Perspective

Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content. Phil 4:11

Glass half full? Glass half empty? No glass at all? Or grateful that I do have a glass? When I think of the holocaust and how some concentration camps didn’t have cutlery and crockery so you had to find your own in which to put your once a day ‘water soup’ that glass becomes extremely precious. It keeps me alive long enough to hope for freedom.

Winter is here. And with it, even more pain. Washing my hair is painful in any weather, but winter means even light exercise is excruciating. Last week I couldn’t even do ten minutes of it. My knee and heel pain were too much for me to bear. Each step was torture. So I stopped, knowing that maybe another day would bring a bit more blood pumping through my veins.

Then my girl got sick. Or rather, she had yet a third skin infection. The word skin makes it seem trivial. But it was again as if she had been bitten by something and then the bite got infected. First, the red patch. Then the swelling and skin hardening. Then the pain. And the oozing abscess.

This time, the paediatrician also got the memo. Three times in less than a year just ain’t right. But what that means for us is that we all have to be treated. He thinks it’s staphylococcus that keeps affecting her. For those who don’t know, it colonises in the nose and skin. So on top of her bathing in hospital grade antiseptic and having oral antibiotics, we all have to have nasal antibiotics twice a day. All of us. If we had a domestic worker (aka maid) she too would have to do it.

This is where the glass question comes in today. I have to ensure that everything that comes into contact with her is washed daily. She can’t wear anything again. Not slippers, pyjamas, clothes, bedding, face cloth, towel. It’s winter! We live by the ocean! Everything is damp. Eve my salt shaker is wet! Things I washed on Saturday night are still very damp today, Sunday. Things I washed on Sunday are still wet. The drier we have is very slow and if you’re drying, you can’t wash as it’s a combined machine. I’m washing today’s bedding and yesterday’s towels, clothes etc.

My glass is half full. I have a washing machine. Our first few years married were torture. Washing things by hand when your fingers are stiff and painful is tortuous. Bending over a bath tub when you have arthritis, is horrible. I have a machine. I’m thankful. (But we’re running out of warm things for my girl. That’s the half aspect full aspect. I would definitely not complain if my glass was full.)

I am glad. Usually, my back would have been too sore for anything by 8am. On the treatment I’m on, it only gives up at around 11am. Only then do I want to cry from the pain. It could be worse! Today I haven’t felt like crying from the pain yet. And it’s 11:57am now as I edit. That’s good!

I have a glass that I’m thankful for. I was ironing Friday’s laundry. My shoulder hurts as I move the iron. My fingers don’t want to work well. My knees hurt. But, I was ironing in peace. And so we come to my other glass blessing. My girl is challenging. I won’t go into it all again, but ironing is not fun, usually. She tries to touch the hot part, she trips on the cord and j hurt my back even more trying to stop her from falling as she trips and the iron starts falling too, or she pulls me away wanting me to get her something to eat. But today, she played somewhere else. She left me in peace for the few minutes I could stand. She even left me in peace when I went to go boil water to make their oats. Usually, she’d be right there, crying, wanting to eat everything right NOW! But I mixed it up, poured in the honey and it’s cooling. And she doesn’t even know.

She was happy without me. She was happy in a totally different space than the one I was in. Bliss! For both of us!❤️

My other angel? The other twin? She too was happy without me. She has been extremely vocal about wanting mommy to do everything. She wants me to read to her, wants only me to feed her, wants to sit on my lap as I feed her, refuses to feed herself.. Wants me to put her to sleep, to put her in her room and change her for nap time. As she tells her teen sister when she wants to get her ready to bath, “No! Just mommy! Ella, just MOMMY! Bye bye!” But while I ironed and her sister finished off a past English exam paper, she took a clipboard and started drawing. Content. Content sitting next to her sister.

I am in pain. But I am in pain alone. I have space right now to go lie down on my bed for a few minutes while the children play contentedly without me.

As soon as I finish this, I’ll get up again and brave the pain. I do wish I had a domestic worker. But, I could not only not have one, but not have food either. I could be relying on others to supply that want. Given the ones I love most are also struggling, that would be awful. I know what it’s like to not have enough to give to someone who has even less. I would not want to be the one in need while they feel helpless and guilty.

My glass is full. I do wish I could afford to put my special angels in a special school like all the professionals who see them say. But look at the 17 year old overseas. The one who like my challenging girl, is autistic and non-speaking. They carved a swastika into the body of that poor Jewish boy while he was at school and nobody knows who did it. The suffering he went through is unimaginable. And he can never tell his parents who did it.

That could be my daughter. Suffering at school. Tormented. I’d gladly take all the challenges I face while caring for her and the rest and the house, than for her to be abused at school. So…I continue.

Thankful to have a glass. Thankful that there is something for me to drink.

Feeling Trapped

Today is a very, very bad day. I took my last Sulfasalazine tablets two days ago. (It’s meant to be four a day.) My stomach has been BAD. It’s like a terrible IBS flare up but with heartburn since last week, and trapped liquid since Sunday. I can feel and hear the liquid in my abdomen. It’s been miserable. Sulfasalazine has been known to “tear up” people’s stomachs so much that they stop it and are put on a different medication. (I wish the patients who mention this would be more descriptive. Is what I’m experiencing what they have experienced?) As I said before, the rheumatologist said nothing about expected or common side effects so I don’t know if this is it, or the HRT. Yeah, the gynae ALSO didn’t tell me anything. All she said the first time I went to her was that if tests show I’m menopausal, she can start me on HRT. She handed me pamphlets on specific HRT meds (None of which are the one she put me on!) and the pamphlets really were about reasons to go on HRT (Reduce osteoporosis, heart attack risk, hot flashes etc) and how low the increased cancer risk is.

But again, google says it can cause digestive issues. Whatever that means.

I went off the sulfasalazine first instead of the HRT because more AS patients mention the stomach problems than do menopausal women. Autumn is here, and my joints are screaming. They were crying when autumn crept in, but today, they are SCREAMING! My sternum is aching, my knees, fingers, feet… I am in a terrible place. I’d say on a scale of 1-10 I’m at an eight. The pain and fatigue are incredible. I wish I could press the weight of what I’m feeling on you (If you’ve never experienced it) so you could understand how much of a loving mom I am to still keep smiling and talking and hugging my children. If I could, I’d put myself in a quiet hospital where no nurse will come at night and ask to be sedated till this is over.

And my stomach issues are still not perfect. But I can’t handle today. Yes, the sulfasalzine has only reduced my suffering from AS, and I am only ASSUMING that not having any since yesterday is the reason why things are so awful today. Maybe they would be ANYWAY! But I’m back on it for now.

I wish there was a way to see inside my body and figure out what is causing my digestive system to be so miserable. I wish there was a cure for AS and all the other problems I have.

I wish I was ok.

Going to see if I have any prednisone left. It’s that bad. And taking prednisone in the afternoon is a recipe for lack of sleep tonight. But, I can’t take this. I hope to return with something more entertaining or edifying or educational. But for any other chronic pain sufferers experiencing a terrible flare up and out of ‘spoons,’ I feel you. No amount of faith takes the pain away. It just helps us to live it with grace.