the homefires burning

 

Lately I have had a really long and debilitating fibromyalgia flare. I think it was brought on by stressing about my son who had a large kidney stone removed and was suffering badly with his kidney stent.

With over 50 renal stones and 5 surgeries to remove them, I literally felt his pain. He has been out of work due to his ordeal for 6 weeks and so it has been a worry to him and to me..

My fibromyalgia flare has effected my eyes some days. I have trouble focussing especially when reading and I have had double vision. That has been accompanied with the usual pain and the fatigue is out of this world.

I have found that just running our home to a basic plan has been more than enough for my body and after I do a few household chores, I feel so weak that I almost vomit. I just have to take a nana nap.

The life of a Sacrificial HomeKeeper is not an easy one. But we somehow push through those walls of fatigue and at least keep the homefires burning...

©  Glenys Robyn Hicks  

"I love you LORD my strength!" Psalm 18:1

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'm my own worst enemy!

When I have no spoons or motivation to do housework, I often watch Youtube videos of people cleaning their home. Sometimes it works and I feel that I can get something done.

This can sometimes go against me because often the videos are of women half my age, with no disabilities and therefore no need to worry about spoons or flares or having to take a nana nap.

They seem to be cleaning houses that are already immaculate and they make it look so easy. Their homes outshine mine in every way, and so does their appearance. It can make me more depressed if I am in a flare of fibromyalgia, trying to get motivated to clean and teetering at the edge of the Pit of Despair. 

So I have to take Chris's advice and remember that I am an older woman with chronic health issues and try not to compare myself with them. But the desire to kindle a spark of motivation is strong and I find myself gravitating to those videos like a moth to a flame. And often it only makes me feel worse!

Sometimes, I think I'm my own worst enemy! 

It makes my spoons quiver!

So yesterday we had more family come for Christmas. We had a lovely lunch, feasting on the abundant leftovers from the feast on Christmas Day. 

Because I had pushed myself physically the day before, my fibromyalgia was flaring and my back was spasming because I had been on my feet preparing food for a long time. I was feeling overwhelmed.

I was feeling hospitable, it was just because of pain that the day was on a downer for me personally. I tried my best to be cheerful. We Fibromites and chronically ill people become consumate actors in playing the cheerful game.

My step-daughter was very gracious and helped me make teas and coffees and carve left over ham, and not for the first time, I was very grateful to her.

With 35C temperatures- 95F, I was also very grateful for our air conditioner. The dining area was very comfortable and we passed a pleasant day.

My little 4 year old great-granddaughter Evie came to me and asked me to show her my bedroom. So taking my hand, she led me to my room, looked at the ensuite, and declared, "Nana, I love your house, and I love you too!"  It made my day.

Her declaration of love warms my heart even now as I talk to you. I am sitting here in fibro pain with my two freshly broken purple toes throbbing. (I kicked the corner of the dining table leg, collecting two toes for the price of one.) But the happiness of my little lovely Evie's declaration overshadows even the pain today.

The house is tidy, the washing in the machine and the Christmas tree and decorations are put away. My robotic vacuums have been run today. We are now officially post Christmas.

We placed the tree still decorated into a closet that is empty, and should the LORD tarry, it will be a simple matter to reinstall it next year. Not that I really can imagine another Christmas right now. 

Quite simply, nice as it was, it makes my few remaining spoons quiver! 

It's all I can do this year!

So I did a thing that stripped me of what little spoons I had. I took a shower and went to click and collect a few Christmas gifts I ordered on line.

I came home and cooked dinner and had a bad asthma attack. I couldn't breathe properly. Chris tidied up the kitchen for me and I sat down for a while until I felt better.

The Mother of all Fibro Flares has paid me a visit. I ache everywhere and feel too exhausted even to talk. It is nearly 11am here and I am ready to go to bed. I will have a nana nap.

You just have to listen to your body in times like this. Hopefully I will wake up with some spoons Christmas Day.

As we now have a large enough home for guests, we will be hosting Christmas this year. I am having a simple traditional meal and that's all...

I am too pooped to worry a great deal about Christmas this year. We have bought a few things online and that will have to do. Sometimes you just have to rest your tired twinkle! 

Apart from cancelling Christmas, it's all I can do this year!. 

It gets tiresome!

Over the last few days, I have had a cancer scare with someone dear to me, and my fibromyalgia has flared and with the pain comes that most embarrassing symptom of all: fibro fog.

