Month: November 2024

Bella and hot wheels.

Gosh it’s been a while since I’ve posted, and I do apologise for that.

I’ve been stuck in a “freeze” state while consumed with the grief over preparing to say goodbye to Bella. The reality is that everything else hasn’t mattered to me one bit; I’ve forgotten to take meds, not engaged in conversations and generally just check out if everything that doesn’t involve caring for Bella and spending as much time with her as I can.

Some wonderful things have happened in this time, and the first is that my wonderful friend Kalie offered to do a photoshoot with Bella and I. I don’t think I’ll ever be able to repay for this incredible gesture or the beautiful photos that came from it. I now have lasting memories to cherish and frame, to remind me of the goofy smile and chestnut eyes that I fell in love with all those years ago. It took an extortionate amount of treats, but it was oh so worth it! So thank you, Kalie, this meant the world! And thank you Laura for all the treats and hair adjustments! 🤍

Bells is now on 400mg at lunch, leaving me with just 100mg to be able to add when she declines. I’m trying not to worry, but we’ve had a really great week or two where she’s been fairly settled, calm and super cuddly. But the last two days she’s been aggy from about 9/9.30am, so I’m crossing everything that it’s just a bad few days and not a pattern, but I fear we only have a few weeks left together now.

Friday marked week 5 of being able to walk Bella once a week, even though I can only manage 20 minutes. But it’s worth not being able to do a lot else to allow me to experience being in nature with Bells again, though the last week has seen quite a big crash in my energy.

As I said, I’ve not been able to do a lot else at all. I managed to get a little visit in with Darcy last week, which was soul healing as always. I’m incredibly lucky to have the circle around me that I do!

The doctor agreed to add a strong antihistamine into my regime to help calm my system and prepare it for starting the elimination stage of the diet with the dietitian. This doc has been super supportive and I’m so glad to finally have found one that will listen and offer whatever help she can. She’s also tried to push for a CT myelogram to investigate if I have a nerve demyelination issue that’s causing a lot of my symptoms and disability.

Which leads on to say I’ve started a new fundraiser. The previous one has contributed in achieving the improvements with my energy and pain, something I am incredibly grateful for. But the reality is that I often can’t use this energy because I’m still disabled with physical limitations, often resulting in falls when I push my body. This means I’m still largely stuck at home, which is more frustrating when I find I have the energy to do things. So I’m fundraising to be able to buy a powered chair that will allow me to not only go on long woodland walks, but the basics that I haven’t been able to do for years like a simple food shop or a wander around town or a Christmas market. I still have to say “no” constantly to these experiences and I’d love to be able to start saying “yes”.

I also discussed that I intend to rescue another Bully after Bella. If she’s taught me anything it’s that life is better with a companion, especially when you’re isolated and lonely so much. But that I have a whole lot of love to give and I know I can give another dog like Bella a better chance at a warm, loving life. The only area I can’t provide for them is the walking. But with a chair I could give them the outdoor freedom both they and I deserve.

So that’s where I’m at, I will share the fundraising link below and I’d be very grateful if anyone considered sharing it. I just can’t afford to lease one by giving up the enhanced mobility component of my PIP because I still have normal bills and rent on top of the cost of being unwell and with a very limited income. I’ll also share a photo from the shoot with Kalie so you can see just how wonderful her skills are and how beautiful my darling Bella is, even when manic 🤍

https://www.justgiving.com/crowdfunding/cp-212?utm_term=XxEBnXAY9

Maintaining hope.

I had the greatest appointment with the doc this morning. She’s chasing the CT myelogram for me as some dumbass at the other end has changed it to a full spine MRI, despite the referral stating why that wasn’t an option. She also discussed the idea of maybe having a lumbar puncture depending on results and that demyelination would account for many issues, including the legs not working and being disabled and the level of that limited mobility fluctuating. But we’ll see what comes back and go from there. 

She’s super excited by the results I’m seeing from the diet and agrees with MCAS as a likely diagnosis, though also admitted the NHS and GPs know very little as it’s usually seen in the long covid clinics which they have no involvement with, and getting the diagnosis is even harder. She’s going to go away and do her own research so she’s in the know and understands the diet. But she’s prescribed fexofenadine, despite no diagnosis, so hopefully reactions will be more under control going forward. She also thinks a powered chair is a great idea so I can make use of the energy increase I have. 

