BOTTOM LINE: M’ASO YƐ DEN

So I’m home, and going to have to stay home this whole week. I was halfway through telling my eldest sister that I’d be going back to work tomorrow when she cut through with a “hey, hey, hey, you are giving yourself the week! GIVE. YOURSELF. THE. WEEK. ahba!!” 

Rewind to last Friday. It was a normal morning…ok not so normal morning but I will rewind again to explain. I got to work feeling okay; I even bought waakye on my way there so I was really set for the morning. I settled in, read up on some devotionals I hadn’t caught up with yet and then I started feeling pain in my chest. I got up an stretched a bit then sat back down, but moment I sat my lower abdomen started cramping too. I was the only one in so I locked up, went to the bathroom, thinking it was some stomach bug that had got me. By the time I came out of the bathroom, my entire body was screaming in pain and I’d broken out in cold sweat. I sent a message on my work whatsapp page asking anyone to get me some tramadol on their way and headed back to the bathroom when the tummy cramps started again. I sat there on the toilet seat taking in deep breaths till I felt better again, then I stepped back out. When I got back, one of my colleagues had arrived and had already set up behind his desk. He asked what was going on “Are you in pain?” He asked. “Yup!” I responded, and made my way back to my seat. The moment I sat, pain pretty much exploded everywhere in my body and breathing became hard. I put my knees up to my chest in the seat, it made things worse. I put my legs on my table, even worse. I leaned forward, put my head on the table…not working. I was sweating even more. WHERE IS THE DAMN TRAMADOL! I checked my phone and everyone said they’d passed the pharmacy and were already on campus.

No matter how I tried to adjust myself in my seat, the pain just got worse and I thought my eyeballs might roll all the way up my brain. I hadn’t seen my Dad’s car earlier so I didn’t think he was at work, so I texted my sister “Are you on campus? I feel like I’m going to pass out.” By then I didn’t know what else to do, or what exactly I was doing next, but I stood. My colleague asked if I was okay and I shook my head. “I think I’m going to pass out.” He was all the way in the back of the room, and I was all the way in the front, and so by the time he was halfway up to where I was, I was down on all fours hitting the floor with my open palm and gasping. “Should I get you to the hospital? Do you want to lie down?” Now I don’t know if he was expecting me to be able to properly communicate with him, but that’s how far I remember. Next thing I knew, I was on my side on the floor by my desk, and my Dad was shaking my shoulder, calling my name. I opened my eyes, and there were his shoes. I had tears on my face. He kept shaking my left shoulder telling me to get up. He grabbed me under my arms, held me up and half-carried, half-dragged me to my seat. Now that I can properly think back, I remember my colleague was just standing there. It must have been shock. Poor Theo. My dad then gave me some water to drink and asked me what happened. I was exhausted, talking was going to be hard, but I summed it up quite briefly for him. The pain came right back after that and I threw all my home training out the window and started crying shamelessly. I remembered I’d texted my sister so I mentioned that to my dad and he called her. They’d sent my cousin to come get me, and she soon got there. My dad debated for a bit about them taking me to Legon Hospital or somewhere else, but me of all people, I didn’t even care. I just needed to not die, or die faster than I was doing.

Anyway, so they rushed to Legon hospital. And truth be told, it was either I was too bad a shape to care, or their service really has improved. I think in about five minutes after arrival, I was in the emergency unit, had been given pain shots and I had an IV bag going. Wheeew, diee another day! When I had stabilized, I was moved into the emergency ward proper. By then, my fam had told the doctor that had attended to me about my pre-existing condition. He came to me and explained that they were going to detain me and run some tests to be sure the flare up had not been caused by some infection, or that there was nothing else going on. The tests came back clean. No infections. My Hb count was okay, no malaria parasites, no pregnancy (I remember the doctor pressing down on my abdomen when I was brought in earlier asking “is there any chance you could be pregnant right now? Look at me, I need you to be straight with me. Is there any chance you could be pregnant?) LOL OKAYYY RELAAX DOC! LOL! 

Issa No. 

Then he asked. “Have you been stressing yourself? You know your condition. You know how stress can trigger a crisis.” I nodded. “Well, yes I was a little stressed from work.” I said, and he went on to tell me how needful it was for me to avoid stress and how it clearly was stress that had brought the flare up that had landed me there.

