Home » Spoonie Life

Tag: Spoonie Life

image of a toddler standing at the foot of a flight of stairs

Changing “I Can’t” to “I Can”

So often in life it is really easy to fall into the trap of focusing on the negatives, isn’t it? We see all the things that haven’t gone our way, all the things we don’t have, and all the things we can’t do. And it’s understandable, because life is hard. But changing your perception can have such a massive impact on your overall well-being, as I’m sure you all know. It’s why daily gratitude practices are so popular, and it also explains so many of the “you can do it” positive affirmations you find splashed across social media these days. But what happens when life knocks you down and you really can’t do it? What then?

image of a toddler standing at the foot of a flight of stairs

When Even The Smallest Things Feel Impossible

This is where I have found myself for the past couple of years. Chronic illness takes so much away from you, especially when it really impacts your ability to function on a day-to-day basis. When I first started getting sick, I was still able to work through the boom-and-bust cycle, and convinced myself that it was just a bump in the road. After all, I’d been chronically ill for years and had always managed to keep going or bounce back somehow. So I thought I just had to ride this wave out too. Except it didn’t work out that way this time, and I got increasingly more debilitated until even everyday actions such as taking a shower or washing the dishes became impossible most days.

All the planning in the world (and all the dreaming too) couldn’t change the fact that I was really sick. And coming to terms with the fact that I can’t do the things so many people take for granted has been an important step in my healing journey. We all have limitations and we need to respect them. In fact, I’m pretty sure that not respecting my limitations contributed to my becoming this ill in the first place. So I’d say it’s pretty crucial that we accept none of us are superheroes, and that some things are beyond our reach, whether for that particular season in our lives or because we’re simply never going to be able to do them. After all, even superheroes have limits!

Redefining Achievement

But what I’ve come to realise over the past few months is that even though there are so many things I can’t do, there are just as many things that I can. I just have to change my perception of what constitutes a “thing”. Washing the dishes or taking a shower may have once felt like everyday, normal things that didn’t even require any notice whatsoever. But now? Now they are achievements worth celebrating. They mean that I have not only achieved the act of doing them, but that I’ve also achieved a better balance in my life enabling me to be well enough to do them. I’m beginning to learn to live within my limitations, to accept the times when they are simply out of the question, and as a result I am finding myself more able to do things without such major payback. I’m beginning to crack the boom-bust cycle a little bit.

Don’t get me wrong, I have a long way to go with that. I still regularly push myself beyond my limits and suffer as a result. But it’s usually for a good reason, such as a family gathering, getting to church for an important service, or looking after my family when my husband is ill. But the key thing for me has been learning to accept that sometimes in order to do something I have to not do several other things. If I want to have a friend round for coffee, I have to accept that once they have gone I am going to need to rest in bed. I won’t be able to crochet or read or even watch Netflix, but rather I’ll need to lay down and really let my body rest. But if I refuse to fight the “I can’t” and instead look at what “I can” do I’m better able to see what I’ve achieved.

In the example given, I’ll have not only had chance to catch up with a friend, but I’ll have also made a deliberate choice to rest, which in turn means I can do more things the next day. By more things I mean I might be able to sit in bed and read or crochet, but that’s an improvement on being stuck in bed with major fatigue had I chosen to push through the day before and refused to rest. Sometimes even choosing to rest is an achievement! I don’t always get this balance right, of course, because there is so much more that I want to do. And it can be incredibly frustrating to sit in bed and look at a pile of clothes and wish I had the energy to fold them and put them away, or to hear my son playing in the garden and wish I didn’t have a migraine making the sun too bright for me to go outside and join him. But changing my perception from “I can’t” to “I can” is having an impact.

image of a woman stretching in bed, sitting up with arms raised above her head.

Celebrating The “Small Things”

It doesn’t matter what is happening in your life, whether you’re going through a tough season or are living your best life, I think learning to celebrate the small things can make such a huge difference to your day. There are so many reasons why you may feel overwhelmed, even when living you best life!! Deadlines loom, family needs battle for your attention, bills need to be paid, sleep exhaustion affects your ability to think clearly, the news is downright depressing… the list goes on. When we are so focused on the “big picture” of our lives, it’s hard to notice the everyday, little things that all contribute to our success in surviving this crazy thing called life.

The smaller things may feel like greater achievements to me because of how sick I am and how out of reach the bigger things are, but that doesn’t mean they aren’t still huge achievements to everyone else too. Simply getting out of bed after a bad night’s sleep or when faced with a stressful day ahead is a sign of huge resilience and is worth acknowledging and even celebrating. I’m not saying we shouldn’t celebrate the big things, because we should, of course we should. All I’m saying is that we all have bad days, and on those days being able to celebrate our small successes is so important.

Changing “I Can’t” to “I Can”, one step at a time.

If you’re struggling to think of something to celebrate today, have a look through this list and see how many of the things you have done. You might be surprised at just how much you have achieved. I’ve tried to make a list that works for as many people as possible, from those chronically ill like myself or raising young children (for whom getting dressed is a major achievement!) to those who never seem to stop! So some of them will be more relevant to you than others. I’ve tried to split it into themes for easy reference, but they are very loosely categorised, and there is a lot of blurring between the lines. And it is far from an exhaustive list, it is simply meant to help nudge you into celebrating the “small things” we often overlook. After all, changing “I can’t” to “I can” is an achievement in and of itself!

daily Living

  • Got out of bed
  • Ate breakfast/lunch/dinner (no skipped meals)
  • Made a packed lunch
  • Made it out of the house (on time)
  • Paid a bill/renewed insurance/dealt with paperwork etc

Work Related activities

  • Got to work on time
  • Answered emails/messages
  • Completed a task
  • Met a deadline
  • Dealt with difficult colleagues/boss/clients/customers

Parent Life

  • Got everyone up (and out the door) on time
  • Spoke to someone at the school gates
  • Made it to parent and baby/toddler group
  • Listened to your child read/practised spellings/helped with homework
  • Survived another crazy day!

Spoonie (Chronically Ill) Achievements

  • Got out of bed
  • Had a shower
  • Got dressed
  • Had a nap (yes, this is an achievement for those who need it!)
  • Visited a friend/had someone visit you

Physical Well-being

  • Got enough sleep
  • Drank enough to remain well hydrated
  • Ate a healthy meal
  • Did some exercise (physio practice/short walk/run/gym)
  • Made a healthy food swap (eg decaffeinated tea/coffee, fruit snack etc)

Mental and Emotional Well-Being

  • Avoided being drawn into drama (in the family/on social media etc)
  • Remembered to breathe through the tough moments
  • Turned off your phone
  • Read a book/watched a film/listened to music
  • Went to bed early

Spiritual Stuff

  • Meditated (or any other mindfulness practice)
  • Made it to church/synagogue/mosque/spiritual gathering
  • Read some scripture/spiritual book
  • Prayed/spoke to God/Angels/Spiritual Guides etc
  • Spoke with others about your faith

I’d love to know what “small things” you are celebrating today. Why not share them with me in the comments?


Brilliance in Blogging (BiBs) Award Finalist Logo for Inspire Category

I’m a BiBs 2019 Finalist in the Inspire Category. If you’ve found this post helpful I would really appreciate your vote here.

Voting closes at 23:45 on Friday 4th October.
Thank you!

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.