Showing posts with label brain fog. Show all posts
Showing posts with label brain fog. Show all posts

It gets tiresome!


Over the last few days, I have had a cancer scare with someone dear to me, and my fibromyalgia has flared and with the pain comes that most embarrassing symptom of all: fibro fog.

I was talking on the phone to my sister, and was telling her something that had happened, but I never got to finish what I was saying. I got distracted mid-sentence and never finished the tale.

Unsure of her knowing of whom I was speaking, I digressed in a discussion on who he was, and when I tried to remember the point of discussion- I simply forgot.

Being that my sister also suffers from fibromyalgia, she understood-otherwise it would have been totally embarrassing. But there have been times in the past when I simply can't think of a word and flounder.

Like the time I was at the doctor's and was telling him something important. I simply forgot a word and there was a pregnant pause as I floundered to find it- embarrassment made it more difficult to find. He just looked over his glasses at me until I ventured to say that my fibro was flaring and this isn't usual for me. I am usually verbose.

Many times during a fibro flare, I can be reading something and it just doesn't sink in. I reread it and reread it before it is clear what I have just read. Or I can be paying the bills and have to check upteen times before I pay it to make sure I have the correct amount and I must check again to whom I am paying said correct amount. 

This coupled with the physical pain and fatigue make for a very challenging life during a fibro flare. It has the propensity to sap you of your self confidence. It can make you doubt your sanity. It can scare you to death as you worry about your competence to even run your own life at times.

I would not wish this on anyone: the pain. the fatigue. the confusion. the sapping of confidence. the insomnia. the judgments.

Many times I cannot attend church or read my Bible and I sense that there are some who think I am backsliding. Far from it. I am simply too exhausted.

All these things are a Fibromite's lot and no one seems to understand if we give in to a rare moment of snappiness or pique. It's just that the whole fibro thing with pain 24/7 gets one over it very quicky and it gets very tiresome! 

Today's to do list:

  • Washing
  • Clean my kitchen
  • Cook chicken risotto for dinner

 

When the fog clears, tea's on the list.

 

Recently I have been having trouble remembering things. At nearly 70, I worry about dementia and think that maybe I am going down that path.

But in talking with people who suffer from fibromyalgia like I do, I realise that fibro brain fog can make one forgetful. Especially during flares.

Having just moved house about 6 weeks ago, I am just starting to recover physically. I have a flare that is pretty constant with no spoons and I do forget things. And words mid sentence.

I don't think me forgetting to order tea in the online grocery order really means I  have dementia. I guess fibromyalgia flares can do that.

Looking through Marketplace the other day, someone was selling a bassinette identical to the one I had for my 4 children. It brought back memories like they were only yesterday.

But that didn't make me feel very at ease about my forgetfulness because dementia robs one of short term memory. But then so does fibromyalgia.

Considering all my previous times of brain fog during a flare, and my subsequent good memory, I surmised that it was not dementia, but brain fog from said flare. 

I believe when the flare abates, and the fog clears,  I will remember the tea in next week's shopping list. 




Oh no, no ho ho


So we had our little granddaughter Taylah for a few days, and picked her up Friday, but it didn't go to plan. After a full day, in spite of me making an effort to play with her and give her my full attention, she decided she wanted to go home. 

She said she missed her mother, and so we made the 2 hour trip each way to drop her off again. Even though I didn't drive, I was exhausted. Even being a passenger is gruelling when you have a fibromyalgia flare, angina, sore back and broken knees that throb with every heart beat.

I had bought a rolling pin with the nativity on it and planned to make Christmas cookies as gifts. Well, I did make cookies as promised with Taylah helping me, but not the ones I planned to give away. They were plain cookies. 

When I told her we had to refrigerate the dough for a couple of hours, she said she didn't want to have to wait. So the Christmas cookies didn't come to pass. 

The Mother of all Flares has come to pay me yet another visit- or maybe I just haven't recovered from the last one. I am feeling so exhausted I could collapse. So yesterday I had a nana nap and went to bed earlier than normal.

I was hoping that would do the trick and give me some wind under my sails, but in truth I awoke with no spoons. No spoons on Christmas Eve is a disaster!

