Month: November 2023

The isolation from being in this situation with my health, I believe, is the hardest part of all to cope with. When I applied for disability Hannah wrote ‘the world was released from lockdown while Chloe’s continued.’ It’s the truest statement made, though a rather sad one.

I get out, not often, certainly not for long. On Friday I got to see Hannah and Ivor, it was the first time in 3 weeks and it truly felt like months. So much so I got emotional before I went in and after I left. Emotional at the start because I finally got to see them and was so happy. Emotional when I left because the visit suddenly seemed so fleeting and I was heading back to isolation.

I see my dad once or twice a week and my sister comes over for a day every weekend. But often these are days where I am really not well and so, while grateful for the visits, I hate that I’m not able to be fully present for them. A couple of weekends ago when Tash was over she planned to go home early and have dinner there. When it came time for her to leave I was telling her to only leave if she actually wanted to and not because the F1 was on at dinner time, telling her she could stay and it wouldn’t be a bother. What I was in fact doing was low key begging her to stay a little longer. This weekend I asked if she was staying for dinner, which she was, and I could barely contain the joy that spread across my face.

The last two weeks I’ve ensured I’ve been there with my goddaughter and her mum, Laura, to take Amy to her swimming lessons. She swims and Laura and I put the world to rights. I wasn’t up to it, but I needed it. I needed to see them and I needed the escape.

I spoke of Saturday being slightly better and getting to walk Bella. It was great, and I’m grateful for it, but my pain since has been even worse. The first few weeks post op I’d have the odd bad day, but I’m back to having rare good days and that is truly soul destroying.

It’s like a child desperately wanting something so bad. They wish for it every day and one day they get it. They’re full of joy and they’re playing with the toy they so desperately wanted. Then someone comes along and snatches it out their hands, telling them ‘you can’t have that’. That’s what this feels like. You can’t have life, you can’t have fun and adventures and freedom.

I’m obviously not sleeping well and as you can imagine my thoughts feel shitty. I feel so distant and detached from everyone. You know the post night out anxiety where you think you’ve hurt your friends and you want to ask ‘are we ok? Have I done something to upset you?’- I constantly feel like I need to ask these questions of my friends and family. Though I know I’ve done nothing wrong, but there’s a certain detachment when you can’t have fun and experience life with them on the same level anymore. Naturally I’m in a constant state of FOMO, feeling unbelievably jealous when I see my friends doing things I’d have loved to join in on or even have an invite to. But I know and have to accept that I cannot be that friend right now, and it hurts immensely because I’ve had to sit in these feelings for 29 long months. I think the question I should ask is how they feel and what we can do to feel more connected.

I’ve emailed my surgeons secretary seeking guidance. I emailed last week and again today because I didn’t get so much as an acknowledgment. Todays email was slightly more insistent, ensuring that they know how in the dark they are leaving me and that just a little bit of guidance and support would go a long way to helping me not feeling like a nuisance sending these emails. It’s hardly a difficult thing, just to reply and let me know it’s been forwarded to the relevant person – if indeed it has and hasn’t just been sent to the ignore pile. Because that’s what it feels like.

This all sounds rather glum, like many of my journal entries. I’m ok and I will keep fighting to get the help and support I deserve to live a life again. I have to write these things down though, especially while we’re trialling less frequent therapy sessions. This is how I cope and process. To write every thought so it doesn’t consume me, and often it is easier to write to no one in particular than speak these thoughts. I always fear they may hurt or upset those I love. I also only share around 50% of what I write on my blog now, some things truly are better left unsaid. I wrote a bit yesterday about Bella and her struggles as she ages, I’ll likely share that tomorrow because there are a lot of people who care and love her immensely.

Today I woke up and I don’t feel particularly awful. I busted some shapes in my sleep, which is always disturbed, resulting in very tight wires and neck. But I don’t feel awful.

I’m tired, more exhausted, but my head isn’t all that bad. In fact, it’s so ‘not that bad’ that I just got back from taking Bella for a 45 minute walk. Longer than I’ve walked for a long time, and I only stopped once. Of course I took my stick to keep me balanced and reduce the risk of falls which it succeeds in preventing today.

But I walked with Bella, outside, in the freshest air and the coolest breeze. Sloshing my boots through the wettest mud and pointlessly called for my now deaf dog while she churned up all the grass.