I was talking on the phone to my sister, and was telling her something that had happened, but I never got to finish what I was saying. I got distracted mid-sentence and never finished the tale.

Unsure of her knowing of whom I was speaking, I digressed in a discussion on who he was, and when I tried to remember the point of discussion- I simply forgot.

Being that my sister also suffers from fibromyalgia, she understood-otherwise it would have been totally embarrassing. But there have been times in the past when I simply can't think of a word and flounder.

Like the time I was at the doctor's and was telling him something important. I simply forgot a word and there was a pregnant pause as I floundered to find it- embarrassment made it more difficult to find. He just looked over his glasses at me until I ventured to say that my fibro was flaring and this isn't usual for me. I am usually verbose.

Many times during a fibro flare, I can be reading something and it just doesn't sink in. I reread it and reread it before it is clear what I have just read. Or I can be paying the bills and have to check upteen times before I pay it to make sure I have the correct amount and I must check again to whom I am paying said correct amount. 

This coupled with the physical pain and fatigue make for a very challenging life during a fibro flare. It has the propensity to sap you of your self confidence. It can make you doubt your sanity. It can scare you to death as you worry about your competence to even run your own life at times.

I would not wish this on anyone: the pain. the fatigue. the confusion. the sapping of confidence. the insomnia. the judgments.

Many times I cannot attend church or read my Bible and I sense that there are some who think I am backsliding. Far from it. I am simply too exhausted.

All these things are a Fibromite's lot and no one seems to understand if we give in to a rare moment of snappiness or pique. It's just that the whole fibro thing with pain 24/7 gets one over it very quicky and it gets very tiresome! 

Today's to do list:

• Washing
• Clean my kitchen
• Cook chicken risotto for dinner

 

Silly season's begun already!

 

This year because we finally have a larger home, I am hosting Christmas Day lunch. As always, I need to plan and pace myself because of my chronic fatigue, so I am looking into buying my foods and gifts early.

I know I am going to have a fibromyalgia flare by Boxing Day, but it will be worth it to have some good memories. Sometimes you just have to push yourself or you never do anything. I am looking forward to it! But to minimise any major flare after Christmas and leading up to it, I am planning already!

Last weekend our 10 year old granddaughter Taylah came and she loves Christmas and decorating, so we gave her the tree and decorations and told her if she wants, she can decorate it. She wanted to!

So except for Grandpa Chris holding her to place the star, she did it all by herself. We think she did a sterling job!

To be honest, if we weren't hosting lunch this year, we probably wouldn't be bothered with the tree but with family coming, it seemed worth the effort. So the tree is up albeit early. With both of us feeling under the weather, and with a little willing helper, it is cheerful and jolly. And good timing!

Taylah placed the solar lights so that the tree turns on at dusk and turns off at dawn. So there's no upkeep and even though the tree is minimalist by most standards, it still heralds in the festive season.

All we have left to do for decorating is putting the wreath on the front door, but it seems a little too soon to go public yet and let everyone know that at Hicks' House, the silly season's begun already!

Here a little.

 

So today I woke with no spoons and I felt like I had been hit by a bus. But I really want to start this journey of reclaiming my house, so I bit the bullet and took my first step.

As the kitchen is always the first area that calls for attention, I decided to start there. I had cleaned up last night and only had a few dishes to take out of the dishwasher.All I had to clean up was the breakfast and morning tea dishes.

Fibromyalgia flares see that I simply can't do mornings, and as you can see, I couldn't raise a gallop until nearly lunchtime. All I had managed to do was pull up our beds, put a load of washing in and run my irobot, Sadie.

So by the time I had done the kitchen, it was time for a nana nap as my angina was playing up and I was finding just breathing enough.

So I had a nana nap which lasted a few hours, and I came out again but I still had no spoons to speak of.

My plan was to wipe down the kitchen benches or counter tops and start preparing dinner, but I had to leave it for the moment. Chris made me a cup of tea, we discussed what we would eat tonight and I sat down to talk to you.

I realise most people would say that I haven't accomplished a lot, but believe me, when you wake with no spoons at all, it is a lot. I know the benches need wiping down, but basically the kitchen's clean and I can start on cooking dinner as soon as I recoup.

I don't allow myself to suffer from "false guilt" anymore and I don't allow myself to be dictated to by my OCD perfectionist healthy woman of the past. She doesn't exist anymore. 

