I’m always at a 7/10 on the pain scale. But when flare ups hit, I’m in trouble. That’s when the pain flares up.🤣Just in case there’s any reader out there like me. I used to think it meant that the disease the person was referring to comes to life. But in some cases, it means it becomes a horrible monster as opposed to a raging beast.
That’s where I am. Have been since I think Wednesday when my husband said I’m walking like I need a wheelchair. The pain tablets..no combination of them has brought any relief at all. Nothing. I feel NOTHING. No reduction in pain at all. Just my bones screaming. My bones are behaving badly when I do my exercises too. It’s as if there’s a sudden fast decline this week. Better stop now. I still want to drive etc!
As for injection side effects? 24 hours of heartburn , feeling full after eating only a few bites, nausea… At least if I had side effects AND pain reduction, I’d feel better mentally.
Nothing. I’m lying on my back. This used to help reduce the pain. No can do. I can’t focus on reading my Bible.
Flare ups stink.
Mr Arthritis follower, how are YOU doing today? I hope you’re resting from suffering!
This is not a good Sabbath. Let’s hope next one will be better. And if you’re where I am-let’s keep holding on just a little while longer. Maybe the next treatment attempt will bring relief.🙏🏾
But, I almost forgot the gifts Providence has provided me.
Show off!
I asked my son to take photos for a vlog I want to post on where I am with this disease. My sweet angel insisted that she stop her lunch and “do what Mommy is doing!”
She even took time to reassure her sister who had been overseeing her eating, “Don’t worry! I’ll be back! I just want to copy Mommy.”🤣
My youngest blessing, her twin sister… I don’t know. I don’t know if it’s the classical music that research shows has made improvements in the brains of neurodiverse children; I don’t know if it’s the supplements research has shown help (in much higher doses than we can afford. But I figure less is better than none.) I don’t know if it’s because of specific efforts to engage in speech and for her to watch the videos I make; or if it’s natural progress. But my last born has been talking up a storm.
Well, a storm compared to her “non- speaking” days! And within a few days she’s even modified her speech to be more ‘correct.’ From pulling our hands and asking for “some grapes,” she changed it to “want grapes.” If she doesn’t see what she is looking for, she names it. Remember the frustration for me as Mom when I didn’t know what she wanted? And her reaction to the word “No” is so much better. The whole world no longer knows when she’s upset with us.😊
There’s a lot we don’t yet understand about her behaviour. She only had maybe five things she can ask for-for now!! A lot that perplexes and frustrates. I’m still sad that I can’t do her hair and she can’t even handle it being washed-resulting in some funky smells and a need to shave it off. But we all rejoice in the speech that’s coming despite us putting pressure on her. It’s a huge blessing.
(I have found that the AS patients whose AS is not under control, who aren’t thriving, who end up with double whammy issues – one with AS and cancer, don’t continue blogging. It’s the “I’m so strong, I have run 29 marathons despite having AS” people who keep their blogs up. It’s the ones who don’t have it as hard. It’s the ones who aren’t suffering MUCH, who keep sharing their successes and triumphs and how ‘strong’ they are… It’s very few who keep telling their truth. I’ve only found one young lady on IG who is open. Who shares the better days, and the awful days when she needs a walking frame- despite being on biologics for years, now moved onto infusions as the biologics didn’t really help much.
So, here I am. I hope to continue as long as there’s a reader. And if I join the “my AS is under control” group, I won’t post about it, but more about my other life. The other issues that are chronically mine by virtue of belonging to my dear children-the autism, the ADHD, the vision therapy. I don’t want the sufferers to feel alone. And that’s how I feel. I’m glad others can run up 10 flights of stairs. I can’t even walk up 5 flights of stairs. And I know there are others who can’t either. We will keep each other company. We will be strong despite our bodies weaknesses.
People need to know that AS is not the same for everyone. They need to not look at so and so who’s doing awesome, and expect you to be like them. So, while the sick ones drop off, I will continue. And I hope they aren’t like the ‘celeb’ I’d never heard of who killed himself due to pain. I hope they’re just tired of blogging the same old story. I hope they’re still alive… Even the one who began his terminal cancer and AS blog. I hope you are silently surviving with much support.