We were supposed to leave our home around 11am today and visit my children and grandchildren but I felt unsteady on my feet, due to wonky knees, foggy in head due to fibro and hurting so badly with my spinal stenosis that I had to cancel.

Tomorrow we are supposed to see Taylah open her presents, visit my sister and son for lunch and go to my step-daughter's for afternoon tea before driving the two hours home before dark.

Truthfully, unless I have a miracle, we won't be going. After I finish chatting to you, I will be letting the Tramadol work by going to bed to rest. I really want to feel better.

As much as I love my family and Christmas, it would seem that it is going to have to be cancelled. It's a pity but it is what it is! Besides, nobody wants a spaced out whiny woman around them on Christmas Day. And I don't want to her, but unfortunately it's hard with illness to have any ho ho ho. 




I know how she feels


So, many moons ago, my ex-husband and I used to go every Saturday to see our eldest son play football. On inclement weather days, I  would sit in the car with a friend I had made. She came to watch her son play as well.

We would chat during quarters and half time and I had noticed that she had no wedding rings or jewellery of any kind. I knew she was married because her husband and mine would watch our boys together.

She was a bit of a sour puss to be totally honest. Perpetually moody and very negative. I couldn't understand why because she looked well and dressed nicely. There was something about her: she was a bit odd.

Anyway, during our talks she said she was perpetually tired. Bone tired. She didn't work outside of her house and only had one child and he was almost a teenager like our son. What could be making her tired?

Years before the mobile or cell phones came in, I asked her what she thought the time was. She pulled her watch out of her pocket and I couldn't help but ask why didn't she wear it?

She replied that she cannot wear jewellery of any kind. It drove her nuts. Her muscles ached constantly and she was in pain and was being treated for depression. The doctors couldn't find anything wrong with her in spite of oodles of tests. 

For her treatment, she was under the care of a psychiatrist who said she had some form of mental illness that bordered on OCD as well as depression and fatigue. Then she was labelled as a hypochondriac.

She was on strong pain killers and also Valium and anti-depressants. Nothing seemed to help and she told me she had to force herself to come and see her only child play each week.

I thought she was rather weird to be honest. I mean why can't anyone bear to wear even a necklace or wedding ring or watch? Mentally, I lumped her in the acquaintances category, rather than a girl friend.

One day she told me she was having trouble sleeping and she needed to sleep off her medications but often felt groggy and muddled during the day. So, I offered to pray for her. Well, she blew up at me and screamed, "There is no God! If there was, he wouldn't have let my brother die in a fire on an oil rig!"

I was told not to pray for her again and as she was very vitriolic, I decided to sit in our car from then on. I didn't need her anger and aggressiveness.

This was in the 1980's and fast forwarding to 1999, with the identical symptoms as her, I was diagnosed with fibromyalgia after many tests for Lupus. I had never heard of it. 

Psychiatric assessment wasn't even muted and I confess I felt a sense of relief at that. It was a medical condition for a nasty painful syndrome that I now know that poor woman had.

It all fell into place: a trauma that ended her peace, the body aches, fatigue, irritability, skin that could not bear being touched-and it excluding wearing jewellery, no restorative sleep, and brain fog with cognitive difficulties.

In those days, when fibromyalgia was not even heard of by the general population and doctors weren't trained about it, fibromites were treated with disdain and were labelled with munchausens and other neurotic labels and as a result were often overmedicated with anti psychotics and Valium.

After being diagnosed myself, I remembered this poor woman and I confess I too labelled her as a hypochondriac and malinger and possibly suffering from munchausens as well.

I am so glad that fibromyalgia is much more known and is treated as a real malady and not a psychiatric disease. Yes, we occasionally are still misunderstood, but not as much.

Since I found out about fibromyalgia, I still pray for that poor woman and I thank God that at last she would be heard. It's the least I can do for her, now that I know how she feels.


© Glenys Robyn Hicks



Beloved, I pray that you may prosper in all things and be in health, just as your soul prospers. 3 John 1:2


Domesticity is far away!

