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...

A permanent thing

 

So I haven't been feeling the love for weeks now. In fact I seem to be enduring the mother of all flares with slight variations on the depth of the flare.

My polymyalgia rheumatica seems to be going but the fibromyalgia pains and fatigue and brain fog are still draining me with their presence.

I wonder when the fibromyalgia pains will abate like my PMR. But they don't. Ever.

So I was reading over the blog trying to recall how long this current flare has been going on, and it was no surprise that it has come hot on the heels of the one before that. In fact, I don't think it ever went.

I got to thinking that maybe they aren't true flares. Maybe it's one continual run of severe pain with only a slightly better day thrown in here and there. But no real breakthrough. It makes sense.

It makes sense that's why I constantly start each day in severe pain and enjoy no spoons to think of because I am in a major flare. One that never goes away.

The only difference between "flares" is that I may have managed to chuck some washing in the machine or put a couple of appliances back where they belong. So I consider myself not flaring.

The only time I get any relief is when Chris rubs my sore feet- and fibromyalgia also is to blame for that, vying with peripheral neuropathy from my diabetes.  I usually fall asleep for a little while.

Sleeping brings no real relief as I wake myself in pain trying to move in my bed. It's a viscious cycle.

I hear so much about having a rest or nana nap when it gets really bad, but any Fibromite will tell you that you often wake up worse than before and your muscles feel like it's early morning again.

If I did manage to get comfortable I think bed could easily become a permanent thing- along with my so called fibromyalgia flares. Because they definitely are for me, a permanent thing...

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. 

Help until He comes

Today was a busy day in that I was organising aged care help for Chris and I ... we arent coping all that well... lots of phone calls that had me on hold for at least an hour each 

After nearly a whole day on the phone, I am happy to report that we were approved for help. Our aged care home package will start in 3-4 weeks. It includes transport, home maintenance, podiatry, and grass cutting. Later on as we get older it will include meals on wheels... but as long as I can cook, we would prefer our own cuisine. 

I am hoping that God takes us Home soon. That is the best thing to dwell on. But meanwhile, while we wait, my house could do with a deep clean, our toenails are feral and we need them properly done. We cant take a bath and we help each other shower but a grip bar and telephone type shower have been promised to us under home maintenance, and that would stop the suffocation feeling of water pouring over our head when we can't breathe at the best of times.. 

We cant drive most times and we will need transport for a personal consultation with our doctor and the help they offer is needed now.  Nothing to do with lack of faith or not watching- but we have to be practical. 

Heart failure is a beast that stalks us both and is a progressive disease. Peripheral neuropathy in our feet and legs is a constant pain that stops sleep.  A physiotherapist may be able to help or offer exercises to alleviate it.. all things that need attention now. 

Including last but not least, changed bed linen that can be done without banging gnarled fingers and hands... and while we look with anticipation and longing to be Home, the daily necessities of life are calling. 

We rely on God to help us and are grateful that He has blessed us with the help we need...until He comes. Our life style is always if the LORD wills.... we consider ourselves blessed that we are eligible for the help that's come our way, until He comes! God willing, it will be soon. But if not, we will be accepting help to keep going until He comes.

 © Glenys Robyn Hicks

" So teach [us] to number our days, that we may apply [our] hearts unto wisdom" Psalm 90:12

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.

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.