Month: November 2022

Do you ever wonder if something that affects you, affects others in the same way? Well, I am.

So I bought a new duvet – which in itself isn’t something I like to do. I have to have a ‘silent’ duvet, not one of those duvets that rustle. It can’t be feather, because they don’t smell right and the feathers move. My duvets need to be uniformly stuffed, so as there is no bunching – just an even distribution of the weight. Also feather ones always rustle. I’ve also never used anything above a 4.5 tog, loaded with a blanket or two when required in the winter. Said blanket or two hasn’t been cutting the mustard so I had to cave and buy a 10.5 tog, non-rustling, evenly distributed duvet.

Anyway, then comes the second hurdle. When I was a kid my parents bought my sister and I 101 Dalmatian duvet covers. It ended up that they both became ‘mine’ because I couldn’t sleep with a different cover. And I did mean couldn’t and not wouldn’t in that sentence. It ended up that I used these covers well into my teens because of this. In case you hasn’t noticed change in my routine or just change in general isn’t my strong point. It’s like a comfort blanket. But I’ve carried this issue into adulthood. Perhaps once every 2-3 years I buy myself a new duvet cover set. It’s not an easily made purchase, it has to feel right and look right for me to even consider the purchase. Once I buy one and commit to using it that is my only duvet cover. In my mind at least. The previous set gets moved into my bedding/towel storage ottoman, which in truth is actually their final resting place.

I ensure I have my bedding washed and dried within a day and usually find myself making my bed right before I get into it. Because I won’t indulge buying two of the same set. That would be a waste of money because I know I’d only use one of them. I’m the same with sheets. Previous victory purchases get sent to their grave in the ottoman and I simply wash and use one sheet. Despite having around 4 others in the ottoman.

The specially selected duvet arrived yesterday afternoon and I really wanted to use it. Unfortunately I didn’t want to sully it by putting on my duvet cover without washing it first, so I opened the ottoman. I pulled out my previous duvet cover, exhumed it if you will. It didn’t feel right but I really didn’t want to wake up cold, or worse, severely overheated after falling asleep with my heated blanket on again. So I gave in and put my new duvet with my old cover on the bed, ready for a nice warm sleep. I think I woke, that I remember, at least 5 times. I just didn’t feel right or smell right. I felt like I wasn’t in my bed, I wasn’t comfortable and had this really uncomfortable sickly knot in my stomach. I used to have it if I tried to have sleep overs – they’d always end in phone calls to my parents late at night to collect their crying daughter because she couldn’t sleep because it wasn’t her bed. So she didn’t feel safe and comfortable. It was this all over again, minus the tears.

And I wonder if I am the only one that deals with this? It does get worse too. My sheet has to be TIGHT. No wrinkles, no loose material, no folds. I have a sheet strap, which is essentially 8 stops of elastic with clips that pull the sheet right underneath the mattress. I can also feel if theirs is the smallest spec of something too and I have to get up and brush down my entire bed until I’m certain it’s clear. Also loose pillow cases are a sin. All that loose material around my face trying to suffocate me – not on my watch!

I know this isn’t my usual stuff, but I said I’d share what I write and what I write is often a surprise to be. But it’s also a way for me to dig deeper into my mind. I often find more comes out by writing and then I can take that to therapy. I don’t know if this belongs in therapy, but apparently it’s on my mind after a broken nights sleep.

I haven’t written once in my journal since last week but I had therapy yesterday and so I figured maybe it was time to put some thoughts down.

It’s been a rollercoaster. Last Wednesday I found Bella had a couple of tumours in her mouth, one covering a tooth and so she wasn’t interested in eating anything other than rice. My vets couldn’t give me a set price for the operation. She needed a scale and polish and possibly an extraction or two and so the cost was going to be unknown. So I decided to take her to animal trust in Shrewsbury which was roughly a 3 hour drive, but meant a known cost. So we did that Monday. Somehow I managed to leave at 5.15am and survive the drive alone, with Bella protesting from the back. I thought of booking an air bnb but decided that if I was to drive back the following day when I’d already be feeling terrible I’d just be prolonging my suffering. So mind over matter kicked in, as it did for the first drive and I finally got home just before 11pm. And I am still suffering, which was totally to be expected. And for Bella, it was totally worth the consequence. Her teeth are gleaming and the tumours were resected as much as possible and she’s eating again!

