Showing posts with label Coping with pain. Show all posts
Showing posts with label Coping with pain. Show all posts

And so this was Christmas


So, I am sitting here the day after Christmas. I have absolutely no energy and the paracetamol tablets have done nothing to alleviate my pain from my fibromyalgia flare, my back ache and my sore arthritic feet.

My fibromyalgia has been flaring for the past five months since we started life in the fifth wheeler: well, actually it was flaring before that as we sold or gave away all our extraneous stuff and packed the van and closed up our rented house.

Prior to that we had the search for the fiver and a tow vehicle, then finding someone to put in the hitch and then the long tow back from Ballarat to Pakenham. A long round about trip. 

Three months into the trip, I tore my meniscus in the left knee again, and that put paid to being able to manage the seven steps up into the fiver. I became housebound and gained quite a bit of extra weight. We had to find a new rented home with no steps. 

We have just moved into a renovated farm house in a small country township in East Gippsland. We picked up the keys Monday 23rd December and of course the next day was Christmas Eve. We had made plans to see our little granddaughter open her presents and that meant staying overnight. We honestly felt so tired that we wished we could just cancel Christmas...

Christmas Day I helped my daughter cook and we had Christmas lunch there and then made the long trip home. I was so tired that I fell asleep on the drive home and nearly garrotted  myself on the seat belt. Chris said I was snoring sonorously. I believe him.

As it is our summer here in Australia, the weather was hot and this gave me trouble with my heart and caused my feet to swell alarmingly. I was so glad to get home and ditch my shoes and lay by the air conditioner for a bit.

This morning I took my sugars and was shocked by the high reading. I think I should not have had the choc ripple cake but it seemed like a good idea at the time.

Although we still  have stuff to unpack from the fiver and put in place here, the house is basically functional and very cosy already. 

I did pause frequently to reflect on the reason for the season: the birth of our Saviour Jesus Christ. The best part is spreading love and spending time with family if possible. If they will allow it.

I cannot say how Christmas became so commercial and such a rush, but this year no one seemed very full of the festive spirit. In fact, most seemed flushed and rushed and to be honest, those we visited were bickering and fighting and that made me anxious.

As I pour myself the last of our egg nog and head to bed for a nana nap, I have purposed to stay at home next Christmas. It is time to accept that all the hype of what should be a holy and peaceful time, is playing havoc with my ageing body. 

The beauty of the Saviour's birth will not be lost on me, but I will lose the expectation of sweet family gatherings and realise that my family is dysfunctional. 

As I make my way to my room,  I bow my head in thanks for God's wonderful gift of His Son. And I pray for peace for my family and others like it. I hope you all had a better Christmas than we did.... and so, this was Christmas! 


© Glenys Robyn Hicks

Be of good courage, and he shall strengthen your heart, all ye that hope in the LORD. Psalm 31:24

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.

Blessings, Glenys 

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

Keeping a home with chronic illness


This is an encouraging letter from a chronically ill woman. Mrs White of Legacy of Home

I have struggled with chronic illness for many years. In 1997, I was diagnosed with cancer and have not been the same since. However, I have many months of seeming perfect health, but then I have periods of total weakness and feeling like an invalid. There are times when I cannot walk and need crutches to support myself.

Most of the time, I "take it" cheerfully. It is like a forced break from all the things I try to do. It is time to sit quietly and enjoy some rest. Yet, I will do it with grace and glamor!

I love the above photograph of Donna Reed. In her day, women kept up their looks even when ill. This morning, I swept my hair up, into a french twist, put on some extra makeup (like the 60's look), and have on my pretty red house-robe. I will rest in style.

I plan to give the children lists of housework to do for me. Someone will take charge of the kitchen. Another will take over laundry. I will also have one of them plan a special supper. If I see them keeping up the house, I will be able to rest content.

My grandmother had multiple sclerosis and, for as long as I can remember, lived in her wheelchair. She also lived with us from the time I was 3 years old until she died when I was 11. She was wonderful! She directed and managed the house, and everyone, from her chair. She had dignity and spunk and knew how to run a house. She also continued to do whatever work she could from that wheelchair. She could sit at the table and work on preparing dough for tortellini. She is my inspiration.

