First, it was my mother telling me to send my son back to social workers so we could get a “normal” child. He’s not an appliance, he’s our baby! But it could have given me a glimpse of her thinking. If she could think a child is easily discardable just because they have special needs, no wonder I was termed a “waste” because I homeschool my children. I too was worthless because I wasn’t contributing financially. Just like my son never will.
This weekend, someone asked if my health issues that keep getting worse aren’t being exacerbated or triggered by my emotions that are under strain due to the heavy load I’m bearing- caring for all the children who have hectic needs and draw from me from wells running on empty.
My first thought was, “Seriously!?? Do you know how many of us spondees, Ankylosing patients, have other health problems? Many of us have gut issues, increasing pain, and I’ve seen recent posts where lungs are also dying like mine are. And these people don’t even have six TYPICAL children, let alone my angels with all their complexities!”
I’ve seen 37 year old mom of only one child already bent over. And she didn’t have any other health problem except that. Except AS. I’m 43 and still upright and able to move my neck. It could be worse!
My second thought was, “If for some weird reason, my children were the cause of my health issues, what would she propose?” It’s not like she’s close by and offering to babysit. She’s in a whole other country. So what then? Would she suggest- like an ex friend of mine- that I give some children away?
Yes, I had a young person suggest I give my adoptees away as my husband wasn’t really being a hands on dad like her husband is. She thought he might be hating being an adoptive dad.
Believe me, I’d get back from church and he’d nap and I’d be the one hands on even with our first biological children. My toddler son would smash his dad on the head with a plastic cube- noisy and rattling, and dad would remain fast asleep. Not all dads have received the “Give your poor wife a break on weekends and Mondays and after work!” memo like her husband has. And it’s not just dads of adopted children.
So I will be clear. I am sick because the devil has brought suffering to this world. Yes, I’d love to rest more. But my lack of rest is not what has caused scarring in my lungs.
My children are here to stay. The only thing I do agree with is that I’m not able to rest much. But none of my angels are causing my body to disintegrate.😅And I’d love it if those suggestions stopped. They reveal a lot about people’s hearts. And I spend a lot of time lamenting our church’s fallen state as it is! I don’t need more evidence of cold hearts.
Trauma doctor said broken arm and bleeding (internally)
It’s been tough. Extreme pain. She fell off the trampoline. Where was I? Calming down her twin sister having a meltdown. I really felt upset with God that day. So much had gone wrong. I couldn’t walk up a very small hill without losing air. My SI joint pain was extreme. But I tried to stay ‘thankful.’
Then my daughter had a meltdown. Dad and oldest sister not here. I wanted to cry. I truly needed to be resting- not going out to strain my back with heavy children. But even then, I thanked God. I was so relieved that my offering her a swing in the sensory swing had calmed her down. Yes, I was hurting my back, pushing her in it. Yes, it was hard, getting her in it. But it was extremely rewarding to finally see her smiling. And to even hear her laughing! I felt so thankful and grateful and privileged…
Then I heard a scream and loud cries. The one who was meant to be watching the younger children had just left them. In an unsafe position. And my angel broke her arm. The one who was meant to watch them had not disappeared on any necessary business. And I have drummed into them that my middle two have no foresight etc, THEY need to watch each twin that I’m not watching.
But instead, they left the children in a vulnerable position. And my child jumped closer and closer to the edge- her eight year old brother not seeing the danger. And she jumped off the trampoline (not on purpose) and rolled onto her arm on the ground.
I couldn’t believe it. Why??? Have we not gone through enough? My cough isn’t even gone!! My lungs haven’t improved! My heart rate is above normal and has been for five weeks now! My elbow needs surgery! My children are not ok. And now this. My poor angel would suffer for who knows how many weeks- uncomfortable in a cast.
I wanted to sit down and cry. But I had to pick her up and carry her to the car. And carry her around the hospital. And watch her in agony. And hold her arm down in different positions as she cried from the pain.
I lost hope.