We had a wonderful time together because today I woke up and I didn’t feel that awful.

To round it off, I am back home putting some washing on and waiting on the water to heat up to have a nice long bath, because we gotback and I still don’t feel that awful. Ok, we’ll maybe I do feel a little bit more awful, but it’s been worse, far worse.

So today I hope for more days of not feeling awful, and I hope and wish that anyone reading this today also feels not that awful and makes the most of it too 🫶🏼

Quick update before I get started: no update, pain has not settled and I’m still stuck in bed.

Today I was talking with my sister, a deep and vulnerable conversation. Since I started therapy around 3 years ago I have become a much more vulnerable and open person. A person who holds space for her emotions and truly shares all of that with those around me. Not in a heavy, dumping-on-others way, but in a heres-where-I’m-at-and-what-I’ve-learned-this-week kinda way. I cannot expect those around to understand what I’m going through, truly it’s impossible and I wouldn’t wish to burden anyone with understanding this, but I do feel lighter by helping them understand how I feel and where I am mentally. How I can hold space for what hurts, how I view the world, allowing them to see my vulnerability and trusting them to handle it all with love and care.

It wasn’t until I started therapy that I allowed myself space to feel anything or handle any emotions. As a young child I took on the role to look after others, but it means I lost a lot because I didn’t always look after myself. I didn’t grieve loses, I didn’t share my true joy, I didn’t set boundaries or even know that I could. All this leads you to never finding out who you are. I didn’t meet me until I was 28. But I’m also not that version of me anymore because I had to become a different version. A version that could survive this situation I find myself in. When I get to live again I’ll have to let go of this version of me and meet myself all over again because this version of me, the one in survival mode 24/7, cannot exist in the big wide world. This version cannot welcome the world and all its uncertainty and challenges with grace and acceptance.

But for now I am that version. It’s sad but necessary. It’s sad because I crave life and living. I long to live and be free, to maybe travel for a few months and to feel the sand and sea on my feet and feel the breeze through my hair. To see sunrise and sunsets and the way their beautiful colours glow and light up the world around me. To find myself and decide what I want to do with my new freedom, but ultimately to take the time to enjoy life for a time and fill myself with the little moments and little things that make it glorious.

I want to take ice skating lessons and singing lessons for no reason other than I enjoy them. I want to go caving with my sister and learn to surf or just enjoy falling off the board into the ocean that is so full of life itself. To sit quietly with a coffee in an outdoor cafe somewhere in the world on a beautifully warm morning.

These are the thoughts that fill my day. Sometimes they bring me hope and joy, other times they bring me such deep longing that I can feel nothing but sadness. When I feel like I do I truly can’t and shouldn’t do anything, because anything brings consequences. It means I’m just stuck tossing and turning in bed, trying to ease the pressure sores on my hips. I can’t do a puzzle, tv and my phone are exhausting and bring me pain. I can’t paint either due to no concentration, shaky hands or the pressure of leaning forward on my still healing neck. So I’m left with reading, and after 29 months I am fucking sick and tired of reading. I’m bored, and boredom leads to restlessness, which leads to a wandering mind, which compounds loneliness and sadness.

It’s a wicked cycle. But today, while talking with my sister and telling her all the things I feel and all the things I crave doing and seeing again, while I felt sadness, I felt a little less lonely because on the end of the line was someone who craves to do those things with me, and wants to see me truly live again. So this afternoon I felt a little bit of hope and a poem I read this morning said if I had hope then I had everything I’d ever need.

So it turns out a software update was exactly what I needed. Hopefully at least, we will see how it all settles over the next few days, but I’m so grateful that I’ve done no damage and surgery isn’t required.

It was explained that as the tissue heals and scar tissue forms there wires can migrate very slightly, even less than 1mm, and that this situation is very normal and why the stimulation changed. Though why no one could tell me that before now to ease my fear and anxiety over the last week I do not know. I’ve journaled several times this week, very dark journals that I haven’t shared, where I essentially admitted I was scared of myself. Horrendous thoughts and feelings that could have been avoided by a simple email.