If I am to be an invalid, I will still have a lovely home. I will manage from my chair and I will be grateful even in this trial.


Blessings,
Mrs. White (in gentle tears)

Making personal hygiene fibro-friendly



I have been ill with fibromyalgia for about twenty years now. In that time, lots of things have changed, and one of them is my personal hygiene routine.

One would think that taking a bath or a shower would be an easy thing to accomplish, but if you suffer from chronic fatigue, fibromyalgia, back problems or angina problems like I do, you would realise that it consumes a lot of your spoons. So I had to do a bit of rethinking of my daily routines. I've discovered that one of the places that takes a lot of my spoons is the bathroom.

Because bathing and drying and dressing exhaust me, I varied my time in taking a bath depending on how well I feel. If I have enough energy, I would bathe in the morning, if not I would take a shower before bed as Chris is home and he helps me get dried and into my nightie. (When you are chronically ill, you quickly get over being humbled by needing assistance- you are grateful for any help available.)

I have found that if I take a bath or shower in the morning I am left with no energy for the rest of the day. If I take my shower at night, I have just enough energy afterwards to get myself to bed, which works out much better.

Hot baths or showers leave me too exhausted and give me angina pain, so I take showers with only warm or tepid water. While I would prefer to shower every day, showering is best done every other day for me to avoid flare-ups of pain, fatigue and soreness. I have decided on some new course of action to make time in my bathroom more fibro-friendly.

One of the first things I changed was how I take a shower, or rather, the position in which I shower: sitting. Here I find those telephone type showers are useful. When I get out of the shower, I sit down to dry off.

I can no longer blow dry my hair so by necessity my hairstyle has been wash and air dry for years now. Time in front of the sink brushing my teeth or washing my face has been modified by resting one foot on a stool while standing. Because of spinal problems and being a short person, I have a glass in my bathroom which I fill with water and use for rinsing and cleaning my toothbrush without straining to reach the tap.

I no longer wear makeup, the standing in front of the mirror and the use of my hands in holding the various tools of the task, is now limited to special occasions only; it is too painful a task to do on a daily basis. Also, my face is so sensitive that it breaks out in red welts at the slightest pressure... which includes smearing on foundation. This is called dermagraphia.

The bottom line is taking a shower is a real workout now. In addition to modifying how I take a shower, I am going to follow these 3 rules: I will only take a shower at night, I will only take warm water showers and I will only take a shower every other day. With the employment of a good deodorant after each shower and a fresh change of underwear each night and morning, I have found that I don't offend anyone and remain feminine and dainty.

Life with chronic illness is complicated, but at least I manage to stay clean while living it!

© Glenys Robyn Hicks

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

Church at home


Chronic illness and pain bring us a new normal. Often it is very different to life in the past. But there's nothing we can do to change our circumstances. We have to adapt.

I do home church now. Chris has always played Songs of Praise on Channel 2 and we sing along, I listen to some sermons that my local church pastor preaches... (he's good) and then I listen to worship music on my computer. 

I certainly miss the corporate worship, but it's the way it is now and I have to mark the LORD'S Day as best I can. We are OK with that. I often take Communion by myself. It is meaningful to me.

Not attending church is not the ideal, but then having to find out our new normal isn't ideal either. By worshiping at home and making an effort to mark the LORD'S Day, my spirit is nourished nearly as much as if I attended church.

Apart from listening to Songs of Praise, my morning routine of worship and time with the LORD look a lot like Sunday. That's what I tell myself anyway. I can't allow myself to feel false guilt over something beyond my control. In church or at home, my commitment is always with Him.

© Glenys Robyn Hicks

"For the eyes of the LORD range though out the earth to strengthen those whose hearts are fully committed to Him." 2 Chronicles 16:9

How others cope with housework


Housework is never-ending...even for the healthy. I've accepted that I won't be able to keep up like I used to, so I make a "master list of simple chores" once a week and try to cross them off as I do them. Heavy or involved cleaning and chores I didn't complete wait until I have help...or occasionally carry over to next weeks list. At least seeing chores marked off my list helps me to feel that I'm still able to do some things... feel more productive even if the list isn't a lengthy one.

