Showing posts with label Fibromyalgia. Show all posts
Showing posts with label Fibromyalgia. Show all posts

Hanging on by a thread revisited


We chronically ill women always have times when we feel that we are barely holding it all together. We are literally becoming unravelled and we feel like we are hanging on by a thread.

Flares, unrelenting pain, immeasurable fatigue, depression and lack of restorative sleep can all add to the feeling that we can't go on. Even breathing seems like an effort.

It is in those times that we must reach out to God and ask Him to give us the strength to get through each day- or especially the night which seems the longest when we long to sleep but can't.

We need to try to listen to the Word or put on some Christian worship music, and give ourselves over to relaxing as much as is possible for someone in the grip of pain or depression. But we have to focus on something positive, or else we will be getting a one way to the Pit of Despair. We don't want to go there.

By focusing on something positive, we can actually release endorphins, those chemicals that reduce pain and increase a feeling of well-being. 

Reaching out to God during these times is critical to our staying in control emotionally. But we must do it, in faith.

If the woman with the issue of blood hadn't reached out to Jesus by touching the hem of His garment, she would not have been healed.

I am not necessarily saying that you will get healed, even though it is possible of course. But you will be lifted up to a higher level of coping with it all.

Worship and praising God whilst suffering is the most exquisitely beautiful act of trust and reverence. It will lift us up and set the enemy of our souls to flight.

So, next time you are feeling you are hanging by a thread, make sure it's the hem of Christ's garment.

© Glenys Robyn Hicks

And suddenly, a woman who had a flow of blood for twelve years came from behind and touched the hem of His garment. Matthew 9.20

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! 



A nasty dictator

 

Yesterday was a very busy day and I am feeling the after effects now. My fibromyalgia is flaring and the pain is incredible. 

Dianne my daughter was not able to get the staples out from her total knee replacement because the doctors and nurse said a week out of surgery is too early to remove them- especially on a bending joint. We had to reschedule to next Thursday. 

Then I was not allowed to accompany her into physio because I am not vaxxed against covid. So I helped her return her hired crutches-(she has her own) and left. 

I accompanied her teen son into his counselling appointment, talked to the psychologist as he is a new patient, then left them to discuss things. 

It was so much walking and in and out of cars that my own knees were quivering. Di's pain level was off the charts as it is difficult to get in and out of our car- it is high. She begged me to not undergo knee surgery myself. (I have both knees with torn ligaments) She didn't have to beg much. I don't like pain.

Today I am just resting and making a stew in my slow cooker. That's the best I can do today. Fibromyalgia is a wicked task master and a nasty dictator. 





Stating your name and business



As you know, we have just moved and along with a new home, comes some new things to add to the decor.

Chris and I love this door mat. This verse is one of our favourites and when we saw it we wanted it. It can be personalised to add your family name.

It looks lovely at the front door. We still have pictures to be hung and some flat packs of furniture to make up. The unpacking itself is almost finished.

The plan is to gradually go through room to room and gradually declutter. But this will depend on my spoons. I have another fibromyalgia flare.

But we have been finding that even a concerted effort of 5 minutes at a time followed by a rest and a cup of tea has paid off. Pacing is critical with fibromyalgia and heart failure.

I am in the process of getting an i-Roomba robotic vacuum cleaner to help with the floors. This house is quite large and the passage alone is as long as a cricket pitch...

Neither Chris or I can vacuum these days and I am hoping that the i-Roomba will save on money to employ a helper to come clean the house for me. I will let you know how we go.

Happily, the robotic vac can manage both tiles and carpet without skipping a beat, so it will be able to keep our lovely door mat free of dust bunnies. 

Meant to be noticed, I don't want visitors to our home seeing the mat dirty- not when it's proclaiming our faith and intention of having a holy home. It's all about stating your name and business! 


We love our new house

 


I pushed myself today to do some work and unpack. I know it's not the best thing I can do with a fibromyalgia flare, but I need to get my home organised. We are about two-thirds unpacked. 

But of course the cooking, cleaning, dishes and washing have to be kept up and I managed to get the kitchen cleaned and a load of washing done. 

My daughter Dianne came home from hospital after her knee replacement. She's doing really well, praise God. 

