Month: June 2024

A big decision for a little lady.

I had an interesting therapy session yesterday, in which we discussed the idea of me being ok and mostly stable. Of course I struggle, but it’s part of the human experience, and when you’re faced with so much it’s natural to struggle at times. But I’m also certain that I will get through it, even though in the moment it can seem impossible and scary.

That’s why I write everything here, the struggles and the triumphs, because that’s exactly what life looks like, particularly when you’re dealing with chronic illnesses. Because ultimately, I cope with things very differently now and have to manage my limited capacity to cope and take more things on board.

We discussed everything from what I’ve introduced that’s been beneficial (or not), what my diet is looking like, how I’m sleeping, where I’m at with medications and the process of removing some of them, and what’s been going on in general. Which led to the discussion on whether I am now in a place to invest in my physical health instead of my mental health.

If I’m honest it’s a scary thought to leave therapy behind. Even having sessions 5-6 weeks apart, more as a check in, gives me a sense of security. A check point and a place to discuss any decisions I need to make. So the thought of leaving Lee behind, though I can always have ad hoc sessions or go back fully, is quite scary after 4 years together. She really has been there through it all like a guardian angel. Something I’m incredibly fortunate to have. I also hate change, it’s uncomfortable and makes me feel less safe and can often cause disproportionate meltdowns (Or disproportionate by others standards) and has done since I was a wee dot. But my need for control, and no change, has increased since becoming ill – controlling what I can because everything else feels out of control.

But with my bills for Bella increasing I just can’t make the math work to pay for therapy and kinesiology. It’s clear that western medicine is not helping me. I know I have to continue fighting the NHS system to get answers on what I’m dealing with, but I also believe it’s not the system to help me get better. I need them to give me the answers, but my body does not respond to their solutions. Which is just more poisonous medication that does more harm than good. So I think, I know, the holistic route is likely to give me better results and better understanding.

The medication I’m due to start reducing is pregabalin. It’s fucking awful and I feel for anyone that’s had to or still does take it. But the withdrawal is likely to be a struggle, and I will likely continue to struggle once I’m off it as there is no alternative option. The reduction rate my neurologist has suggested seems rapid, and she warned me it wouldn’t be a nice process. But the support groups for this drug warn of the withdrawal I will face and suggest a slower reduction to help my body and brain better cope with the withdrawal symptoms. The safer, more manageable approach seems the obvious option as I don’t wish to increase my suffering more than necessary. So I need to discuss this with the doctors on Friday, as it really is a nasty drug and withdrawal from it can be a brutal process. Much like withdrawing from heavy recreational drugs, because of the type of drug and the way the body and brain depend on it, it can also cause psychological disorders. So I’m concerned and nervous but this isn’t a drug I wish to take anymore, it’s ultimately detrimental to my health and wellbeing.

I guess this will also play a factor in my decision on whether now is the right time to drop therapy in order to invest in my physical health. Ultimately I won’t know what sort of withdrawal I will face until I start the process.

I have an incredible support network around me outside of my therapist. My friends and family are so supportive and I know I’ll have them to lean on throughout this process of withdrawal and leaving therapy behind. But my greatest fear is will it be enough? I’m still not good at asking for help. Often I find myself reaching out to friends and family later than I should be. I still fear putting my shit on other people when they have their own lives to navigate, especially as my mind likes to remind me it’s always the same shit with me. The saying ‘old habits die hard’ couldn’t be truer for me in these situations. But perhaps this is another test, another lesson on putting into practice what I have learned these last few years.

I feel good for the session, and I think it was a worthy topic of discussion both with Lee and here – my journal of processing. But I need to dedicate the time and think about what I want to do, knowing that at any moment I can contact Lee and get back into therapy. I always have a back up there and perhaps that’s all the safety net I truly need.

Life continues and we cope.

There’s one undeniable truth that cannot be escaped from, no matter what you’re going through. Life carries on. The world keeps spinning, normal life ‘stuff’ happens, whether you have the capacity to deal with it or not. Sometimes it all happens at once, and you can think you have the worst luck, but all you can do is find ways to cope.