Now we begin my original blog post for today.)
Like, seriously… This has been hell. True hell. I recently DREAMT I was at as hospital begging for morphine and I think it’s that bad that if I could, I’d ask for it!
I now know for a fact that NSAID do help me, if they’re at the right dose. I also do know that I’m no longer a “I only get swollen and sore in winter” patient anymore. When I was still on the NSAID, I wondered if perhaps my fingers were ok not because of it, because of Spring.
I have no more doubts. Even my big toe is crying. Yesterday I wanted to type but both hands were swollen and stiff and so painful. I didn’t know it would get worse till my HAND pain woke me in the night. Seriously!? Come on!
Yes, the Exinef 90 made a huge difference.
But…They say that if you go off a biologic, your symptoms can come back with a vengeance. Like, BIG time. And damage can speed up. Could that be it? Can it wreak havoc even though it had not made even half a dent in the pain and stiffness and fatigue? I thought you’d only feel the impact if it had worked. Now, I’m not so sure.
All I know is that hell is back. All I know is that I’m back at the point I was at when I thought I’d give it one last shot at diagnosis. I’m right back feeling the pain that made me beg God to just kill me.
My husband said that he was watching on video as I took the little four on a walk on Monday morning. He said he sat there watching his phone screen and thinking to himself, “What is she doing!?? Where is she going? She is already walking like she’s suffering.”
When we take walks, I don’t realise my state. He always tells me I’m limping. I took a morning walk yesterday as the sun is now rising early. Oh.my.word. He’s right. I stay limping early. And by the time I turned back home, it was a link with horrible pain in my right SI joint. I wondered what others thought as they watched me. It was too visible.
I am not at my best and I have to go quite a distance today to go see a gastroenterologist and ask for a colonoscopy. Let’s hope he’s a good old man. I know he’s old. He’s been at it for 40 years and he looks old. I hope he’s like the obstetrician who delivered the twins. 🙏🏾 Let’s hope it will be worth it. We need all the good doctors we can amass.
My husband is overseas and keeps telling me to sleep. I keep telling him I’m in too much pain!!! (It’s 11pm here.) Ahhh. I’m at the stage of pain where if you are chatting to me about nothing linked to me, or about something trivial, I can’t. I just can’t. I need to curl up into a ball and focus on something deep. Something deep about to take my focus away. I can’t do trivial when my body has been on fire all week and the only person who seems to get it is in America.
Pain is lonely.
Pain borne alone is very lonely.
BUT I also have the joy of knowing I don’t fail. While my children were awake, I didn’t let the pain overwhelm me. I didn’t snap at them. I tried to do as much housework as I could so my teens didn’t feel like glorified slaves once they got back from their exams. I did bed time with my talkative twin. I did so much school with my middle two that they asked to stop. I did that with screaming bones.
And so, I know God understands that I’m too distracted to read the Bible right now. It needs depth I cannot give it. And He knows I’m thankful for much. Like my eight year old who knows exactly how to engage with my non-talkative twin. Who sits with her instead of trying to force her to engage with her. Proud of my little girl.
She’d made me put the box on the sleeper couch and just lay next to it for a long time. My girl respected that and worked with it.
Yesterday, I reached the lowest I could reach. But then I was lifted up.🥹
Someone said something that made it patently clear that they have no cooking clue how bad this is. How the fatigue weighs me down daily. How it’s scary to feel my lungs suffering when I try exercise. How frustrating it is that things I could do easily just months ago, are impossible now. They have no clue, despite the amount of awareness posts I’ve done, how all-consuming and painful, oh, so painful this disease is.
If I DO sleep, I have nightmares that people are drilling into my SI joints with the swords. Or I dream that I’m at the hospital begging for morphine. (That’s just this week’s worth of dreams that I can recall)
I realised you can never raise awareness of everything and make it make sense to everyone. The whole point of ‘awareness’ for me as a Christian AS patient with other organ problems) is that people understand the reality, to know that for some people, that one step forward took much effort, so don’t except them to hike up a mountain. Awareness -for me-is so we are all kinder and more thoughtful of what we say to each other because we have no clue how many smiles are painted on but not genuinely FELT. It’s to show that I am “content with whatsoever” God allows, but I’m not well. For people to know that the happy grin is hiding a grimace of pain. I’m just trying to live the gospel, to be a living example of faith-resting in His promises instead of my present reality.
