Tag: health

It’s not easy to understand someone with a chronic illness; to understand what they feel, what they think and what a day looks like for them. It’s why I share my journals. I know I’m just one person, but one person can help others. To give them a window into a world that is hard to navigate and even harder to fathom.

I think becoming so unwell is much harder to deal with when you’ve lived a life as an able bodied person, whose ailments didn’t prevent her from truly living. Of course that’s an assumption, but I have always been unwell, unwell was all I knew so to manage it just became normal. But I was never quite this unwell. My body never betrayed me to the level it does now. Now my health makes me feel inadequate in every way. My contribution and abilities are inadequate, and what I get to experience of life is inadequate. And while there is hope with this implant, the truth is that every time it stops working and I’m once again faced with near solitude in a dark room it gets much harder to cope with each time. The mind gets darker faster and the heart feels a little cold. It feels like I lose a little piece of me each time.

Quite often I’ve been locked down for so long that when I do eventually emerge outside these walls again I find the trees are a different colour, the season has changed and the world seems a little alien. It’s the same, of course it is, it’s all familiar and I know it, but it also feels a little strange and like something is different and I just can’t figure out what. But eventually that feeling goes and it feels normal, until the next time my health prevents me escaping for a while.

To not be able to live how I once did is soul destroying and so I don’t let myself get lost in thinking about it for too long. But when each time I’m thrown back into levels of pain no human should ever know exist it’s harder to keep those thoughts away. Each time it’s harder to not succumb to the fear that you won’t recover this time; that they can’t fix it this time. That the last time you had a good day will forever be the last one.

You could say it’s irrational, given that we know how well the implant can work for me, but what if this time the wires have moved a little too far to be able to use the most effective contact points? The truth is that I just can’t fully trust a device that only seems to be able to provide relief for 10 days at a time before I have to arrange another visit to the IT guys. But when it can take 6-8 weeks before I get to see them, suddenly 10 days seems woefully inadequate. When I still have to spend a good 40% of those days in bed recovering and resting.

It just seems like such a waste of a life. I know my mind will become a safer place when my pain eases again. Right now I cannot help but feel like an inadequate member of the human race. I cannot even care for myself. The best contribution I can give is sharing these journal entries – a glimpse into my pitiful existence and my journey through surviving these thoughts – along with my volunteering for UKCVFamily. The volunteering helps immensely, it truly gives me a sense of purpose where I can otherwise find none. I know my contributions help others like me find the support they need. I know that I am strong enough to help others, even when at times it can feel impossibly heavy. When I can feel impossibly heavy. I hope I can someday do more for our cause, I hope I can become an old lady able to recount her part in making the world a little better even for just one person. For now my energy must be spent on making the weight on my own shoulders a little lighter.

Believe it or not I consider myself to be in a very fortunate position. I know many who do not have the support around them that I do. I’m also very fortunate in that I have a wonderful therapist and I’ve managed to squirrel a little money away so that on Monday I am able to message and ask for my next session to be brought forward if she can squeeze me in. I am just not able to cope with this trauma alone, for that is what I’m going through; trauma. I will always be grateful to the friend who sent me Lee’s details for she has saved me time and time again, ensuring I have the tools and the strength to get through these periods. The NHS couldn’t/wouldn’t help me but Lee never faltered. I also now know when I need more support, I know when it’s time to call in for reinforcements. And I’m lucky that I am able to afford to do so right now.

I hope one day when I’m old and grey, and this period will seem but a blip in my life, I will be able to look back and be grateful for this time. The lessons it’s taught me, the time it gave me to find myself, the true strength and resilience I have shown and the wonderful people it has introduced me to. Along with the deeper connections I have made with those who surround me, for they are truly the heroes in this story. It takes a village to survive the darkest times life can give you and I’m very lucky to have one. And so my glimmers revolve around my time with them, and if the best I have to give back is buying lunch or an occasional 20 minute meal, then for now that has to be enough and I look forward to being able to resume these moments.

I must admit I’m rather fed up now, I’m sure you guys must be tiring a little of reading the same complaints too. But I share my good and bad so others know that if the best they have today reflects one of my bad days then they are not alone and for people like us it’s perfectly normal and ok to have these thoughts, feelings and experiences.