I don’t have the money to hire a second mother. I don’t have the space to put a second mother. But my children need one.
I feel sad and hopeless.
I don’t feel thankful, I feel and am over burdened. I am in need of help, not platitudes. I don’t need Bible verses, I need help. And I don’t know how to get it.
It’s been a sad week. But I will be thankful that I’m still alive. My poor child has been in pain and wanting mommy all the time. One afternoon meal time, my children were shocked that I had her. She was soft and I was far away in a different room. But I still heard her, “I want mommy.”
And I rushed to her, shocking my teens who had thought her voice had not carried to me.
The word “No” is very valuable. Children must never learn that they can have everything they want. She has already taken her nine year old sister’s doll that I gave her for her birthday – necessitating my buying a new one. And my angel 9 year old hadn’t even complained about it.
No.
You cannot have everything you want. Things belong to other people and they are for them, not for you,
A lesson her father tried to teach her today when she wanted congratulatory balloons he received yesterday when it was finally announced at his workplace that he had gained a new role. I say finally because we knew and were waiting for the official announcement so when someone at his office sent me the announcement, it wasn’t news to me but she thought it was- telling me to spoil him. I had already said my words of affirmation when he told me that the Board has decided what they had decided.
“No” has given me 50 minutes of screaming. She has thrown things around. Tried to break her cracker into multiple pieces. Has pushed me. Has tried to bang her head on the wall. Picked up the landline and threw it down. Has tried to bite her sister – the nine year old…
Oh my word. What a morning when my pain tablets haven’t taken and I just want to cry ANYWAY.
The positive is that the Endodontist was just as angry as I was at the dentist who refused to fix their non permanent crown. Its is the first time someone in the medical field got angry at someone else. And that made me feel better. Pity that appointment wasn’t today.🫣
PS. Peace has reigned. She’s doing her usual happy shouting. I wish my heart could recover as quickly. I wish all the physical stuff didn’t make me worry about the future… Next time, the phone might break. Next time, she WOULD bite her sister. Next time, she might push me over. Next time, she MIGHT fracture her skull. But for now…I focus on the now. Time for me to phone the hospital radiology department and book the bilateral SI joint CT guided injections. Ouch.
Life has give me lemons. And I am on the autoimmune protocol so can’t add any sugar to turn it into lemonade. So I’ll just have lemon water instead.
The chest has finally started behaving, so I cancelled the GP appointment. I had been complaining for a while to my husband, telling him my elbow was feeling wrong. The one that had the nerve release but not the complete procedure I’d booked for- the transposition part. Basically with cubital tunnel syndrome, you’re meant to move the nerve from where it’s stuck in the elbow, and move it elsewhere where it won’t get stuck. To a different place on the elbow- which my surgeon claimed he wanted to but I have no fat so the nerve would have a very thin layer over it, causing me a lot of pain forever. Or, as google and other surgeons say, you can move the nerve to lie on the muscle. He didn’t. He just released it from where it’s stuck..and put it right back.
And yes, even my hand surgeon was displeased.
And now I’m the one paying the price either for the surgeon’s laziness or for his lack of experience. My arm has never healed. I have numb areas, I have areas that feel pain. But now, the nerve has become trapped too. I had been complaining that it felt like it, I have started dropping things- which means my grip is getting weaker, and yesterday confirmed it.
I picked up my dumbbells, hoping to restart my AS exercises. I’d felt too sick to do most. But when I did a bicep curl, BOOM, SHRIEK, my nerve screamed. I tried lighter weights. Same thing. Bending my arm causes pain that I now cannot ignore. And the elbow pain has now begun waking me at night.
I’ve ordered a brace to wear at night. The conservative approach is to stop the movement causing the pain, wear a brace to keep my arm straight at night, take anti inflammatories (which I am on already for the AS) and wait and see a while. But every bit of lost movement cannot be regained. This is a condition that can cause paralysis of the hand.
