Not as I appear

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 injured knees, angina, spinal 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 not as I appear: I am not "normal".

 © Glenys Robyn Hicks    

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

It still is what it is!

You may remember me telling you that I bought a bath chair lift so that I can have a bath. I was so overjoyed when it came.

Unfortunately it didn't work out for me and I only used it twice before I sold it. It came down to awkward plumbing and knees that don't work anymore. 

To say I was disappointed would be an understatement, not only disappointment that I couldn't bathe but also for the fact that it cost me $870AUD.

It was still immaculate and under warranty so I decided to sell it. I did after a couple of weeks, but I sold it for only $400AUD with ebay fees of $53.90 so I didn't make much back on it. 

On the bright side though, I did find that the shower in the main bathroom has an easier accessible shower stall and better water pressure than the ensuite one. 

And speaking of showering, I have purposed to have it at night now due to my spoons being scarce with my latest fibromyalgia flare. It doesn't matter so much if I run out of spoons if I am on my way to bed anyway.

Victoria has been experiencing very wild weather with lots of rain and thunderstorms. The pain in my joints and muscles gets too much to bear at times and I find I am needing to take a Tramadol some days.

 I haven't been spending much time on the computer for this reason as Tramadol makes me feel spaced out and I can't focus to write properly. Like everything to do with fibromyalgia, it's a tough task master and a tyrant, but it is what it is! 

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! 

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.

Wheelchair bound

So, the MRI results are in. I have a meniscus tear, fabella, torn posterior crucius ligament, bursitis and osteo arthritis behind the patella. It needs surgery as it does not repair itself.

I am to see an orthopaedic surgeon and meanwhile I must rest the knee and use pain killers. 

We have bought a shower chair and a wheelchair. I have had Chris push me on the seat of my walker, but it is a big strain on his heart and I worry about him. 

It is difficult to focus enough to write at the moment and I spend a lot of time on the couch aka the beach, or in bed with my electric blanket.

I am just able to stand enough to wash some dishes, cook a meal and stack the washer and dryer. Chris helps sometimes and has been my legs.

I am making use of the slow cooker a lot, cooking the meals as I am able to stand.

As with all new health issues, I am trying to come to terms with this "new normal" and the constant struggles with fibromyalgia are now "normal" and this new challenge is calling for all my ability to accept my new lot in chronic illness.

I am disheartened that both my knees have now given way (I have a torn meniscus in my other knee), and am trying to feel grateful that I could afford a wheelchair. Thank goodness for afterpay.

However romantic a picture I can find really doesn't cut it for me as I struggle to accept that I am now wheelchair bound.