But I’ve also noticed, aside from feeling like poo, that I am becoming a little less detached. By body is telling me what I’m feeling again, albeit gently, so I can acknowledge and act accordingly. For instance, I am exhausted and in a lot of pain. But I am also aware I am in a state of restlessness and feeling a little lonely in my suffering. So while my body and head are telling me to stay in bed an wallow in self pity, I’ve heard the restlessness and loneliness warnings and acted on it. I took my dad for lunch Tuesday and spent some time with Darc before therapy yesterday. Little things to break the feelings of being alone. More like just a distraction but it’s working. Today I have dinner plans with Est after some time cuddling Bella now her breath of death is gone!

I appreciate my body and mind for allowing these feelings to be known again. It’s these little warnings that give me a quick boot up the arse. In my situation it is very easy for me to lean into the darker spaces of the mind and soul. It’s easy to say to myself it’s ok, you’re justified in how you feel. And it’s true – the dark feelings and thoughts are justified. I can hear them, respect them, and choose to do something about them, regardless of how much pain I’m in or how exhausted I am. I choose to ensure I feed my soul with the good stuff to help balance the darkness of my mind

And while that was a little essay of moaning about having to push beyond my limits on Monday I must also remind myself that it was a victory. I got Bella the care and treatment she needed within less that a week of finding the tumours. I managed to pull through and give her what she required of me on that day. I did that. I didn’t do the sensible thing and ask for help. Some how with Bella I have always managed to push aside my own suffering to fix hers. And I did. And so that was a fucking tremendous victory.

My car required rear brakes and so to help me with the surgery costs, my dad offered to let me use his car to take Bella to Shrewsbury. He then also offered to pay for my brakes, and surprised me by also getting the car serviced while it was in. I’m truth I was drowning in panic when I saw the vet and realised I’d have to use the money put aside for another impending operation to Bellas eye to now fund a totally different operation. Choosing to use this money was not easy, I felt so conflicted because it was for vet bills but just not this particular one. But that’s the thing with having pets – like us surprise health issues crop up but they don’t have the NHS. They rely solely on us, their family, to protect them at all cost. Dads offer of help truly eased this panic, because I then didn’t have the added pressure of using even more of her vet bill money on a car. A car that I shouldn’t even have anymore. It was a chain of family helping family. I, jumping to Bella’s aid in whatever she needs and my dad for then easing the burden on me.

There was also the added bonus of getting to spend some time with my brother, sister-in-law and their children on Monday. Their friends opened their home to me, a complete stranger, so I had somewhere to rest and recharge while I waited all day to collect Bella and travel home again. The wonders of human kindness shown to me that made my day just a little bit easier and therefore allowed me to be able to drive home again on the same day, though they did offer me a place in their home for the night if I needed it.

Humans truly are wonderful and this last year and a half has shown me just how true that is. In my time of need friends, family, strangers and acquaintances have shown me kindness, love, support, generosity and selflessness in whatever way they can. Purely from the good of their heart, to make my journey of suffering a little brighter or a little easier, even if just for a moment.

I’ve just returned home after taking Bella for a walk into the field. I didn’t feel like it, my body protested with every step but Bella needed it. And it turns out so did I.

I’m exceptionally fortunate to have acres of open fields opposite my front door. There are plenty of entrances and paths between fields that allow the walk to be as short or as long as I’m capable of. I got back from my fortnightly job centre appointment, grabbed Bella and headed straight off.

It’s sunny here today, though what we British call a winter sun – paired with a biting wind to push you onwards.