Now let us rewind to the Thursday before that Friday the 13th. I was on my way home with my sister. I was in the front seat with my baby niece, my laptop bag was leaning against my seat on the floor in front of me. A few minutes away from home I noticed my baby niece’s diaper had shifted and she’d peed straight into my laptop bag, onto my laptop. Initially I was pretty calm. Let’s get home, let’s get home…We get home, I grab my laptop, dash inside, flip it open, turn it on, and it is humming like a hair dryer on full blast, but not responding. The notification lights flicker and then go off, and this laptop is lying there looking finished on me. I started pacing my room like I had just given CPR to a human being and it wasn’t working. My stomach was doing somersaults and I just kept going on “I can’t…I can’t…I can’t…No No No, Not this time, Lord. No No No. I have deadlines, God. I am already battling anxiety with these tasks and my to-do list, God, No No No. I can’t right now.” Within minutes I was so worked up and stressed, and in such a foul mood, I ended up exchanging heated words with my sister, and turning in early (although I did not sleep much). STRESS!

So when the doctor came in and pointed out the stress bit, I knew very well that I had brought on that flare up. It may not have been the sole contributor, but the pre-existing anxiety that I should have nipped in the bud was there, the sharp change in weather had not helped much, my mood swings had not helped much, and that laptop incident was the domino that fell. Now I am sitting here, TYPING ON THE VERY SAME LAPTOP – yes, cos it got fixed – right! perfect, Amma…you went and had a whooole panic attack, didn’t you? 

Bottom line is, M’aso yɛ den. My sister, with whom I had the heated exchange, had tried to get me to calm down and not get worked up so easily over things that I can barely help in the moment. I did not listen. I was bent on flying head on into stress, it seems. I acknowledge that perhaps this battle with anxiety and panic attacks, etc. are the comorbidities that research shows often come with chronic conditions/disorders/diseases. But at the same time, I acknowledge that I need to make a conscious effort to take my own advice, as well as advice from loved ones, like my sister and the rest of the fam. Lol, and from you too, Dan 😉 I need to get help, when I need it. I believe God has made the provision. I can’t pray and fold my arms afterwards. I need to act.

So yes, I am going to stay put and make the best out of this time off work. I am going to take better care of myself. No way I’m putting myself through that again. I needed that wake up call.

Now to operation HAKUNA, MATATA.

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MIGRAINE PRODROME AND ANXIETY: Bad Time for Bad Times.

 

Photo credit: headwisewoman.blogspot.com

 

When I’m going to be hit by a migraine, I know it. Not many migraine sufferers, I read, experience this prodrome stage. I don’t know if I’m glad I go through this premonitory phase or not, because it is not a pretty phase, but then I do not know if I want a full-blown migraine to just spring up on me either. So perhaps I’d take the warning phase.

The thing about experiencing one thing over a long period of time, is that you learn, quite a lot, over that time. You (whether you wanted to or not) become sort of an expert; you understand how some things work in that particular domain, in-depth. The prodromal or premonitory phase of a migraine is the few hours or days before a full-blown migraine hits, and it comes with symptoms like: Fatigue, sensitivity to light, sound and smell, cognitive challenges, muscle stiffness (for me, in my neck and down my shoulders to my arms, aphasia (difficulty in speaking and reading – because, see I can’t think straight! I am not even paying attention.) nausea (coming over you in mammoth-sized waves. Get into a car, and it’s at its worst, because, motion. ugh), difficulty in sleeping, general irritability (because are you expecting all of this to make any person jolly?).

Recently, I read about how migraine prodromes, for some people, come with depression as well. This weekend was an eye-opener for me in this regard. Friday was hectic for me. By the time I got home, I was drained. I was in a lot of pain (never mind that I’d just had a physiotherapy session hours back), and just emotionally flat. I did not sleep well. Or much. When Saturday came, I knew I was having migraine premonitions. My neck was already hurting, the nausea wouldn’t even permit me to drink water, I couldn’t stand any sound at all, I was tired upon waking. And the frustrating bit was, I was already experiencing a flare in general pains from the day before, so a girl really did not need a migraine prodrome. I pretty much ignored it all day and did the best I could with work I needed to get done.