I never would have believed it if it weren't me who has CFS. Seriously! Cleaning in steps and pacing yourself is the most helpful. One 'those' days where you just can't do ANYTHING, don't! If you do, you'll regret it for at least the next day or week. Having CFS changes lives and in our own way, we have to figure out what works for us. Having tips like these certainly help!

With CFS I have found it near on impossible to clean as I use to. Out of sheer desperation watching my home turn into a mess camp I came up with easy to cope with steps to cleaning. Delegating the big jobs to the kids is really important - shopping, vacuuming, mopping and yard work. May not be done to your satisfaction but it is important for the kids to do this or get in home care. My jobs are to maintain the bathrooms and toilets and the washing. In the bathroom after I have showered, I use my soiled clothes to wipe over the recess walls - which keeps the mold away. I keep a hand towel by my basin which is more for the basin than myself. I rinse the basin with fresh water after i have used it and wipe it over. At all times until I can manage a deep clean - my bathrooms remain neat and fresh. The laundry is put on at night so that the kids can hang it up for me. I take down what I can manage during the day and process and put away. When I can cook meals - I cook extra and freeze.

I have two sets of bedding. When the dirty set comes off, it goes in the wash. Then instead of folding the sheets (way too hard on my shoulders!) they go in a wicker basket near the bed for the next week. Skipping the linen closet just makes the job easier.

There's another (free) site out there that has a 'program' written primarily for struggling perfectionists, busy parents, and pack rats - but the basic principle works for us as well. Using a small amount of time to focus on a specific task can accomplish more than you think. And getting in the habit of doing things like giving the sink a quick wipe or the toilet a quick swish daily can maintain the cleanliness without it needing to take a lot of time, energy or elbow grease. (Things we're usually lacking.)

The site advises setting a timer for 15 minutes and focusing on one task or one area without multitasking. I adjust that time to fit how I'm feeling that day. The site also has a community forum - and there is a sub-forum for people like us for tips, successes and frustrations. I don't know if urls are allowed but searching for 'flylady' will work. It's free and it's a godsend if you are the type who has trouble finishing a chore as it helps to shift your mindset.

If you wrote this, please contact me so that I can attribute it to you. Thanks. Love it.

Blessings, Glenys

"Where no counsel [is], the people fall: but in the multitude of counselors [there is] safety". Proverbs 11:14

We must be overcomers!



Sometimes it is easy to give into the depression that pain from chronic illness can bring. Especially when we have lost sleep or had an unrestful night. It is so easy to allow the pain that sometimes overwhelms us in the morning to colour our whole day. We must try to overcome that because if we don't, we will make matters worse.

It is true that our thinking patterns dictate how our day to day living is going to be. We can literally talk ourselves into having a worse day than what it is. How? you say... by not clinging to the LORD and taking all of our thoughts into the captivity of Christ. In order to stop the continual downward spiral of depression that pain brings, it is imperative that we try to redirect our thoughts and literally force our focus onto something other than our pain.

We should treat ourselves with the pain relief that our doctor has given us, take our other medications and do whatever else we can to relieve it. Then we must try to focus our attention onto what we can achieve that will lift us up. Because if we don't, we will talk ourselves into such a state that it will exacerbate the pain. Thoughts can and will do that- and serve up a great dish of depression that is hard to shake.

Now please don't throw tomatoes at me for being direct, because I suffer pain in movement and just in breathing every moment of every day. I speak to you on your level and with understanding. That is why I know the reality of pain and its effect on our life. I know that to live a reasonably personally satisfying life, we must overcome the pain by redirecting our focus!

When I am in so much pain that I cannot stand it, I listen to worship music, blog or write my feelings in poetry. Poetry can be a healing medium and a release. Another thing I avoid like the plague is forums for disabled or chronically ill people. Why? Because they force us to focus on others' pain.... this can be too much to bear when we have our own. Believe me, you can dwell too much on your disability and pain and weaken your enjoyment of life.

Enjoyment of life? what enjoyment is there in life? you ask. There is always something to enjoy in life, even in the worst of times. Vision, hearing, touch, love, dear ones, sunshine, birds singing, coffee brewing, soft sheets, warm showers, freshly fallen rain, restful sleep after pain. I am sure you could add to the list. If you don't shift your focus, you will definitely sink into the Pit of Despair. And you *don't* want to go there!