It was beautiful. The low sun glistened off the blades of grass, still wet from earlier rain. I wore a coat, undone, with a thin tee so I could feel the wind whipping against my skin and through my hair. A gentle reminder that I am alive and still able to experience the privilege of nature. Taking deep lungfuls of the fresh, unpolluted air that smells of rain, wet mud and trees.

I found an area that was mostly dried by the sun. A perfect spot for me to kick off my boots and socks and feel ground and the grass beneath my feet. All the while watching Bella. In her element, kicking up as much grass as she could, with her huge toothy smile and her face turned up to the sun. A quick sniff and scout until she found another patch of long grass to kick up as she’s always felt is her duty.

I even got to watch a low flying Hercules, which from my angle was dusting the tops of the trees a few fields along. Listening to it hum alongside the birds signing soprano from the surrounding trees. Hearing dogs bark off in the distance, out of sight. Acknowledging in that moment that the whole field around me was just mine and Bellas. A great open expanse of beautiful greens and ambers all to ourselves.

My blog can get a bit dark as are many of my days. But I wanted to share this walk with my readers, and my future self. A gentle reminder that you need only step into nature to feel deeply cleansed of whatever burdens you. Even if only for a short while. A moment where you feel alive and vibrant, the energy of the sun and the wind doing it’s very best to feed your soul. You’d be surprised how grounded kicking your boots off can feel too, once you get passed the thought that a dog has almost certainly peed on the grass you’re wriggling your toes in. Push that thought aside and just breathe deeply of the fresh, unpolluted air and know that in that moment you are safe, you are ok and you are surrounded by things, and Bellas, to be grateful for. I watch how carefree and present Bella is in these moments and I will always try to practice the same.

Today wasn’t a walk. Today was a meditation.

It is a burden, I’m saying, to live where I live.

Tess Gallagher

This was a word I used in therapy last week to describe how I feel about my condition and my situation. It was towards the end of the session and I told my therapist I’d write on it and see what came up. I have therapy tomorrow and I’m homage to my younger school years, here I am doing some last minute homework.

I’ve said a few times recently how detached I am feeling, numb to my situation for the most part. And I know it’s a coping mechanisms, it’s my minds way of saying there’s so much going on here for you to process and cope with. To many emotions, mostly I think.

I know that I want to see this journey through its natural course. If I were to be able to wind back time and not get the vaccine I wouldn’t. I have learnt too much from this journey, that I otherwise wouldn’t have been able to as I wouldn’t have had all this time and space had I not become ill. That being said, if someone offered me a magic fast forward pill to a time where I am healthy and well, truly living, I know damn well I wouldn’t be able to resist the temptation.

The truth is I am bored. My situation has led me to have a cynical mind. Everything I do is a balance of consequences. If I do that, that’s going to increase my pain for this long – Is it worth it? For instance I went to a classic car show at the NEC Friday. I rarely do anything like that, because of the consequences. But I just really wanted to go. My dad and I do two or three car shows a year and that’s always been one of them. I wanted ti be normal for a day. But I know it would cost me dearly. I took my walking stick, but it was still the best part of 6 hours on my feet, keeping my mouth shut about how much agony I was in and popping an extra pill halfway. That being said I really enjoyed it. But I am still paying the price today, Tuesday. It was a decision I had to make – was I willing to pay this price?

For most people life it’s a choice or balance of consequences. It’s a I want to do that, I have the time to do that, so I’m going to do that. It’s not always that simple, I’m aware, but that’s the general gist of normal plan making. Mine is that I want to spend a few hours having coffee with a friend, I have the time to do it, but it will cost me the rest of the day and possibly some or all of tomorrow feeling like someone is dragging barbed wire through my eyeball and out my ear, whilst simultaneously hitting the base of my skull with a rock. I know, I came to the same conclusion as you – the coffee is worth it. Genuinely, it is. Because of what I gain mentally from spending those few hours with a friend. Those few hours where I can push through and pretend I’m normal and not in pain.

