This is hygge to us!

                            

 

Today my granddaughter came and put up a bible text that spoke to us.

When we were renewing our vows 7 years ago, we thought of this verse as our wedding verse as including Jesus into our marriage was important to us. The meaning of this verse is not lost on us and we know that with our threefold cord, we won't easily be broken.

Our wedding 26 years ago was in the Registry Office Melbourne and although we intended to include Jesus in our vows, we found that we weren't given the opportunity to include Him in prayer.

So at our son's wedding we slipped out of the reception room and renewed our vows in front of the Salvation Army Officers who married him. And lo and behold, after that, the chaplain mentioned this verse which was confirmation that we had heard from the LORD that this was a good thing.

Anyway, back to today... my granddaughter used her Cricut and printed these for us and put them up today. 

We both love her work and the scripture that spoke to us. Seeing it on the wall is hygge to us.  

© Glenys Robyn Hicks

And if one prevail against him, two shall withstand him; and a threefold cord is not quickly broken. Ecclesiastes 4:12

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...

When an aspirin won't fix it

                                 

When it comes to Fibromyalgia many people – men and women – have reported a reduction in their libido due to the sometimes chronic nature of the condition. Sometimes Fibromyalgia sufferers can feel perfectly well and are willing to make love but a ‘flare-up’ can put paid to such willingness.

The sheer unpredictability of the condition is such that it can leave one or both partners feeling as though they are not wanted and that perhaps the other partner is making excuses; this is simply not the case.

Sufferers of Fibromyalgia, especially in its chronic form, find it difficult to make love because of the levels of pain they have to endure. Making love requires a considerable amount of bodily movement and if the trigger points flare up then this movement can be painful or at the very least uncomfortable.

Another problem with Fibromyalgia is the way in which an individual’s body weight can fluctuate; this too has consequences on the libido, making the sufferer feel as though they are unable to perform and instilling in them a lack of self-confidence which manifests itself as a lack of libido.

It is important to emphasise that a lack of libido can be turned around either by reducing stress and anxiety or by changing one’s daily routine. Your doctor will not necessarily prescribe any medication to help combat this problem as there is not really much that can be done physically about the condition.

I think it is very important to reassure your husband that you still love him even though you are hurting too much for intimacy. In areas of chronic pain and illness, communication must be open so that there are no silent doubts about whether you as a wife, still love your husband.

So important is this area of intimacy in marriage, that I would suggest that you be willing to try to accommodate your husband at any reasonable time, instead of just at night when you are understandably tired out. If lovemaking is simply impossible, remember to caress and cuddle your husband. author unknown

Remember to be demonstrative and vocal with letting your husband know you love him. He will most likely be feeling anxious that he can't help you in your suffering. Fibromyalgia flares can't be fixed by taking a few aspirins.

 

My beloved is white and ruddy, chief among ten thousand. Song of Songs 5:10

We need to share the load

Sometimes I feel guilty for letting off steam at times but I really believe I could have a bit more support than what I am getting. 

We sometimes have words during my fibromyalgia flares and when I have polymyalgia rheumatica at the same time, it can make me scream in desperation. I just want a hand. It helps me emotionally as well as physically and I feel nurtured.

I know my husband is unwell and he has my understanding and utmost sympathy. But sometimes, the pain gets so bad and I have so little spoons that I will yell at him to come and make his own cup of tea or whatever.

After words,  I often cry because I aren't usually like that.  Pain changes people.  Especially unrelenting pain. And unrestorative sleep. Especially that.

Yet, to those who don't know the desperation that pain drives you to, they would just think I was being unreasonable and using my fibro to elicit a response from Chris. 

It's not that at all. Our health issues mean that there are times when we have to help one another. And lately when Chris is not well, I find I am left to push myself beyond my own comfort level while he sleeps on the couch.

His pain is not at the same high level mine is. His health issues relate to other issues regarding heart problems. But his issues are difficult for him to bear. I know that. 

Chronic illness in both people in a marriage presents its own problems. Each one having pain that makes the eyeballs bulge, causes arguments of who's pain or condition is worse than the other's. A form of validation if you will.

But here's the scoop about chronic illness. It's not a contest. Just another thing about chronic illness that most don't understand. We need to share the load.

