Dazed and confused.

Today I had a fail. I had a wonderful day yesterday with my mum and sister. We had a roast, we watched the rave, we walked the dogs and it was lovely. It was also a lot.

Today Bella has a post op check up in Bristol at 3pm. But I got confused. It happens a lot more than I care to admit, and this was just a rather large example. I got confused with the 24 clock I think. Anyway, as I got to bath (over halfway) at about 1.15 and looked at the car clock I suddenly realised my error. Of course my first instinct was to check it against my watch in case I hadn’t changed it when clocks changed. I had. I’d just fucked up and left and hour early.

So I’m about to set off again to take Bella back to the vets. She was extremely agitated in the car so I’m really looking forward to doing it again.

It just happens that I’ve made such an error on a day where even blinking is causing me more pain. I mean it’s blinking. How fucking ridiculous. But it’s just a situation I have to accept. Bella needs her check up and I need to get her there. Tomorrow we rest!

I just thought I’d share, these are the little things that happen daily, though usually to a much lesser degree!

I’ll just tag on the end that we made it for the correct time and Bella passed with flying colours. She was devastated to have to leave out the front door and not get to go out back and cause mayhem. I, and my finances, were thrilled to leave via the cheaper exit.

Stubborn as a mule.

You know my biggest problem? I fucking think too much. All this time on my hands can lead to toxic thoughts. When I’m particularly unwell and unable to do anything I have nothing to distract my thoughts. Idle hands and all that.

From my last post you’ll see the toxic thoughts that come in and that they largely revolve around not being enough. Of course I am enough, I show up for my friends and family. It’s just in a different way. And nearly 2 years later I’m still not accustomed to that change. I fear that accepting my limitations and working with them will lead me to be comfortable in my situation and then lose my fight to be better.

There’s also a fear that lies within getting better. I’m scared of it. I don’t know what better looks like, I don’t know what path I’d take or how I’d want life to look like after being well again. I don’t want it to look like it did before, but that thought revolves around looking back with regrets and anger. It’s a negative thought process rather than the positivity of planning a future. But right now I can picture it. I just don’t see a future because I can’t see past the pain.

But I’m sick of being sick, that’s one thing I know with absolutely certainty. It’s not a negative thought, just a simple fact. I’m also fed up with the negative thoughts and the space they consume.

So I’m working on it. Im writing again and I’m trying to find something positive in this situation. I figured old ladies can knit with their eyes closed so surely I can learn to knit. It’ll keep my hands busy, it’ll keep my mind focused on something other than self deprecating thoughts and, if I can get the hang of it, I might produce something other than the misshapen swatches I have lying around. Perhaps a long misshapen swatch that I’ll refer to as a scarf.

I’m currently practicing the moss stitch. I’ve mastered the knit and purl stitch but the moss stitch is forcing me to remember what I just did. Much harder than one might think, but I’m actually enjoying myself. I think the purple needles I managed to work into a deal at Hobbycraft help greatly.

I largely have Darcy to thank for this positive step. Last year Han suggested knitting, knowing a friend of hers does very well with selling custom newborn cardigans. But a few weeks ago Darc took me to Hobbycraft and I was walking round and seeing so much that I could do. Like actually do! She was pointing things out too, showing me what I can achieve. Then hitting my low patch last week drove me to do something more positive and productive with my down time. Off I went to Hobbycraft on Sunday and I have barely let the needles cool down since.

The support and help that comes from my loved ones is so immense. To me what they give to me is immeasurable. They plant these seeds of positivity sometimes without uttering a word. The truth is I am constantly overflowing with gratitude for the help, love and support I get from those around me. It probably blinds me to what I give back to others because in comparison (in my mind) what I give doesn’t even compare to what I receive.

Funny thing about life, when you find yourself in a really rough spot you often become hyper aware of what others give to you. I’m a stubborn person, even now I am adamant I can do everything. I over commit and I try and do it all myself. I spoke in length about this with my mum last night. I was reminded that I need to accept help, stop trying to do things I have no business doing and be grateful for the things I can do. Giving examples of ‘I’d love to do that but at the moment it’s beyond me, but I can do [insert alternative here] instead’.

Of course not 2 hours later she found me trying to lug the big ass Kerby hoover up the stairs. In case you were wondering, apparently at nearly 30 you’re still young enough for a thick ear.

I think what I’m trying to say is I’m just a plain old vanilla human. It’s not in our nature to admit defeat, especially to a hoover. But we all have limits, and life is about working with them to achieve things. They don’t make you lesser. As Han told me last night, ‘not being able to help doesn’t make you redundant, it makes you human with limitations which we all have.’

I’m still learning my limits, and I know I’ll continue to try and push past them. But perhaps these little steps, like focusing on what I can do or asking for a little help now and then will help make my situation a little easier. Because I think, no, I know I’m the one making it so hard on myself.

Self-inflicted suffering.

There’s no instruction manual to life. We just make a series of decisions until one day our bodies expire. Then some people are faced with some horrendous situations and there’s no guidance to get you through.

I’m in one of those situations – without guidance – just trying to find my way through. But when you do something new without instruction you get some things wrong. I’m finding that while I try and teach myself to knit. It’s life, it’s how you grow and learn. There’s no shame in making those errors, it’s human. I have been making wrong decisions, based on good intentions or to try and make certain situations easier for myself. But sometimes, what might seem a small decision can actually have a huge impact.