By night time, the aura had set in; my feet were numb. The dull pounding that always starts from my clavicles up my neck and into my head had began. The room had to be dark, and silent. My phone’s screen had to be its dimmest.  It was the umpteenth time I was having such symptoms. I knew what it meant. And knowing did not help me. “Not tomorrow, please” I kept saying over and over. Then it hit me. Are these not making up a recipe for depression? The ongoing symptoms compelling you to isolate yourself in a dark room, anticipating the onset of the full-blown deal. At times when I had to get out of bed to use the bathroom, I could almost not help the zombie-mode. It seemed to have come by default. I took small, slow steps. No sharp movements, no hasty movements, no  unnecessary movements of my head and deep but careful breathing. I became conscious of this and tried to relax. Anxiety had set in. It was not surprising.

What would have been best to do, was to shut down and try to enjoy the quiet and the darkness. But there was an online literary discussion I did not want to miss because of my state, and then there was an ongoing, important conversation I could not just sign out of. So I let the dull light from the phone torment me for another two hours, and then the important conversation took a heartbreaking turn and I wept. So about 40 minutes past midnight, I was not just having a bad time, I was having a bad time at a very bad time.

 So then by Sunday Morning…HELLOOOO ADAM&EVE OF ALL MIGRAINES;

 This was me:

Girl was not about to move an inch. Girl couldn’t, even if she wanted to. It lasted the entire day, and by Sunday night, I was exhausted, achy and stiff, and definitely not jolly. Thinking of the week ahead, and knowing it will take a few more hours to recover from the rough weekend,  I made efforts to lighten my mood. My baby niece was of great help, as usual. Then I prayed, I breathed. I promised myself that the week will be good, and I turned in for the night.

And so although I woke up tired, I was ready for the week. I acknowledged all the lessons learned. To sum it;

Some times are bad times for bad times. And if you can help it, do not have bad times at such times.

Cheers!

JOURNALING, CHRISTMAS CAROLS, A PREGNANCY PILLOW, & LOVE.

 

We all have those things that make for a great day/night of relaxing, don’t we? We may have a few combinations that make our list. A soak in a hot foaming tub, slow music and wine? A dark room, fresh air and silence? A walk on the beach at dawn with the love of your life? Junk food in bed and a movie marathon?

Trying to get a comfortable position to sleep in had been tough for the past two weeks or more; partly because it hurt to lie down (or stand or sit for that matter), and partly because I worry too much about not being comfortable in the first place. It had to stop somewhere. I had to find a way to be comfortable and I had to stop worrying. I needed that perfect combination, and last night was the miracle!

The thought to find myself a pregnancy pillow was a eureka moment on Tuesday morning, and so by evening, after my big Sis gifted me hers and I lodged my aching body in it, supporting with two more regular pillows, the bliss made me tear up. Blessed natal cushions! But it wasn’t quite it.

Introducing the preg. pillow 🙂

 

And so last night, while enjoying the plushness, I started to play Christmas carols and took out one of my journals to read recent notes I’d made. Although I was still in pain and perhaps if I had stopped everything I was doing, my mood would have taken a dive, I felt myself relax. The combination was piecing together beautifully.

Now for the cherry on top; love. In about half an hour, that humming feeling that settles on me when there is a break from bad bad pain, settled on me and I was all giddy inside. The love sickness last night was like being sick and getting re-infected with the same bug and getting sicker. Ha! “Christmas carols, a pregnancy pillow and love,” I scribbled in my birdie journal before putting it way, smiling sheepishly like a love-struck idiot (which I am).

I am a worry expert, (I am only recently acknowledging this), but thank God for loved ones and the Holy Spirit and the miracle of perfect de-stress combos like this. I know how hard it is to settle when there are things to legitimately worry about; when you are in real pain and you’re tired of it; when you honestly cannot sleep and your natural inclination is to snap at everyone and be petty and cry and wallow in the pity pond. But this week (and especially last night) has taught me that the perfect combo exists and making some effort to find it is rewarding.

Let me play Mom at this point and add that for health reasons, it’d be best to find a healthy combo (especially if you’re already dealing with one health condition or another, be it chronic or otherwise). Let me scroll back up now and cross out that ‘junk food’ bit before I  go on. 