I have been pretty much bedridden this last week. For the first time I feel a little life in me so I am going to try to catch up on a bit of housework.I am really concerned about doing too much and burning out again, inducing another fibromyalgia flare. So I have to consider that as I plan my return to domesticity. I don't want another setback that puts me to bed again. It's all about spoons!

The journey back to domesticity is not without peril. There is a fine line between adequate expenditure of energy and exhaustion. Exhaustion can sneak up on you and bite you on the heel when you least expect it. Each day is a challenge as you will see in reading this post.... this is a typical day in the life of a chronically ill wife.

You can be managing quite nicely, up to your chin in folding clean clothes on your bed, when suddenly you wake with a start to find that you have fallen asleep and dribbled all over your husbands' underpants and shirts.Or you can plunge your hand into a sink of the cold and slimy water for soaking dishes left over from yesterdays' dinner that were supposed to be done as soon as you got your second wind after cooking last night. Only the second wind didn't come: not even a breeze!

Vacuuming can take forever as you find that the bag needs emptying and you can't find a new one and as you search, you smell a rancid odour from the washer, where you find yesterdays' wash finished and patiently waiting to be hung out. The washer is reset to rinse the smelly load but you forget to look for the vacuum bag as you fret about how many spoons it will cost to hang the clothes out.

Starting to feel anxious and overwhelmed, you decide to have a cup of tea. A donut in the pantry calls your name and as you open the microwave to heat it, you are surprised by your bowl of porridge left there at 6 am when you got your husband's breakfast. Pulling a tissue out of the box, you have a little cry into your cup of tea as you munch your donut. You are hungry because you didn't actually eat breakfast after all.

Sick at heart and already feeling tired, you decide to just chuck the clothes in the dryer, soak the dishes in fresh hot soapy water for washing later on in the afternoon and you have a nap... after all, a nana nap will help your brain fog clear and you can catch up then. But the afternoon brings it own set of woes as you wake feeling worse. 

You consult your menu list only to find that even though you intended to get the meat out to defrost this morning, you had suddenly felt compelled to double check that you had taken your meds and then you forgot about the meat. With your confidence rattled, you wash the pans that are needed for tonight's cooking and resolve for the hundredth time today to do better.

Eventually the day draws to a close with the evenings' dishes soaking in the sink ready for that elusive second wind. And as you feed the cat and take your evening meds, you wonder if tomorrow will be any better...Lying in bed and in a funk bordering on depression, you start to pray for strength for the morrow and a restful nights' sleep. Only no thoughts come to pray with sense and you are swept into a fitful sleep on a long sighhhhh. 

So ends another day and domesticity is still far far away.


© Glenys Robyn Hicks


"For I the LORD thy God will hold thy right hand, saying unto thee, Fear not; I will help thee. " Isaiah 41:13

First we have tea


We had a very fitful sleep last night due to the temperatures being so high yesterday. Our reverse cycle air conditioner just doesn't make it up to the front of the house and our bedroom is right at the front, faces east and catches the sun all day. It was like an oven in our room with the temp being 23C all night. Our fan only blew hot air around....

It is supposed to be 30C today with thunder storms later. We always have our Emergency phone app on to advise us on fire activity as we live in the country. Last year Chris's son, who lives near us, had to evacuate his family because of fires and this is something we are prepared for. 

In the front guest room we have our important documents, spare medicines and some clothing and our photos on USB  disk. They are easy to grab in case we get the evacuation call. With high fire danger today and lightning strikes a possibility, we have our fire plan in place. Yes, it's firmly in place,  along with our little white cat, Xena's cat cage. Just in case...

I am currently listening to the Bible on You Tube and it is great for times when I am in a fibromyalgia flare and can't take in what I am reading. This is my preferred method of quiet time on days like today when my fibro is bad and I am lacking sleep and spoons

So because of lack of spoons and much heat, we plan to stay home today. So far, I have showered, dressed and taken my medications. I have a few things planned for today:

  1. I need to fold and put away three loads of washing.
  2. I want to make a lamb stew in the slow cooker for dinner (so as not to heat up the kitchen)
  3. I want to resume following FlyLady by jumping in wherever the zone is for today.