But if all efforts at awareness fail, it’s time to stop and just blog. Thats the problem with an invisible disease. It’s not as dramatic as something visible and so they act like your reality is nothing horrendous.
BUT, know my awareness hasn’t totally fallen on deaf ears. I have a young newlywed who even years ago when all she knew about were the sleepless nights due to pain and IBS, the iron infusions told me that it helped her appreciate her life of painlessness. She said she’d never been sick so couldn’t comprehend but it made her more gentle and kind to others. And more aware of suffering. Her words and the words of a mom of many keep me going when it seems those closest to me inflict the worst pain by their ignorant comments. And there’s no point in flogging a dead horse. At least now when I’m not at church, members who have my number and see my posts understand the multiple reasons why I’m not there. (Children and me) And when I AM, they can understand why I leave early. I guess my awareness job is done via that platform.
I watched a video this morning and what the AS patient said reminded me of her statements and brought tears of “YES! You get it! And I get YOU!” rolling down my cheeks. And this is someone on helpful treatment, but he still has bad days. It validates me who after more than a decade of actively seeking an answer, had a diagnosis in January and is still untreated. And instead of moving forwards with help, having to stop one med that definitely was helpful, and unable to keep trying one out to see if it WILL be helpful. I have every right to be forcing myself to ‘be’ and to expect those closest to me to understand how exhausting the mental and physical burden is.
The brain fog is an aspect I haven’t touched. I think mainly because menopause also comes with memory issues. So, I got home and was very sure that I left my shopping in the trolley in the parking lot. Then I couldn’t find my car key to go check if that was so. Then my son brought the key, telling me I’d left it in the ignition. And yes, all the shopping was there. But I can’t recall if I put the trolley away or just left it there in the parking lot for a trolley guy to find. And I hate that. I usually try go put it back safely or put it against a pillar so it doesn’t roll into a car. But I don’t know what I did.
And that’s just a bit of it. I could not find my phone. Yet I’d brought it to my room. These things seem mild, but forgetfulness and mental fatigue are bad. Especially when you have children who need to be medicated. (Did I tell you I’m on a huge ‘let’s limit the meds and try supplement with supplements so they don’t have to use as MUCH?” And also trying to help my definitely ADHD four year old who can’t be medicated anyway. I need my brain. I need to remember all the exercises my children need for vision therapy, for occupational therapy, and to remember to plan their school work.
I was going to post this as a status, but you see, there’s lots to say because it doesn’t end with tears of heartache.( Typing while I listen to my screaming, over reacting son. There’s an emotional pain that comes with special parenting that I don’t even try to raise awareness of. A daily, constant, grinding worry and draining, gnawing anxiety.)
See, I have different people for different parts of life, and that’s ok. We can’t be everything to everybody, though we can be sensitive to each other and choose our words, say things to those whose health is also intact rather than to those who wish they were healthy- a lesson to me too, to be watchful and sensitive…
She sees me. Her child suffers daily though mostly invisibly too. She knows that pain and trying to ‘live’ at the same darn time are not easy at all. You’re forcing yourself to ‘be’ when you wish you weren’t…I don’t know how long I can go through with the fake “incredible woman” act though! My husband has certainly seen his share of tears when he’s around to see them. Busy traveling all the time!
I have a friend who’s mourning the death of a neighbour who had a very young autistic child, worried about the level of love and care the little one will have, worrying about MY little ones. She sees. She sees the totality.🥹 She too has secondary gnawing anxiety of a sort. And she worries dreadfully about the financial impact – I have to pay the hospital R4050 for the surgery and the doctor’s fees aren’t fully covered either. And who knows how much the anesthetist will charge! It’s a horrible stress to have. I think of the new father who has joined our group who wished he was dead so his family didn’t have to deal with the consequences of this stupid disease.