Yesterday was marginally better, which was a blessed relief. But I hoped that would be the case as Thursday evening I changed my settings from stimulation every 6 minutes to every 3. I hoped that given the implant cuts out when I turn my head that I wouldn’t have pain from overstimulation. My assumption being that I’m not receiving full stimulation – hence my current state of hell – so by changing it to every 3 minutes I might get some relief. And I did get some relief, but I also spent most of yesterday trying to ignore the increasing tenderness to the back of my head. Alas it grew to be too much by the evening and I had to turn my device back down to every 6 minutes. The overstimulation won this round.

My dad came over with lunch yesterday and it was lovely to see another face and get some social interaction. But the visit really took a lot out of me – though given the choice I’d have still chosen to have lunch with my Dad. It was lovely, he told me about his first morning of HGV1 training, we checked in on each other and we really laughed. I mean at one point I even peed a little and I haven’t laughed like that for some time.

Through lack of hair wash and generally having an itchy scalp I decided it was time to give in and wash my hair. But the boiler had other ideas and decided tepid was the best it could heat the water to. So instead (thinking I’d fixed the problem) I had a very rapid wash in a cold bath. By then I was exhausted, cold, and in a lot of pain.

Mum finished work and to try and ease my scalp she helped brush my hair (and give my head a good scratch). It doesn’t matter how old you are, having someone brush your hair is lovely!

We had dinner and I reluctantly turned my device down and settled into my heated blanket to try and get the chill out my bones.

This morning is awful. I don’t recall waking in the night and I’m always asleep around 9-9.30, yet I am at a really deep level of exhaustion. The cat woke me up at 7.30. I must have moved and Pru saw that as invitation to dive under my duvet to attack whatever creature was daring to move in her domain – my feet. So off I went to do our normal morning routine – sorting Bella and myself with meds, breakfast etc and stopping Pru from bullying Bella into giving her her breakfast. The cat is a tyrant and I adore her. Back to bed I went. I don’t go back to sleep, but I do have to do this daily to wait for my meds to kick in before I can function further. Around 10-11am is when I know what my minimum pain levels of the day will be. Today it’s a solid 10/10. Truly I wonder why I bother popping all these pills, but I don’t wish to find out that my current 10/10 is in fact a 7/10. No thank you.

But I have two parcels that must be collected in the next 24 hours or they’ll get sent back – both at different locations and I need to get Bella some meat from the pet shop. 3 locations I need to visit today, yet I have been led here needing to pee for a few hours now and I can’t bring myself to visit that one location down the end of the hall. Bella is in one of her moods – the kind where she absolutely needs tucking in every few minutes because she won’t lie still, but the kind of demand that comes with the thump of a paw and a constant whine or grumble. She also really needs to go out, though she has 4-5 times already. But you can’t tell a dog with dementia that she’s already been, I mean you can’t tell any dog that anyway – they’d just look at you funny thinking ‘what the fuck is she trying to say?’

It’s a difficult position to be in. I know I should ask for help in collecting these parcels and dog food, but it’s also not in my nature. My friends and family do a hell of a lot for me, my mum in particular, so it feels very greedy to ask for more help. Especially help such as going to 3 different locations, because that’s very inconvenient for anyone. But I also know, like I’ve known for over a week now, that I am in no fit state to even consider taking myself. It’s hard to accept not being able to drive. As a petrol head and someone that just loves driving anywhere for anything, or even nothing, not being able to drive is a hard pill to swallow. Mostly because it seems that my list of things I can’t do is always growing and I hate not being able to do for myself. I’ve always had to do for myself, I was raised fiercely independent. It’s not in my nature to accept that I can’t drive or can’t wash my own hair, or can’t provide myself with meals. It’s why I ensure that everyday I provide everything Bella needs, except exercise. I can’t care for myself, but I will continue to do everything I can to care for Bella’s needs. Though I admit some days I really do wish for a day off from the constant tucking in, letting out and handling of tantrums. I do get it, I get her needs – I know what she’s asking for every time when others can’t read her signs. But I know every one of them, including the ‘I don’t need anything but I do really need to shout at you for 10 minutes’ tantrums. I can’t blame her, I’m bored and in isolation, which means she is also bored and in isolation. It’s not her fault, so I allow the tantrums and I do give in and tuck her in 99% of the time, even if it’s 11am and you’ve run out of fingers and toes to count how many times you’ve already tucked her in. It’s not her fault and the dementia really exacerbates the urgency of her demands. Everything is life or death. We had a very active life and saw the outdoors for hours at a time, now she sees the outdoors maybe once a week at best, once a fortnight at worst. It’s awful, truly awful. It’s the part I struggle with most, because dogs need outdoors, they need to run and rip grass and feel the breeze. It’s just something I’m not capable of providing at a level she deserves, so I will give, borrow and steal every spoon I can to ensure every other need is cared for.

