As we entered day three of my migraine marathon today, I’ve been thinking a lot about the impact that illness has on my household, and I thought today I’d share a little insight into just how fragile things can be.
We have a chain of command. Jack relies on me, I rely on Bryan for backup, and Bryan relies on me (to a point) when he is unwell. Thankfully Bryan rarely gets more than a cold, otherwise we would have some real problems in the short term!
Today I popped to the doctors to get some help with this stupid migraine, and aside from changing my prophylaxis, we didn’t get very far. The advice she gave was basically, we treat it as a migraine, but if it gets significantly worse or new symptoms appear, go to hospital. Of course, it’s Bank Holiday weekend, so everyone and their granny and the neighbour’s cat will be flocking to our emergency care hospital.
Of course, I can’t just go to hospital. Bryan is off work for the next three days, but Jack will also be here, and an A&E department is no place for a child. So if I can make any preventative measures to avoid going there, I will. I just hope it’s ‘only’ a migraine, and not a migraine masquerading as something else.
All mothers will know, we cannot be ill. But when a special needs parent becomes ill, it stirs a deeper, more morbid thought process. What if I do have something sinister? Something life-limiting, disabling, surgical, or otherwise debilitating? What will happen to my child? And, most disturbingly, what will happen to my child if I die? I have friends who are genuinely terrified for their child’s future and who worry every night about mortality, and the plans for the child ‘living in the aftermath’.
I am lucky when it comes to this. While my health is generally not the best, nothing I have is life-threatening or life-limiting. But there’s always the what-ifs. I rarely allow myself to go there, but when I do, it’s a dark place to be. I lost a friend to bladder cancer a few years ago. Another old friend was diagnosed with breast cancer a few weeks ago. It’s tragic, and it can happen to anyone. I’m not prepared for if it happens to me.
The other nightmare we face is, what do we do when Jack gets ill? Over the years, Jack has had ongoing respiratory issues. It follows a pattern.
- Day 1: Croup – usually lasts a day or two, sometimes escalates so much that Jack becomes very close to losing his airway. Treatment with Dexamethasone usually fixes it, but it doesn’t always prevent progression to the wheeze.
- Day 3-4: The Wheeze – often gets progressively worse over the course of a day. Requires a visit to A&E nine times out of 10. Treatment can consist of hourly inhalers, nebulisers and oxygen.
- Day 7: Chest Infection – if the wheeze is mild and does not require hospitalisation, it tends to be that it turns into a chest infection instead. Less common now, but when Jack was little he was on co-amoxiclav regularly.
Our issues tend to be when Jack needs to go to hospital. Hospitals are noisy, boring, busy and stressful environments generally. He didn’t like visiting me, and he struggles in busy waiting rooms when in the paediatric A&E. Thankfully, we have a friend in A&E who knows our game and takes us straight to the playroom so as to minimise stress. Generally though, everything stresses him. The noise, the flurry of activity, other patients, having his obs taken, having to stay in one place, poor iPad signal, oxygen masks, all the different faces…
Last time we had a pretty wonderful experience – we had a side room when the playroom got too busy, the doctors were nice, and we managed to find a way to get Jack to have oxygen without the mask being on his face continuously.
My biggest concern when Jack gets unwell is that, often, it is worse than it appears on the surface. Due to his sensory perception of pain being a bit squiffy, he often doesn’t feel pain and discomfort until it’s at crisis point. I’ve gotten better at detecting the signs, but he hasn’t got a glass skull – I can’t see and read his thoughts.
Generally, I’m grateful for Bryan. Before him, I coped with the regular hospital trips and my own ill health alone, and now I don’t need to. He’s there. Even if I keep badgering him for a cuddle because I’m hosting my one-man pity party today. Tomorrow I will be better – migraine or no migraine. I don’t have a choice. Tomorrow I have to be a good example, a good mother. Even if I do it all in a Hufflepuff baseball cap and sunglasses, I’ll do it!