Not a good day

Today, was not a good day. I had a flare up of a long standing stomach issue. I knew something was up when my tinnitus was bad, always a sign of imbalance for me. I also had a feeling of something in my throat. Then after lunch I felt really unwell, absolutely exhausted.

I pushed through and took the kids out for a walk. It was beautiful, my youngest was just starting to get digging with her spade in the sand when the heavens opened and it started to pour down with rain.

We ended up at the local cafe, where my children, hyped up on far too many Halloween sweets, drove me to distraction. Then my husband arrived. Then my mother and we decided to take the hyper ones home. As soon as I left the cafe the downpour started. By the time I got home I knew I was in trouble. The pain is awful. my stomach feels like it’s burning up inside, my lower abdomen feels like a cross between the worst period pains and food poisoning. My lower back is in constant, unrelenting agony. It’s not functional, it doesn’t change if I move, it just hurts constantly. A hell of a lot. I took to bed after the kids went to bed and slept an hour or two.

These episodes are increasing, they used to be rare, I don’t know the trigger. Sometimes I wonder if it’s high fat foods, or too much protein, or too many carbs.

I wonder if I have GERD or an ulcer, or h pylori. Or if it’s gallstones, just ibs, pcos, I don’t know. Nothing fits everything at once. But the pain. The unrelenting pain. It’s not like the pain from my connective tissue disease. But I know something isn’t right. I just don’t know what. I feel like I’m working through departments at my hospital. Trying to get my health back on track. And it’s not working. I feel like crying. I hoped the thyroidectomy would be my miracle. But it wasn’t. And I am tired of all the health issues and what ifs and pushing through life in pain.

I am tired. And I try to stay positive. A lot. I do. But wow I need a break.

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Thyroidectomy scar at 3 weeks

Here is what my half thyroidectomy scar looks like after 3 weeks.

Pretty good really. And my scar from the drain is OK. Still bruised.

I’m just really looking forward to this being all done. I know that I will need my thyroid monitoring every once in a while. But probably not every six weeks like it has been for years. Monday, hopefully, it’s over, all going to plan, it’s thyroid ticked off my list of things that needed sorting. I’ve been worrying about it all for years. I’ve known I would need the surgery and it’s hung over me, like a bad smell for a long time.

If I can just get my weight down for good, then that’s my next thing. Fitness, health. I’m quite frankly terrified they are going to tell me it’s not over. I want it to be. But I also want all the years of pain to have a cause. A cause that makes sense. I’m not sure that a benign thyroid nodule can cause the kind of pain I’ve had in my thyroid region, and my lymph nodes in the neck and collarbone region. And they haven’t gone away. I have to acknowledge that is something I’m living with forever. Or it’s caused by thyroid cancer. I feel conflicted and afraid the closer I get. The search for answers with chronic illness never ends. Obviously, I do have the undifferentiated connective tissue disorder. I have some major autoimme antibodies in my blood. But some of my symptoms never quite fit in. I don’t know. I’m just fretting. Full of frets and fiddle de dees.

I painted a galaxy rock but in watercolor and its not so bright as its like.

I should sleep. I’m tired and I have two children and a huge stash of Halloween sweets to keep me insane tomorrow.

Almost 3 weeks

So 3 weeks after surgery and I’m doing well. Recovering. I still have pain on the side that my thyroid was removed, while swallowing. A deep pain, but I don’t think it’s an unusual result of thyroid surgery. I will talk to my ENT about it when I see him next Monday. Unless it’s gone.

I still have some minor stiffness and my lymph nodes hurt around it. But again, all normal stuff.

The scar is healing really well. And I feel really positive about my follow up appointment. I don’t want to be thy girl saying its not going to be cancer and blindsighted, but I feel a good 80% certain it’s benign. Even 90% some days. I just had a feeling of, we’re good. No big deal. I mean statistics were always on my side anyway. So, I’m going in on Monday with my head held high (ish. As my neck is a bit stiff) and positivity.

Tomorrow, is Halloween. My 5 year old is a witch. He has a lovely dress and hat and my 3 year old is Dracula. She has a dress and wings. I’ve been promised extra hours at work so I’ve been working extra hard. And my son has really got into painting. I painted another rock, getting to get ready for Christmas.

But I’m busy and I like it that way. Although I did enjoy… No not enjoy but maybe appreciate the time spent doing nothing after surgery. I’ve not been truly idle in a long time. I’ve always been the responsible one. Always something that needed doing. For a few days I was able to let go off it all. It was weirdly therapeutic.

The clocks went back and messed up my children’s happy sleeping routine. And now the small one is back to a very grumpy self we haven’t seen in a while. And I’m not pleased. It’s exhausting.

I might try to take them for a walk tomorrow. If I think I’ll manage. The weather can be rough at the moment and I get cold urticaria of the wind chill is awful.