I have gone on a tangent but I have such guilt over my ability to give Bella what she deserves so it’s something I write about often. And you’re probably wondering how I’ve shared so much this week if I’ve been so bad, but writing is how I process. It’s my coping mechanism so I absolutely have to write in order to safely get through these periods, only this time I’ve chosen to share them all with you. It was recently pointed out that my unshared writing is probably the most important, so I’m trying to not hold as much back because they are right.

But oh how the tables have turned in the last few minutes whilst I was writing my woes. Mums off out to Sainsbury’s to get a stair gate to stop Bella eating the cat litter (where one of my parcels is), she’s also going to B&M which is right next to the pet shop and she already had Bella’s food on her list. She’ll also be driving right past the newsagents that have the other parcel. I cried in frustration of not wanting to tell her what I needed help with, even though it was her who asked first. I got a firm telling off, that she asked because she wants to help and understands that I didn’t want to ‘burden her’ but that it was a load of tosh when it turned out she was going to all the places I needed to go for her own needs anyway.

This is my problem, I just always assume that I’m being a pain in the ass asking for things. I’ve always felt that way, I’ve always felt that if I haven’t got it in me to do something then why should I expect someone else to have it in them. So then I don’t expect that and I don’t ask it because above all else I just don’t want to be a pain in the ass when others go above and beyond to care for my needs already.

But now the pain in my head has grown from having a cry and stressing myself out over my to do list that really the best I’ve got is lying back down and hoping beyond anything that maybe I might be able to drift off and sleep through a bit of this pain.

I hope anyone reading this has a wonderful weekend 🤍

My pain seems to be receding a little today. I use the word receding because that’s what it feels like – my face and my jaw aren’t quite so bad, though my half shut eye will try to tell you otherwise. The pain is largely around the back of my head and a little over the top and side, as I say, receding.

I had my tuna roll for lunch. It can sometimes feel quite daunting making food from scratch, and I know that can sound quite silly to some when I’m just discussing making tuna mayo with sweetcorn and some par bake rolls in the air fryer. But as a task that is often too much for me it really can seem daunting because I can never fully predict its impact. For instance a few weeks back, when I was laid up for a long period like I am now, the thing that brought it on was half a bowl of washing up. Nothing wild, just a few plates and mugs that I thought I’d clear so mum didn’t have to when she got home from work. But that simple 15 minute task fucked me up for over a week.

So I made my roll and I’m in a bit more pain. I sat up whilst eating and remained that way for about 45 minutes. I don’t do upright very well, it always brings more pain, but I try to do this every day at some point. Now, as my pain is higher, my neck is sore, my wires are pulling and my belly is full, I can’t help but wonder just how many spoons I’ve just used. The task of getting out of bed and down the stairs is definitely a spoon. Then another spoon can be attributed to the making of said tuna and whacking rolls in the airfryer. I think the sitting up to eat and staying that way a little longer probably cost me two spoons. Which, personally, I find to be a fucking ridiculous amount of spoons. You could almost consider it reckless accounting. Or reckless spending.

Mums working from home today and while making my lunch she apologised because she hadn’t bought me any pot noodles. I immediately dismissed her apology, reminding her it was me who told her to stop buying convenient food. It’s not good for me, it’s just filling a hole with something that doesn’t nourish my body. I need to not have them to be encouraged to make better choices. Even if it does cost me some extra spoons.

Sitting up I often assess exactly what my body is feeling. I like doing a whole body scan, it’s my favourite meditation and really helps me get what I’m feeling across to doctors and surgeons. I was thanked for my ability to describe minute changes in my implants stimulation during my last reprogramming. But I digress. What I feel in my head and neck when sitting up is that my neck just isn’t strong enough to support my head. My head feels impossible heavy. When with friends I will often have my head on my fist to add support so I can stay that little bit longer. And this isn’t a post op situation, though it certainly made it worse due to all the damaged tissue. This has been ongoing since the vaccine and the start of the decline in my mobility and strength. Which seems rather strange for someone who could bust out reps with 120kg on my back not too long ago. It’s why I’m still fighting the NHS because joint hypermobility just doesn’t account for the suffering of my body. And I’m very aware I only get one body. Perhaps when I pass and my soul finds a new body to inhabit it’ll be in better condition. But right now, with my, my, consciousness, I will only ever know this body and I’d really like to see it working for me again. Not least to see an end to my suffering and counting of spoons, but because with a functioning body I can really do a lot more with life and I think aside from ticking off my own bucket list, I can also play a bigger role in helping others who have gone through this, or are going through this, or will one day be going through this.

