Tag: chronic fatigue

Creating Awareness?

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Creating “awareness” is so that people who might suffer the same condition know where to get help, and to educate others not to expect the impossible from you, now that they know what you’re fighting against.

Do others “create awareness” for the rest of their lives or do they ever sit down and say they’ve done their part?

I was diagnosed in 2023. I think know it’s time I retire. It was so major, having a name for symptoms that started in childhood and just got worse and worse. More importantly, it was a disease I’d never heard of. So I knew most of my people didn’t know of it either. If it had been common, I’d not have even begun with “awareness.” Those who are in my world don’t have AS nor its symptoms. And too many of those who are in my world find it very hard to be empathetic. To put themselves in my shoes. You’ll find an asinine comment like the following after I celebrated being able to work till later than normal, “Don’t forget, we also get tired.”

Ma’am, we’re fighting inflammation. We are always tired. We don’t get tired, we just get WORSE as the hours pass. And we’re fighting constant pain and stiffness in large bones. We’re fighting the conditions the disease has caused too. It’s very different to a very healthy person with only one child. If you can’t extend mercy and understanding, then awareness has not worked. You’re still unaware.

And so, my awareness campaign has stopped. It’s now left to those who ask specific questions to be aware and to leave me happily aware that the ‘campaign’ made a difference. One even remembered I am also fighting too, too early menopause yesterday!! That meant so much to me! That’s when I realised I could truly hang up my gloves. Those whose hearts are big enough, have retained all the information. I can count them on one hand, but .. there are people I can count! Some literally have NOBODY at all in their personal lives. I have some who check on me and remember what AS and other conditions do to me! Even when I’ve been silent for months about it.

My awareness creation has ended with the awareness that I am in some people’s minds. They’re aware. And they care. I am GRATEFUL.

What was the trigger for this post? This random image above that appeared on my wall, by Positively Rheumatoid. Fighting my pain and fatigue all day, every day, is part of my life; pretending all day that I’m not getting WORSE as the hours pass. I used to post when things changed, when I’d seen the rheumatologist… But one day when I celebrated working too much and for too long in the night, a very healthy person with only one child shared that they had done the same. It’s NOT the same. If they’d been aware, they’d have never compared their healthy body working late, with mine, which suffered badly the following day. Someone telling you with fatigue as a huge burden you and your pain are constantly fighting that “we also get tired” shows they understood nothing of the things they were to be aware of. Instead of celebrating that for once I was a bit more normal, they think it’s nothing. Purely because it’s nothing for them with their healthy bodies. Also because they didn’t gain from the awareness shared, what an inflammatory autoimmune disease is. And so, they helped shape future AS posts. And this blog helped too. And more the two sisters who ask the specifics are enough.

I’m in a global village and I’m thankful. I can also come across people far away who understand each symptom because they are living it. Again… I’m grateful.❤️

AS Today

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Still waiting. I see some movement on my app. Things that were approved in the background and calls to medical aid from a specialized pharmacy my current rheumy uses. A pharmacy I signed consent for to distribute the Cosentyx. So I’m hoping they will email me with good news soon! Pretty please.

Today… When you think you can’t feel worse and still survive, you do. You keep breathing, despite. You move even though your bones feel like they will split. Somehow, you keep living.

I was so excited reading of other women’s struggles with showering. Fatigue overwhelms us and we do it through sheer force. Some don’t shower daily. And others go shower only when the husband tells them they’re becoming a bit stinky. I’ve never reached the “Nope, not this week” stage, but there have been days I’ve wished I could just turn the water off without putting soap on face cloth. Or mornings I am even more tired than when I got out of bed- more tired half way through my shower than before I got up. I’m so relieved to know it’s not just me.

The one person who commented that she USED to feel like this is someone who has found the right biologic for her needs. Will I ever find one?

I was also grateful to read that many of us struggle with tight clothing. Or clothing that is skin tight. Like leggings, bras, waistbands… I prefer dresses over skirts because of that. It feels like my skin is being pressed hard. Like my clothing is painfully tight. Knowing others also prefer to be naked in summer (Well, not also because I don’t ever stay naked!), are looking for comfy bras for when out in public… Winter is hard with its need for layers. Will see. Maybe look for long long hoodie tops that are as long as long dresses, and wear tracksuits under them, instead of leggings, or track pants with skirts and petticoats. Way before my diagnosis I bought one top fromTruworths which was advertised as long but it only reached my knees. I know. Boring if you’re not living this discomfort! Sorry!

But again, I’m thankful. If we can’t even shower how am I teaching and smiling and planning and printing?? How am I making things happen every single day without collapsing from the sheer mental strain of keeping my body moving when it only wants to rest?