And so, I wait. And tremble. Recovering from that surgery was BAD, and that was without the nerve fully being moved. I assume the next surgeon I find will do the full procedure. I couldn’t sleep for weeks! My nerve was in so much pain that even a sheet on it with my pyjama sleeve covering my arm, was excruciating. I looked for a doughnut to put my arm on so my elbow would rest on air. Talk about difficulty sleeping, but the thing I got was too hard. I’ll buy a breastfeeding circle pillow as soon as I know I will need the surgery.
So, the glass has water for this thirsty soul. My chest is getting better. But it also has so much lemon juice lemons that it grates my teeth- my nerve is in trouble and I hated the long recovery period. I’m scared of it… And I hated not being able to use my arm. And I don’t know where to find a GOOD surgeon.
And also, I’m going back to the Endodontist today. I had a crown done by a dentist. A bad dentist who didn’t believe me when I said the temporary crown was way too high. I went to a different dentist that evening because I was now experiencing jaw pain from not being able to bring my teeth together and he was in shock. I didn’t even have to bite on the paper thing they use to check your bite- my upper and lower teeth were clearly not close to each other.
Long story short, that crown fell off. Then part of my tooth broke. When I saw the Endodontist she said that if she had put it in, give it was less than a year since it was installed, she would have charged me nothing to replace her poor workmanship. Alas, the dentist not only charged me for the consultation to LOOK and see, but then told me they wouldn’t be able to replace the crown and I really would be fine without it 😏. And now, a further part of my tooth broke off and I’m going to the Endodontist to find out if there is anything she can do to save the rest of it. And get a quote for how much that will cost me. A crown costs a whole R6400… Gulp.
My glass has lemons. I will have to be off Enbrel for two weeks pre surgery and two weeks post surgery. I only restarted yesterday.
I read memoirs of holocaust survivors. Death camps and concentration camps where you had to find your own cup or bowl for the disgusting ‘water soup’ they received. A glass was a luxury they would tie to themselves so no other desperate prisoner would steal. Theirs was usually made of metal, a metal cup. It was the only way they could eat enough to keep their bones loving. And that was a minority. Many died even though they passed a cup.
I have a glass. It is not really half full in my estimation, but things could be worse. I could have no glass at all. So I’ll accept the AS lemons and daily struggles of life. I’ll go and hope my tooth can be fixed. And I will be grateful for a glass. At least I can drink my sour lemon water. It will keep my bones moving.
This morning I was very excited. I thought I’d found a nebuliser medication that had sorted out my lungs at least overnight. I had had no wheezing or crackling till I woke. I hoped my sinuses would follow suit. I felt positive they would. And so when I woke up at 4am, I was excited to finally be well enough and awake enough to pray. After all, since two Mondays ago, I hadn’t slept because of my throat and then my lungs. I wasn’t well enough to do a proper formal, good morning prayer.
I started talking to God, “Morning God! I’m so happy to have some proper long moments of quiet with you! It’s been a while! All I have done is breathe a few prayers asking for Azola to get a job, for wisdom when she speaks on the radio.. For *Joshlin to be going… Thank you so much for being with me. For giving me life despite it not being exactly the greatest. Today…”
I then fell asleep!
So much for being awake and excited!! I fell asleep! And after having been excited about my natural nebuliser meds, it turns out I was probably just too tired to hear my chest, for my husband was woken by my rattling lungs! He thought someone was scratching at our walls and he was convinced he needed to go stop the burglar. Till he realised it was me. My lungs.😅
I am a tin man again. Which is another way for me to know Enbrel had begun working. I hadn’t been this stiff in weeks. It was as if as I walked, bone was running on bone and I was having to pull my legs up off the floor. The pain in my bones has increased from only being in my SI joints to the other areas of arthritis in my neck and spine. And my elbow with it’s not fully fixed nerve from an unfinished surgery has been screaming too.
My husband who distrusts doctors and hates medication has been insisting that I go back to the GP today. That’s how bad things are.
But hey, at least I got to have time to semi pray! It’s better than nothing, right?