But I am bored. I’m bored in the usual sense of spending so much time doing absolutely fuck all. But I’m also bored in the sense of I’m bored of having to play the game of balancing consequences. I’m bored of having to be so cynical when someone suggests coffee. I want to be like ‘fuck yeah I can’t wait to see you!’ Not internally having to be like is that going to be worth the consequence, what else do I have on that same day or the day after, which would I rather do because I probably can’t do both. It’s so shit. It’s hard to be positive when you have to think of life in that way.

So yes, what I am going through has become a burden. And I know it probably has for those around me too, because I just not a beautiful ray of sunshine a lot of the time. I’m a little stormy rain cloud. I think this is why I’m feeling so detached, why my mind is trying to protect me from feeling this all the time. Because if I allowed these thoughts and feelings to run freely I don’t know if I’d cope. I don’t know if there would be any coming back from the place they want to take me.

On Friday I had a lovely day. It wasn’t my best with my head pain but I spent a lovely afternoon with Darc just relaxing and catching up.

After, I knew my mum needed a few things from Tesco and as I was out I offered to get them. By this point I was in a lot of pain but it was just a bottle of milk and a few pots of soup. Nothing wild. I’d picked myself up a coat from upstairs and went in search of the soup. I ended up with 3 tubs because I’m indecisive and headed to the milk. Picking up a couple of pints and slung it in the basket.

It was at this point I knew I’d fucked up. I had to carry the basket with two hands, clutched to my body with my back leaning backwards with the weight. Yes, the weight. Of a few pots of soup and some fucking milk. I felt so humiliated to be struggling so much with so little. I waddled my way to the till and unceremoniously deposited the offending items to the conveyor and loaded them into a bag. For ease I put the coat on, then grabbed the bag like a normal person would and realised it was still too heavy to carry like that.

So I hefted up the bag with both hands, clutched it again to my body and waddled to the car, where I fought to get the door open with no free hands. I finally succeeded, depositing the bag to the passenger seat then dropped into the drivers side and I wept.

I was so deeply humiliated, facing defeat by what was literally just a few items. I know they weren’t, but my mind was telling me that everyone was watching, judging, not helping. There was a time when I wouldn’t need a basket for that few items, a time when it was the sort of weight i could swing from my pinky finger and barely notice it there. It was such a shock to realise that some soup and milk was the undoing of me.

I don’t often do the shopping as I can’t make it round the supermarket for a full shop. If I’m out I often pick up a few little bits we need, but nothing more than a bottle of milk or a few salad bits or veg. I think because of that it came as a huge shock that I was struggling with so little. It just brought reality crashing down and slapping me in the face. There are things I make allowances for to help me cope that are just second nature now. Like I know if the kettle or filter jug are above half full then I need to use both hands. But I tend to do that anyway as my coordination has been impacted by the drugs I take and I get the shakes. I’ve scalded fingers a few times, enough to introduce measure to make me safer. Like using both hands. But I don’t even think of these allowances I make anymore, they’re second nature.

And then I go and pick up too much in Tesco and reality hit me and suddenly my mind is reminding me of all the little allowances I have to make that prevent me from seeing just how much I struggle.

I’ve kind of become numb and unresponsive to my life and the things I write about. And then something happens that makes me see and feel it all, there’s suddenly no more hiding. It’s a bitter pill to swallow.

My reality was brought to light at the end of last week when my friend Ricky wrote my letter to Kate Bingham. I’d sent him a mind dump and he used that and my blog to produce a very emotional, poignant plea for help. That brought me to tears and really moved me. Not just it’s contents but the effort Ricky put in to help me, by producing such a beautiful letter. I know you’ll read this, so I want to say thank you again Ricky, this meant so much! But reading my story written by someone else was so very hard. As I said, I’m numb to what I am writing most the time. It’s just a brain dump that I then publish without rereading. Then reading what Ricky wrote was my undoing. I sent the letter straight away, just as soon as I’d cleared the tears from my eyes so I didn’t bottle it. But it bought my reality to light once again, made me face the weight of the last 16 months. It’s impossible to be numb when reading your own story as if for the first time.