I wish I could share my suffering with my family. They’d really appreciate every grain of rice, every veggie burger if they knew how much effort it took.😅

But, I can’t! So, if you’re friends with an AS warrior and they never seem to want to go out, this could be why. Terribly painful bones, and/or a body that wants to collapse and feels like it’s carrying the weight of the world.

True Love Sees

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True love bears your burdens and is solicitous.

We bear each others’ burdens. My people know I worry about them just as much as they worry about me. We care equally for each other. I immerse myself in their problems and cheer for their victories. I love them deeply.

This angel above is in her 20’s in Malawi. Daughter of a church sister. Maybe two years ago she heard what I wasn’t hearing as I sent her a voice note and walked around my home. “Mom, why do you sound like you’ve been doing too much? You’re not breathing properly! Please stop! You need to rest!” That is love! She broke my heart recently when I asked her how she is, she answered vaguely if I remember correctly and then when I queried it, she said sadly, “Everybody I love is sick.” And that was before we knew my lungs were deteriorating. Her mother has a chronic leukemia that usually patients have to take lifelong chemo tablets for. Her close friend has heart problems. Major ones.

It was the fact that she picked up the breathlessness. And how I stupidly thought maybe it’s from walking too fast around the house.🤦🏾‍♀️

It’s this friend

She told me to stop an exercise by Juice and Toya because during the video as I spoke, I started coughing and became breathless. She told me to obey m the pulmonologist who had told me walking 3 times a week is ENOUGH exercise for me. (He didn’t know I cough and splutter for that workout. I need to try and talk for all my supposedly low impact workouts from now on. I hadn’t thought to try them all while talking to myself. I thought as long as I don’t cough it’s ok. There’s one I dumped because I became way too breathless and tired even without talking. I thought that should be my criteria) She said it out of concern as she watched, not knowing that it’s actually true advice from experts too.

As I said, we all share our problems. Life is not perfect and will never be perfect on this earth. Every day brings challenges we overcome, screaming children we try work with, another day with no job interview, heartbreak over children in their ministry who are neglected… But it seems sometimes, that love is one- sided.

I shared once how my husband was bemused and slightly disapproving that I was doing housework late at night. After all, I had been caring for our family of eight during the day too. And we knew I had AS. Some commented that they too also work till at night.

I reminded them that the context was that AS patients should be resting and not working all day and night. One lady totally got it. The other very healthy, younger, less than three children who sometimes go to relatives so she gets to rest from parenting (If I said how few children she has, people might recognise her so I won’t) told me, “Don’t forget, we also get tired.”

That was when I realised that I bore her burdens, but she had no desire to take in anything I’d said. We AS warriors and others with chronic issues (especially us without treatment yet) wake up already tired! It only gets worse during the day. And now I know too that my lung deteriorating means my the lack of enough oxygen reaching my blood which also causes fatigue. Again, I begin the day tired. I just wanted to be grateful that despite my problems, I’d worked too much more than usual and was happy that the day wasn’t as bad as usual. Why can’t we rejoice for each other? Your A might be better than my A if you’d always been a D student and I’d ever been an A student! It’s not the A, it’s you doing phenomenally for YOU. I celebrate that for my people. And my people celebrate it for me. My true friend above even said that she knows that if I were well, I’d do even more. THAT meant a lot. This stupid disease is holding us back a lot. (As do many other diseases!💔)

I had a bad night. Woke up and emailed my rheumatologist about pain relief-the joint injections and if there’s anything we can do my shoulder and elbow. My chest has been weird and I coughed a lot. We are given sleeping tablets that also allegedly reduce some pain so that we can sleep through the AS pain at night but nope, it’s been no match for the shoulder, elbow and last night, SI joint pain. And so, my posts will reflect that. It’s not all sunshine and roses. Finally gave up trying to sleep at 3am. We wake up tired not only from the disease, but from pain-filled nights. And we gotta keep parenting and working. And that’s ok. Everyone has trials. This is my blog, and my trial.😅

I’m still grateful that my little ones miss the struggle. My very talkative four year old asks to sit on my lap for story time. It HURTS even more. But I do it anyway. (Though I try avoid it happening daily.)

Today, I just wanted to thank those who were worried before I realised I really did have something to worry about. The ones who worry today-not only about me, but about all the challenges each of my children have. Who wonder with me who can solve each problem…Like one child (not the four year olds) with a terribly leaking bladder who doesn’t want to wear a pull up but is causing the bed for lots of washing as the ammonia smell is strong on clothing worn. I need to share that. It felt great to see a post on lack of bladder control by an aunt and to see other aunts agreeing that they too can’t control their bladder for various reasons and felt validated. I want to validate any mother in that situation. Not forgetting my shirt size angel who has outgrown baby diapers and is nowhere close to being potty trained. I see parents in my special needs groups having to buy size small adult diapers for their children, teens. We’re in this together, parent, I appreciate you. This road would be harder without you.