*Joshlin is a six year old who went missing but unlike other stories, was fishy from the beginning. Whenever I see a missing child poster, I share it for the parents’ sake- so they know there are people who care about what they are going through. But her story was already dodgy. The little girl allegedly went missing while in the care of the mother’s boyfriend. She was home with him instead of at school as she had been feeling sick.
No offense, but “mother’s boyfriend” was already a red flag. And how did the boyfriend leave a sick child on her own, giving a kidnapper the opportunity to steal the child??
Needless to say, I was not surprised when mom, boyfriend, friend and someone else were charged with her kidnapping and human trafficking.
I just want to know what happened to the baby. Is she dead? Where is her body? If she’s alive, why has she not been returned? Has she left the country?? The little girl’s community made a big fuss when she went missing. (Well done to them!!)And the mother then called off searches maybe two days later. Talk about another red flag!
So like the people of Saldanha, I too feel like she is my child. We are owed an explanation.
You know, the Bible in 1 Thess 5, tells us to be thankful in every situation. In my head, I twisted it to mean ‘be thankful for the situation’ itself. But no! Not necessarily! I can be thankful that – if I’m truly surrendered to God- the situation is working out some mysterious plan that will yet be unveiled to me, but I can definitely find other things to be thankful for, even if it’s not the actual situation itself.
Take Ankylosing Spondylitis. I will never be thankful for it. Nobody ‘needs’ it in particular, in order to become a better person. I certainly didn’t need it. I know others have said that it has helped them care more. But I always cared. But I can be thankful for the care providers available – if they’re any good. I can be thankful that I’m not relying on strangers to pay for treatment. I can pay, even if that means losing out on holidays away, fewer books for me to read etc.
I will never be thankful for the past 11 nights of no sleep. Firstly thanks to my cooking, gasping, wheezing lungs, and now also because of AS that was just waiting too come at me full force. But I can be thankful for the people who ask, “Ok…Your meds are finished but you’re not better. What next?” I’m thankful for the concern and care. For a burden borne before I even share it.
I am not thankful for the situation that gave rise to yesterday’s post. But I’m thankful for the gracious friend I sent it to who totally understood. And I’m grateful for the friend who fully understood the audacity when someone else tried to insert themselves in my situation and said they “know” what I’m going through when they cannot ever know, given they only have a third of the number of children I have, none have the intellectual and behavioural problems mine have, are all double digit age, and she has none of the realities I mentioned in the post. And definitely had never felt what I shared in the very final closing sentence. I can be grateful for shared facepalming.😁😁I almost felt like I had written in Greek, that that would be a response to the entirety of my post. I’m thankful for the confirmation that I’m not crazy.
I am hopeful that my lungs will not stay like this. I need sleep. I need to breathe. I need silence. I need not to stumble out of bed to hide in the bathroom hoping my coughing won’t wake the entire house.
I can be thankful that I turn heads.
After all, I walked past a nail salon place and my cough was so stunning that everybody inside there looked at me. I felt like I had the plague!
We all like to stop traffic, don’t we?😉
Yesterday was a public holiday here. Husband went to buy fruit for us so I don’t scare people. I can be thankful for that too. Fruit.
In every situation, I hope I’ll manage to find something to be thankful for.
I’m going to send this link to my people. It’s something that bugged me years ago just out of principle-and continues even worse today. I might have even blogged about it before, I don’t know.
When I ask “How are the boys?” I truly am asking how your sons are. How their health is. How they are feeling that day. Mental health included. An answer like, “Tim isn’t great. His friends are mocking him because we can’t afford expensive brand cricket bats for him. He was complaining about the teasing , feeling bad that he’s already different from the others because we are a different race to him, and now he is less than, in his eyes,” is an answer. I now know he’s struggling. Adoption when you’re Black and your parents are White is hard. Having it constantly brought up, having other differences brought up, hurts when you’re just a little boy wanting to fit in.