Chris isn't feeling too great so I have to wait for the heavier things to be unpacked. We really like our new house.

I can hardly wait!

 

As most of you know, I have both knees injured with torn menisci and ligaments. Showers are difficult as it's hard to stand. 

I find myself grieving the loss of independence and the ability to take a bath. So it was with great joy that I found this The Aquatec orca bath lift a bath lift for getting in and out of the bath. 

We went to the Mobility Aids shop and I bought one. It was $875AUD including delivery of $70. It will be delivered this Friday. I am overjoyed.

I know it is expensive, but I figure it will be worth every cent. Plus you can pay it on Afterpay. And Chris will also be able to use it so that's good for him as well.

At the end of a fibromyalgia filled day or a day of back pain, a bath can be so comforting. I can hardly wait! 


Bother to lift us up and not tear us down


It amazes me how many people are uninformed about something yet feel compelled to give an opinion or advice about it.

When I got fibromyalgia everyone told me it was in my head. I pushed myself physically to get through it but the emotional toll was so bad. Guilt. Failure. Self loathing. Exacerbation of it all. In the end it was all for nothing: fibromyalgia is real.

How one talks to a chronically ill person is important as often they can take those words and apply it to themself, even if that person really doesn't understand about their illness.

Quite often speaking erroneously and negatively can damage a person so much that they actually feel worse. Those words have the propensity to cause so much emotionally destructive thoughts that cripple a person worse than the disease or ailment they suffer does.

Unsolicited advice such as starting exercising, dieting, positive thinking, all sound great for most maladies, but alas, not so great for chronic illness such as heart failure, osteoporosis, spinal stenosis, lupus and fibromyalgia.

Taking this on board for the person already grieving for their lost health can lead a person straight to the Pit of Despair. And it achieves nothing.

A little kindness would go a long way to helping the chronically ill retain self respect and accept their illness quicker. But most times those who give advice are anything but kind, sounding judgmental and arrogant. Which just expounds on how truly unhelpful they really are- or try to be.

Being kind and gentle to those suffering is Christ's way- so if you think you have enough knowledge and love to impart some wisdom and instruction to a chronically ill person- do so gently and kindly.

God Himself knows we have enough to contend with already as we walk the sad and lonely path of illness. We need less words and more acts that impart sympathy and compassion.

Pray for us and comfort us and be one of the few who bother to lift us up and not tear us down.


© Glenys Robyn Hicks 


And Jesus went forth, and saw a great multitude, and was moved with compassion toward them, and he healed their sick. Matthew 14:14

More spoons to enjoy life.



We have just moved and we are both quite tired still. Although the house is functional, there's still a lot of unpacking to do.

This weekend, two of our grandchildren wanted to come see us and give us their verdict of the new house. Knowing that memories are all we will have once they are grown, we agreed to have them.

Although I am suffering from a bad fibromyalgia flare, I got dressed and stayed up in order to spend time with them.

We cooked lunch together and watched family videos of when they were first born and growing up. It was fun but it was also non taxing to my sore body. 

Today I am expecting a lady to come clean for a couple of hours. She did such a good job of cleaning our old house for our bond return, that I asked her if she would like to do a regular clean for us once a fortnight. She agreed.

With my poor daughter suffering from fibromyalgia as well and now living two minutes away, she also agreed to clean her house after ours each fortnight as well.

Both my daughter and I are finding just cooking, cleaning our kitchen, doing washing, grocery shopping, running errands like going to the chemist, planning finances and feeding our pets is enough of a job. We need some extra help.

There's very little help here for chronically ill people who can't do housework. What little we did get has been stopped since a new government has taken over the reins. So we have to pay privately.

I am grateful that I can save enough each fortnight to afford a cleaner's help. It not only keeps my home clean, but gives me more spoons to enjoy life.

 

Out of my comfort zone.



I am so exhausted right now. We have just moved house and as expected, I have welcomed a new fibromyalgia flare.

Having fibromyalgia for 23 years, I knew it would end like this, but in life some things are unavoidable and you just have to go with it.

So I sit here writing to you, trying to wind down enough to actually fall asleep. I have succeeded in making the home functional but there's much to still be done.