Still Keeping It Real

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I don’t thank Him EVERY day. Today, I’m out of options and solutions and hope. Today, I am done. I am tired. I am sad. Today, I am fearful, anxious, worn and weary. Today, I am not feeling anything close to thankful, only desperate.

Truth is, it CAN be worse. But, my goodness, it could be better too! And so today, I will recognise that acknowledging that things could be easier is not wrong. Asking God why He won’t make any aspect easier is a very fair question.

There will be days when we just sink. Distressed, upset, faking the smile that adorns our faces. Patient when feeling impatient with God. Where is the help You promised? Where is the strength You said you’d provide for each day? Because right now, today…I am weak.

I honestly despised the light, trivial, thoughtless happy new year messages I received this year. It was like the sender put no through into it at all. How can this be a great year when none of my years have ever been great, pray tell? How can I be happy – the way it’s meant in that phrase- when every day is painful? Physically and emotionally?

I’m also mindful of those who didn’t send such light, pithy messages. The ones who wished I “get better”…Umm, I have an incurable disease. Keep your miracle hopes to yourself . I know they didn’t mean, “I hope this year brings treatment that brings relief.” I know they actually have no idea what AS and her friends have done to me and continue to do to me. Just like the very same people have no cooking clue how hectic my parenting and educating journey is.

I don’t need messages, I need help. And I don’t know where to find it.

I need affordable special needs educators for all three of my younger children. There aren’t any.

I need my mommy dragging non speaking angel to stop dragging me and stop seeing food when she sees me. It gets in the way of our ‘learning’ and our play and my chores and my interactions with the other kiddies. Will it ever happen?

I need to figure out how to help my middle two who it turns out have words, but have no idea what the words mean. How do you even communicate when you have to ask them to re-phrase just in case what they are passing on isn’t what they intend to share?

Where is the help? I wish we were living in my book. Lol. There’s a foster book I was reading based in the UK . The foster child got the child one on one help via a teaching assistant or aide that sat through each lesson with the child and helped that one child. Ha! What are the chances HERE? That would definitely be something I’d use if I were there. (And a foster mom. I don’t know if the State provides the services to normal families.)

My body pain is increasing. I feel sick – nausea etc (Finished my antibiotics tests and REFUSE to take more!) I’m done . I want to sleep. I want to rest. I want to relax.

While I wait for that opportunity. I’ll rejoice in having hung half the laundry. It could have been none of it. I’ll be glad I did something educational with my talking children who do engage with me. I will rejoice over how once during a very long puzzle play, my non talking angel told me “two!” as she put the number 2 in the correct slot. I’ll be happy in how she now does turn the pieces around, only giving up a few times and asking me (Pulling my hand while holding the piece and directing me to the right hole!!)

I can not thank God for our challenges as they are just too overwhelming. But I’ll thank Him for other things. I hope He sees the above paragraph because I’m too sad to talk ‘happy’ right now. Maybe later 😅

And He won’t mind waiting.

A Better Start

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The Psalms tell us to tell of God’s goodness. I don’t know if He had a hand in it, or if the flare is over, but today I had a MUCH better start to my day, and I’m HAPPY.

I usually wake up stiff, fatigued, bone tired fatigued, exhausted, very stiff (Yes, I know!) and in excruciating pain. Pain so bad I can’t move until I have pain tablets. Well, I move. But I can’t be active fully and my normal self till after the second dose of pain tablets -about six tablets spaced out over two hours. By the way, I’ve found that my shoulders are stressed or tense. They’re raised up. I have to keep telling my shoulders to relax. Is that stress or is that part of the disease? I keep getting scared I’ll fuse with my shoulders up. It’s kind of a weird feeling that I can’t really explain. Maybe it’s from ‘holding’ myself upright and keeping myself going while in pain? That tension??

Anyway, back to topic. I woke up and was able to do my Bible study. I was able to clean three large mirrors. I dusted a shelf. Then re-dusted it later when I realised the difference it makes when I clean with my glasses ON🤣and was able to sort out two loads of laundry. That’s laundry for EIGHT people! And I did all that before 6am!!

I finally needed the pain meds at 6:30am when wow, I had to go lie down quickly. Which is where I’m blogging from. But man, this was a reprieve! I got to be useful way earlier and without having to handle extreme pain and exhaustion.

It was a good 45 minutes. I hope one day to have days and months where I don’t need pain tablets to survive. Where I don’t work a bit then collapse and feel achy and broken and like my joints are grating on each other as has happened now, wondering how I’ll survive the rest of the day.

Keeping hope alive. And if God gave me those 45 minutes nice and early for a change…Thank You🙏🏾