This is my contribution for International Stress Day. It was on the 4th for the USA and the 6th for the UK. I attribute my lateness for this post to, well, stress. Ironically.
Chronic ongoing stress seems to be a common theme in the special needs community.
I would say for me it is mainly due to "the system" and its flaws, or the actual physical dealings with my daughters diagnosis.
She herself is joy and light. I am honoured to be her parent and she is in my heart always. But this does not detract from the very real challenges we face.
For the last two weeks I have been awash in a sea of soiled bedding, used medicine syringes, manky used suction catheters and wrappers.
The other day my heel tried to absorb the cap from a nebuliser ampoule. I now get the standing on Lego hurting your foot reference.
I have spent countless days being promised call backs from various people, I have worked tirelessly trying to keep Amy's room tidy and clean only to find that several times a day it is refilled with dirty clothing, dirty bedding.
I keep seeing posts on social media about you don't HAVE TO do every job. But in our little world there are a lot of jobs that must be done.
I don't want infectious germs spreading throughout the house. I can't ignore medicine duties, not even for one dose.
If my child needs a shower, or suction, or a nebuliser, or indeed anything at all - it can't be put off until later.
It has been go go go all day everyday and then at night she begins the coughing and spluttering.
It is hard to stay calm and focused when you aren't getting any sleep. Every time she's quiet I'm on seizure watch. I'm thinking hmm is she dehydrated, will she need IVs, what if she's been off feeds for too long, what if we're missing something, what if she becomes septic. I find myself checking her resps, heart rate, saturation levels, temp, cap refill - anything I can to convince myself that she is indeed stable and that I'm not mismanaging all of this.
It's a hell of a lot of pressure on one person.
Two days ago we spent THREE HOURS waiting for a prescription. When we collected it only half of it was there so we had to return today for the rest.
When I got home we received her latest sample results only to find that actually she doesn't need to continue the antibiotics.
I collapsed back onto the sofa. Half pleased that I didn't need to continue the arduous process of making up these awkward antibiotics (they're those glass vials usually used for IVs, really hard to open and hard to mix up!). But also half disillusioned.
How had I just spent a whole week chasing results for tests, making all of those calls, panicking through the night, to find out that her c-diff toxins are now not active and that at this point she actually just has your bog standard (lol) case of gastroenteritis.
I don't know how I haven't cried quite honestly.
I am aching to the bone and my tension headaches are on the increase. I think I am in "doing mode".
Just working constantly through the issues right through until I can fall into bed. Annoyingly, I've been getting into bed exhausted to find myself staring at the ceiling for hours.
It's the stress. Replaying the days events.
Amy has missed school all week. She has this habit of sneaking an extra weeks holiday.
I have felt terrible for her. Almost every interaction with her has been to suction her nose (which she doesn't like), or to change her nappy (something she recently has taken great exception too), or any other number of interventions.
She has sighed with misery at feeling grotty, and I've sighed back, frustrated that in spite of my best efforts I can't fix things for her.
I've had to cancel and rearrange several appointments this week, and last week we missed some really good social events. It has been so disappointing and stressful.
The thing is. A month from now I will have moved on from all of this and be onto new issues.
Earlier on today I was lifting Amy out of her chair (only to discover BM #5 everywhere) and she had twisted her foot in and around her wheelchair base. I hadn't realised and pulled her harder causing her an injury.
She now has a red sore looking foot. I feel terrible about it.
Yesterday, I lifted her out of her chair to put her onto her bed, and somehow yanked her jejunostomy button out. She screamed in pain and surprise and I frantically replaced it as bile came spurting out at me all over the clean bedding.
I put her into her shower chair and wondered why my foot was suddenly wet. She had weed whilst I was taking the now soiled bedding up off her bed.
And it has been like this almost everyday. A catalogue of incidents and moments of despair. Everyday she seems to find a new and innovative way to cause herself harm. I am in constant fight mode ready to tackle whatever comes next. This comes at a cost.
I take medication daily. I see a counsellor as often as our life permits. I get out into nature as much as possible. I do everything in "the list" of things that you should do.
I have no choice but to be mindful in the sense that I am forever dealing with something, though I worry desperately for the future, and I hurt over things from the past.
I'd say at the moment we are going through a tough time. It scares me because last winter was especially hard for Amy medically and I fear history repeating itself.
I stayed up late searching for articles about the efficacy of prophylactic antibiotics. I stayed up searching for answers to problems that none of us know how to solve.
A few of my friends of having very similar issues to us at the moment. It's almost as if our lives are all running parallel.
I was venting frustrations at someone not returning a call (several times) only to find my friend was having the exact same problem but with someone else.
It seems that so much of our stress comes from things that are out of our control. I'm quite an independent person and I get very angry when I feel someone isn't doing what they said they would do, or they are preventing me from getting what I need to help Amy's quality of life.
I understand we aren't the only people in the world and that sometimes you have to wait. But there have been many low points the last few days where I've just felt like an annoying, nagging, neurotic parent, when actually, I'm not in the wrong at all.
I am already racked with self doubt and the way our system operates does not do much to dispel these feelings.
Sometimes, and this sounds silly.. I forget to breathe. I find myself suddenly taking in a huge breathe and letting out a big sigh.
When this happens in public people often retort "that bad is it?!" or "cheer up! It'll be Christmas before you know it!" and so on.
It just shows how much tension I keep stored up inside me. I have to remind myself to breathe. I walk a long counting my breaths to try and prevent the big sighs.
I often feel that tension in my back, or in my jaw as I clench and grind my teeth. I tell myself constantly to relax and to stop for a moment, but before I know it without even thinking, I'm back at it.
Everyday I recall that irritating phrase, "suck it up, buttercup". And I get up, dress up, show up, and do whatever it takes for us to get through the day.
She is 100% worth it and my reason for living, but I do wish things could be a little easier sometimes.
I know things could be a whole lot tougher too, and I have to hold on to that to remind myself that somewhere out there, someone is wishing to have the issues we are having.
As I remember this I take her hand, kiss her head, hold her tightly and soak in how lucky we are in so many ways.
Anyway. I could go on forever about these issues.
In fact, I can feel myself getting angry again as I recount all of this to you. Does any of what I say resonate? How do you deal with it? I'd love to know and welcome any responses.
Wishing you clean bedding, empty washing baskets, dish washing fairies, and good health.