That is an answer. So is my other friend’s answer when I ask how her children are, “Oh, the boy has been coughing again. The girl’s tummy hasn’t bothered her much lately.” That is-for me-a proper response to the question, “How are the children?”
But even years ago, telling me a milestone wasn’t an answer, I hadn’t asked, after all. I don’t ask, “So, what can your baby do now?” I know I blogged about the church mom who one day said, “*Pamela showed us last week that her baby can walk now. And look, my son has started…Walk, baby boy. And what about Bukhosi? Let’s teach Bukhosi how to walk.”
I told her, “He’s been walking confidently for two months already. But this is Sabbath school class time and so I never knew I needed to make an announcement!”🙄
Milestones are lovely-for the parents. But they aren’t what I personally use when connecting with others. I was super excited when my son started walking at eight months old but so what? It wasn’t some major announcement to anyone but his aunt who wanted to know how he was progressing. A church friend boasted about how she was a very early walker. But she’s not a very nice person. I’d rather she was that than an early walker.🤷🏽♀️
It’s even worse now. It started stinging when I’d take my now eight year old for assessments. We’d be sitting in the waiting room and another mom would be all friendly and conversational. She’d ask how old he was and then confidently state, “Poor you! He must be crawling all over the place and opening cupboards! Must be so hard to keep up with him, hey?” She meant well. But I was there because he couldn’t sit without support. Crawling was months away. She meant well. But it stung because it was a reminder that all was not well. It was the very ‘why’ for my presence there. To find out ‘why’ my son was not reaching milestones. Why he was so wobbly. Why things were bad.
Today, it’s even worse, being reminded of what is possible for MOST and the norm for most others. I have a nine year old who took her little sisters’ tongs to her bedroom and just snapped them. Broke them. I don’t know why. I find books in her room, pages torn out. I don’t know why. She laughs a manic laugh on purpose that sets my teeth on edge. Very loud and exaggerated. And I wonder, “Is this fetal alcohol syndrome showing its ugly head? I did ask her birth mom if she drank while pregnant on top of everything else she subjected my daughter to in the womb- the multiple abortion attempts that must have impacted her- and her response was, ‘Sis, I lived as if I wasn’t pregnant.’” It’s a concern. We see the psychiatrist on the 18th next month. This is money we don’t have much of, going down the drain. It’s things my children play with, being taken from them. And when I ask why she did it, why she damaged things, I get an almost irritated, “I don’t know!”
My very talkative twin has started smearing her stool everywhere. She has been potty trained. But this week, she’s gone off the rails for some reason and isn’t going to the loo. Clean ups are backbreaking and tiring.
I could go on and on. My eight year son makes no sense sometimes when he talks but expects an answer because in his head, he is making total sense. “But why shouldn’t I eat the muffin?” Yet there is no muffin and I certainly never said he couldn’t eat it (nor any other thing.) And he laughs when I ask what he is trying to say or ask about.
Yesterday, my not very talkative daughter hurt me. She was extremely upset but couldn’t say why. Even the words she was trying to say weren’t real words. It’s bad enough when she says ‘grapes’ then gets upset when I pull the grapes out because she actually meant to say ‘bread.’ But when it’s gibberish… “Pezel’ she will say. And she doesn’t mean pretzel. And there’s nothing specific she usually refers to with that name. So I’ll be lost. I’ll try a few of the therapeutic calming things we should try and they will fail. She will be angry. And things deteriorate. Yesterday, she threw a hard sippy cup with juice in it and it hit me. Hit my mouth. I told her, “No!” She then threw the other one, then her sister’s toothbrush then…And then herself. So I had to bend down to catch her before she cracked her head on the tiles. And my BACK!!
See, that’s the problem. I’m dealing with all this while not even well. I am living with many incurable conditions (even IBS isn’t something mild. I just don’t mention it because at least it won’t leave me disabled or dead like AS and my lungs.) It really is constant mental strain. Every moment my mind is either trying to solve a problem, wondering how to hide something, or causing me extra physical pain.
