Uncategorized – Page 6 – Letters From My Bed

2025 so far.

I suppose I have a lot to update everyone on, or to put pen to paper (metaphorically) and face everything I’ve had going on so far this year.

I suppose I’ll start with the most exciting thing for me personally; I have a foster dog!! He’s some kind of large mix breed, larger than Bella, who’s had a terrible start to life. He’s around 18 months old and has spent his life so far shut outdoors in a grotty 5×7 yard that was full of crap (rubbish and crap crap!). I saw a video on Facebook, and he had the same eyes and the same ‘love me’ look that Bella had, so needless to say I didn’t waste time in offering to help.

Since his arrival a week ago, the main focus has been on his health and letting him decompress. He’s very underweight and so he’s on some super high protein food. He’s also had his first vet visit which has resulted in medicated wash and steroids. His first bath was hard work, requiring both mum and I, but Tuesday I managed to bath him alone and it was hard but successful. He’s a swift learner!

He’s already getting to know and understand basic commands since his arrival on Friday, and today he had his second walk around the block. Walks aren’t the focus, he’s never had them so it will take conditioning, but he was getting cabin fever. His second walk, again on my own this time, was absolutely incredible! He’s a LOT of dog who doesn’t know his own strength, actually he probably does and he’s spent 18 months having to rely on it. So of course I’m teaching him that he doesn’t need it anymore, he will always get the care, love and everything else he needs. Again, he’s a quick learner and each day he’s doing even better and decompressing and becoming more relaxed.

He’s not showing to be reactive in any way, curious about everything new (which is almost everything), but not reactive. He is an absolute dream and if I can get the introductions to Pru to keep being as successful then I would consider this a failed foster, but I’m trying to not get ahead of myself. SO much of him reminds me of Bella, like all his tan patches are her he’s tan and white). It feels like she put him in front of me, and I’m very grateful she did!

Next up of course is the Covid-19 inquiry Module 4 which started Tuesday. This covers vaccines and therapeutics. The work the trustees and volunteers at UKCVFamily put into this the last 18 months is phenomenal and I’m incredibly proud of them all. After 4 years for many, we have the biggest platform the vaccine injured and bereaved have EVER had and all evidence and witness statements will be published for the world to see. Though the world is already seeing this live. It’s both triggering, upsetting and very much worth celebrating. There are so many positives to counteract the negatives (such as the gov admitting they knew there would be adverse reactions and they didn’t nothing to plan for them!), but mostly this will bring so many future opportunities for help for the injured and bereaved. It’s historic and I’m proud to be a part of it.

Wednesday I FINALLY got a call from the Spinal surgery orthopaedic unit at the RUH for an assessment on Monday. This should hopefully lead to them approving the right referral for a CT myelogram to see what my nerves are doing, or not doing. So fingers crossed!

After a bumpy start to the year with my health, a few weeks of really clean eating has vastly improved my energy and pain levels. Though pain is taking a little longer to respond. But it was just in time for Riley’s arrival, and since he’s been here I’ve not been suffering so badly with insomnia. I’m still up at 5am each day, which blows, but by taking each day steady and eating well I’m coping and ending the day without depleting my body battery. This includes the constant training and enrichment with Riley and I’ve bathed him twice.

The last few days I’ve been flagging a bit more as I’ve picked up some extra admin work with the Inquiry, which is fine because it’s nothing compared to the amount of work the Trustees are putting in both before and during this module! But it has taken a little dent out of my progress, unsurprisingly.

And yesterday the postman visited with a very special parcel, addressed to Bella Price. Just before I said goodbye my wonderful friends – Han, Darcy, Kalie and Laura – clubbed together to get me a nose print necklace. It arrived in time for me to do her nose prints with the kit supplied, and yesterday the final product arrived. Bella is forever only one boop away and I really feel whole having that, especially with Riley’s arrival as the guilt I feel is a little heavy at times. I get little pangs of guilt when I notice myself experiencing joy and fun, especially when rolling around on the floor while Riley smothers me in kisses. I hope if Bella is watching she’s happy knowing how lovely it is to find myself with a dog that has all her best qualities.

I also want to mention some of the members of UKCVFamily. Due to our confidentiality, I won’t mention names, but should they read this they know I will be discussing them. As you know, I’ve been fundraising to buy a powered chair that would enable me to do a lot more, and in time, when he’s conditioned to, take Riley for the long walks he deserves. Some of the incredible members have been beyond generous. I’ll never be able to thank them for that, not in a way that feels fitting at least. Within 2 weeks they’ve raise £370 on my fundraiser by sharing, donating themselves and one even asked for donations in lieu of birthday presents for a milestone birthday. To find myself among the best of humanity has been the greatest gift to come out of our shared journey. So to each of you, thank you. It really does mean the world and I’ll be forever grateful to have crossed paths and made the friendships I now cherish dearly.

Anyway that’s all from me for now. I’m sure I’ll have more updates soon, but for now I’m out of energy and just wanted to share a little check in.

2025.

Alas another year is coming to the end. This one has been difficult for many reasons, but of course there has also been light.

I think my biggest personal achievement this year has been taking on the safeguarding lead role with UKCVFamily. I could go on and on about how rewarding this role is, but I’ll simply say that the purpose this role has given me has been instrumental in my acceptance of my current situation. It also feels a little strange to say that I get a lot from helping our most vulnerable members, but I really do. I don’t believe hurt people, hurt people. I believe hurt people help people, and the entire team do that in spades.

With my health the biggest improvement has been the low histamine diet. The evidence of this working shows in my increased energy levels and finally seeing a small improvement in my Hemicrania Continua pain, alongside the implant. Of course current I feel like ass, but many reactions over the last few weeks is going to take some time to heal from!

This Christmas period has obviously been very difficult for me. It’s not been easy facing all the ‘firsts’ without Bella by my side. And Christmas day was the biggest of those firsts, and her absence was agonising. But I also know she’d have hated every second and been incredibly stressed. Except while eating her own Christmas dinner, where she’d have been very happy.

I don’t think it’s talked about enough, that time in your 30s where holidays feel very different. Where the changes in social life are more notable. For me, I’ve not felt festive. In fact I’ve felt very isolated. It’s that transition from having lots of festive social invites, parties and getting dressed up to none of it. I did some lovely Christmas baking with friends which I absolutely loved. But it’s that time in your 30s where things slow down for many. And friends have all built their own families now and it’s absolutely right that they should celebrate with them.

Tomorrow is NYE, I have no plans, no invites and just my mum to see in the NY with. Of course I love my mum, but we spend every evening together and she doesn’t care about NY. So it’s likely not going to feel any different to a normal night.

That’s made me feel quite sad, sad that when I finally reach a point where I’m not scared of the holidays and the ‘blues’ they bring, that suddenly there aren’t any special celebrations or gatherings. Equally, I know I’m incredibly limited and that has an effect too. I can’t party or dance, I can’t drink, I don’t have energy to waste on getting properly dressed up and I can barely stay awake past 9pm anymore. I also know that this impacts others without health conditions, those who have become parents, those who are working non-stop or having to move away from the people they know and love for affordable housing. It’s everywhere, this uncomfortable transition from the fun, carefree 20s to the slower, more sedentary 30s.

So really I’m sad that my health prohibits me planning special festive celebrations with friends. And of course I’m sad that at 31 the only person I have to spend NYE with is my mum. Again I love her dearly, she’s a rock and I wouldn’t be able to see anyone at all if it wasn’t for her helping daily with all the tasks I can’t do. But at 31 you expect to not be living like a 15yo. You expect a life partner, your own home where you can host celebrations and do what you like when you like. But you certainly don’t expect to be undateable, with your mum cooking your dinners and asking if you’ve remembered your meds and worrying when you use sharp knives and cook. It’s in no one’s life plan.

But here I am living that life. That’s really the hardest part, the lack of independence and feeling like a fucking child again. Of course I have no choice in the matter, I do require daily help and I certainly can’t afford my own place.

So there’s me, talking about the 30s transition which I don’t think is spoken about enough when so many are feeling it. But perhaps next year I’ll plan festive celebrations, especially low energy ones with all those I love. Maybe I’ll even push for a NYE gathering or a dinner before everyone goes off to celebrate with their partners and other friends.

I wouldn’t like to jinx it but maybe next year I’ll be well enough to even consider getting dressed up for an evening.

Whatever your plans are for NYE, I do hope it’s wonderful and you’re surrounded by all those you love and who love you in return. And I sincerely hope 2025 is a year of growth and positivity for everyone 🤍

The firsts.

I suppose I can do a little Christmas recap/update before the end of the year arrives.

Christmas Day was incredibly hard, the start of the big firsts without Bella. Since I lost her, I’d spent every day running from home. I’d kept myself busy and making plans to ensure I spent as little time there as possible. But, as you can probably guess, this took a toll. In fact, the repercussions hit me with such a thump that I found myself unable to run any longer.

Home felt wrong. The silence deafening, the spots where I should find Bella were cold and empty. Overnight I lost my purpose. The sole thing I’ve managed to maintain in spite of my health is caring for Bella’s every need. Bella was my purpose, and without her I didn’t know what I was supposed to do. And by not being honest I got to avoid facing the fact that I didn’t know what my role way anymore.

So I finally stopped and I was at home. It was terrible, but it certainly wasn’t comfortable. But slowly it got easier. Then Christmas Day came, 2 weeks since I said goodbye and the first big occasion without her. Also the first occasion I allowed anyone to bring their dog over, which I really struggled with. This day was horrible and fun, and full of joy and sadness. Anger too.

We ate a huge and delicious dinner. But the day was full of MCAS accidents. I didn’t realise just how much food has MSG in, including Pringles! I also learned pork is absolutely a trigger for me. I ended up mostly having a day full of varying reactions which carried through to the next few days. Needless to say I had to take much more than my maintenance dose of antihistamines and I’m back to a bland diet while my system recovers.

Tash and I also introduced our parents to cards against humanity and we learned we’re all pretty fucked up when it comes to our humour! And of course we spent time with Grandma and I had the privilege of feeding her Christmas dinner too.

But the days since have been much better Bella wise. I think I’m about ready to put Bella’s blanket somewhere safe, where it won’t lose her scent. Somewhere I can grab it when the pain comes, but where it won’t be a constant reminder of the empty space.

I’ve also reached out to a local rescue. I’d seen dog who I thought would be a wonderful fit, and she likely would be, but her foster has fallen in love and chosen to adopt. So I’ve let them know that I’m looking for a companion and the sort of dog I’m hoping to find. I’ll never replace Bella, she really was one in a million. But I can honour her by giving my love and a home to another like her because Bella taught me that everything is easier when you have a dog by your side.

I also went to extreme lengths to get myself a Christmas present which arrived yesterday. I bought a copy of Dog People by R M Drake. He was only doing a limited print which was only available in the states. So I signed up to MyUS which gave me a PO Box equivalent at a shipping facility, and they then sent it on to me. There are some hard to read parts, but there’s others that make me feel incredibly grateful for the love Bella shared with me and how lucky I was to receive that.

And here we are, over fed, exhausted, but somehow doing a little more okay than I have been. I hope you all had a wonderful celebration with your loved ones too.

Grief.

Grief is awful.

I’ve not been able to keep still. I’ve made sure I’m out the house every day seeing someone because it’s agonising to be at home, alone with no distractions. I’m not hungry, I don’t care about what I eat or anything. I can’t make decisions because I just don’t care right now.

Friday last week I had no plans and I couldn’t leave bed. I couldn’t face all the places in the house where Bella is supposed to be. So I’ve been busy ever since. And oh boy has it caught up to me today.

Most nights I fall asleep in my chair, because I’m not really watching whatever is on the tv. I’m just staring blankly until I eventually fall asleep.

On Thursday I suddenly jolted awake in my chair, panicking that I couldn’t remember doing Bella’s eye drops that morning. If she missed just one dose of her drops she risked losing her eyes due to having detached lenses. Of course I hadn’t forgotten her eye drops, I never did. But she isn’t here to do them anymore.

These are the raw moments that are gut wrenching. I know I’m slowly getting better, I think. It hurts, and there’s no escaping that. But it’s been a few days now that I haven’t cried first thing in the morning or last thing at night. I don’t have to gather her stinky old blanket up for a hug quite as much. But it’s still nice to do as it smells of her and I can tell her I love her like it’s her I’m cuddling. But now she’s wrapped back in that blanket where she belongs.

My friends have been amazing. I honestly couldn’t have got through this last week without them and their willingness to keep me distracted and allow me to break down when I need to. Just yesterday I received a beautiful frame with one of the photos Kalie took of us a few weeks before she left. I just need to decide where to hang it, but currently above my bed seems like a lovely spot. As well as this framed photo, my friends also organised a nose print necklace and I got to take those prints and send off a few days before saying goodbye. I will forever be grateful to have these girls and their constant support and love.

This weekend I’m going to try and get the Christmas decorations up (better late than never). It’ll be the longest I’ve spent in the house since Bella has gone, but I know I can’t keep running away forever.

I’m still focused on fundraising for the powered chair, which I actually had a demo on this week. It’s a dream and super comfy, which is ideal, but mostly I can’t think of anywhere it wouldn’t allow me to go which is the true goal. I think once I’ve secured the chair I’ll feel a lot more comfortable in contacting the rescue to enquire about one of their lovely dogs. But I need to know I can commit to their exercise needs, so the push is on to get that sorted. And for now I’m happy to not have to put Bella’s blankets and bits away.

I think I’m ready to slowly piece back together some sort of life that isn’t running away from my thoughts and emotions. But I needed to do that, I needed to escape for a minute because I know I would have lost myself in them. I know Christmas Day is going to feel different and I’ll likely be sad at points. It’ll be the first time having family here with their dogs without my own and that’s going to hurt and feel strange.

There will always be a Bella shaped hole in my heart, I realise that now. I realise the grief will never truly go away, I just have to learn to live with it and cherish the years of beautiful memories Bella gave me. I’m incredibly fortunate to have shared the bond I did with Bella. I know given the choice again, and knowing how much this hurts, I would always choose to have that bond and those memories, the pain is worth that. Always.

Bella, my soul-dog.

As those on my personal facebook will have seen, on Wednesday I said goodbye to my best friend. Bella was absolutely everything to me from the day she arrived. My sidekick in all the highs and lows and my anchor through this terrible time in my life.

She had the best worst day. She was the best she’d been in months and I got my wish of letting her go on a good day. Steak for breakfast, followed by grumbling at the neighbours through the window. Then mum and I took her to her favourite place in Frome for a walk where she was full of beans and happily kicking up all the leaves and moss she came across. Then I snuggled with her for the last few hours of time we had together, savouring her weight, her scent and the softness of her ears while she snored happily on my lap.

After eating an entire jar of treats from the vet, the end was peaceful, just as she deserved it to be.

I, on the other hand, am very much not at peace. I’m broken, I feel like a shell. Yesterday I thought I was coping better than expected, but I was in fact just distracted. Today I am alone and I have never felt it so deeply, the loneliness and isolation.

The lack of snoring and grumbling from Bella is deafening. The routines which revolved entirely around caring for Bella have gone and I feel at a loss for what to do. There’s no excitement when I walk in the door, to then be gently guided to where the Bonios are kept. No more tucking in at night and getting Bella into her pyjamas. No gently waking her in the morning to start our day.

Last night, while eating dinner, I set a chip and a bit of chicken aside as I always do, only to realise that she’s not there to give them to when I’d finished. No more relying on Bella to hoover any crumbs I inevitably drop, sometimes deliberately.

Every feels wrong. I know it’s normal to feel this way, it’s perfectly normal. But the pain burns deep inside and today I just can’t bring myself to get up. