Perhaps I am

 

So over the Christmas/New Year break, I have had a few disappointments. Once again fibromyalgia flares, lymphoedema and angina have plagued me when I particularly wanted to be well, and they've ruined my joy in life.

This year we weren't even invited anywhere for Christmas Day or New Year. When I asked about it, my children responded with "well you never come anyway!" It hurt because it's true, but I smiled and said "that's OK!" But it would have been nice to have been invited anyway.

Chris's children came to visit us a few days before Christmas and I was nearly demented with pain and fatigue, but I kept smiling and tried to be cheerful. I don't think they realised how much pain killers and determination went behind that smile.

I know some people think I am a malingerer because I don't look sick most of the time. And I think they believe that I am putting it on when I say how painful my life is- they have no idea the effort it takes to appear well. 

Not allowing illness to define me, I try very hard to overcome my pain, tiredness, depression and lethargy. Often it is overwhelming and I succumb to the feelings of loneliness and inferiority that drown me. 

But no one really knows that depth of suffering, and I do believe no one cares. So I will discipline myself and take control of what few spoons I have, for not many know how heavy the cloak of illness gets.

So when I occasionally do succumb to it, and mention it to others, I can see them looking doubtfully at me and judging me as a malingerer. They think I am acting and putting it on.

I do act a lot, really. Strong when I am weak. Energetic and able when I am clearly not. Smiling in spite of it all. Bearing my load stoically.

If they did know the depth of my pain they would know that I do act- I act out feeling normal. An actor who could win an Oscar to avoid being labelled as a fake. 

A good actor can bring to life a fictitious person and for me, that person is myself enjoying good health.

They say I am an actor- perhaps I am...

A longing for a cup of tea

 

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

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

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

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

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

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

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

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

Dusting off my wheelchair.

 

Last week my knees both popped out as I was gingerly walking up the passage to answer the door.

I can't tell you how painful it was, but what I can say is that it reduced me to tears and I am not a woman given to crying.

As you probably know, I have ligament damage to both knees which due to co-morbidities, they cannot be repaired.

Chris immediately brought me my walker and after getting my breath back, I limped to the kitchen table and sat down.

It's now the final straw in the pain stakes. With heart and lung issues, plus severe fibromyalgia and polymyalgia rheumatica, and now my latest challenge, lymphoedema, it all became too much.

I have my wheelchair in the garage. I havent used it much but it will have to be used now. My mobility aid scooter is OK but I cant take it into the shops.

Chris read my thoughts and is out in the garage, dusting off my wheelchair...

Stopping perfectionism in its tracks.

 

In my early days, I used to be a perfectionist in my homemaking. I dusted and vacuumed the house every day. Clothes were washed, dried, folded and ironed the same day.

With the advent of spinal problems, kidney stone surgeries, and later heart surgeries, the perfectionism wained.

After my children were grown there wasn't so much work to do. With the advent of fibromyalgia and now lymphoedema, I am lucky to be able to stand long enough to cook a meal- let alone iron stuff that nobody sees much now that I am a full- time couch potato! 

In spite of everything and with help from my Home Support Package, my home is still clean and by constant chipping away at tasks, it looks reasonably clean and organised.

I still have pride in a job well done, but the push to produce and the motivation is almost gone.

Illness has a way of stopping perfectionism in its tracks. 

Bells and whistles

 

I was deep in thought on my computer this morning when something started beeping in the house.

Chris called out to me asking what went off. I did a mental check going through the chores I was currently doing. Or I should say, that my appliances were doing for me.

My washing machine was still washing. I wasn't using my oven. My robotic vacuums were fully charged waiting to be instructed on when to start cleaning. My dryer was not in use. The air fryer was not in use....

I asked Chris if he had left the fridge door open... he hadn't. There was only one thing it could be: the dishwasher. It was! 

It was such a relief to locate the beeping sound. Doubly a relief that the dishes were washed. Now we could find a clean cup to have a cup of tea.

I have had many painful conditions attack my body at once- fibromyalgia, PMR, TMJ and knees that keep wobbling out of place and my lymphoedema is so active that I can't wear my usual slippers. My feet and legs are too swollen.

Along with these painful conditions has come the need to sleep around the clock. So I have been remiss in keeping the dishes washed and ready and although I have been washing our clothes, we have been living out of the laundry basket. 

I know that's not ideal, but chronic illness and consequent no spoons has dictated my pace. When one has constant chronic pain, one's attention span is short and the beeping helps bring my attention back to the task at hand. As always, I needed a clean cup to make my tea this morning.

But I digress- back to beeping- I am glad my applicances bring me back into focus and come with bells and whistles..

I think it was well worth it

 

As you know, I love watching the birds that come in to our back yard. Naturally, they fly off as soon as they notice us sitting watching them.

We don't have a vertical blind which would make it private enough to watch them without them seeing us. So I had to come up with something that wouldn't damage the house but does the trick.

Anyway, first we tried cling window dressing that was mirrored from the outside, but clear inside. It should have worked but was not very good quality and my granddaughter gave up.

When I was looking for something clingy for the window, I came across these decals. So I got some.

Putting them on was difficult for me... Chris has vertigo and couldn't help me and I didn't want to ask my granddaughter to come all the way up here to put it up again.

Anyway, it works a treat. The birds come and go and give us much enjoyment.

It was very difficult for me to apply, especially the bottom decals... my spoons evaporated quickly and my muscles complained loudly.

The next morning, I woke up with the mother of all fibromyalgia flares. My back hurt, my bottom muscles screamed, my neck and shoulders ached abominably, and my arms and wrists felt like they were tearing and my knees were hot to the touch and refused to bend..

Because of my lymphoedema, my legs were propped up on pillows while I slept. I took some Panadol Osteo to help with the pain and only cooked a light dinner. 

I can now sit at my dining table and watch the birds which relaxes me so much. 

Notwithstanding that I had a fibro flare over putting the decals up, I think it was well worth it.

I think I've earned it!

 

You may recall I posted about my new wheels- my motorised scooter coming.. well it came this week! 

I have had a burl around the block and am very pleased with it. But I have had problems with health again and it's been hot, so I haven't been out a lot on it yet.

I have been waiting for it since December 11 last year. As it turns out, my case manager for my Aged Care package went on holiday and it was sitting in the warehouse waiting for her to clear it for delivery.

It's no use complaining and I am very grateful that I have it. My knees have been paining me very badly lately and my angina is causing my problems.

Adding having only one functioning lung and a hole in the heart and my swollen legs thanks to lymphoedema, I guess I have earned it... lol 

Some more to add to the mix

 

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

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

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

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

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

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