What I am saying is that those of us who suffer from unrelenting pain *have to* make a supreme effort to shift our focus onto something *greater* than the pain. Because pain will be our constant companion, we therefore have to *live* above the pain factor. Easier said than done, you say! Of course it is, but what alternative do we have?

We have to overcome the psychological effects of pain as much as we are able or else our life will be one of constant distress and frustration. Lift your thoughts to a higher place if you can, and lean on God. It will be hard to not make matters worse for ourselves by refusing to accept our illness, but we must be overcomers...

© Glenys Robyn Hicks

[When thou saidst], Seek ye my face; my heart said unto thee, Thy face, LORD, will I seek. Psalm 27:8

They suffer in silence


I write to encourage chronically ill women, but I know there are many men who follow with us, walking the long weary journey of pain with all its' ramifications. 

Men are often the butt of jokes regarding "man flu" and so on, making out that  they can't cope with pain or illness like we women. They are made out to be babies when it comes to illness: but I beg to differ.

I have seen chronic illness in men first hand with my own father and later step-father. Dad died at 50 and in his short life he battled through 8 heart attacks and 3 strokes. Even feeling at his worst, usually only a few weeks after a heart attack, he would front up to work in order to keep Mum and us 4 children. Even when taped up with broken ribs, Dad still went to work every day. He was my hero!

Forever stoic, he amazed the doctors when just days after his open heart surgery he raised his arms high during physio, ignoring the pain. He was determined to work through it all and get on with his life. Sadly this didn't happen and he died just 6 weeks after from complications. 

My step-father fought a brave battle with emphysema, forever cheerful through gasped breaths. He too worked through pain to keep his family with 3 children and took on the role of carer for his first wife as she fought a brave battle with breast cancer. It was very rare that he bemoaned his twisted hands with arthritis from working outdoors filling petrol tanks on cars docked on the wharf and walking miles every day up and down those wharves.

So stoic was my step-father that the day before he died when he felt a bit agitated, I massaged his feet and cut his toenails, only to find the most deformed and gnarled feet that it took my breath away. Not a word of complaint all those years at work! 

I sometimes wonder why ill men often don't make a fuss about their illness. I believe it is because men have been portrayed as strong at all times. And they certainly never cry. Yet to me, it would be somewhat therapeutic if they could cry, even in private. 

Tears could come for all the physical pain involved in illness, all the anxiety of tests or chemo or surgeries or even needles. And surely a tear could expel some deep fears of not being able to earn enough to provide not only for family, but medical aid. But you rarely find a man will allow himself to break down, even momentarily.

It is common knowledge that most men won't see a doctor until they are truly ill. They continue steadfastly working and hoping that what ails them will pass. They are no sissy as jokes proclaim.

I do not like jokes about sick men. They (you if you are a man), carry not only the burden of their illness, but the burden of being a provider. They carry the burden of society's stereo-typing of their gender. Tough. Unbreakable. Superhuman. A big burden which causes tired shoulders to wilt. 

To the sick men out there, I pray that you will find someone or somewhere to let down your guard and facade.  I pray not only for your healing physically, but emotionally. I am praying for you to be respected as worthy of compassion and care. I want those who you serve and for whom you strive every. single. day. to appreciate your sacrificial love for them. And I want validation for you as chronically ill people. 

 You guys rock! So thank you from all of us who know you and love you. May the LORD richly bless you as you suffer in silence. For despite the jokes, reality says that you really do.

© Glenys Robyn Hicks

Beloved, I wish above all things that thou mayest prosper and be in health, even as thy soul prospereth. 3 John 1:2

He's no hero!


As you probably know, I have been seeing a rheumatologist to see if I have SLE lupus as well as fibromyalgia. It has been a long voyage. I am due to see her again July 16 for the results of all the blood works.

Today I saw my GP who I was told had the results. It was a disappointing visit and a waste of time. The only thing he would tell me was that I have severe arthritis in my hands, which was a given seeing as they are bent and deformed.

He would not commit to deciphering any of the tests, claiming that he was just a general practitioner and not a rheumatologist. So I am none the wiser. After reminding him of my various symptoms, he told me that even if I prove to have lupus that it won't change the fact that there is nothing he can do for me. It was very depressing.

