Helping ourselves

 

I need pain relief. My doctor's on holiday until Feb 9 so I had a phone consult with his doctor wife. I told her my pain is currently off the charts with fibromyalgia, polymyalgia and both knees paining me badly. I asked for a prescription for Tramadol but she said for me to wait until he comes back!

Too long to wait when you are blown away with pain. So I am going to take some Prednisolone for a few days. I have some in the house.

How is it that people with genuine pain issues who rarely ask for help, are regarded with suspicion and treated like a druggie? it's not fair... 

Sometimes you have to go against the medicos and do whatever gives you relief.. (as in taking Prednisolone for some relief) People who are chronically ill and in pain have been known to commit suicide... I can understand why- not that I am going to... just sayin'

We are judged so harshly because of those who rort the system and abuse the drugs.. We have to be our own doctor and help ourselves.

Do you find that too?

We are in need of haircuts but it is such an ordeal getting out that I placed a query online in our local group on FB and a hairdresser who comes to the house pm'd me. 

It will be nice to have my hair styled short. Not sure what to ask for- I can't have a fringe or hair on my nape because with fibro, I itch too much and scratch my skin...

Fellow fibromites,  do you find that too? 

It's all too much

 

So recently I have had chest pain in angina and breathing problems coupled with what I thought was fatigue from an ongoing fibromyalgia flare.

My blood pressure sky rocketed, requiring a visit to a cardiologist who ordered an echocardiogram. My general practitioner told me if the results were bad, he would contact me. And he did.

I got the call last Friday telling me to make an appointment for a phone consult so I ended up speaking to the doctor on Monday. He told me I have heart failure due to Pulmonary Hypertension.

There is no cure for it but there are some treatments. I am already on blood thinners which I will stay on as PH can cause blood clots in the lungs. I already take 7 blood pressure tablets a day.

I often have felt dizzy and this is another symptom of PH and I feel like I can't get enough air in at times. The time will come when I will probably need oxygen at home.

Forget about exercise- I nearly collapse with exhaustion after walking up our long passage to answer the door.

I will know more tomorrow when I see the doctor in person. This is needful because he wants to check out the swelling in my feet, ankles and legs. I suspect I have fluid in my abdomen too. It hurts and is tight like a drum.

I had a blood test yesterday to check on my kidney function and this will be a regular thing.

Lately it's been one thing after another and I am a tad depressed. Prayers would be much appreciated. It's all too much! 

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

She is not afraid of the snow

 

Recently Chris and I have been stocking up our fridge, freezer and pantry. The world is a very sad place and nothing is sure...

We aren't living in fear- we just think with the price of diesel, strikes, problems in distribution and so on, that it would be prudent to have some back up food in the house.

So far we have enough groceries to last us about six weeks on a planned menu that doesn't use all our reserves at once, yet nourishes us. I have a few extra packs and tins of cat food for Xena.

In line with this, I have been getting prescriptions filled promptly and buying extra diabetic supplies. Again, enough to last us about six weeks. And that includes pain killers for my fibromyalgia.

Already we have had distribution problems with shipping containers banked up on wharves and no workers willing to unload them. With all our various health issues that require many tablets a day to control plus insulin injections, we are aware that having a few weeks in advance if possible is also prudent.

My antidepressants weren't available for months and if I hadn't been wise, I would have had a meltdown. Fortunately I had a couple of boxes of them in obeyance. 

Whilst I don't advocate stocking up because of fear, it is not wrong to anticipate difficulties in obtaining basic supplies and acting accordingly.

© Glenys Robyn Hicks   

 

She is not afraid of the snow for her household: for all her household are clothed with scarlet-Proverbs 31:21

More than a place to sleep

 

Recently someone asked why do we make our bed? I gave it some thought as I have recently been making my own bed daily, in spite of regularly going back into it for a nana nap. Here's a few thoughts on why I use my precious spoons to make my bed.

Physically its more comfortable to sleep in. 

Psychologically its more inviting.

It makes the room visually more esthetically pleasing.

The bed's the centrepiece of the room like in a painting. 

It gives the illusion of order and calm.

It uplifts my spirits when I come into my bedroom.

With fibromyalgia, angina and back problems, I make mine but often get back in it. So I remake it.

When I make it, I don't get on my knees as they are broken and I do not do hospital bed mitred corners. I pull up my top sheet, then turn back the minky blankets. With arthritic hands, the only tucks I do are at the bottom of the bed to secure the bedding...

But, being honest, I sometimes let it go when I have a fibro flare- being satified that the sheets and bedding is clean. But the majority of times, my beds are made. 

Beds are more comfortable made up or at least straightened and are more than a place to sleep.

Ya gotta laugh

                                             

I got some of things I wanted to do done, but alas, it came with a cost. I have another flare of fibromyalgia.

I can hardly move and hurt everywhere. It doesn't help that we have thunderstorms on the horizon  either. So today I have only washed my dishes and I will cook dinner. It's all I can manage.

All our bedding is washed and dried and when our cleaner comes Monday, she will put more clean sheets on. I just did the minkie blankets and our doonas.

I must say that drying the minkie blankets in the dryer has given them a slightly grey tinge, but they are still soft and smell great. Most importantly, they are clean.

My plan for the remainder of the day is to cook bangers and mash for dinner. I will take some Tramadol because my knees are hurting as well as the usual fibro pain.

Xena was outside for a bit and was attacked by a horrible Siamese cat who stalks her. I ran to help her and damaged both my sore knees. I am in too much pain to get down the steps and walk to the back garden to pick up my slipper that I threw at it. 

That Siamese cat didn't want to budge and would not leave the back garden. He's stubborn and has worn out his welcome. Much like my meniscus pain in my worn out knees: joking.  Ya gotta laugh. 

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 is what it is!

 

So it's Christmas Eve here in Australia. I am struck down with a vicious fibromyalgia flare. 

In recovery from going out for medical tests for both myself and my daughter, I am trying to find some spoons to take a shower before bed.

As I mentioned, Chris and I are cancelling Christmas this year. In light of how I am feeling, it is just as well.

Chris is recovering from a fall last week and is not feeling the ho ho ho either.

Apart from a traditional Christmas lunch courtesy of Lite N Easy, we will be taking it easy tomorrow.

We are going to take Holy Communion online with my sister and son at lunchtime and that will be the extent of our celebrations.

As I said in the last post, it is not an ideal Christmas, but it is what it is.... fibromyalgia wins again! 

It's OK to have a simple Christmas

As you know, I have been having problems with my heart and fibromyalgia. My blood pressure is barely controlled and I am constantly tired.

We have decided to cancel Christmas this year. I haven't even put up a wreath on the front door, let alone, a Christmas tree.

We are staying home and nobody is coming. Contrary to how I would feel in years past, this year's plan gives me peace.

We plan to play games online with my sister and son. There's nothing like a game of online Scrabble with familiar people who are well matched in scores.

None of us is able to attend church these days but that doesn't stop us from worshiping God and remembering Jesus on the day we choose to celebrate as His birthday.

Next week I will be ordering my Christmas food and I will be buying a ham and organic salad vegetables for Chris's and my lunch. I will also be buying some grape juice and matzo crackers, as we plan to take Communion online with my sister and son like we did last Easter.

It is not an ideal Christmas, but with all of us feeling unwell, it is making the best of a bad situation.

We all feel that as long as we remember that God sent His Son Jesus to bear the sins of the world and be our Saviour, then that is what Christmas really is.

Besides, the first Christmas was extremely unpretentious and simple. It's OK if ours is too...