I don’t need everyone to get that every day is a battle. I don’t even need any one to understand how horrific every day is. Yet some do. And really, that’s most important. My terrible attempts at awareness did make a difference.
There are those who live it and share it, who I can weep with. There are those -the very same person who made my awareness feel like it has failed-who put all the pieces together (the struggling lungs when I exercise, when I wake up from surgery, when I get sick) to make what I know is a very ugly puzzle but is sadly not a puzzle I can throw away. To have parts of me seen is more than others have. Others truly don’t ever get seen at ALL.
And I am thankful. Thankful that though He is as invisible as my diseases, He is definitely as present as they are, no matter what unbelievers and doubters may say.
And He sees.
Today, I choose to be silent about me and how bad things are, like I was yesterday . It’s a bad day. Worse than yesterday, and yesterday was so bad I couldn’t even shower. My husband phoned and I tried to get out of answering his questions re my health. I couldn’t even do all my AS exercises yesterday. Just did some arms and the breathing to try slow down the fusing shut of my ribs. I can’t describe the anxiety in that thought while also not treating the disease at all. I’ve seen this kill people. It plays on my mind even when I’m not in excruciating pain like this week because it HAS to. I HAVE to do those exercises. I’ve already lost more mobility than I should have. And I will tell it to God- and whoever is unfortunate enough to be reading this blog. Sometimes I feel bad blogging about AS or kidneys or operations but then I remind myself, “Your url is chronicallyyours! They know what they are here to read! Don’t sugarcoat anything!” So here I am.
One of the AS patients who died this year had a wonderful mother. Yes, she didn’t see how bad things were, thought her daughter had to just buck up and get on with it till she realised she was in liver failure, but in general, she was a loving and supportive mom and an amazing grandmother.
It made me glad that my mother figure (Step mom in law) is far away. She can’t see what I go through. She already feels so desperately worried the few times I mention it that I don’t ask how she is on my worst days because I know she will ask how I am.
Then I realized that though my biological mother wasn’t the best, that I didn’t have any recent heartwarming memories, I DO have those who care about me. Who contact me purely to check on me, not to use me. Those who send messages because they love me, not because they want something from me.
I see it in their actions. In the way they study the various conditions my children have, in how they share videos that remind them of my children, in how they try give (money) because they aren’t here to do (anything for me.)
They are my blessings.
I am thankful for every true hearted query. For every well thought out sentiment. For every, “Oh no, that means you’ll have a terrible day” after I relate something I did that will tax me or have bad consequences.
Like allowing my daughter to sit on my lap for a very long time as she made me read two books to her despite how the enthesitis in my pelvis has been raging.
My husband was saying this morning that he’s got grey hair because of me. In the past, I was sick but it was random issues, random surgeries and we were en route to diagnosis and HEALING. But now, now he knows there’s no cure at all. There’s no healing. And it gets worse… It’s knowing that we are trying treatments. Trying. We don’t even know if this Enbrel is the magic bullet or if we will have to keep trying and failing while the disease keeps on stealing my mobility from me.
It’s scary.
But we have our blessings. And we are thankful for them.
I came‘this close’ to crying in front of a plumber just now.
AS is a disease of pain. But you get flares where it’s like the whole world’s pain descends on you. That’s today. After a hellish night where it felt like I sweated all night and was therefore made cold when my nightie cooled down, only to get hot and sweaty again, I woke up to a morning of hell.
I do think the NSAID is helping. My elbow and peripheral joints haven’t been as bad. THEY haven’t kept me awake. But good lord, my hips and SI joints are screaming and yelling and screeching in pain. I ended up sending the behavioural optometrist a run down of things my poor angels are struggling with and how I’m therefore breaking their exercises down into smaller steps, and telling her how the exercises are hard on ME too. I can’t bend over and push and pull. It hurts. Kneeling to push and pull (a variation that has to be done on tiles to make them slide up and down) also is a killer. I explained that I have AS and it’s currently not under control. (To put it mildly.)
I gave the children their school work and went to my room and while asking a friend about their sibling, couldn’t take it anymore and wept, asking her to pray right at that moment. It’s not only the bone pain, but something the gynae did to me in order to test something. It’s a cluster duck (heh heh) of pain.