The software guy explained and did a diagram on what my wire set up looks like which helped immensely. I have two horizontal lines of wires which are all connected to my nerves, via 16 contact points. They can then use a combination of these contact points and programmes to target the right area of the nerves, by trial and error during the session. The aim is to target the root of the nerves sufficiently to pick up all the branches that come off it. It’s now set that I do not feel the stimulation, which I miss already, so as not to overstimulate the nerves. When pain is high I can set it to the ‘tingle’ programme for constant stimulation, which I will feel as it’s at a higher level, but only for a few hours so as not to overstimulate the nerves and increase pain.

He then pulled my surgeon in to answer more of my questions regarding the tightness of the wires. The advice is to keep going with ROM exercises and massage my neck with bio oil to help release them. I should eventually have full ROM so I need to work on releasing the wires as of course the righter the are the higher risk of pulling them.

Ultimately I feel a lot better. Not with head pain, that’s still mad we played with the nerves for a few hours. But in myself to have the reassurance that it’s hopefully fixed and will work for me again, along with the care advice. The saddest news is that when I’m back on my feet I won’t be able to lift to the level I did – I will have to accept that and build a safe training programme that I can still get the same enjoyment from as I once did. But to be able to train at all is worth it.

Overall it’s great though I would deny my disappointment in the system. Someone could have reassured me or answer my previously emailed questions. I should have been given sufficient information long before now, I should have known to massage my neck and use bio oil, I should have known many things but the bulk of what I do came from my own research, not information given to me as the patient.

But that is done and cannot be erased. The system is broken, so many know this and have suffered as a result. I mean this has all happened because I took the pfzizer vaccine and we’re stuck in a broken system that don’t know how to admit that or treat it. But that’s a fight I and others will continue to have for years to come. What can happen is I can now focus on rebuilding the state of my mental health and I can take this situation as a sign to stop trying to rush recovery. I can use today to turn this all back into a win and be grateful for that in this moment.

My device isn’t working.

I guess that’s as good a place as any to start. It would appear I’ve pulled my wires out of place and am no longer receiving the benefits of this device. That being said, today is day 5 of being stuck in bed with pain no felt since before the op, and the dramatic change in the stimulation happened two days ago. Since then the stimulation barely registers when I could feel very clearly before.

A couple of weeks back I felt a change in the stimulation, it’s was just slightly weaker than before, but it was still beneficial. I placated myself by saying maybe I’m just getting used to it, but I raised it in an email nonetheless. That part of the email was ignored, but it was still helping me all the same.

I also suppose this is day 6 but Saturday was simply down to me overdoing it Friday and nothing more. Sunday I suppose is a bit of the same, so that’s still 4 days of irregular pain levels that have truly floored me. It’s amazing just how quickly you get used to not feeling a certain way and how it makes this situation much harder to deal with, like I haven’t just had 28 months of it. Of course I’ve had pain since the op, the worst being after the wedding, but I recovered remarkably fast.

I’ve emailed my surgeons secretary, and called, but my surgeon is on annual leave. She’s forwarded it to his registrar and I just have to wait for a response.

I’ve been fearful of this happening all along. Some days my wires are pulled really tight and I have very limited movement of my neck, the next they might be much loser and I can move more freely. There doesn’t seem to be a sensible reason for this variation and when raised I was simply told the wires had enough slack. I’ll avoid inserting a sarcastic comment here, though you should know it’s taking all my willpower.

If I’m being totally honest I’ve been given zero information and 99% of what I know is from my own research into every paper published on this operation, not my surgical team. I actually felt I couldn’t raise this situation as I wouldn’t be taken seriously or it would be ignored, because I’ve truly been given nothing. The majority of what I have been told was post op when I was on another planet entirely. This hasn’t been the best process for me truth be told, certainly not since I was moved from the surgical suite post op.

Now I fear I’ll have to repeat the last 4 weeks all over again; having one or both surgical sites reopened, the post op pain and limited mobility and having to repeat this whole recovery process. The end of last week I got to lie back in a bath for the first time as my chest wound was finally healed, a minor thing I know but I bloody love a bath. Of course I’m getting ahead of myself but the dear still stands. The anxiety of not knowing is the larger issue though.

I’m surrounded by a whole lot of unknowns and I’m anxious and scared. Scared they won’t fix it, scared it won’t work as it did before and scared this will happen again. I’m also annoyed this has happened when my surgeon is away and while to them this wouldn’t be an urgent situation, to me it feels very much like one because of the pain and everything that’s bringing.