When I ask people how their children are. I mean it. I’m not asking, “What are your children about to do?” I’m not asking, “Where are you going this weekend?” I know the answers would only reinforce how I am alone (amongst my circle of friends) in my battles. But when I ask, people think that I want to know their movements, plans, activities.
I don’t. I really am truly concerned about the health. Mental and physical.
I’m the wrong person for the other stuff. I get reminded of what’s missing with every response that says, “I’m planning Tim’s birthday party. Sarah’s was last month..” Good for you. Your children can handle people, can make friends. Mine can’t. People cause them stress. Thanks for the unintentional reminder that our lives are very different, yours and mine.
Or telling me, “They’re fine. We’re off to ballet soon.”
Good for you. Your child has coordination and the ability to follow instructions. I’m breaking my back doing exercises to help my eight year old balance. Both he and his sister were asking me why they struggle to walk on a balance beam, why they keep falling off a straight line. But hey, nice for you that yours can dance.
I know they don’t mean to rub it in. But they do. They rub in every dream I had for my children that is an impossibility. Normality is not our reality . They remind me of every struggle I have and every freedom they with their typical children have. It hurt when my daughter asked why they can’t walk on a straight line. Seriously?? Even therapeutic activities remind them how ‘not ok’ they are. And that hurts my mommy heart.
And so, I will share this post. I know you mean well. But I’m the wrong person to share those activities or plans with when I’m not expecting it. It’s like telling me you’re going on holiday when I can’t even get my precious child to go to the shop. Nor could we ever afford a holiday nor feel rested with their challenges. If I was unemployed, starving, and didn’t even have food every day, would you tell me about the expensive cake you ordered for your husband’s birthday when cake is something I’ve not afforded in years? But if I ask you your plans for his birthday, then that shows I am ready to know that you’re eating while I’m not. And will celebrate with you in spirit.
That’s how it is when you tell me the oh so normal things your children get to do when I haven’t asked. Some days I am strong enough to bear the reminder that my life is full of disability while yours isn’t. Those days, when I’m strong enough to bear the reminder, I ask what your weekend plans are.
But on the days when I’m reminded of how limited Africa is for our special needs children, on the days I’m aware that I am only homeschooling special needs because I have no other CHOICE, it’s been taken from me, I can’t find a SMALL (less chance of her bringing viruses home) place for a non potty trained almost five year old, I can’t find a special needs school for my son that isn’t noisy, and all the strain results in more struggle for this dying body…Please don’t remind me of what I’m missing. I know your children go to school. My goodness, do you know how blessed you are that your children can COMMUNICATE? Please don’t tell me, “They’re fine. They’re going to school just now,” when I ask how they are. You have no idea what might have just happened, or is happening in that moment in my soul.
Maybe my child just hurt me and reminded me how desperately I need help and a break. I can’t take disability leave like other AS patients end up doing. I couldn’t even do bed rest right now with this chest infection because they are all home and with hectic needs. I can’t even send them for a walk because my littlest angel refuses to go anywhere. So much for the doctor who yelled at me for not resting.
Please just answer the question I ask. More than anything, I want your children to be healthy and that’s why I ask how they are, not what they are about to do or going to do. The activities? Those are extras and bonuses. And most days, I don’t need a reminder of that when I’m gasping just for air, wishing for their neurodevelopmental health.
Most days, I need a hug. My body is failing. It’s really frightening to be told by a specialist, “Well, there’s nothing more we can do to treat the lungs because it’s AS causing the decrease in function…Any virus or infection is a matter of life or death….Please purchase N95 masks. Ask the pharmacists for that kind of mask to wear in enclosed places.” It’s like a small death sentence- always living in fear. Worse now when I’m not even able to try slow the AS down because I’m sick. (No injections till my chest has recovered.)
But…My children are getting older and stronger and WORSE. I need a hug. Not a reminder that your lives are so unlike mine. I want to relate to you as a mom. Without the reminders that unlike you, I’m a special needs mom and you’re not.