So go on and piece together that perfect combo, share some with me if you don’t mind. Fall in love, buy a pregnancy pillow and ignore all the stares you may get (haha!), listen to christmas carols in June and turn the volume up. Put off all the lights and dance naked off-beat. Blackmail your beloved into staying up late with you when you can’t sleep. Sing old spiritual songs like “Swing Low, Sweet Chariot” with all the drama you can mimic. Pray. Study the Bible. Journal. Read old entries.Binge-watch one whole season of your favorite series and cry for silly reasons. Rant to a poor unsuspecting friend and make them feel guilty small for dawging you. Make it happen. Make it happen!

To whom it concerns 😉

BLASTED COLD!

By the end of my first year of post-grad studies, all my mates know my stand where air conditioning is concerned. God knows how many times I fought in that room because it was just too cold. And up until now, I still don’t get why we can’t just turn it off and let the breeze from outside in, it’s not hot anyway, is it? NO! But alas, I had to suffer through, fight through, seize the remote control sometimes, and turn it off without asking, cos it was becoming just too much! But hey..lol! They’ve got used to me now, bless their hearts! What I’m trying to say is, cold is my enemy!

And now, my body has been reacting so violently to the change in weather, it is NOT funny. This week, I had one of the worst ever flare ups i have ever experienced, and I, together with my able partner in love (*wink wink*), figured out almost immediately that it must be the layered stress my body is going through – the stress of the cold, the stress of being frustrated about the cold, and the stress of dealing with all that.

Sometimes it gets very animated, describing what type of pain I’m feeling at any point in time. Thing is, it is not the same every time…sometimes a mere touch kills me, sometimes it’s like drilling works in every joint, sometimes it’s like the muscles are being shaved off my bones, like a car crash in which you get mashed up with the metal and you’re not dead yet, so you feel all the pain…no, really, there is no way to describe them! Sometimes, it is a combination of all the types, and that…that…that!

I have read about how bad it gets for FMS sufferers in parts of the world that have winter periods. It offsets a flare up and leaves some wheelchair-bound for weeks! It is because of how sensitive our bodies are, you see. Light, sound, smell, touch…

“A study published in the journal, Pain Research and Treatment,suggests that changes in brain chemistry among people with fibromyalgia may be linked to sensitivity to stimuli such as sound and smell. Imaging studies have provided visual depictions of this altered response to sensations. In some respects, the brains of people with fibromyalgia may be hyper-responsive to even the possibility of pain or discomfort.”

credit: everydayhealth.com

And that is why our bodies react to changes in weather that way. A change in weather means a change in temperature – too hot or too cold means trouble, a violent reaction that stresses the body, starting a vicious cycle that brings on the ancestor of all flare ups! Blasted cold!

I am learning, though. I made a list of stuff I need to buy today, and a pair of socks was up on the list. Aside all the cardigans and shawls I own and use shamelessly, a girl has got to invest in pairs of socks as well, cos when the cold gets my feet, I’m toast! Or is it Popsicle rather? Ha!

For real….blasted cold!

 

 

IBS AND ELIMINATION DIET

A few days ago one sentence almost made me break down and cry just because it was so damn accurate, and I could relate so much, the relief it brought was..oh dear God! Here, let me say it again –

“IBS sucks…It will swing over to constipation for a while, then it will swing over to diarrhoea for a while and usually lives in some strange land in between, where I never feel like things are fully cleared.”

Girrrrllll, you know it! You know it! 

 

I don’t know which is worse, the constipation, the runny tummy, or an absolutely indecisive gut! Since all of last week till now, I have suffered that middle ground, and IT IS NOT PLEASANT! I did a bit of reading to find out why IBS comes with fibromyalgia, and it made sense. Fibro is traumatic enough for the body to go through a level of stress that disrupts the brain-gut axis communication. So, aside having to do a trigger elimination for my fibro flares, at the onset of IBS, I have got to get on an elimination diet to aid my gut so it’s a bit sensible.

I’d have to choose between having to gulp down diagelates and antacids and antiflatulence (*cries in gas*) and cramp relievers, and avoiding them altogether by eating just what comforts my tummy and keeps me healthy.

