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. 

The power of a nana nap

 

So over my last 25 years of chronic illness my level of energy is often very low. Heart failure, pulmonary hyertension and particularly fibromyalgia rob me of my spoons and dictate the need to sleep.

I have found that it is best value for me to take a short nap- a nana nap of no more than 40 minutes. If I sleep for longer than that, I find I can't sleep soundly at night.

First clue for a night of non restorative sleep for me is the inability to go to bed at a reasonable hour- for me it is 11pm. I simply feel too stimulated to relax and go to bed. 

Being a night owl for me means pain tomorrow. I simply can't function properly if I have gone to bed late, even if I stay in bed till later.

Apparently this has something to do with our circadian rhythm and my rheumatologist told me that every hour we sleep before midnight equates to two more than after midnight...

I have been purposely taking a break in a short nana nap for a few weeks now and I find I am waking up feeling strong enough to do some chore or another that I haven't been able to get to...

If I go to bed and sleep for a few hours, which is easy to do when one is chronically fatigued, I often find I wake up feeling disoriented, giddy and generally out of sorts.

If I sleep a lot during the day, I obviously can't sleep properly during the night. So by having a planned nana nap as opposed to a long sleep, I find better value and easier deeper sleep at night.

In order to influence my body into having a nap as opposed to a full long sleep in the day, I now lay on the couch. Chris rubs my swollen feet and very soon I drift off to sleep. And for some reason, my body only sleeps for about 40 minutes. If I actually go to bed, I will sleep up to 3 hours...

By planned sleep routines, I can release more of the power of a nana nap.

I am looking up!

So the trip last Wednesday to pick out a bed and walker and then to finish some errands that were necessary saw me with a major fibromyalgia flare.

I had to go in person to chose the adjustable bed that will hopefully help me sleep better and bring down the swelling in my legs and feet. It was necessary to try out the various mattresses and models to make a good choice.

In the end, I chose a non divided queen size medium mattress with a padded bamboo topper. This should help with the fibro muscle pain and still support my sore back. 

After that I had to try out various walkers and walk around with it. It was exhausting.

This pulmonary hypertension is literally sucking the life out of me.  It is harder than ever to walk as my breathing is effected. That, plus the hole in my heart is leaching the oxygen out of my blood cells..It makes me suffer from dizzy spells and I have to grab onto something to stop falling over ..

So today and yesterday I have been sitting down a lot. Normally I sit in front of our kitchen window which is very sunny and has a good outlook. I love watching the white cabbage moths and the birds in our back yard. It sooths me as it's very relaxing. 

It's easy to be depressed. But I don't want to stay there. While there's life, there's hope. And speaking of hope, I have been praying and thanking God that I am His child. The hope of Jesus coming for His Church, His Bride in the Rapture is a real hope to cling to.  

His love and His promise to keep me and bring me to Himself keeps me going. And as I sit here in the window sunlight, you can be sure I am looking up.

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.

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.

A merry little Christmas

                                                

We are waiting for the real estate to carry out their 6 monthly house inspection for our rental. There won't be any problems. We love our home and have a lady come do some cleaning every two weeks. Just the stuff like vacuuming and mopping that we can't do anymore. 

I have washed all our bedding over the last few days and stored our doonas away because we are now in our summer. Next week I will wash our pillows.

I will be making some sugar cookies to try out my Christmas nativity rolling pin. The cookie cutters came yesterday. I want to get the dough right before I make them up for Christmas gifts. If  our little granddaughter is here before Christmas Day, I will let her help. She loves being in the kitchen and I let her cook or bake. 

Our doctor is going to do a phone consult for us this afternoon. It's mainly for prescriptions but I need some advice on meds for Chris's fluids. His feet are swollen like balloons. (He has heart failure) I could have gotten in to actually see the doctor this afternoon, but Chris won't go, so I settled on the phone consult.

I put our little Christmas tree up and hung a wreath on the door..

Just taking things quietly each day.  With another flare of fibromyalgia, it's enough. Like my 18" tree!  We are going to have a merry "little"  Christmas.

Even pleasant times are draining

Yesterday we had Chris's daughter come for his birthday which was Saturday. She brought a cake and a gift- the top fitted perfectly, but the slippers were too tight for his swollen feet.

Tomorrow we will go and exchange them as I have the docket. We were going to Kmart as Chris was given a gift voucher from my daughter, but he is feeling tired today, so we will make it another day. 

Chronic illness dictates our lives now. Chris with his heart failure and me with my fibromyalgia. Spoons are dictators that seek to keep us immobile with no social outlets. 

These days, we are fortunate in that people come to us. Over the years, they have realised that often it is impossible for us to leave our home to visit them- especially if there is a time-table. One just never knows how many spoons will be available on any day-not until the morning at the earliest.