Further, my husband Chris has had tests for shoulder pain that radiates into his ribs and back. He asked if an ultrasound might help throw some light onto what's causing his discomfort, but he laughed and said he didn't think so! So Chris also felt neglected.

I am on five tablets per day to lower my blood pressure, which he knows, but I had to ask him to take my blood pressure and he sighed as he did it. When asked about coping with the pain of my arthritis, he recommended a "conservative approach": no prednisolone or opioids, just paracetamol! Seriously?

This man came highly recommended as Chris and I have serious health issues that require good care and monitoring. Today has proven to us that he is not the super hero he is touted to be. 

Fortunately Chris and I are each other's hero and advocate and it is just as well. Looks like we will be looking after each other's interests long into our dotage. 

© Glenys Robyn Hicks


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

From my heart to yours


If you suffer from chronic pain as I do, do you sometimes feel less worthy as a woman, wife, mother and homemaker because of your illness? At times like these, fibromyalgia/CFS, lupus and heart disease can cause chronic pain, and can become very lonely diseases. And self-fulfilling ones.

It does seem unfair that not only do we have this accursed disease but that we feel obliged to defend ourselves constantly! Sometimes even to doctors! Families can often be the worst with their taunts about being a hypochondriac and demanding we get a job! Why don’t they realise just breathing is a job some days and besides which, your joints and muscles feel as stiff as a statue??

 Because I walk in your shoes, may I offer you some advice and comfort? Which I know you need as you bear one of the heaviest loads imaginable: chronic pain and illness whilst trying to be a good wife, mother and home maker.

My friend, are we not the best of loving wives and mothers, homemakers, servants of our family and the LORD? We don’t throw in the towel and give up because we can’t- we have our families and home to look after- but we draw on all our innermost reserves to give to our families what is needed when we just want to crawl back into bed and vegetate. Do we? Not as much as we want!

We show great devotion, endurance, and self-sacrifice with our limited energy and draw closer to God than perhaps most healthy women would do. Why? Because it is harder for us! Isn't it more valuable in spiritual terms to deny oneself the rest and ease we would love to indulge in, than to achieve the "honour" of having the most spotless of homes etc with relatively little cost as regards personal denial and physical pain? Kind of like Jesus's parable of the widow's mite- she gave all she had and the others gave of their abundance! Do you not see the correlation? We give our all, not just a little of the abundance of our strength. Surely then for us, are we not more worthy of honour and appreciation? I would say so!

And so I would encourage you to realise that you do not have to take the taunts and demands to heart, nor let it settle in your spirit. You do not have to defend yourself incessantly to anyone, because you are doing far more already than most people of lesser fortitude would do. Furthermore, God hears our sighs and pleas, He knows we are but dust and knows our frame- He most of all identifies with our weaknesses!

Will He not say "Well done Thou good and faithful servant" Matthew 25:21  to us who struggle to serve others every day when our flesh cries out for compassion and being served ourselves? In moments like these, I cling close to Christ and let His compassion and grace wash over me afresh- for without His closeness I would never get up some mornings! With the Psalmist, let us rely on God for our strength as we cry, "I love you LORD my strength!" Psalm 18:1 I pray you feel His loving help. Sending prayers from my heart to yours!

© Glenys Robyn Hicks

Sometimes you just have to be separate



Night time has proven to be a difficult time for Chris and I.  We both have problems sleeping and often we keep each other awake.

Chris has osteoarthritis in his hips and shoulder and finds it hard to drop off to sleep. His legs are restless and jumpy and painful he often suffers from bad calf muscle cramps. It is not unusual for me to find him making himself a cup of tea in the middle of the night because he can't sleep. Plus we both have sleep apnea.

But more often than that, it is I who makes it hard for him. I usually go to bed full of pain and can't really get to sleep unless Chris rubs my back. He is very good like that and I usually get to sleep quickly. However, I grind my teeth in my sleep, stop breathing for about a minute, and snore. 

My medications cause GERD which has resulted in me having aspiration pneumonia and left me with asthma. I often wake up unable to breathe, and need to use my inhaler. My blood-thinners Clopidogrel and aspirin (for my stents in my heart to stay open and for antiphospholipid syndrome), cause me to have nosebleeds in my sleep as well.  Poor Chris is often disturbed again with this. So we are not good night time company.