It will have to wait until tomorrow. As long as I have clean clothes for tomorrow and some clean cups and plates, it will have to suffice.

I hate moving so much, but I do love the house we have moved to and I am hoping the next tenants feed the birds and stray feral cat who comes to dine. I will miss them.

Wednesday I need to go to our doctor, so we will hand the keys in to the real estate then. Then they can inspect it and show prospective tenants through.

It looked lovely after the cleaners had been yesterday and the carpet cleaner's spray was perfumed so nicely. It was hard work for me to get to this point, but as I said, it was necessary. 

I cleaned and packed like a pro and we expect to get our bond or security money back with no problems. My muscles are so weak now but I think the results of my effort should pay off even though I was out of my comfort zone. 



 

Pain is a disability


Anyone who suffers from chronic pain knows that it precludes us from a lot of enjoyment of life. Pain makes the vicissitudes of life that much harder to bear. 

Everything is exaggerated both physically and mentally, and the only thing I can do is accept that this is not my usual self, for pain changes people.

Pain disables us in many ways. from physical activity. from family life. from sex. from sleep. from patience. from social life. from functioning normally. from life generally.

The effects of pain cause us to withdraw from people and become reclusive. It makes us feel isolated and unable to really feel understood or validated. We learn to be distrustful of others.

Because chronic pain, in my case fibromyalgia, causes us so much mental as well as physical angst, we decide to retreat to our home often preferring it even if we had enough spoons to leave.

Seeing as pain is such a disabling affliction, it makes no sense to me that we are often regarded by doctors with suspicion when we request heavy duty pain relief such as opiates.

Most of us cannot get enough medication to adequately help us with our pain. We often then succumb to depression and live as recluses  due to agoraphobia. 

We who suffer from chronic pain know that it is a disability. Invisible and destructive. We live in the knowledge that pain is disabling. 

We just wish doctors were as aware of the ongoing relentless disability called Pain.


On the move again!


We have been busy looking for another home to rent. It's been a nightmare. There aren't many homes to rent and when we apply, we are vying with about 20 other people for the same home.

Most days we have to go to look at these houses and as we are in the country, it is at least an hour's drive each day. I am exhausted.

So much exhaustion is hard to take, especially when it brings on a fibromyalgia flare. But as in lots of things in life, it just has to be done.

I think the most stressful part is actually securing a property to move in to. The actual move is not so bad, and this time we will be paying my grandson to help us move.

With the fifth wheel and tow vehicle sold, we are in a position to get someone to do the move for us and it's especially important with our failing health to enlist help this time.

We are going to miss the birdlife here for sure, but with us being in our 70's, we have decided that we need to be closer to family and hospitals if we have an emergency.

This house is old and has no insulation and is incredibly cold and it's our winter now. With the price of electricity going up on July first, we won't be able to afford the heating in our all electric dwelling.

We are feeling the cold and are looking forward to ducted heating again.

Today there's no house viewings as it's Saturday. I have used the time to catch up on washing and I have two slow cookers going with different meals in them.

I am contemplating using Prednisolone for a few days so that my neck and jaw pain (TMJ) abates. I don't know if it will help my muscle pain in my shoulder and upper pain, but it can't hurt.

Today is the first day for awhile that I have been able to post as my muscles feel like they're tearing. But I just wanted to touch base and tell you what's happening in our part of the world at the moment.

Next week is another day of house hunting and tonight I feel like I am running on a wing and a prayer- on the move again!

 

We aren't just tired: we're dead tired


A woman who suffers from a chronic illness or disability often finds herself at the end of "normals'" ideas of being tired. We are often looked at with contempt for being so tired that we can't perform our daily duties properly. Or that we have to go to bed early, rise late, or cancel social engagements at the last minute. We are not lazy. 

Before Corona, we were regarded with suspicion when we couldn't make it to church regularly and people harshly judged our spiritual health, deeming us backslidden.  Emotional and spiritual hurt exacerbates our ill state. We feel worse and they lack compassion.

Often we have to cancel doctors' appointments because we are too sick to get there. We find we can't drive and even if we could, we haven't got the strength to even get washed and dressed. It is not unheard of that some of us have crumpled in the shower, unable to get out and totally winded...