I choose pizza 😦

 

It is good to listen to the body and know how it fares after ingesting any fluid or solid food. Although IBS also has no cure, and it is frustrating to have to deal with a medley of chronic conditions, I have to be focused on my body’s communication with myself. My body needs me, basically. I have to keep up with the changes.

An elimination diet is when you chart what you eat, and then start to eliminate all foods that trigger an allergy or some discomfort (in my case IBS), until all triggers are out of your diet, then you start to reintroduce them one by one to test if you get that trigger again. If you do, then that food is completely off your diet now. It is a very involving procedure that needs discipline and commitment. Chale!

Before recently, I was okay with gums. I chewed gums and everything was alright. But now…five seconds in, and I’m belching like a volcano that’s freshly erupted. So there goes gum. Next is milk. I am not too sure yet if milk has to go, because I have not really been able to point a finger on the effect of it. But milk is going off for now, just in case. Since this is a very new project, I have just these two on my eliminated list. Hopefully, I will be able to reduce the occurrence of the IBS symptoms, and have happier bowels. Cos, really, it is not a joking distin. You spend so much time on the water closet, and you can’t even read (which would have been a plus), because all your focus is on either pushing as hard as you can while giving yourself motivational speeches in your head and doing lamaze breathing, or writhing in pain, feeling as liquid as your bowels, Lord have mercy!

One other thing is to take in vitamins that help. One that I have learned of is magnesium. Magnesium deficiency triggers not just IBS symptoms, but some FMS symptoms as well. That is something to know.

So now I’m thinking pumpkin pie, what do you say??

Anyway, this is it! The elimination diet has begun, and I know it’s not going to be easy, but fraternizing with the potty is not a joy either, you have no idea…or maybe you do?

Also, such a diet is good not just for people like me, but for everyone, really. Eating healthy helps your skin, hair, bones, and general physical well-being. Stay fit!

 

 

LET YOUR VOICE BE HEARD: Fibromyalgia Awareness.

Today is #FibromyalgiaAwarenessDay and it seemed as if my body wanted to remind me in detail what this day means to me, and how much more we need to speak out about it, push for awareness, and eventually a cure.

Yesterday, I first did some good ranting on student challenges for people like me (you can read it here) and then went on another dawn time rant that I was sure I’d probably regret come this morning. But…I do not regret it. Yes, last night my emotions were raw, I needed a good cry..I was tired of how bad I was feeling, and really close to down flat. I had written an exam in the morning, and before the paper I was already stiff and achy.

This was me that morning

I didn’t want to go anywhere, cos moving was painful as hell. It was a two-hour paper, questions demanding lots of writing, and the joints in my fingers hurt, even the muscles in there were tight, my nerves were tingly and beginning to burn, and I was so nauseous. I had to finish the paper. Bless God, the questions were all questions I could comfortably answer.

 

After the paper, I decided to take a walk, cos my muscles all over were painfully stiff, pins and needles in my feet, numbness. I thought to take a slow-paced walk, perhaps to improve blood circulation. I did, and after 30 minutes I was back in my Institute running a madly high temperature. After about a minute my body temp dropped to very low suddenly, I broke out in cold sweat, and yes, that dramatically, my head exploded in pain. Half my head (the left side), down to my jaw, ear, neck, throat area. The temperature kept fluctuating from one end of the spectrum to another like that, and I thought I was going to pass out. I had to get myself home. When I finally laid in bed, I broke down and cried, and for the rest of the night I remained on that emotional low, threatening to sink even deeper down. Today, I’m much better, praise God! At least the migraine packed up and left just around 10am.

Enough of the complaints.

Why is this campaign necessary? Well, for one, read my article from yesterday (I shared the link earlier). The symptoms of fibromyalgia are a long long list…

And many more!

I have done a lot of talking today about all of this. All I want to say is #MakeFibromyalgiaVisible #WeNeedACure

Cheers!

