I Still Don’t Feel Good

It’s been almost two months since I wrote: When Your Child Says I Don’t Feel Good. We were doing okay for about six weeks. But the complaints have started again. So I booked a follow up in person visit with our health care provider (HCP). She didn’t seem too concerned and didn’t suggest further tests. In fact she mentioned a couple symptoms, that the maiden didn’t have, that would alert her to further investigation. Since she didn’t have those symptoms she suggested a couple “over the counter” type remedies.

But guess what the maiden has been experiencing since the visit?

If you guessed the symptoms she didn’t have, that the HCP mentioned, you’d be correct.

  • Now is she experiencing those because they got stuck in her beautiful brain and now she is perseverating?
  • Did she feel dismissed by our HCP? Knowing the maiden and since it was our second visit I was a bit disappointed that she didn’t want to do any further investigating.
  • Is she really having those symptoms because there is something wrong and it was just a “fluke” she is now experiencing them?

I don’t know.

This is one of the most frustrating things about supporting someone with a complex disability, like FASD, when you have no informed professionals who can help you navigate what you or that individual needs.

I admit I reacted this morning before taking the dog out for his walk.

While I was driving to our preferred country lane to walk, I let the tears flow. I cried because I am so frustrated and feel so alone. I don’t feel like I have anyone to help and I don’t know what to do. We are told, and we tell others, we are the experts for ourselves and those we care for. But I feel this is out of my area of expertise.

Do I think anything is seriously wrong? No, I don’t. But do I really know? No, I don’t.

Once I settled in the walking, I started to think what can I do without help. I could phone the HCP office and let her know the maiden was now experiencing new symptoms. But I honestly don’t know what she will do for us. I felt dismissed by her at the visit and then later when I shared some links to further information I felt dismissed by the staff.

Should that prevent me from seeking medical attention? Absolutely not.

What I am trying to do is hold out until next week as we have an appointment with a specialist clinic for another issue. I think they may be able to assist us with the maiden’s current complaints as they fall in the same medical area.

Now don’t get me wrong, she is not complaining constantly and there are other ways in which she is acting that lead me to think it may be more anxiety based or being stuck in the house during a pandemic for over a year and not doing some basic health related activities we should all do to maintain optimal physical and mental health. But there is still that little, “what if I am wrong” … and that’s why I want to bring it to the attention of the two medical professionals we are consulting next week. Part of what they assist with is making referrals. And that seems to be something our HCP doesn’t like to do.

But what can I do to help me from not reacting next time?

As I was walking, I realized I reacted because more than I don’t know what to do, I don’t know what the maiden wants.

When I have something wrong, I may say outloud, I have a headache, but then I go and take an OTC medication. I’m not looking for anyone to do anything. I may say my stomach is upset, so I lay down or I go easy on eating for the day. I let people know what I’m doing and why, but that doesn’t mean I need them to do anything. Maybe I’ll ask if the maiden can make me a cup of tea. But that’s it. If it is a pain I am not used to or something unusual that I haven’t dealt with and it doesn’t go away, I make an appointment with our HCP. But I realized I have heard so many complaints over the years that have turned out to be nothing. Except for one in 15 years that I didn’t think was anything that needed attention, but it did. So I default to, here we go again. Not always. But once in awhile I react rather than respond.

So when I got home, I apologized to her for reacting. I told her I don’t mean to. I worry about her. But my reaction comes from me not really knowing what she wants and just jumping to the conclusion she wants medical attention. So I asked her if we could start something new when she feels sick or hurt or in pain to assess what is going on and find out what she needs.

Because if I say, what do you need (which I do) she says I don’t know.

She agreed to try it. Moving forward, when she has a complaint, if she can’t think to tell me what she needs, I will ask:

  • Do you need medicine? A band aid?
  • Are you telling me because you simply want me to know?
  • Do you need comfort? A cuddle, a blanket, hot water bottle, rest?
  • Did something happen? Are you worried about something?
  • Do you want to see our HCP?

Now I of course won’t grill her with these questions, and depending on what she says is wrong, I may only need to ask a couple questions.

I did speak of this type of enquiry in my original post (under Be A Detective) but the piece that was missing was letting her know that this is what we are going to do. And involving her. Providing an opportunity for her to be aware of her own body and learn different ways to respond, ask for help if needed and we both need to understand if she simply just wants to share.

Perhaps it was a reminder to me to remember to respond, not react. In one of the Facebook groups I’m in, someone said the following line, which I think is brilliant and I need to remember: Be active in your reaction but not reactive.

Each night I’ve been practicing a Metta ritual.

I focus this on my daughter each night. There is nothing more I’d like for her, and all of us, to be safe, be happy, be healthy and live with ease.

4 thoughts on “I Still Don’t Feel Good

  1. Ab says:

    I’m very sorry that you had a rough day and a rough past few weeks. It is very hard to navigate these challenges and you are doing the best that you can. I love the daily ritual and reminders you’ve provided for yourself. Wise words!

  2. Eleanor Bensemann says:

    Thanks for this. It is a hard journey we are on, and I believe you are absolutely doing your best in difficult circumstances. Hugs to you.