All in all 10/10 I got everything I needed and she’s keen to keep supporting me going forward. 

I guess here’s a good point to actually tell you the impact this low histamine diet is having, aside from leaving me with intense cravings for my favourite foods which aren’t allowed. Mostly gravy. 

Before this diet, most days I’d be lucky if I woke with 36% body battery. I used my Garmin Fenix data to help me with pacing and this is one of the key measures for that. With just 36% I’m incredibly limited, especially when around 20% would go to caring for Bella. And the trick is that you never want to run out of battery, in fact going below 10-15% can still induce a crash. So you see why I’m so limited in what I can do. 

However, since the diet I’ve been seeing good numbers. By good, I actually mean unbelievable. 3 days ago I woke with 91%. Ninety-fucking-one! On average though I will wake up with 70%. Again, 20% ish goes to caring for Bella, leaving me with 35% to use so I don’t dip below 15. 

I’ve been washing up, I walked Bella Thursday and today I walked Bella AND Ira (Tash’s wee dog). I hope no one saw the disaster that was me walking to the field and back with two eager dogs, on leads in the same hand, while the other had the walking stick! Given they were both walking in different bloody directions. But we had a blast and we’ve all been quietly snoozing since! 

I’ve been inundated with safeguarding work the last few weeks, which has caused a crash but I’m building the stores back up. But on top of that, in the last few weeks (have been in the diet 2 weeks and 3 days) I’ve washed up a few times, cooked a few times (some disastrous), started getting on top of my laundry, hoovered, prepared lunch for the fam and Tash’s partner. 

My HC pain has also been reduced which is a miracle, though new routines mean I keep forgetting morning meds which does cause a significant amount of pain throughout the day. This also confirms that clearly I’ve been having some level of reaction since the first vaccine and until the symptoms became severe it just couldn’t have been spotted.

I’m still disabled, I doubt a diet is going to do a lot is there is nerve damage, but we’re working on that as I said.

But I’ve been so full of hope with the increase in energy, I’ve even dared to dream of a future. Exploring how I might train as a dog behaviourist and what that life might look like for me.

The hardest part of the last few weeks is that Bella is already declining on the lunchtime meds and I’ve had to increase them. I know time is nearly up, and a significant amount of energy has been lost to the stress and grief of this and trying to process and plan as much as I can. I’ve been in the vets repeatedly and a wonderful receptionist gave me a quality of life questionnaire to make the decision a little easier. The trouble with dementia is that she cannot tell me when it’s time and making a non-biased decision is much harder than I imagined. So the 35% spare energy has mostly been going on Bella, especially while the meds are making her my cuddly little girl a bit more. 

I’ll be honest, I’ve also already been looking at other dogs like Bella who could become my new companion through this – both my illness and my grief. The guilt of this is intense, but the closer we get the more I realise I just can’t do this alone, nor do I want to. Having Bella’s company and being responsible for all her needs is a big drive for me, she’s always getting me out of bed and moving and no matter what I go to bed with a sense of accomplishment because I was able to meet her every demand. I suppose I’ll be able to make a firm decision after the time when I know how I really feel. But I always try to be honest here, and this is one of the things that’s consuming my mind. 

Of course, the dog I think would be a perfect fit is a 1 year old girl whose story is much like Bella’s was. So another part of that decision is that I would really need to consider leasing a powered chair so she could have the walks she deserved and honestly I think being able to be out more and without an impact on my body or health would do me the world of good. It seems like a sound way to spend the extra energy, I just need to figure out if I can afford the £43 a week it would cost me out of my PIP allowance, because I certainly couldn’t afford the £2300 it would cost to buy a refurbished one!

In this time I also got to see Han and Ivor, and her beautifully growing baby bump and even briefly her husband Jordon. Then I got to go for lunch with Kat, who was the wonderful woman who gave me her husband’s old perching stool (which is still a godsend!).

Maintaining connections is still incredibly important for me, especially when the friends are have are far more than that for me. It’s been hard trying to fit it in with the safeguarding, Bella and diet hiccups, but I’m slowly working it out so I can hopefully maintain at least one social day a week so I get to be with the people who have carried me this far. 

So there we have it, a big old dump of the last few weeks. A mix of good and sad, but there is hope and I’m sure you can understand I need all the hope I can get right now to keep my head above water.