So, the plumber wanted to see me just as I was at my worst point, where I was in so much pain that I couldn’t hide it. So I hobbled off the bed, wiping tears away and hoped I could manage. He could obviously see the pain as he apologised for asking for me.
What about my “funny baby?”
We have a plan. When she doesn’t see me, Twin B is fine. She keeps herself busy and does her own thing. But if she thinks to come open my door or sees me, then it’s game over. I can’t finish my ironing or sweeping or whatever it is I’m doing in peace. She will grab my hand and take me to my closet and want me to pull things down for her. Some of which are markers that she will carry around after removing their lids. Yes, you can imagine the mess. So I try avoid that.
This time, she spotted a box their combined birthday gifts came in, and wanted it. So for the sake of peace, I brought it down. She removed some bath soap that was given, and because of the shape, thought it was toothpaste. She took me back to the kitchen and wanted me to bring her toothbrush down. (That’s how I knew she thought it was toothpaste.)
I took her back to my room, with her protesting all the way. I told her we’d wash her hands. She shouted in anger, “Wash!” And cried even more. But I took her anyway.
I picked her up and sat her on the side of the sink as she cried, turned on the tap, put the soap on her hand and boom, tears all gone! She was so happy! Totally in her element. I ended up having to put the hand towel over her lap as she was now wetting her skirt and leggings. Then she started splashing her face and ‘washing’ it. It was too cute! So much for those initial tears!❤️She also tried to drink the water by sucking at her fingers.
Eventually, we were both done and both happy. And she stayed happy for the next hour❤️
I thought when my AS progresses, it would get worse only in terms of stiffness and fatigue. I didn’t realise the pain could become so bad that it doesn’t respond to pharmacological help at all.
As I told one of the hands holding mine, before, lying down gave me relief. Being able to take the weight and pressure off my SI joints allowed the pain to dissipate. My only concern was that as a teacher and therapist, I couldn’t exactly lie down as my body dictated.
But now I’ve lost even that luxury. It’s like I’m lying on bone and nerve, no fat, muscle or skin to cushion my bones. Nothing is bringing relief. Nothing. And that’s a scary place to be.
My son’s paediatrician had to see him yesterday. We are focusing on his anxiety on top of the mood and ADHD. The office manager asked me how I am. I told her I’m ok, and she said, “No, you look like you’re in pain. Is it the surgeries?”
I hate that. I thought I’d forever be able to hide my suffering from people.
Same with the pulmonologist. After he told me he believes I have pulmonary fibrosis in my right lower lung this week, I went to get a nasal antibiotic and steroid at the pharmacy. (My sinusitis is taking its own sweet time to clear up.)
There’s a store manager we’ve known for years who happened to be on duty. She asked how I am. I said my usual, “I’m fine.” And she said, “No, you’re not. There’s something wrong with your lungs. I can hear it. You need to take care of yourself as well as you take care of your children.”
Wow. I didn’t know an acquaintance would hear anything. My family doesn’t comment on it. Only one friend has commented via voice note that I sound out of breath.
This is hard. I have no choice. I can’t ‘rest’ like I should. I’m constantly researching as therapists are very hard to find. So I need to be the researcher therapist when my children aren’t around . I also need to be the teacher and mom and cook and cleaner. Yes, we have help but it’s part time on the few days she does come. It’s not even a full day’s work on the days she comes -budget issues.
It feels lonely. My closest friend in my province and church has absolutely no clue what it’s like. She has never asked what the actual nitty gritty realities are and has never attempted to understand how relentless the strain is.
And so, I have people holding my hands from a distance. One even in a different country. But..they are holding my hands even though none are home educators, have children or children with extra needs. They can’t relate, but they can LOVE!
And also, someone I’m not even close to sent a monetary gift for fuel or whatever we need. I could safely go to the paediatrician knowing I had enough money to pay his fee -R1070. Thanks to someone holding my hand.
I’m so thankful for the care, concern, trying to understand…The video watching to try enter my world means a LOT to me.