Our "tired" goes far beyond a sleepiness or drowsy feeling. We are so fatigued that breathing is too much effort and not for the first time we are grateful it's automatic.

Furthermore, our "tired" is not helped by a nanna nap or even 9 hours of sleep.  We fight our illness and pain even in our dreams and wake up unrefreshed and have to face another day when we haven't recuperated from the day before. We simply have run out of spoons.

"Tired" is overused and doesn't come close to the bone sucking quagmire of desperate fatigue we chronically ill people find ourselves sinking into constantly.  To have "normals" flippantly say, "Me too!" when we tell them we are tired invalidates us and makes us long for their brand of tiredness that can be restored through a good sleep.

We cannot even enjoy a shower or bath to help us sleep as the effort it takes to do this not only drains us of whatever energy we can find, but does not always bring a restorative sleep. Just muscle pain.

Such is my own pain on going to bed that I find I cannot place my arms anywhere comfortable. My fibromyalgia and polymyalgia rheumatica make it impossible to raise my arms upwards and extending them hurts my muscles and tendons. So I go to sleep with my arms folded on my chest.

I indeed look like a cadaver which has been laid out and testifies somewhat to the feeling of being dead in my tracks.  Because that's the type of exhaustion we face every day: we truly feel dead tired.

© Glenys Robyn Hicks

Cast me not off in the time of old age; forsake me not when my strength faileth. Psalm 71:9

It's a pain in the neck

 

Lately I have been trying to keep off the computer. I have had a horrid fibromyalgia flare and I suspect along with neck and shoulder pain, I have also got TMJ and polymyalgia rheumatica back as well.

We  recently sold our GMC Sierra ute and with no more vehicles needing a driveway to park on, we have turned our attention to finding another rented home. It has proven to be a nightmare.

There are not many affordable homes to rent and we find we are vying with up to 20 different people at a viewing, all hoping to get the same property. It is terribly stressful.

I think the stress has exacerbated my fibromyalgia. I have been clenching my jaw and this has seen my TMJ return. Without a blood test to check ESR creatines and so on, I can't say that my PMR has returned, but judging from the pain and inability to raise my arms, I would not be surprised.

I have done 5 loads of washing and dryed it in the dryer as it's too painful to hang it outside. I have run the dishwasher and been to the chemist to pick up my Januvia for my diabetes. Just that small bit of work has exhausted me. My spoons have left the building.

Lately I have been thinking it isn't worth moving, but the possums in the roof wake me up with their thumpings and scratchings and the cold weather has meant that central heating is calling my name and beckoning me to a newer more modern abode.

Just typing to you has stirred up all my sore muscles, and it's traveled down my arm. So I will be taking some paracetamol Osteo soon and maybe I'll be having a nana nap.

Fibromyalgia, PMR or plain arthritis makes for a bad day by any name. Whatever ails me, it boils down to the fact that today, it's a pain in the neck. 


 

And the icing on the cake is...



Friday we went to the chemist and were treated to a cup of tea behind the counter. In between customers, we chatted and caught up. 

We were amongst the first of their customers and we have gone solely to them and rejoiced with them as their business grew. 

We don't go out much, and he and his wife know this. They are lovely people and we will miss them if we find a new rental- so much so, that we have decided we will still go to them for our prescriptions. 

Thanking them for their hospitality, they asked us to call in every Friday for coffee. Well, it looks like Fridays will be script days!   

In saying that, it will depend on whether my fibromyalgia allows me to travel. There are days when I just want to stay home as my spoons are few. But  just knowing that whenever we do see them, we will be welcome and missed is precious.

It does get lonely sometimes here. It's nice to have friends. The icing on the cake is that they are Christians! 




It's a good thing, fibro or not!

 

Chris and I have both had glandular fever which lasted for months. He is being checked for fibromyalgia as he has every indication that he has, even though it is mainly a female disease, it can effect men. Here is an article written by a doctor about that link....

Epstein Barr, the virus responsible for glandular fever or mononucleosis, has been linked to the development of fibromyalgia – a chronic, painful condition of the muscles and connective tissue.