My wrong decisions have largely been around hiding the truth of my suffering from those around me.

Doesn’t seem too bad, right?

For me I’ve been forced to accept its bad. When those around me ask how I am I usually say ‘I’m fine thanks, how’re you?’ Or ‘not having the best day but I’m ok’. In doing so, when someone offers to do something I’m left with three options:

1. Continue the lie and find another excuse why you can’t attend.

2. Back track, now tell the truth and in turn highlight that you previously lied.

3. Agree to attend and pretend you have absolutely nothing wrong whatsoever.

Of course the best thing would be to just not lie in the first place, so I’ll explain why I do this. I’m not a texter, I hate phones, however they’re great for a quick check in with loved ones. I often say I’m fine because I’d rather hear how they are and what they’ve been doing. My life is essentially Groundhog Day. 90% are the same, my pains always a minimum of 8 and often worse. My mind tells me that if I was to say this every time I was asked how I was, then I’d sound like a whining broken record. So I say I’m fine and push the conversation on.

If I’m having a catch up with someone in person then I do often tell a version of the truth but I don’t elaborate with quite how bad my suffering is. ‘Pain has been shit but hopefully I’m on the up now.’ Or I try to completely mask my pain, which is much easier on days where my eye isn’t drooping. If my eye is drooping then I try and make a conscious effort to keep my sunglasses on or hold my eye open wider. The main reason behind this is to protect them and also to protect myself. So often I have seen the hurt in the eyes of my loved ones, most often my mum when she has to help me get up out my chair, or when I’m in so much pain I can’t move, can’t think, can’t sleep, not hungry and most of all severely agitated. I try to protect others from feeling the hurt that comes with seeing someone you love in so much pain and there being nothing they can do about it. But also I protect myself from seeing their hurt because I carry that shit and I want to fix it but I can’t, because I can’t even fix mine.

I’ve often been called on this bullshit, usually by Han, who says ‘what does ‘I’m fine’ really mean today?’ Or a fellow HC sufferer and friend, Kathryn, will say ‘well that’s bollocks isn’t it.’ And I appreciate them doing that, I appreciate them essentially saying ‘I have the capacity to hear the truth’. I never wish to assume someone has the capacity for the truth or for any form of deloading because I now know what it feels like to not have the capacity myself. I’m also so consciously aware that my shit is the same day in and day out. They’re out there living life and in turn faced with so many changing challenges and problems and stresses that I don’t want to dump my shit on them. I’m forever in fear of becoming the ‘me me me’ friend.

Ultimately, by hiding my truth from others means that they think I’m capable of more, or it’s makes social interactions more taxing on me because of the energy used to pretend I’m fine. I don’t detail to others what doing too much truly looks like, I tell them I’ll have a rough couple days after and leave it at that.

You can force yourself to do more than you should and despite getting through it, you really shouldn’t have pushed so far. You see it with new gym goers or those returning after injury all the time. They try and jump back in not far from where they left off and then aren’t able to train for days or even a week. They might have completed the workout at the time, but they did damage in the process.

That’s essentially what I’ve been doing. Several days of doing things back to back like a normal, healthy person whilst simultaneously pretending you’re at peak health. I did that week before last – 5 days of doing things back to back, trying to convince myself I was fine. Each day getting harder to hide my self inflicted suffering but carrying on. Some of it I’d have done even if I was on my deathbed, but I didn’t have to do as much as I did. As a result it meant immense levels of pain that no amount of taking extra meds to get high would help with. I was also absolutely exhausted and pretending I was fine included pretending I didn’t have mobility issues and a blue badge. My extra HC pain is still ongoing, though I had a slightly better day yesterday, and today I’m finally able to walk and move properly. Or what my new properly has become over the last few years.

All the while I have suffered in silence and isolation, not feeling able to burden those around me with anything and not wanting to deal with any pity. That sounds bitter, it’s not pity really, it’s empathy, but sometimes I don’t know how to deal with it. And last week I had no capacity for anything. Bella had surgery Monday, vets Tuesday, vets again Thursday and has been on additional meds and eye drops since. Her dementia has her waking up to 6 times a night on top and the extra meds have made her sick.

Bottom line is I couldn’t cope. I was so overwhelmed with everything – pain, exhaustion, grief, guilt, sadness, anger – and then I isolated myself and couldn’t reach out to anyone without admitting I’d lied. And then the suicidal thoughts crept back in to try and lull me to a more peaceful place. All of this because I wasn’t honest with others, I didn’t accept my situation and the limitations that come with it and tried to push on despite the damage I’d done.

I know if I reached out to my loved ones they’d have helped, they’d have understood and they’d have given me a well deserved talking to. But I am fed up of being the sick one, the disabled one, the tired and in pain one, the unemployed one and the first-world-problems one. I’m fed up of feeling like I’m unable to show up and be there for others in the same way I used to be, but then needing them. It feels so unreciprocated on my part and I don’t know how to get passed that.

I’ve got a lot of therapy and writing to do to unpack some of what’s going on with me right now. I’ve written this so many times over the last week before feeling like I was anywhere near telling the real truth. That’s the thing with therapy and writing, you can scratch the surface, but what’s underneath can be so different and it takes a lot of courage to go there. And I don’t always have enough in me to do that.

I hope I can find the courage to talk to my loved ones directly about this. Right know I don’t know how and I hope, if they read this, that they aren’t hurt by my actions and that for now this is enough.