Shelter and Surrender

As you know, I started my new biologic injections a few weeks back. I’m not going to lie, it’s been hard.

The fatigue has come back with a vengeance and I keep getting new, weird symptoms and side effects. I’ve reached out for support from my healthcare team, but get a mix of dismissal, vague answers, very little reassurance, and painfully slow responses in return.

I was prepared for the fatigue, and I knew the medication wouldn't work straight away, yet the sting of disappointment still hurts. It hangs heavy in my chest.

You secretly hope that you will be the exception. However silly and naive that sounds.

You’ve had to make your life so small due to the illness, that each new disappointment feels claustrophobic and suffocating.

This grief feels like a homesickness, a longing, but you don’t know where you need to go to soothe it. A place that no longer exists, a body you can’t call your home anymore.

How much time are you expected to waste waiting in this suspended fog?

You wish that once, just once, something could be easy…

It’s the strangest feeling injecting a new medicine into you and knowing it has such wildly different results in each individual- you sit there paranoid, waiting for the first sign that it’s entered your blood stream- dizziness, a slight itch around the injection site, a redness, spreading redness, a wave of nausea, a pain here, a pain there- you don’t know at this point what you are just imagining, what is anxiety, or if it truly is the medication, or perhaps just another symptom of your disease.

This medication feels like a miracle and a poison all in one.

Once its in you, you just have to lay back and hope that it’s going to get rid of the thing that has been ruining your life.

You feel utterly vulnerable- thinking it’s in me now- there is no turning back.

You just have to sit back, wrap yourself in a blanket and pray that everything is going to be ok, or at least not get any worse.

The horrible realisation washes over you, that you have very little control over your life or your body. Maybe you've never had it.

Anxiety and depression start to come back and the constant fight to push them away takes the last ounce of strength you have in your body.

I’ve had to retreat back to my bed again for most of the week. I have flashes of unhelpful thoughts like Returning to my bed feels like a failure.

It took me two long painful years to gather the strength and knowledge to get myself out of this bed on a more regular basis. Building up strength so slowly over time that you don’t realise what a mighty achievement you have made until it’s taken away again. The weight of that retreat feels so heavy.

You feel like a hapless spectator; life moves on with or without you. Back to being ghostlike again. Wondering if this is what purgatory feels like?

I don’t even want to make plans further than the same day, because it feels too disappointing to have to cancel them.

I'm feeling like this tree- hanging on by thin roots, resting on a cliff edge. The soil around it eroded, raw and exposed. Relying on the protection of the sturdier trees around it, sheltering it from strong winds.

One more weird symptom, one more dismissal or disappointment, one more cancelled plan, one more day spent in bed in isolation, begging for scraps of joy and the bough may break.

Yet despite all these problems, I keep looking back at that picture of the tree and I find a glimmer of hope.

At first, I focused heavily on it’s bare roots, the eroded soil, the precarious angle of its tree trunk. I concluded that the tree was doomed.

Yet….I forgot to look up.

Look at the canopy.

Despite all that it has going against it- it’s still sprouting new foliage. In fact, it looks fresh, green, vibrant, strong.

I’m always surprised by nature; plants, animals, life itself- it’s determination to survive, to keep going, even when it looks like everything is against it.

Sometimes it just takes looking at something through a different lens to notice that there is beauty hidden there. You just have to look for it.

There is beauty in survival.

And that’s exactly what I’ve been trying to do these last few weeks.

Look for the beauty.

It’s taking all the energy I have left to look for it, but what else can you do?

I’ve reminded myself that the last two years of gathering knowledge and strength have not been in vain, despite having to retreat back to bed.

Things are different this time around;

I know now that things are only temporary and things can change

I know that I am strong enough to get through this next hurdle because I’ve had to countless times before, the only way is through

I have a network of people around me that understand and want to support me

Retreating back to bed doesn’t mean failure, it’s just giving me time to gather my strength back

I’ve had to just surrender myself to the process; rest, take shelter from the storm, rely on those around me, accepting their support, letting go of ‘control’, releasing emotions, being honest with myself and those around me, trusting that everything will be ok, focus on the beauty that surrounds me.

I allowed myself a day or two of mourning; of feeling scared, sad that I’m always missing out, of feeling anxious, crying, being angry over yet more cancelled plans, staring at the blank walls of my bedroom in utter desperation.

I learnt that this time to mourn is equally as important. To let the grief run through you. Otherwise it gets stuck. It takes more energy to hold it all in.

I thought giving into these thoughts would break me, but surrendering myself to them is part of the healing process.

But I’ve also learnt that you can’t stop there forever. You can’t continually stare at that tree and be worried that it may topple.

You also have to look up. Actively search for the beauty, the joys, the tiny miracles to keep you going. Grab life while you can.

Remind yourself why you’re fighting so hard to stay alive in the first place.

What is keeping you going? Who do you want to fight for? What makes being a human on this planet so precious and something to celebrate despite all the pain?

So i’ve started to make a list of joys. No matter how small or inconsequential they may seem to others, if it’s made me feel even a tiny jolt of joy, it’s going on that list. I'm clinging onto these for dear life, like those tree roots in the soil. If I don't, I will not be able to stop myself from falling.

Here are some things I have on my joy list so far:

• The way my husband kisses me on the forehead every morning before he goes to work. Each day, without fail, making me feel safe.

• My books! Not sure what I would do if I couldn’t get lost in my imagination.

• Hot chocolate, with cream and mini marshmallows in my favourite mug

• My Auntie sending me photos reminding me that someone is thinking of me- the murmuration of starlings, my nephew baking cookies, Willow the black lab sniffing in the grass. It all helps.

  

• The kind smile of my delivery driver dropping off my meds. The look of genuine empathy in his eyes when he says ‘please take care, I hope you have a good day ok?’.

• When my kindle sleeve arrives- the creator had put a cute note in it and included a free keyring. The attention to detail and knowing someone has hand made it and packaged it with such care fills me with gratitude. Look at the little strawberries and bunnies 🥺

• Looking through all the lovely comments on my blog!

• I finally finished a short story that I have been working on and I’m really happy with it.

• My brother sending me cute pictures of his cheeky cat Louis; look at that fluffy belly and soft squishy toe beans.

  

• The way my husband texts me at lunchtime to see how I’m getting on. It's nice to know someone is thinking of you.

• Managing to go out for short slow walks on the weekends- seeing blue skies, frosty tipped reeds, watching kites and buzzards soar, and hearing, for the first time, a great spotted woodpecker; it's pecking into the bark sounding like a creaky tree in the wind.

  

• Snuggling up on the sofa, duvet wrapped around me, fresh PJ’s on, watching re-runs of my favourite shows.

• One of my local bookshops has started a surprise book subscription service. My first book came through the post, all beautifully wrapped 🎁

  

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How about you?

How did you feel when you first started a new medication? How did you cope with the side effects? How do you get through a setback? What has been on your list of joys recently? What keeps you going through all the hurt and disappointments?

I’m taking the next week, maybe two weeks off- depending how my energy levels go. I feel I just need some time to hunker down in survival mode and just totally rest. Apologies if I take a little time to reply to comments. I do appreciate every single one that I get.

Sending you all healing thoughts.

Lots of Love & Hugs,

Amanda x