That to me is true love

 

So I have had such a flare up of my fibromyalgia that I went back to bed leaving a kitchen full of dirty dishes. Dishes that sat on my draining boards and in my sink.

I just needed to recoup some spoons and I was hoping to awake with at least enough to clean my kitchen.

You can imagine my joy and surprise when I woke up a few hours later to find that Chris had run the dishwasher and wiped down my kitchen benches! 

Now those of you who suffer from chronic illness, especially fibromyalgia know that we can become victims of the rollercoaster of emotions. Grateful tears ran down my cheeks and I rushed to Chris and hugged him tightly. 

He was surprised at my emotional response to his help, but it wasn't just a helping hand in home duties. It was a feeling of nurture and love. Especially when he is battling with severe health issues himself.

It was an act that solidified our union as a team, our home as important, and his wife as cherished. And this cherished wife was very aware and very encouraged. Why? you ask. 

Because I know exactly how many scarce spoons it took him to do this. And that to me, is true love.

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.

The downside of country life

So  the other night I was going into my bathroom when I noticed this huntsman on the frame near the door. My heart nearly stopped!

Walking into the bathroom, I must have passed close to this horrid spider who could easily have jumped on my head and such is my fear of spiders, it possibly would have killed me in a cardiac event brought on by fear!

Not an overly big spider by huntsman standards, he would have been about 3 inches across. But he was big enough to induce panic in us as we scurried to find a broom and the fly spray!

I didn't want to lose this guy as we wouldn't know where we would find him, so there was a great over use of flyspray and frantic loud bangs of the broom. Suffice it to say, he got a burial at sea!

It is said that they come in pairs, so we were watching everywhere until his mate was found. And she was...

I was in the adjacent laundry and found her sunning herself on the glass panel in the back door. I grabbed my flyspray and went to spray it, but then realised that she was outside the door. She too had to be gone because I didn't want her coming in the house. I'd had enough excitement with her mate's intrusion.

A few sprays of the flyspray had her on the move, and a few heavy thumps of the broom, and she was no longer. Except for food for the birds and ants. 

Indeed, I had to chuckle at how fast I moved, considering my two damaged knees and fibromyalgia. It's marvellous what an adrenaline rush can do for a body! 

Not only did the fear of losing the huntsman to perchance come back to terrorise me, rattle me, but so did realising that I had married a man who refused to rescue me from dangerous wildlife! Such was my expectation of my knight in shining armour! :)

Don't get me wrong: I still love living here in the Australian bush with my liver-lilied Chris,  but snakes and huntsmen are definitely the downside of country life.

Normally abnormal

We chronically ill women try so hard to do "normal" things. Like look well. Be cheerful. Be patient. Kind. Hospitable. Our family and marriage are our first priority after God. We try so hard to spin our wheel not fast- but at a "normal" pace. 

By "normal", we compare ourselves to those who do not suffer from chronic illness and pain. Or are disabled. We are very careful to keep serving our family but sometimes with the illness that afflicts us: we fail. This often gets to us and causes us to sink into depression. 

Being unable to process that we simply can't act as "normals", we often berate ourselves and sink into the Pit of Despair. We are often judged by "normal" standards, as we simply cannot attend certain social functions like before. If we do, the pain and effort can make us tense and we can make us appear moody unsociable grumps aka the death head at the feast. 

If only "normals" would realise that we are pushing ourselves every day to live a life that not even closely is "normal" like in the days before our health failed. We get so adept at doing this, that we have become quite good at wearing masks to cover the Mask Of Pain. Hence the appearance of being in a mood. 

My fibromyalgia and other health issues have now made it impossible for me to disguise, and I have learned to acknowledge this to people and tell them in advance that my attendance or action or whatever is totally subject to how I am on any given day. 

Basically, I have had to pander to angina, spinal and knee problems, fibromyalgia, polymyalgia rheumatica, and submit to tyrannical spoons by being totally flexible about my appointments and so on. 

People may still misjudge me but that is not my problem. I just pray that the LORD will allow them to see that I am not lazy or unsociable, but am just a chronically ill woman who finds just breathing some days enough effort. 

The LORD knows I am not well, but people take a lot more convincing. I am normally abnormal.   

Put on therefore, as the elect of God, holy and beloved, bowels of mercies, kindness, humbleness of mind, meekness, longsuffering; Colossians 3:12

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