Everything we do is kudos to us Sacrificial Home Keepers. We push ourselves to achieve little by the standards of "normals", but to us, we have run a marathon.

So in a minute after I post this post, I will be cooking sweet and sour pork and rice. And then I will pray for enough spoons to see me sort the kitchen out- I hate getting up to a dirty kitchen and if I can do it before bed, it will be a gift from my previous self to my future self.

Tonight is bin night, so I will help Chris gather the rubbish and put the bins out. Come to think of it, they go out more often than we do these days! But it is what it is! With no spoons for both of us, staying home is a pleasure.

Anyway, I have at least achieved something today- working. pacing. resting. planning. It all adds up with here a little, there a little in the daily life of this Australian Sacrificial Home Keeper.

Cats have never been very considerate

This morning I hit the floor running. Xena woke me with imminent chucks and I shooed her off my bed, but not before she soiled both my minkie blankets. 

She also soiled the carpet in my bedroom. I have the blankets in the wash as we speak. The carpets have been cleaned and sprayed with Glen 20. 

I love her dearly, but often tell myself there will be no more cats when she passes. She's 12 now. We will have to wait and see on that one!  

So far since that, I have folded and put away 3 loads of clean washing, made lunch and cleaned my kitchen.

Tonight I am doing frozen dinners as we had a big lunch. Apart from that, I will be resting as my fibromyalgia is still flaring.

Now Xena is peacefully sleeping in her igloo. It would have been so much more Mummy friendly to have sicked up in that. A simple matter of washing out a little mattress. Still, cats have never been very considerate have they?

When the fog clears, tea's on the list.

 

Recently I have been having trouble remembering things. At nearly 70, I worry about dementia and think that maybe I am going down that path.

But in talking with people who suffer from fibromyalgia like I do, I realise that fibro brain fog can make one forgetful. Especially during flares.

Having just moved house about 6 weeks ago, I am just starting to recover physically. I have a flare that is pretty constant with no spoons and I do forget things. And words mid sentence.

I don't think me forgetting to order tea in the online grocery order really means I  have dementia. I guess fibromyalgia flares can do that.

Looking through Marketplace the other day, someone was selling a bassinette identical to the one I had for my 4 children. It brought back memories like they were only yesterday.

But that didn't make me feel very at ease about my forgetfulness because dementia robs one of short term memory. But then so does fibromyalgia.

Considering all my previous times of brain fog during a flare, and my subsequent good memory, I surmised that it was not dementia, but brain fog from said flare. 

I believe when the flare abates, and the fog clears,  I will remember the tea in next week's shopping list. 

Of apples and rosy cheeks

This weekend we had our 10 year old granddaughter, Taylah come and stay with us. We had a lot of fun and part of that fun was making apple roses.

My fibromyalgia was really bad and I explained my need for a nana nap by relating the meaning behind the spoons. She totally understood and in fact told me to go have a nap and she would call me in half an hour.

True to her word, she woke me in half an hour, but my body whimpered and said, "No way!" However, because we had made a "pinky promise" and I wanted to keep it, I dragged myself out of bed.

We stayed up until 11 on Saturday night because it wasn't a school night, and we slept until midday. I couldn't believe that I had slept that long. Tay must have needed it too.

We baked  apple roses and kept some aside for when her mum and sister came to pick her up. It was the first time they had seen our new house. I rarely see them these days. 

I was happy that we had made more memories when I said goodbye to them and so was my little Tay, looking lovely and rosy cheeked, clutching a few more apple roses for them to enjoy later.

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.

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. 

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! 

You just got to pass it on!

I ran our new irobot roomba vacuum last night. Xena hated it and ran under the bed. Roomba chased her under it and she came out like a scalded cat and bushy tailed. 

Don't worry, she got lots of cuddles afterwards, but it was the funniest thing that's happened in a long time. 

I highly recommend a roomba. It's very easy to operate and manages interchanging between carpets and tiled floors. It's really great when you have cats or dogs as it gets the fur vacuumed up easily. 

Last night ours kept bumping into things as my phone is too old to download the app to schedule and program it. It still did a great job. I am keen to see how much better it does when I update my phone.

We are just staying home this weekend as there's going to be a few days of physios and doctors for Dianne next week. Being oldies, we are bushed! But ya gotta do what ya gotta do! Fibro flare or not!

I am not getting paid for advertising roomba but when you find something that helps with fibromyalgia and other chronic illnesses, you just have to pass it on!