I usually use FlyLady and Sylvia Britton's Lists for chronically ill women depending on how I feel each day.  I use the List for the day, then I may follow FlyLady's zone for 15mins. Today I am doing 15 minutes of cleaning in Zone 1 in FlyLady.

If I get these three things done today, it will be good. I will just cross off those things I achieve. We will see. But first we have tea. Everything goes better with a cup of tea!


Welcome Validation: False Guilt's cousin



Sometimes when I am having a flare of my fibromyalgia, I find that I need to feel validated in my sufferings. Not many people believe that fibromyalgia is real, and when you feel wiped out with chronic fatigue, endless pain and brain fog for weeks at a time, you can suffer from False Guilt. This is a cousin to needing Validation. So, feeling like that, I decided to look up some sites and recap the symptoms of the complaint. Here they are:

Fibromyalgia produces widespread pain, disturbed sleep, and exhaustion from head to toe.1 Fibromyalgia means pain in the muscles, ligaments, and tendons—the soft fibrous tissues of the body. Although the muscles hurt everywhere, they are not the only cause of the pain. Instead, the diffuse, body-wide symptoms are greatly magnified by malfunctions in the way the nervous system processes pain.2,3

Regional muscle pain not related to arthritis or the nervous system also occurs in the majority of people with fibromyalgia.4 Patients describe this as firm knots in the belly of muscles, often causing restricted movement and radiating pain.5 These muscle nodules are myofascial trigger points and some researchers suspect that these painful areas overlap with the tender points used to diagnose fibromyalgia.6

The symptoms of fibromyalgia are unpredictable and most patients are frustrated by their physical limitations and inability to make plans. You may feel as though you have to "push yourself" to get things done.7

Most patients with fibromyalgia say that their muscles feel like they have been pulled or overworked, and sometimes they twitch or cramp.8 Even the skin may feel badly sunburned.9 To help your family and friends relate to your fibromyalgia symptoms, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply.

Given that the symptoms may be similar to a viral flu, experts in the field of fibromyalgia and chronic fatigue syndrome believe that these two illnesses may be one and the same.10 Gulf War syndrome also overlaps with these two conditions.11
Common symptoms:

Pain - Fibromyalgia pain has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, stabbing, or intense burning. Quite often, the pain and stiffness are worse in the morning, and muscle groups that are used repetitively may hurt more.12 In addition, the severity of regional pains (particularly those in the head, neck, shoulders and lower back) are a strong predictor of a person's overall pain rating.13 The muscles in these painful areas can feel tight, knotted and rope-like. Pressing on the firm, knotted region hurts and often causes the pain to shoot to other muscles when a myofascial trigger point is present.

Fatigue - This symptom can be one of the most incapacitating for people with fibromyalgia. Patients may feel as though their arms and legs are weighted down by concrete blocks and their bodies may be so drained of energy that every task is an effort.7

Memory and Concentration - Difficulty concentrating and retaining new information may seriously interfere with everyday mental tasks.14 This symptom is referred to as "fibro fog" and may hinder job opportunities. In particular, fibromyalgia patients have serious difficulty retaining new information if they are distracted.15

Sleep Disorders - Patients report trouble falling asleep and more importantly staying asleep, but the unrefreshing quality is what makes the disorder much worse than insomnia. Repeat arousals prevent patients from reaching deep, restorative sleep.16 As a result, the night is spent in "quasi-sleep" and patients wake up feeling as though they have been run over by a Mack truck. An overnight sleep study will likely show repeat arousals with bursts of awake-like brain activity occurring throughout the night, but a specific sleep disorder may not be identified.17

Exercise Difficulties - Moderate intensity exercise activates a powerful pain-relieving system in healthy people, but it makes the pain of fibromyalgia worse.18 This is why initiating an exercise program may make you achy and tired. However, if you do not exercise on a regular basis, the performance of normal daily living activities will start to cause more pain. Rather than give in to the increased pain sensitivity related to exercise, patients are advised to do mild exercise in short intervals (such as five minutes at a time) to keep the muscles fit while not over-taxing them. A study in Sweden revealed that half of the fibromyalgia patients found it impossible or difficult to climb stairs and a majority of patients could not run. Just standing for five minutes was extremely taxing to one-fourth of the patients.19

Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain and bloating, abdominal gas, and nausea represent symptoms commonly found in roughly 40 to 70 percent of fibromyalgia patients.20

Chronic Headaches - Recurrent migraine or tension headaches are experienced by 50 to 70 percent of fibromyalgia patients. Most headaches are rated as severe, occur at least two times per week, and often have a migraine component.21 Referred pain from myofascial trigger points in the shoulder, neck, and head muscles are suspected to be responsible for most tension-type headache and also play a role in migraines.22

Jaw Pain - Temporomandibular joint dysfunction causes tremendous jaw-related face and head pain and affects one-quarter of fibromyalgia patients. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.23

Other Common Symptoms - Non-cardiac chest pain, acid reflux, irregular heart beat or palpitations, shortness of breath, numbness and tingling sensations, the feeling of swollen extremities, chemical sensitivities, nasal congestion, premenstrual syndrome and painful periods, irritable bladder, interstitial cystitis, vulvodynia (vulvar pain), difficulty focusing eyes, dry or burning eyes and mouth, dizziness or feeling faint, profuse sweating, muscle weakness and balance issues can occur.24,25,26 Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, some foods, and often the medications that they are prescribed.27

Aggravating Factors - Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety, and over-exertion can all contribute to fibromyalgia symptom flare-ups.12
Fibromyalgia Quick Facts

* Affects 3 to 5 percent of the general population28
* Occurs in people of all ages, even children
* Men develop fibromyalgia too, although more women are diagnosed with it
* Symptoms are chronic but may fluctuate throughout the day
* Roughly one-quarter of people with fibromyalgia are work-disabled12

The general consensus here in Australia is that fibromyalgia is all in ones' head and that the sufferer is a malingerer. Certainly this exacerbates False Guilt and invites his cousin, Validation into the scene. Although I am aware of false guilt leading to me wanting to feel validated, I still succumb to it at times of prolonged flares such as this one I am experiencing at the moment.

I have *every* one of these symptoms, so I feel validated. So welcome Validation: hopefully he and his cousin won't be staying long!

© Glenys Robyn Hicks


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

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

Modifying the Proverbs 31 woman

The Proverbs 31 woman is an example of a godly wife. It’s not something we are going to be able to do all at once and for some of us, we may never accomplish all she did. But I believe emulating her example is a good thing. We have to have a goal. If you aim for nothing, you are always going to hit it.

I used to get up real early, about 4.30 to get my husband off to work. I would have my quiet time then before my 4 children would wake up.This worked for me when they were quite tiny too and I just carried it through. Until about 20 years ago when illness came in.

I don’t sleep well and wake up in lots of pain and I find if I try to get into the Word the fibromyalgia/Lupus brain fog makes it impossible to focus. I don’t glean much from the Word and my prayers are disjointed. I put on some praise and worship music and just thank the LORD for giving some sleep and so on. After a hot shower and breakfast, I can study the Word and pray better.

I think anyone with an illness or pregnant, or who has had a sleepless night with a sick child etc, has to be realistic and in tune with their body. She has to know what her own limitations are and modify what is an excellent goal to achieve it.My modified morning routine now works better for me. And let’s face it, any time is a good time to be in the Word! We all have to work out when it is best for us….then do it.

My time of choice would be early mornings though. But I have had to learn to modify things in order to achieve them. And later is better than never! I believe that for all of us women trying to live a godly life, the Proverbs 31 woman is a guide of what to strive for.

Even if we can’t achieve all she has done (and you will notice that she achieved this over seasons of her life- not all at once!), still our hearts will be in the right place. If women look at the whole picture with the view of doing it all NOW or not modifying it for themselves, they will most likely give up and not even try to emulate her example.

Sometimes there are unresolved heart issues that the LORD has to work through with some women who won’t even try to emulate the Proverbs 31 woman. Not even with modifications.

It may take some time until they are convinced that this holy calling in their lives is truly for their own good and contentment. Sometimes it takes a lot of washing with the Word before the soil of the world is cleared out of some women’s eyes. They just need some encouragement as God works in their life.

© Glenys Robyn Hicks

She will do him good and not evil all the days of her life. Proverbs 31:12