Fibromyalgia sufferers are mainly female and report chronic widespread pain and a heightened and painful response to gentle touch. One of the most important criteria to determine whether or not you may have this disease is significant pain in very specific areas of your body, including:

* Inside of your elbows
* Your collar bones
* Inside of your knees
* Your hips

Usually these locations are symmetrical, so you’ll have pain equally present on both sides of your body. Experiencing significant pain when someone presses on those areas, on both sides, is indicative of this condition.

Other symptoms can include fatigue, sleep disturbance, anxiety, bowel and bladder problems, difficulty swallowing and joint stiffness.

Conventional medicine offers no cure for fibromyalgia, although there are treatments like medication, exercise and behavioral interventions that can reduce symptoms.

The natural approach to treating fibromyalgia is to re-balance the immune system which may have been damaged by the effects of the Epstein Barr virus. It is also vital to relieve symptoms through nutritional intervention, graded exercise, stress management and re-establishing good sleep patterns. Let’s have a look at some of these natural treatments for fibromyalgia:

The mineral magnesium is a natural muscle relaxant that is showing promising effects on the pain of this condition. It should be taken as a powder or capsule along with magnesium-rich foods like fish, avocado, raw nuts and seeds, soybeans, green leafy vegetables, brown rice, apples, apricots and grapefruit.

Malic acid is also often low in sufferers and should be supplemented. Malic acid is found naturally in fruits like apple. It often gives unripe fruit a tart or sour taste.

To help relieve the fatigue seen in fibro and Epstein Barr, vitamin C and the B complex are recommended. Anti-inflammatory foods like fish oil, zinc, ginger, turmeric, pineapple and paw paw can also help.

Restoration of normal sleep patterns is an essential part of the recovery process. Herbs like valerian, skull cap, hops and chamomile are excellent. Epsom salt baths which are naturally high in magnesium should also be taken nightly before bedtime. These baths reduce muscle pain and tension and help ensure a good night’s sleep. Gentle exercise during the day – either a walk, swim or stretching exercises can also help you sleep better at night.

Diet wise, I recommend my Epstein Barr, CFS and fibromyalgia patients follow a low carb, high protein diet based around good quality protein foods and plenty of fresh leafy greens and other vegetables. Sugar, grains and the nightshade family of foods like tomatoes, eggplant, chilli, potatoes and capsicum, should be eliminated as they can trigger pain and soreness in the fibromyalgia patient. Remember too to drink plenty of pure water – at least 2-3 litres a day...... author unknown

I have to add here that I could never drink 2-3 litres of water a day and current medical advice is that we only need about 6 glasses. Too much water intake can cause more problems and we have enough to deal with already. 

We are already both on fluid tablets due to heart failure. But apart from that, we are going to implement some diets changes and other suggestions.

With us both suffering similar pain issues, it is easier to understand each other and offer love and support. Which is a good thing, fibro or not! 


We just have to embrace it



We have been looking for another house closer to family. We have applied for one yesterday and had a phone call from the real estate this morning which sounded positive. 

Our fiver got to South Australia to its new owner and they rang us to tell us how pleased they were with it. So that's good. 

We are taking our GMC Sierra to the mechanic for a good overhaul Monday and then we will decide what we will do with it. Over here they are seen as a luxury ute and we think a young buck would love it. That's what we are hoping. 

My twin and son and granddaughter continue to recover from Covid but are still very much under the weather with it. 

I am convinced that our prayers have helped keep my twin. She's so many serious health issues such as lupus and I was afraid for her. 

I have done a load of washing, cleaned my kitchen and am about to make some lunch.  I have a flare of fibromyalgia again and my spoons are nearly all gone.  I will be  taking a nana nap soon.

With an imminent move, I am not looking forward to the energy output, however I am looking forward to being nearer family.

I will miss the birds and our feral cat who is gradually becoming less timid as we feed him. We have named him Teddy Bear as his face is surrounded by bushy fur and he is gingery brown and looks like a teddy.

But I know in  life that one rarely gets everything one wants and so we have weighed up staying or moving. We have decided that we want to be closer to family, particularly our daughter who has had leukaemia.

With a bird bath/feeder and garden swing to take with us, we will continue to feed the birds as we watch from the swing in the garden.

It's true what they say: nothing is sure except death and taxes. Life is full of change. We just have to embrace it.