I love you. And I do ask about activities when I’m able to bear it. Everything in your life matters. And so I ask for that one small mercy and thoughtfulness. That you answer only the question I ask, and tell friends like you, friends in your shoes, about the things mothers in your shoes get to do. Things I see slipping further and further away while moms like me do therapy and screaming and meltdowns and pain, wondering what will happen when the four year old child who hurt me is bigger, older, stronger than me.
Teens are interesting. And teens don’t want me saying too much about them, so I can’t. But suffice to say, they are..alive, stereotypically teen- like😅, very helpful, and battling off the ‘cold’ I gave them. Thankfully my teen son didn’t get it in his chest.
The other day I had to laugh. I was trying to rest- remembering the GP who reprimanded me last time for not staying in bed and resting when I had the chest infection. Next thing I hear, my teen son, “No, no! Mommy needs to rest!”
My talkative twin was having none of it. At the top of her very cheerful voice, she was shouting, “Mommy, are you sick!! You sick!??” As if she’s asking, “Mommy, did you see my surprise!?”🤣
In a lower tone, her not very talkative twin sister was doing her version of yelling and saying, “Knock knock! Knock knock!”
How could I ever keep them out? So I yelled-coughed that they could come in. At least my not so talkative angel came and looked at my face, pretended to climb onto the bed then decided I was boring and started playing around my room. My other one…She waved at me and just went straight for my exercise gear, a puppet and my dumbbells and started playing with them. Didn’t even come close to me!😅 They were prancing about and oh so energetic!
All they wanted was my presence.
Friday afternoon, Reo, my not very talkative angel, refused to go for a walk. So she stayed behind. Loved how she was playing with her siblings who stayed behind with her. She was just so HAPPY! And I loved how she recruited her siblings. She was playing with them!
Presence. Peace. Happiness. These are the lovely moments of my parenting life. When my children are regulated and happy.
It’s one thing being sick. My people and I have lived my terrifying lung infections before and heard the weird sounds. But we didn’t know that each sickness was making my long term prognosis worse. We didn’t even know I had any kind of prognosis. But truth is, people with interstitial lung disease with fibrosis live on average 3-5 years. Some live 6 months. So here I am, diagnosed, and suddenly, my clock is ticking. And I tried my best not to get sick.
When I saw the GP, he gave me Duplin breathing meds for my nebuliser. It’s meant to open up my airways so I can breathe better. He said, “and you can keep the ones you don’t use for winter.” I thought to myself, “You obviously have no idea how sick I am. I will finish these ten! Especially given I’m meant to nebulise three times a days! I really feel terrible! This is just the beginning and I came ‘early’ before the worst of the symptoms, only because my rheumatologist said I should. This is getting worse.”
I only have two left. But my chest is still wheezing badly and I’m still not sleeping thanks to bad coughing. So much for him telling me the meds would “stop your cough.” For AS, we have to lie down as flat as possible, not even using a pillow. (To stop the higher risk of us fusing in a bent position.) But I can’t breathe. It’s worse flat, so I wake up gasping and add a very thick pillow. But then that puts weight on my painful bones and I just can’t get comfortable. I’m in a nightmare! I’m so so tired. And scared. When will my lungs heal? What damage is being inflicted? When will the now very settled sinusitis heal? I’m going natural treatments for it on top of the antibiotics for my nose the pulmonologist gave me last year. Sinusitis is bad.
And being off ASAP treatment is BAD!
And the groups, the lung disease groups don’t help at all. I am scared to go in. Someone dies all the time. They’ll be perfectly healthy, get bronchitis (like me), go off treatment because the course is finished (I still have some prednisone and antibiotics), then get pneumonia because the actual bronchitis isn’t gone. and go into hospital and die. It happened last week. Or they get bronchitis and die. Or they get a lung infection and die within six months of initial diagnosis after hoping they’d live with the disease!