Obviously, not all these things happen every night, but a good lot do and we have often considered sleeping in separate rooms. However, I have a problem with that because I love cuddles and sex if it happens, and I love sleeping in Chris's arms until I drop off to sleep. It has been our custom for the 22 years we have been married.

So we have worked out a strategy for staying close, yet sleeping separately. Chris will come to bed with me, and when I am asleep, he will come out to sleep by himself if he can't drop off.  We haven't actually got another bedroom set up in our new small house, so Chris sleeps in the recliner rocker. 

We are very passionate with each other and very demonstrative and we often sit watching TV holding hands. So there is no problem with closeness. And there is no problem with sleeping separately for the most part.

This situation is not ideal, but when chronic illness threatens to deprive others of their needed rest, something has to be done. We don't see any harm coming into our marriage through separate rooms, in fact, we think under the circumstances, it would enhance it...sometimes you just have to be separate.


© Glenys Robyn Hicks


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

Hanging on by a thread


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

Lupus: a hard one to call


Over the past 15 years, I have had so much trouble with aching joints and muscles and tiredness that I have had several series of blood tests for Lupus. Fifteen years ago I have been diagnosed with severe fibromyalgia but there is a question mark over whether I have lupus as well. I am sick of going to the doctors and not being taken seriously.

In spite of getting repeated highly suspect blood results, I am still waiting for a diagnosis. Two years ago I went to a local rheumatologist to get a second opinion. He told me he thought I may have it and asked what my original rheumatologist Dr H thought. I told him she said she wasn't sure and therefore diagnosed me with non-specific connective tissue disorder.

Straight away, he announced that he too thought I didn't have it: after all he had gone to school with Dr H and she was an honours student- if she wouldn't call it Lupus, he wouldn't. I left totally frustrated! And not helped at all. It was an expensive and futile visit.

For anyone who has a diagnosis of lupus or who cares to read further, here are the reasons I believe I have it. Posts are written by myself on But You Don't Look Sick Board.........

Hi. I have been to a rheumatologist and was told that I have Unspecified Connective Tissue Disease and she is not ruling out lupus.

My symptoms are:

extreme fatigue

fibromyalgia

dry eyes and skin

+ANA- has tripled in 12 months

constantly elevated ESR (mild)

diabetes 2

hypothyroidism

cardiovascular disease- 3 stents inserted in Oct this year thrombosed radial artery after angiogram

antiphospholipid syndrome

polymyalgia rheumatica

worsening fatigue

sunburnt look across my nose and cheeks

maddeningly itchy raised rash on my back and spreading out to shoulders, and now going up nape of neck and into my scalp- scalp is bleeding from scratching it

severe muscular pains and sore finger joints

swollen glands at back of neck and behind ears

difficulty focusing on things

one lot of eye styes after the other

Mesenteric panniculitis

Dermagraphia

Grape like blood filled sores in back of roof of mouth that burst and ulcerate- no injury, just happen

Painful fingers- one cant extend straight- wrists and neck and toes ache but not positive for RA

Butterfly shaped MILD transient rash like sunburn after being outside or tired

Extreme fatigue like fibro flare but lasting a month now with mesenteric panniculitis symptoms again

I am not anaemic though. Does this mean I don't have lupus? does it sound like I do have it? I dont want the disease per se, but maybe if I finally got a diagnosis, they could treat it.

Last year I had a return visit to Dr H and she scarcely looked at the results but seemed obsessed with the fact that I have had 3 stents put in my heart and am obese. She said she would put me on Plaquinel if I continued to have pain. I do not intend to consult her again. She diagnosed my identical twin as just fibro, and she now has full blown lupus SLE. My cousin has it also and one cousin has a granddaughter with it... so there is a very strong family history.

Fast forward to today and nothing has changed except I am losing my hair at a rapid rate. My left leg is visibly swollen and painful. My ANA and ESR are even more elevated. I have antiphosphilipid syndrome but most other tests seem OK. Though one with a River Viper serum (?) was abnormal.