For me and my family, we feel we’re dealing with a lot right now. This isn’t a sad post, or it’s not meant to be, because for the last few days I really feel like I’ve been coping and I like that. Despite the rubbish stuff.

Each day I grieve for people that are still alive. That’s what happens when faced with diseases like dementia, you lose a little bit of them each day and you grieve that. You have to grieve that, whenever it comes up, so that you can cope. I’m grieving both my Grandma and Bella, both victims of this terrible disease.

It’s incredible hard saying goodbye to someone you’ve known your entire life, who taught you that you can and will get through anything life throws your way. And to Bella, who has become an anxious, distressed and sometimes angry dog. She’s never been that way, a little more anxious than most, but manageable and I worked tirelessly to make sure she never had anything to worry about.

But sometimes you cant stop the little sad thoughts that pop into your head. When I see my Grandma, and she’s lucid, she’s happy to see me. She knows she loves me, but I’m not sure she knows exactly who I am to her. I wonder, when was the last time she saw me and knew I was her Granddaughter? And I worry that every time I leave that I won’t know if that’s my last goodbye. Truth be told I’m finding it incredibly difficult and it’s a real internal fight to go and see her. Which I know sounds incredibly selfish, but when I saw her last she didn’t even acknowledge me, she looked at me like an intruder and not someone she loves. But I stayed, her carers left and I continued to stay. I eventually went to leave, quite a while later, and the living room door woke her. I immediately heard ‘Oh hello you!’ And I spun around, pretending I’d just arrived and enjoyed a few minutes of lucidity with my Grandma, until she drifted off again. I know I will continue the internal battle, because those few minutes of being someone she loves are worth taking the chance.

I’m having a little similar with Bella too, who’s now quite deaf. I have to use sharp sounds and voices to ensure she hears me. In the mornings, if she hasn’t already woken, I have to go and gently wake her up until she makes eye contact and is suddenly ‘in the room’ with me. Then I have to either use a sharper voice, which I dislike, or rely on hand signals to get her to understand what I’m asking. I think that’s why training is always done with hand signals and commands, so you still have something to rely on if they lose their hearing. But Bella doesn’t understand a lot of commands anymore, not because she’s deaf, but because she’s forgotten. And then a sudden thought pops into my head: ‘when was the last time Bella heard my voice?’ Not the drill sergeant I have to be so she can hear me, but her mum who used to sing to her to calm her down during the thunderstorms she can no longer hear.

So I’m having more regular therapy, I’m processing my grief both in private and in front of others. I admit my shitty thoughts and feelings because I know I’m not alone with them, and sometimes it takes another to speak up for others to feel safe with their thoughts. So I do that, because it helps. And when a large portion of your network are struggling, the best thing each of you can do is look after yourself and find the ways that help you cope. And while I am regularly feeling like I’m at capacity I also know I can and will get through this, by facing and processing things when they come up. By showing up for those few minutes with my Grandma, as someone she loves, and by showing up for Bella every day. By working with her dementia and needs, by doing what I can to keep her calm and doing my best, including not showing her just how frustrated and tired I am when I have to manage her crying and tantrums 24/7. It’s what I signed up for. It’s what you do for love and family.

Truth be told, I’ve been taking a concoction of supplements and regularly switching my stimulation programmes and I am feeling ok. I’m not good, I’m quite far from good. But I don’t want to rip my head off most of the time and I feel like I have a bit more useable energy so I am able to do a little more. I still have days I can’t do anything and others where I over do it. But I’m trying to stay focused on pacing, not just to manage my energy, crashes and pain but also my mental and emotional health. I think this is starting to contribute to me being able to cope a little better at the moment.

I also had to have my daith taken out for my scans last week. It was put back in today but I left with a hole in my nose too. Because sometimes self-care is making split second decisions, a reckless investment, because you just kinda fancy it. Waste of money? Likely. Did it make me smile? Absolutely. Sometimes it’s spending extra on supplements and dog groomers, other times it’s pointless shit like nose rings. There’s no rule book to self-care. So now I’m off home to disappoint my family, because at 30 you only need your own approval.