While I pray for a breakthrough in terms of my treatment and the children’s therapies, I continue to wholeheartedly pray for the best outcomes for THEIR situations.
They are God arms, holding me up when I spend over a week limping and using a cane and then stopping because the wrist pain is too great. They are His love.
Wearing masks because I don’t want to catch the virus ALL my children have.
I felt on top of the world yesterday. Granted I had way too many pain tablets to even count, but I felt on top of the world.. once they kicked in.
Today, I am paying for it. I am paying for it and I want to cry. I often had days before diagnosis when I’d tell my husband, “I can’t. I just can’t do this. I wish there was a nursing home that I could go to where I could sleep, be served food and sleep through the night-unlike a hospital where nurses and patients keep you awake at night. I want to be nurtured, mothered, looked after. I can’t do this. The pain and fatigue are too much. I wonder why.”
That’s the kind of day I’m having, I know why, and it’s only just past 8am.
The loud noise of the children’s shouting to each other from different rooms, my teen daughter’s very loud laugh all set my teeth on edge. I want to join in and just SCREAM as loud as I can. Shout that I need a break. But what would that hell except to frighten them? I want to be in a quiet place, resting my weary body.
I shouldn’t have been a hero yesterday. Moving my heavy queen size bed to clean under it, vacuuming and mopping multiple rooms, hanging laundry, bringing laundry in, hanging more laundry, ironing, working out…And daring to print practice exam papers and do dishes. It was too much for the me I am today. The me I will be until we try biologics AND they work.
For it’s still a long process. I don’t even know when I will be approved. I don’t know if we will afford it. And I don’t even know that the first attempt -Enbrel- will work. What I do know is that all my joints are screaming and I know the screaming is so loud that not all the pain meds in the world will bring the volume down to the level it was at yesterday. What I also fount out this morning I s that doing glute bridges hurts too-as well as some of the other AS specific exercises I’m meant to do.
What I do know is that I’m limping and nobody in my world knows how bad today is. And why should they? It’s not like they can come take the load off my painful, weary shoulders. And they know AS is forever. So, I come to my trusty online journal and share what many others are going through with their ailments.
We will survive -somehow. Don’t ask me how, as I hear my twins screaming and crying and want to join them instead of having to be the one to find the strength to sort it out.
Just breathe. The day is not infinite. Somehow we will find a moment of rest even if it’s right at the very end of it. And we will learn from yesterday to never try again to be the us we used to be before disease took over us.
Today, I have AS and AS has me. But it doesn’t change who I am. Weaker, slower, walking unevenly, silently crying but still holding on and being the me my children deserve. So help me God.
My church is big into being healthy. (Kinda) The serious Advevtists prefer the use of natural remedies over drugs, which makes sense given drugs can damage and kill and if used properly, natural remedies are safe.
Except they aren’t always effective. Never more potent than in the messages of an adoptive mom of seven who told me she regretted having tried natural treatment when she first heard she had breast cancer. It was treatable. Stage 1. But she went natural and natural failed her. By the time she realised that all she had done was to give the cancer a chance to speed through her body, it was terminal. She was dying.
She died. And a second of her adopted daughters went on to die by suicide.
I saw the other end. Many tumors throughout my niece’s body as she has the scan. The screen lit up as she just oblivious to the danger. Stage 4 neuroblastoma. Terribly dangerous childhood cancer. Other children lost their battle. She lived. Infertile probably. And shorter than she would have been. But, alive. She can leave a positive mark on this planet.
And that’s the essence of where I am. I was your carob- eating, no sugar, vegan friend. But it didn’t stop AS raging on through my body. I tried everything, not knowing there was nothing. No cure, though it can go into remission (ie. Dormant) for a while. I want to leave a positive mark on my children, specifically my younger ones. My older two will remember my teachings . My younger four, nope. They still need a present mom.
Don’t tell me to use castor oil packs when you have no clue what disease I have. Don’t send me to videos of a woman who has never had my disease, nor treated my disease. Don’t give me unsolicited advice and remedies. I am the expert on my disease…
Give me a hug. Ask to clean my house. Baby sit. Check on me. Research the disease.
The arthritis has increased in my jaw. I wasn’t able to open and chew properly when I tried to eat grapes yesterday evening. Shooting pain wakes me at night. You bet I want drugs. Effective drugs. I owe it to my children.
I had a lovely aunt from my maternal side of the family. Gentle, soft-spoken but firm; loving and tender; suffering greatly from the loss of a husband, a daughter, then her son in law, leaving her grandson orphaned, she was love personified.
She was the only genuine mother figure I and my cousin’s wife (Cousin being son to a different maternal aunt) have had. But Covid-19 took her, and our world, our only taste of unconditional ‘parental’ love went with her.
She often used to phone me, just checking on me, on us. Not because she wanted to know how her sister was, but because she loved ME. She never complained, just stated facts when I asked how she was.
She wasn’t well. Bone pain, diabetes complications, heart problems, in and out of hospital, in and out of comas. She suffered terribly. She wished she was dead.
And so, when Covid-19 took her, it was truly bittersweet. Finally, she was free. Finally, she was NOT in pain. No more would her days be either “not too bad” or “awful.” There was no more of a life of “bad” to “worst ever.” But oh, how I miss her. And how saddened I was that she had to suffer before finally dying.
At the start of this year when I was still semi-active on my Facebook page, I shared that finally, after 12 years of trying to get a diagnosis and cure, I got one. Except the disease is incurable and progressive.
Some girl commented, “That’s sad. Oh well! At least you know what it is now!”
Seriously, if someone hasn’t asked you to find them a silver lining for their cloud, don’t do it. Don’t find one for them. Just sit with them in their bad news. In that moment, feel with them what they are telling you they are feeling. I wanted a diagnosis so the suffering would end! Here we are in April and nothing has changed! I just have a name for it now.
I’ve not ever had a ‘happy and healthy’ life. I don’t know anyone in my life who has been in my shoes. Born too early, I was born into suffering. My first ever childhood memory is of me crying in pain after surgery at age three. I can’t describe the exhaustion of being in pain my entire life. I wish I could. I wish so much that I could give a glimpse, give people just a day of what I’ve had my entire life. The tests, needles, operations, loneliness, hallucinations, X-rays, breathing treatments, Emergency room visits. The sufferings I shared with my parents, and the suffering I hid. The extreme pain I didn’t think to share because I thought it was normal. Oh my word. How sad. How sad for the little girl that was me-not telling my parents about the leg pains, the burning, gnawing abdominal pain…They eventually found me rolling around crying silently in bed, which led to a Crohn’s disease diagnosis of seven year old me. SEVEN YEARS OLD. A junior school teacher I never told them snot even after the diagnosis, who seeing my tremendously thin frame asked if my parents don’t feed me.
And so, after decades of the same. Year after year… I am done. I am truly done. If I didn’t have children, it would be very difficult to justify staying alive. When you look at it through cold, hard, non-emotional eyes (Made that up.) , there’s no reason to keep living. I can’t be the person I wanted to be. I can’t visit the sick, I can’t drive to hospitals and find the poor and give small gifts. I can’t be a volunteer. I can’t gos day without pain. That’s kinda messed up. There’s much that I can’t do to be helpful to anyone else. And instead, I cost money and ever will. The costs will only increase. They are only increasing. I’m already going to have to pay over R2000 for today’s rheumatologist visit that a sweet friend remembered yesterday that I’d forgotten was so close. Thought I had a day to go. My ineffective pain pills from the ineffective gastroenterologist already had to be paid for by me despite my medical aid plan.
There is no silver lining. So, don’t tell me “at least” I know what it is. I wanted to know so the suffering would end. It’s not. This is money we desperately need for the children. University is coming soon. The other children need more (specifically my ‘ausome’ ones and ADHDers.) My “at least” will be like that of my aunt-my children will mourn my death, but rejoice that I’m free at last.
I embrace the end. Many of us chronic pain sufferers do. And while we wait, we hope for a ‘better’ day. And we rejoice in those who see us. Who see how hard it is, who cheer us on, celebrate our doing what’s normal for others but almost insurmountable for us.
They said I should write a book 