The group is proving my research correct. I wanted to plan my last days. I wanted to die in hospice, not at at home, and not in a hospital. Hospital brings no rest, no peace at all! And hospice would be able to manage my bone pain better. But the research journal I saw said that most of us don’t die from the disease progression, but mostly from an infection that suddenly comes up. And when treating it- where do you go? Hospital. It’s not like people don’t recover from infections so you don’t know in advance that THIS is the killer infection and decide to stay home. Plus..it’s painful. The chest is sore, you’re tired, you want help with your breathing. So though most want to die at home, they go in, and die in hospital.
The number of daughters, uncles and sisters and spouses that have come in to announce a loved one’s unexpected death is shocking.
Also, unlike many, I can’t have a lung transplant. So many members have HOPE. But I don’t. Thanks to AS restricting my rib movements, I’d not be a candidate for lung transplant. They transplant into healthy people.
Do you know how horrible that is? Being part of a group you’re not really part of? They have a positive (Well, the long term treatment etc is AWFUL. But I would do anything to be with my children longer) to look forward to. I don’t. Though once in a while, someone does state that the risks are just so high that they have chosen to die rather than try go through transplant. But it’s not the same. The choice has been taken from me.
I hope one day I find a group specifically for those of us who can’t have a transplant. But still, I won’t go in often. We keep dying.
I’m reading a book by the wife of an MND patient and she says something along the lines of how sometimes, “focusing on the positives” is actually a form of denial. That’s it!! That is exactly it!
This encapsulates exactly why I hate it when people ask me how I am, I tell them, and they respond with, “At least you…” Classic and real example. I told someone about my daughter’s rib. Her response was, “At least you know what the problem is.”
Lady! Knowing WHAT the problem is doesn’t solve the problem! That’s basically denying that there is a problem! It trivialises and minimizes the reality. And ..you can deny your own reality, but don’t ask someone about their life and then minimise the impact on them! And surprise surprise, knowing has not solved the problem indeed and it ever remains..a problem.
Please don’t say any “at least” statements to someone going through something. If they start to make their hair to chemo and it’s devastating, don’t tell them, “at least you can go buy a wig!” She will still be bald, wig or not! And wigs on bald heads aren’t always comfy apparently. And..it’s not real hair! It doesn’t sit like real hair. If she thought it was minor to be bald, she’d have shaved her head once in a while. She will come to her own place of acceptance in her own time. Let her feel it all. She’s living it after all.
Let’s rather just sit with someone in their reality. Ask them how they feel about it. Follow their lead. If they feel sad that their uncle-the only family they ever had in the true sense of the word-who had some degenerative disease has died, mourn with them. Tell them you’re sorry for their loss, don’t reply with, “At least he’s out of his misery now.” Believe me, she does think that too. But also, he should have never been miserable in the first place. And she loved him. She will miss him. His laughter, his concern, his phone calls. No number of “at leasts” will hide the days of silence. The loneliness of having no loving family -worse yet if you, Miss At Least, do have family and love.
Let the sufferers find their own silver lining. Live our reality. I’ve seen that happening perfectly in my breast ‘waiting for an answer’ situation and I am so thankful! There’s no minimising or denying, there’s instead, mirroring exactly what I’m feeling. There’s concern, wondering how the system is so not patient-friendly. Checking in. Getting upset with me.
The people who live your reality are the ones who will truly celebrate with you when your fears prove unfounded because they lived the fear. You will both truly be relieved if it was yet again, ‘just’ a cancer scare. Or they will mourn with you deeply, if everything goes awry. I’ve ever appreciated the friend who complains in an awed tone that I find positives when really, my situation (AS, lungs etc) is bad! We need more people like that. An ‘at least’ doesn’t comfort. Seeing our reality is comforting. An ‘at least’ means you don’t try to imagine what it’s like. You deny it yet it is too terribly real. Telling someone to focus on the positives will never cure the lived, day and night, reality.
Enter our world. Just as we enter yours.
We will be happy for each other just as much as we sorrow for each- only if we truly sit in each others’ worlds.
They said I should write a book 