The ANA+ was 1:80 in 2005 then 1:323 in  2015 and 
this latest one last month is 1:600 . There seems to be a lot of inflammation but he doesn't know what is inflamed. Tomorrow night I am going to see my doctor and Chris is coming with me. There are now issues with my bleeding too easily. Blood thinners are too potent for me I think. I am a mass of bruises! I cry with joint and muscle pain.

I know lupus is a hard one to call but I want an answer and am requesting more tests and a new rheumatologist. This time I won't tell him about Dr H! Any thoughts and prayers are always most welcome. I just want to be without hurting!

© Glenys Robyn Hicks


Bless the LORD, O my soul, and forget not all his benefits: who forgiveth all thine iniquities; who healeth all thy diseases; Psalm 103:2-3

You can still be a Proverbs 31 wife: a study



I know that we women who suffer from chronic illness and pain often fret because we want with all our hearts to be like the Proverbs 31 woman. Yet no matter how hard we try, we feel we cannot be like her. We then either give up completely, or sink into a deep depression… Sometimes we are far too hard on ourselves, even demanding more of ourselves than God does. After all, He understands us- He knows our frame and remembers we are but dust.

Another thing that we tend to do is to take man’s standard of being a good wife, mother and homemaker and we, on finding we cannot keep up with our healthier Sisters, wilt under the strain. This is a shame because Jesus says to come to Him all who are weary and He will give us rest. His yoke is light. But the perfectionism of man isn’t. Wouldn’t it be sad for us to constantly feel false guilt because we can’t keep up our homes like Martha Stewart? But here is some good news: we may very well find out after looking into the scriptures that we are closer to being a Proverbs 31 woman than we think….

Firstly, we must remember that the Word of God is the first and last authority in our lives. What exactly does God say about the godly woman? In Proverbs 31:10-31 Who can find a virtuous woman? for her price is far above rubies… Is your heart yearning to be a virtuous woman? Are you seeking to serve God despite your pain? If you are, then your price is far above rubies!

The heart of her husband doth safely trust in her, so that he shall have no need of spoil Do you seek to be a blessing to your husband? Can he trust you with his heart, his dreams and fears, raising his children and keeping his home to the best of your ability? Then your husband will be blessed for you already have his trust. That too is a truly precious thing!

She will do him good and not evil all the days of her life… Do you try to be a help meet for him? Are you consistently thinking the best of him, serving him in love and trying to be as unselfish as you can be, even in your worst times of illness or pain? If so, you are emulating that seemingly elusive Proverbs 31 woman!

She seeketh wool, and flax, and worketh willingly with her hands… When you are feeling reasonably well, do you try to do something creative that will benefit your family? Do you work willingly even though it hurts? Willingness is a matter of heart, not productivity. If you work willingly no matter how small the job, you have the spirit of the Proverbs 31 woman!

She is like the merchants’ ships; she bringeth her food from afar... This one can be a toughie, especially with illness at its height. But I also believe that the ill woman who seeks out coupons and directs those who are able to help with the purchasing of groceries to shop at the cheapest but best for money supermarkets, is living this verse to the best of her ability. She is like the merchant’s ships- charting their course from her bed or buying her food online!

She riseth also while it is yet night, and giveth meat to her household, and a portion to her maidens… Again, a seeming impossibility for the chronically ill woman. But again the spirit of the Proverbs 31 woman is seen in not in the early rising per se but in the planning of the godly woman as she directs her helpers in conducting the running of the home. She or someone else must have a plan of action and I take that as giving meat and portions to her maidens.

She considereth a field, and buyeth it: with the fruit of her hands she planteth a vineyard… There is nothing to stop an ill woman having a say in business matters or running a home business from her sick bed if at all possible. She may not be able to plant a vineyard with her own hands but the spirit of this wonderful woman of God can be seen in the planning, thought and effort in being business savvy, and this is her toil. She is still emulating her!

She girdeth her loins with strength, and strengtheneth her arms… This is a tough one for those of us with chronic illness and pain. But again I see us being that woman of God in taking care of our bodies, managing our illness, seeking knowledge from medical professionals or naturopaths and making sure we do precisely what we are told to do. That includes getting rest and trying to cast our cares on the LORD so as to strengthen ourselves!

She perceiveth that her merchandise is good: her candle goeth not out by night... As we survey our efforts in managing our home and family, we will see that we have done well- for it is so much harder than for those of able body. We need our rest but our candle not going out at night means that we are diligent in the overseeing of our home and our eyes are ever vigilant to see just what goes on around us- even when we are taking our rest!