I only have basic house chores today as all the washing and dishes are caught up. So that will be all I have to worry about with no spoons available today.

It's funny how even pleasant times can drain one of spoons...

Above is a picture of Chris and our grandson Lachlan who also shared his birthday with Grandpa. 

It is what it is!

Many of you will know that my husband, Chris is facing serious health issues. He has recently been diagnosed with heart failure.

With fluid on his lungs, he feels like he is suffocating when he lies down, and so he sleeps sitting up in the recliner.

The fluid tablets don't seem to be moving much fluid off his badly swollen legs and feet either. His feet are so swollen that no shoes will fit him.

I was able to buy him some orthopaedic slippers that come apart and are fastened around the feet, ensuring a comfortable fit. They are quite warm as well which is a bonus in our autumn chilly mornings here.

We have many cardiologist and doctor appointments and tests in the coming weeks and  it really effects my fibromyalgia badly. But we keep on keeping on because we don't have any choice.

After a day out for medical appointments, I am usually running on no spoons and that is when Chris looks after me.

He makes me a cup of tea and turns my electric blanket on. He encourages me to rest and chooses an easy slow cooker meal for dinner. I usually cook that on the day whilst we are out.

I allow Chris full reign of what he wants to eat as his appetite is not as good as before he got sick. So you will find us discussing menus the day before.

I do all organising for his appointments, ensure his medications are made up, sort them out for the week and drive him to said appointments if he doesn't feel up to it.

He in return guards my health and makes sure I get uninterrupted sleep as I don't sleep soundly due to fibromyalgia pain.

In line with this, we now share separate bedrooms. Our marriage is as strong and loving as ever, but due to illness we both have found we sleep better apart.

It wasn't what we really wanted, but it is just part of our own new normal. We still sit together watching TV and we hold hands all the time. But with health issues causing insomnia, it is the only way we both can help each other. It is what it is.

When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. Proverbs 3:24a

From the comfort of my couch

Today when I woke up, the outside was like a winter wonderland. Everything had a cloak of white from the frost. I quickly put the heaters on and warmed the place up.

After my lunch, I was still in my Oodie and I just didn't really have any spoons to do much. The birds were eating in our bird feeder and the sun had come across the back garden and was so warm that I was able to turn the heater off.

My stress levels when Chris became ill were pretty high, and I had done a lot of driving over the last two weeks. It played major havoc with my fibromyalgia, back and hips. I don't usually drive so of course I was using muscles that don't get used much. And they were complaining!

We opened the back door to air the house. The birds were chirping, the cattle were lowing and the stream at the end of our garden was flowing fast and bubbling. The sun shone on the water and not for the first time, I thanked God for giving us this home to rent.

Chris was sitting at the end of the couch and invited me to lay down and he would give me a foot rub. Now with all the driving, my right foot was extremely sore from using the pedals, and my peripheral neuropathy from diabetes was causing my feet to burn. He knows I suffer with sore feet and oedema in my legs, thanks to heart failure, and he rubs my feet and massages the water from them up towards my heart. It is supposed to help with heart failure.

The sun was shining right in my eyes, so I pulled my Oodie hood over them and lay listening to the birds, cows and stream. With closed eyes and the sun shining on my bare legs, the birds continued to chorus and with the water running, it felt exactly like I was at the beach. I fell asleep.

When I woke from my resultant slumber, Chris had closed the door as it was getting cold again. My muscles felt more relaxed and I had a few spoons to cook some fish and mashed potato with peas for dinner. I even did an apple pie sweetened with Hermasetas and cinnamon.

I was so comforted by just getting to rest and sleep and I intend to go to the "beach" again tomorrow- all from the comfort of my couch!

Feeling nurtured

So as you know, I have been under the weather with my fibromyalgia and angina. No amount of determination and desire can call my spoons into action. I cannot function well at the moment. No matter what.

I have succumbed to false guilt, but after a heart to heart with Chris and some Quiet Time with the LORD, I feel a little better.

Having Chris bring me in some tea this morning and his offer to vacuum today has brought a smile to my face. I feel nurtured when he pitches in to help me.

I will be taking some Paracetamol soon and he has promised to give my feet and legs a massage. He gently massages my swollen ankles upwards towards my heart. It helps my weakened heart, and after I find that I can bend my toes and move my feet again. But usually it just makes me sleep. I am always glad to have a nana nap.

The only thing I am going to do today is make fish and chips in the air fryer. I will serve them with salad for dinner. 

Being a chronically ill wife, I sometimes worry about how Chris feels. It must be tedious for him, but when I mention it, he waves his hand and says it's all part of the job of being a husband... and he sure has me feeling nurtured.