Kids are now sick

I thought I’d got away with it. It’s been almost a week since I started getting ill but no, my 3 year old is now ill too. Which means at least a week, maybe longer, of looking after two ill kids, while still trying to recover from surgery, a nasty virus and now a sinus infection. I cannot catch a break. Before surgery I had two weeks off a big vertigo/tinnitus flare up. So when I say I’m struggling energy wise, I mean it. It’s been weeks. One thing after another. It’s so hard to get back some wellness, when you can’t catch a break from it.

I mean surgery wise, I’m OK. Some neck pain, some stiffness, but recovery is as expected. Even with this virus, my voice has even started to recover a little.

I dream of being really fit and strong. I’m fed up of being ill. I want to run, and cycle and lift again. And I can’t do much at all. Its very frustrating. I wonder sometimes where it all started going downhill. I used to be fit and I used to have a strong body, even with my eating disorders. I feel a bit lost and tired. And sort of afraid. Today, I just felt heavy with a sense of bad things coming. And I figure if I wrote it down I could neutralise it. Nope. No bad things. I deserve happiness and positivity.

Up moments and down moments. They all exist together.

A photo from today near my home. It was an oddly sunny day, with huge waves crashing at the pebbled beach. If you looked out your window, it seemed calm, but it hid a turmoil of unrest.

My Now

This is what is all about. I need to work, but I have a little girl resting on me, she begged me to come and sit and snuggle. So I did. Because its all about this moment. For so long I cried and prayed for children, years of infertility and loss. And I wished to be here so much.

Yes, I’m ill. I made myself go out with the kids, we went to a garden centre for sorbet and a wander round the early Christmas decorations.

The latter wasn’t planned, it’s a little early for Christmas. It’s weird I keep dreaming that we suddenly realise it’s almost Christmas and we don’t have a tree. We panic trying to get one but never get there. Odd recurrent dream.

I bought a little box to send to my sponsored grieving family at post pals. And a couple of little things to go inside, so far. My 5 year old added a packet of sugar. I probably won’t be sending that, I just didn’t have the heart to refuse.

It’s so easy to get wrapped up in life and forget to breathe the now. We are not promised the future, whatever it brings.

Ugh

This virus is kicking my ass. I am wheezing and coughing and absolutely determined to avoid antibiotics. Not that I’m against them, but they start a cycle of illness for me, causing major stomach upsets, imbalances and then more meds and reduced ability to fight off infections o more antibiotics. So I’m hoping to avoid them. But not sure how that’s going to work.

Obviously, the surgery has set my immune system off, this virus is just yuck. It started with some aching, then a sore throat, then coughing, then stuffy nose. And I almost certainly got it from the hospital.

So this week has been HARD. I mean it was going to be hard anyway as I was still recovering, but adding illness has made it so much harder. Luckily my husband is off tomorrow and the weekend. Then working Mon to Friday and then off Monday for my results.

Today, I’m having an “it’s not cancer” day. There you go. I am finding it fun to just not think about it.

Incision is looking really good. Feels tight but that’s probably because I’m hacking up a lung. It can’t be doing the internal healing much good. But can’t really be helped.

On Connection

Being ill, and recovering from surgery I’ve not been up to the 100% super home educating mummy standard (insert laughter here) and obviously my children have noticed. But they have adapted well. In the weeks leading up to surgery, my health was suffering, and that meant less trips out, less home education groups, less walks to the beach. With daddy in charge it meant a lot of screen time, which is barely a part of our day normally. But it’s worked. And I reassure myself that it’s temporary.

In the evenings, when I want to just have a lie down, my 5 year old has been asking to do hama beads with me.

Of course he can do them alone, but he was watching me ildly doing them, and asked why I was searching for colours rather than adding random ones, like children do, and I said I like to make a pattern. So he asked if we could do hama beads together. In a pattern, while daddy baths the youngest.

I recognised immediately it was not about the beads but a bid for connection, as described by the gottman institute. So that’s what we do. Most evenings, for 20 minutes or so, we do hama beads. Together, we plan a pattern and work on it over a couple of days. So, maybe I can’t be the full energetic mother I want to be right now, but we can still connect. Those bids for connection happen in all relationships. And once I’ve become more aware of them, with my husband, with my children, with my family, I see them and recognise them and respond to them.

I was worried the connection to my children would suffer with me not being around as much. To me, connection is so important. We don’t punish in our house, we don’t have rewards and sticker charts, we rely on connection. Why do you do something for your partner, or friend, not family? Because you want to. You want to make them happy because you love them. It’s the same for children, they want to listen and do as you ask, if they feel loved and connected to you, and this means relying on a strong connection, built on trust.

Remembering to respond when they seek that connection can make all the difference to a child, even if bed is beckoning. Of course learning to explain that you’re tired and need to rest now, is also important. It’s a balancing act of connection and self care.

Below, from bids for connection