She layeth her hands to the spindle, and her hands hold the distaff…Whenever possible, we seek to be as diligent as possible keeping watch over our household, our children and our husband. We work as much as is humanly possible but we do not fret if we cannot honestly cope with work at any particular time. Again, I see this as a matter of heart. … The godly woman who suffers from chronic illness and pain but who seeks to serve the LORD despite her pain- is more like the Proverbs 31 woman than she could ever imagine….

She stretcheth out her hand to the poor; yea, she reacheth forth her hands to the needy... Kindness and compassion is a matter of heart and the heart of the giver is one of compassion. I see no reason why the chronically ill woman cannot extend her hands to the needy in special offerings or acts of kindness.

She is not afraid of the snow for her household: for all her household are clothed with scarlet...Again, the chronically ill woman can take comfort in knowing her family is well clothed. It is relatively easy to shop by catalogue or online through ebay. Planning and diligence in being observant to your family’s needs and sizes will pay off in knowing that they are warm and well-presented.

She maketh herself coverings of tapestry; her clothing is silk and purple…Again, this making of tapestries etc would depend on how severe the sufferer’s illness and pain was, but I feel that the essence of this verse is that we can still take a pride in our appearance in spite of our illness. I know sometimes this can be one of the last things on our minds, but I think it is important to ourselves and our husbands to try to keep tidy.

Her husband is known in the gates, when he sitteth among the elders of the land…A husband who is well-loved will usually be willing to learn how to iron his shirt in times of his wife’s illness’s flare. If not, there are laundries that press shirts. A husband of a godly woman will never be known for an untidy and unkempt appearance. It is just harder for us as we have to be super diligent. If we can’t help our men retain honour by being well-presented, we should seek out helpers who will either volunteer or help for a small fee.

She maketh fine linen, and selleth it; and delivereth girdles unto the merchant… Again, this is often difficult for the ill woman to achieve but I believe the spirit of the Proverbs 31 woman is shown in the extra planning and eye for detail in watching over her family and household. As we know, everything is more difficult and the ill woman will be ever seeking to cut corners in order to have her home run well.

Strength and honour are her clothing; and she shall rejoice in time to come...The chronically ill woman works harder than most for she starts her day at a disadvantage- usually lack of sleep due to pain. She has medications to take that can have disastrous side-effects such as making her sleep when she needs to be awake or nausea. But she works diligently as best she can to keep the home fires burning and the family happy. She is often the most selfless of women! She will be able to take pleasure in times to come, knowing that she did her best before God, to be His woman! She is a woman who should be honoured above all others, in life and in the one to come!

She openeth her mouth with wisdom; and in her tongue is the law of kindness...I believe the godly chronically ill woman who reads the Word and keeps close to the LORD will open her mouth with wisdom, she will speak with kindness despite feeling unwell, for the LORD Himself will strengthen her spiritually.

She looketh well to the ways of her household, and eateth not the bread of idleness... Even though the chronically ill Christian woman may be bedridden, she can still look well to the ways of her household. By being attentive and delegating responsibilities wherever possible, she will never eat the bread of idleness. Being bedridden does not necessarily mean that one is idle. Indeed, running a home from your sick bed is a feat that surpasses the strength and vigilance of healthier stronger women!

Her children arise up, and call her blessed; her husband also, and he praiseth her… As children grow and your husband sees your efforts and realises the sacrifices that you have made- and the extra pain it has caused to ensure their upbringing is well done and that they are all comfortable and well looked after, they will bless and praise you. You are such a blessing to them!

Many daughters have done virtuously, but thou excellest them all, favour is deceitful, and beauty is vain: but a woman that fears the LORD she shall be praised.… Indeed, many women will have done virtuously, but you have put it in harder than most- you surely you do excel them all! When many would just crumble, you have kept striving to be a Proverbs 31 woman.

Give her of the fruit of her hands; and let her own works praise her in the gates...You see, you will have the fruit of hands and your own works will praise you in the gates- because despite all obstacles, you have run the race and won- for you really *are* a Proverbs 31 woman!

© Glenys Robyn Hicks