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The Guilt of Being a Spoonie Parent

In my previous post I briefly touched upon all the unprocessed anger and grief related to my life as a Spoonie, and the ways in which being chronically ill has impacted my life and broken my dreams. But the one emotion I’ve never managed to squash down and avoid is guilt. Perhaps this is because guilt is more of a blaming myself emotion whereas anger and grief are blaming something outside of myself. It’s easier to beat myself up when I’m feeling worthless, than it is to feel justified in wanting more.

I feel guilty about so many things these days including, but not limited to:

  • my inability to work and the financial implications of that
  • the burden I place upon my husband (who is also chronically ill) to care for me on my worst days
  • how rarely I manage to do even the simplest tasks such as preparing a meal or washing the dishes
  • how often I have to change or cancel plans at the last minute due to ill health
  • how terrified I am of even making plans in the first place because of the point above

But the guilt I find the absolute hardest to bear is how much my ill health impacts my son. As a Spoonie Parent I have to constantly navigate the fine line between pushing myself to do something that needs to be done regardless of how I feel, and saying no to things I’d love to do because of how I feel. Parenting is pretty relentless, there are so many times when I push myself beyond my limits to meet the needs of my child. Which means that I often have to miss out on the fun things in order to rest or reserve my energy for the necessary things.

Just this morning, for instance, I had to let Little Man down by staying home as he and daddy head out for the day. Several times he tried to persuade me to go out with them, and when it became clear to him that I really wasn’t well enough to go out he tried to insist he should stay home as well because he was tired (he wasn’t, he just didn’t want to leave me at home alone whilst they went out). And for the briefest moment I truly considered trying to push through my symptoms so that I didn’t have to let him down, because the guilt felt overwhelming (as did the grief about not being able to enjoy a day out with my family).

But the reality is that had I gone out with them, they’d have had to considerably adapt their day as my symptoms increased. Because today I have woken up with my back in spasm yet again, despite taking muscle relaxants the past couple of days. I also feel sick to my stomach and I have stomach cramps. And the fatigue is wearing me down, even though I have been up less than two hours and have barely done a thing. I can barely function at home, so there is no way I could have gone out with them.

But no matter how reasonable my reasoning for staying home might be, the guilt is still huge. I don’t want to let my son down. I don’t want to miss out on a fun day out. And I certainly don’t want my husband to have to entertain our son all day and then come home to have to look after me. It’s not fair, but it is the reality of life as a Spoonie Parent. It’s the reality of my life, and it makes me unbelievably sad.  I know I shouldn’t be beating myself up about it, but I can’t help it. I look back at photos from when Little Man was younger, and it hurts me to see all the things we used to do together that we no longer can.

For the past 3 years, all the school holidays have been spent simply surviving. Little Man has Autism, and one of the ways that presents itself in his life is in a bundle of raw energy that needs to be channelled into something. Before I got sick I’d have planned days out, walks in the woods, play dates with friends, and even a games tournament at home. Nowadays we spend a large amount of time trying to find ways in which he can occupy himself whilst we rest, enjoying the tiniest snippets of time during our better moments doing things together, and then relying on family and friends to provide further entertainment for him. And it breaks my heart.

Don’t get me wrong, Little Man is generally a very contented little boy. Ask him how he feels at any given moment, and it’s usually happy. But I can see the disappointment in his eyes, hear it in his tone of voice, and sense it in his body language when I can’t do things with him because I’m too ill. He does his best to understand, caring for me in his own adorable ways, but he also has moments when he simply cannot understand and expects me to get better after a very short rest. Yesterday he even tried to “charge me up” by holding a cable to my leg as you would when charging a mobile phone or tablet computer, which was so sweet and funny that I couldn’t help but drag myself out of bed for a couple of levels of Plants Vs Zombies with him on the Xbox.

There is so much I feel proud of in my parenting of Little Man, such as the way I meet his emotional needs with the Autism and work with his school to get the right support in place for him there too. And I know that ultimately, despite how much I wish it weren’t this hard, he is learning huge amounts of compassion from a very young age. He is the sweetest, kindest, most caring boy you could ever hope to meet, and he is much loved by our whole community. I feel proud that despite everything we’ve been through over the past few years, we’ve created a home environment that has nurtured his individual needs and enabled him to bloom into the beautiful soul that he is.

And this is where things get really muddy in my emotions. I know I am a good mother. I’d go as far as to say I’m a bloody good mother. Which is why it hurts me so much to know that a) I am missing out on huge chunks of opportunities with my boy due to my health issues and b) I’m too ill to have a second child, consider fostering, or even just be the “cool parents” who are able to let their kid have tons of play dates and sleepovers, because they only have the one child’s needs to meet. I’m good at this parenting malarkey, I’ve always adored being around children (my mum became a childminder when I was 9), and my entire youth was spent dreaming of the day I could both work with kids and have my own.