But until then I’ll be returning to my horizontal resting place to read a little more, whilst looking at the washing that I very nearly remembered to take down with me when I made lunch.

When someone becomes chronically ill, aside from the obvious changes to their life, there are sometimes other impacts that may not be quite so obvious. They may creep up on them, those around may not quite realise the severity or assume the change is an obvious consequence to their health.

The change I’m referring to today is their ability to feel joy. And not just feel it, but to accept it, embrace it and want it. That last one may seem a bit strange, but bear with me on this because it really is coming from a place of experience.

I’ve mentioned before that last year I had a therapy session, in fact I had many, that were focused on joy and fun. My sorrow at feeling like I’ve missed out on so much fun, that when I am better will I have missed it entirely? Will those around me, whose lives have continued, still want to repeat the fun with me when I am better able? We of course deep dived as we always do and got down to the root of the issue. This particular session started with ‘I don’t know how to feel joy anymore’. Later after much tapping my therapist asked ‘what stopping you from feeling joy?’ And without consideration my response was ‘I don’t think I deserve to’. A terribly sad statement, wouldn’t you say?

Of course, I know I deserve to feel joy and have fun. At least, I do now. But in that moment, and for many before, I didn’t believe I deserved joy. How could I possibly accept any joy into a life that is so surrounded by suffering? How could I allow my suffering and darkness the opportunity to taint the joy? How could I enjoy fun knowing the consequences it would have? So I subconsciously decided that joy didn’t have a place at my table. That’s what I mean when I said about not wanting to feel joy.

For those who have never felt this it may be incredibly hard to understand. I expect many who suffer depression might have an idea of what I’m talking about. Those who don’t know may assume their loved one is a bit down about their health and may not be in the mood to laugh. But how long can that excuse remain valid? I mean of course it is valid, but I mean at what point does it become a greater concern?

My goal, and it’s a very simple one, is to ensure that each day I get a dose of joy or fun. It can be as simple as sharing a meme, laughing when I see friends (truly laughing!) or playing with the babies, children and dogs in my life. All these things I can get my recommended 10cc of daily joy. I currently accept that fun has to be tailored to my health, and I continue to process the grief of that. But that doesn’t mean that I can’t bake with friends, do messy science experiments in the garden with god goddaughter, arts and crafts with friends or a zoom session with members of UKCVFamily. Dark humour brings me joy, and it is often in the most inappropriate times. But I don’t care, because if anyone deserves to make a sick joke at bad timing, especially if it’s about my health, then it’s me and anyone else who’s suffering.

I can feel my suffering and the grief and remorse that comes with that. I can feel my sadness and sit it. I can do some tapping and tell myself ‘I’m ok, I’m safe, and I love and accept myself exactly how I am’. It’s hard, it’s really fucking hard. Some days more than others. But I can now accept joy too. My loved ones are all willing to share joy with me and have fun at a level that I can manage.

I just want to say that this path is not easy. I’ve had health issues since I was a young teenager, but this situation that floored me happened 32 months ago and I’m still learning. I’m literally talking about a healing process that has only led me to accept joy in the last few months. Joy is new to me all over again, like the first time your kids laugh at a fart. I’m 30 and I’m suddenly that kid again, laughing at all the farts. (Not that farts ever stopped being funny to me!)

I’m incredibly lucky to have the support I do and to feel so much love. I know not everyone is quite so lucky so I hope my writing and sharing these battles helps others. Not just others suffering, but to give a voice to those suffering that can perhaps give their loved ones an insight to the internal battle they’re having. The greatest advice I could give is to give space for all your feelings, each one is valid, but remember that everyone is deserving of joy. Laugh at the fart. And maybe if you’re reading this and thinking of a loved one then perhaps arrange a little fun that is manageable for them. Help them remember that they can still have fun, it just looks and feels a little different now.

A friend shared a quote with me this morning that really resonated and explains why I write all this babble and share it so openly. Thank you Tracy.

I recover out loud so those that suffer in silence can see the threads of hope woven among those of pain.

JD Lynn