UTERUS FOR OCCASIONAL LEASE

This has been me all day

I woke up so stiff and exhausted and in mad pain, the first question I asked myself was “what happened to all the unwinding I did yesterday!?” (I was out of Accra with the fam, and it was very relaxing). The long weekend was over, and the day’s to-do list stared at me. I ate something real quick, took my meds, and laid back down for a bit, nothing. It felt like my muscles were being sawed open, I was so dizzy, and soon it felt like my sawed off muscles sagged in my skin, leaving my skin so sensitive to touch.

I was getting desperate

 

Nope, meds did nothing, but I still managed to drag myself out of the house, and the heat almost made me cry, as it added to all the discomfort. I was glad to finally settle in one place, with air conditioning (thank God!). It wasn’t till after two that I was able to eat a bit again, why? because…nausea. I had wanted some jollof rice, but that is sold all the way upstairs, and the thought of that journey threatened my spoons, so I settled for fried yams, which was right down there, a 20m walk. Thankfully, the migraine subsided, the sawing reduced to lesser stabs, leaving the stiffness (I’m stiff down to my toes), and fatigue. It was not till early evening that it hit me what was happening! A premenstrual flare up! Learning to journal specifically for fibromyalgia, has helped me keep track of my symptoms, one by one, noting all the triggers, so I can avoid flare ups as best as I can. In doing so, I soon identified my periods as flare-up triggers; flare ups that come 3 or 4 days to my period, and stays throughout my period. Every month, it keeps me home and unable to function at all, for at least one day. The rest of the days, I look like a druggie in need of emergency detoxification and rehab right after.

 

The balancing act of identifying triggers, avoiding them, and then finding things that bring symptomatic relief (like long healing hugs 😉 to whom it may concern) and making such a regular, is crucial. I’ve been trying hard to avoid stress by worrying less or not worrying at all, pacing my physical activities, eating well and healthy, doing breathing exercises, a few stretches, offloading my plate, laughing more, loving more, and taking things a day at a time. BUT. HOW. DO. I. AVOID. MY. PERIOD!? Please, don’t tell me to go get pregnant, let’s be serious! (fix appropriate emoji here) you think pregnancy is a joke? More so, you think pregnancy with fibromyalgia is a joke? Hmph!

 

People with fibromyalgia have 3 times the amount of Substance P in their bodies than do normal people. Substance P is the vehicle that carries pain stimuli to the brain. The brain may also interpret the pain improperly and respond inappropriately. What might be experienced as a “tickle”, itch or annoyance normally – is often experienced as pain in those who suffer with FMS (Fibromyalgia Syndrome). There are often more pain receptors in FMSers, therefore pain is magnified.

Also, PMS (premenstrual syndrome) is known to increase a woman’s stress levels, and we all know what kind of combo stress and fibromyalgia is, so really, this period period (no, that’s not an error), is a very someway distin (not an error either), and one must to avoid it! (not an error again…relax, I’m not having cognitive challenges).

If a regular girl wishes with all her heart she could avoid periods, detach her uterus during that time of the month, fall in a coma (lol, trust me) during her period, because PMS and dysmenorrhea are real, then…

nah chale, the end. gotta psyche myself for the journey home.

 

 

 

 

DEAR STRESS,

 

The last time I saw Dr. Amissah-Arthur at the Rheumatology Clinic (KBTH), she was all smiles as she carried on with my physical exam; “what’s been destressing you?” she asked. “The last time, you wouldn’t even let me touch you!” We both laughed. Yup, that was how much pain I was in that last time – the “i’d rather not wear clothes today” kinda pain.

One of the very first things I learned about this condition was to avoid stress – eliminate as much of it as possible, from my life. They trigger flare ups like nobody’s business. And a flare up is a temporary increase in the number and/or intensity of symptoms. Worsening pain and fatigue are generally the first two symptoms noticed in a fibro-flare. But other symptoms like poor sleep, increased cognitive dysfunction and digestive disturbances are often experienced as well. No one will tell you to avoid stress, you will start avoiding it yourself! But truth is, that is some hard, hard something to do, trust me. There are too many things in this our Ghana that can stress a woman out! Everything is stressful. Plus, I’m a postgrad student as well…LOL! See?…stress! Managing it literally means conditioning my mind to block all of the stress. Over the months I have tried to manage it, both physical and emotional, as much as I can…well, until this morning.

Trying to retrieve my airtime from Airtel had me calling customer-care more than once, and ranting on my timeline, really stressed out by the fact that this is a problem that should have been rectified in just five minutes, or less!! Thing is, I didn’t know how much it had stressed me till the pain in my legs shot up and very soon I couldn’t decide whether to place my pillow (yes, the one I carried permanently to my spot in class) on the seat, and sit on it (cos my pelvic bone, ass, hips all hurt), put it on the table and place my head on it (cos this migraine is not joking, and my neck…let me not talk plenty), or use it to cushion my back. It is currently cushioning my back. Cos the pain I am going through now, don’t ask me to describe it, but I just know this flare up is cos I let myself get stressed. ugh!

Perhaps the best thing to do is to know it when you’re getting stressed before it graduates to a flare up…I didn’t see this one coming, I should have ignored their crappy selves. Why, the 0% I had in my I.A last week koraa didn’t even stress me! Why did I let this?? Or is this post-stress? LOL! Oh dear me. HOW DOES ONE AVOID STRESS?! WHY IS THIS, OF ALL THINGS IN THE WORLD, A MAJOR TRIGGER! *breathe* Sometimes it comes from nowhere and knocks you out, and you’re left spending two hours to type a blog post that could have taken minutes. -_-

Anyway, this post is an attempt to destress (*sigh*), and I think it’s working kakra (just remembering the 0% has cut it down by a quarter, I must admit).

So here’s to you, dear stress,

We are not friends. Everything has the potential of bringing you on, yes, that’s the fact of the matter (Cos right now, trying to massage myself koraa no…) but WE ARE NOT FRIENDS, okay? Please, and thank you. 

Seriously, 

DIE! 

I’m hungry too…

STRESS!!!

ACCEPTANCE IS NOT RESIGNATION

The thought of commuting home today was enough to drain me of my remaining barely-enough spoons (look up the spoon theory).  In fact, since last week I have been feeling my body battle a flare up, and when I woke this morning it was as clear as the gloomy weather (😩) that a flare was on.

Did I say “when I woke”? More like, when I got out of bed, cos “woke” implies sleep, and thanks to restless legs and grand-scale nausea, I mooned the ceiling till day break.

It had been raining all dawn, I was cold to the marrow, the pain in and all over my body was the ‘been-in-a-fatal-car-crash’ kind, and everything screamed “sleep!”. I proceeded to throw a mini-tantrum up in my head, not ready to make the choice of staying home, or heading out, seeing it was going to be a packed day. It was time, yet again, to give myself a talk. Today, it was a longer talk, and I understood the difference between Acceptance  and Resignation.

Coming to terms with what is, has not been easy. You first face denial, then when you move from there and ‘accept’ what is, there comes a genuine struggle between your need for a solid support system (at least that one God-sent person that is your personal person) and the allure of solitude and silence. During flare-ups when all the symptoms are multiplied a million and one times, you face the healthy acceptance-versus-resignation struggle. Do I stay here in bed and mope or feel sorry for myself, wishing I were dead, or do I weigh things? My first choice was to settle for that resignation that plunges me neck deep in a flooded pity-party, but ‘normalcy’ stood questioning me; “how can you manage today? Any Ideas?”

An hour and half later, this was me walking down the corridor to class

I got there about 15 minutes before my first class, fished out my pillow from the storage spaces in the back of the class, finished the rest of my Tetley decaf tea, and made myself as comfortable as the setting could afford, as the class started. Although on a no-flare day class would have been much better, making the best of the situation gave me at least 50% and not zero, of what went on. Taking my meds, consciously pacing myself, napping as and when, and keeping my water intake going nicely, helped me meet some deadlines I had today. Also, interracting with my new family – The Rheusolute Support Group (@trighana) and allowing myself to experience positivity, lit up the day a bit more. Later in the day, I soaked up some music, studied the Word, and spent some online time with someone special.

Acceptance means knowing “I am not like the perfectly healthy person” and that “I need to listen to my body a lot closely, and make the best out of potentially terrible days.” It means being true to my capacities, and not pushing myself overboard. It means being optimistic about more good days, and an everyday -goodday nearest future. It means taking my meds, eating well, spending time with people who are healthy for me, laughing a lot, loving a lot.

Acceptance is a pat on the back, like now, being back home from a long day of managing a flare up and still experiencing a flare up, yet glad I could get some work done, no matter how small. It is not a growing coldness, nor is it a constant bemoaning. It is a one-day-at-a-time grace-filled living, a pillow in the class, your sweetheart’s healing hug, a hearty laughter in spite of yourself, and hope for another day.

There were reasons why I had to brave through today…there’s a long weekend ahead, and I intend to kick this flareup in the butt with a comprehensive plan, which is this;

And it shall be executed.

Nope, acceptance is not resignation!

Happy holidays!

STICKY NOTES & FUZZY BRAINS

to publish this, at least!

I just ripped off two sticky notes from the bare wall of my study space, balled them up and trashed them. It means what was on there has been done. Later this evening, sticky notes will go up all over the wall, to remind me of stuff to do in the coming week. This may sound like what has been me, usually, but no…it is a new development.

When I was younger, I was the go-to-girl for all birthdays and anniversaries in the family. I remembered everything to the smallest detail. Growing up, it translated into other things, some very unpleasant, all linked to how retentive my memory was. Over the years, something had been happening that I only just realized. I put a lot of faith in ‘the power of my mind,’ I took a little too much pride in the eye I had for word detail and how that made me a good editor. I latched on to things I could claim as mine, things I could readily say I was skilled at. So when I started experiencing frequent fibrofogs, I moved from denial, to full-blown panic, in no time.

Some weeks back, my doctor asked me a series of questions, all of which I answered ‘No’ to, and all of which were related to my cognitive functions. Some of them made me laugh out loud and think, “are you kidding me?” Later, when I sat to think on the questions, I realized I hadn’t been truthful, and I wasn’t surprised I hadn’t. I am a very stubborn young woman.

Fibro fog – also known as fibromyalgia fog and brain fog – is a term commonly used for the cognitive difficulties that occur with fibromyalgia.

According to a 2015 review in Rheumatology International, some patients report that the loss of mental clarity can be even more devastating than the pain and fatigue associated with fibromyalgia. Fibro fog can manifest itself in different ways in different people but some of the most common symptoms include:

• short term memory loss
• misplacing objects
• becoming easily distracted
• forgetting plans
• difficulty carrying on conversations
• inability to remember new information

It has been hard to not feel like some of the things are all in my head, that they aren’t really happening, and that there is no need for me to do certain things differently, because making adjustments would only go to prove that I believe they are happening. But, more and more, I find myself in a confused mess, struggling to finish really simple tasks like scrolling through my contacts to find that person I want to text or call, taking my medication, or making sense of some things I read. It has taken me a while to call things what they are, and adjust my life so I am not more stressed than I get, thereby offsetting a vicious cycle. Ha! Just now, trying to remember some of the things I had to do that I forgot, I just remembered I promised to read a friend’s email on Friday. Here I am (where’s that sticky note?) lol! Oh boy.

I am learning to let go of my stubbornness and accept the changes that must come, for the sake of my comfort. Initially, I did not like the idea of getting sticky notes, keeping a log book to track new developments, and asking for help with things I’m used to handling on my own. But gradual adjustment is helping me, and reminding myself this is nothing serious, keeps me going. Truth be told though, recent difficulties have been harder to deal with than the pain and persistent fatigue. This past week, I kept zoning out of conversations, I started feeling guilty for my incoherence. And oh, I totally nailed my proposal presentation, but yuup, I completely forgot to add my Hypotheses in the slides, and that’s the most important part of the whole business. One of the faculty drew my attention and we all had a good laugh after I gasped in shock. Thankfully, I remembered them, and said them off the top of my head, whew! That went well.

I have a supportive family and loved ones, who are helping me cope, one day at a time. I have mad love for you all. Sticky notes are okay, crossword puzzles are okay, repeating things to myself over and over is okay, stopping to read this blog post’s paragraphs over and over is okay, it’s okay that I get too confused to carry conversations sometimes, that I’m becoming the queen of spoonerism or make errors that nearly stop my heart when I realize later, it’s okay, really. My not learning to not make a big deal out of them, and do things that will make me less stressed, is what is not okay.

And so, here’s to sticky notes, and fuzzy brains! lol. We shall overcome!