I never imagined that my health would take such dramatic turn for the worse, effectively closing off so many doors to my dreams. But because it has, I have desperately chased different dreams over the past few years, trying to push aside the grief that was all too raw for me to feel. And I cannot help but wonder whether the choices I have made and the things I have done have directly contributed to how ill I am right now. Would I have been so sick had I not been so desperate to help other women avoid going through what I had and give new meaning to my life? Would I feel so guilty now if I hadn’t been so hell bent on fixing things in the past and instead just dealt with my emotions and embraced my life as it was? Did I waste the baby and toddler years, worrying about things I couldn’t change instead of just enjoying the years that flew by so quickly?

I don’t know what the answer is to any of these things. I imagine they are somewhere between a partial yes and a no, rather than a definite yes. But these are the things I think about on the hard days, when I have to package off my son into the care of somebody else, as I am too sick to go out and enjoy the school holidays with him. That boy adores me, and once he is home I know that we will enjoy all the little moments we have together completely and wholeheartedly. But right now? Right now, the guilt feels huge.

Learning to Live Life in The Slow Lane

As you may have guessed from my previous post, I’ve been feeling pretty down about things lately. In some ways this is a huge leap forward for me, as I have spent a lot of my life trying to avoid this kind of feeling. I haven’t wanted to become a victim of my life’s circumstances, choosing instead to find a positive spin for most things. And I’ve brushed aside comments from others along the lines of, “I don’t know how you deal with all of this,” because I’ve chosen to ignore the fact that my life is far from normal in many ways. But as helpful as this has all been in helping me to keep going through thick and thin, it hasn’t been very healthy.

Because my life isn’t normal. I suffer from multiple chronic illnesses that deeply impact my life, and that of my family. The constant fatigue, migraines, nausea, joint instability, and muscle spasms mean that I struggle with some of the most basic activities, such as taking a shower or preparing a meal. I can go days without doing either of these things, relying on my husband (who is also chronically ill) to bring me food and drink, and help me survive whilst stuck in bed. And on my worst days even lying in bed feels too taxing, as my heart races and my head spins.

Sometimes I know the cause of my most recent flare of symptoms, like a sudden change in temperature or catching yet another virus (having a young child makes this inevitable!) But at other times I have no idea what has caused me to go from functioning reasonably well to totally incapacitated, and I struggle with this aspect of my ill health the most. After all, how can I possibly hope to ease my symptoms and reduce the likelihood of another flare if I don’t know what the cause is?

This lack of control is deeply disturbing, and as a result I have clung desperately to the hope that one day (hopefully soon) I’ll gain a better insight into my health issues and figure out a way to get my old life back. But more and more I am realising that wishing for my “old life” is neither productive nor wise. Sure, it would be wonderful to no longer feel sick on a daily basis and be able to do more with my family and friends. And financially we’d be much better off if I could return to work and get out of the cruel benefits system that treats those of us who are ill as worthless (on a side note, it has now been over a year since my PIP assessment and I’m still waiting for a date for my tribunal hearing). But the point is I’m beginning to realise that I’m wishing for the wrong things.

 

Amanda sitting in garden

Instead of hoping to somehow miraculously recover from the worst of my symptoms, I need to be working on accepting where I am right now. Instead of focusing on what I can’t do, I need to look at what I can do. For instance, I’m currently creating a website for our church and, due to a combination of school holidays and this most recent flare of symptoms, progress has been very slow. My anxiety over this has increased the more time that has elapsed, as I feel like I’m letting people down. Yet multiple times this week people have reminded me that I’m doing something nobody else in the church can do, and even if it takes me several months to complete it will still be a very valuable contribution.

On a rational level, I can see how flawed my thinking is. I’m valuing myself on what I can give and not on who I am, because who I am right now feels like a complete and utter failure. But instead of feeling angry at the cards I’ve been dealt, I feel angry at myself for not handling things better. Instead of acknowledging the grief related to the loss of my health and the dreams I had for my life, I’m punishing myself for not making better choices. And by refusing to accept this as my new normal, I’m denying myself the chance to truly grieve.

But I want to be able to face the reality of my situation and begin to feel all the emotions that come with that. I want to readjust my measure of self-worth so that I can celebrate the small victories (like making it out of the house) without comparing them to things other people do. I want to love myself enough to know that it’s okay to be angry about all I’ve lost, without having to justify that anger and pain. Which is why I have chosen to rebrand the blog to reflect this, giving me the space to come and share my thoughts, feelings, and experiences as I begin to explore living life in the slow lane.

Amanda meditating in the garden

Because that’s where I’m at right now, in the slow lane. Everything I do takes much more time and effort than it used to. I’m no longer planning what I’ll do next week, month, or year, and I’m certainly not able to plan out a future for myself. All the media messages about doing and being more seem irrelevant to me (and make me angry, if I’m completely honest with myself), because I’m having to learn how to do and be less. And my biggest dream right now is to feel well enough on a day-to-day basis to simply potter around the house and garden, do a bit of crafting, and enjoy a bit of company from family and friends.

Life is suddenly all about the simple pleasures, and letting go of the big dreams that are no longer possible. It’s a huge change for me, and one which requires a lot of mental effort in facing the inner demons that scream “this isn’t enough” and “you don’t deserve this”. I’ve got to learn how to grieve for the losses and redefine my self-worth as a sick person. And I’ve got to accept that there truly is no quick fix for this, it’s a journey that I cannot rush. This is life in the slow lane.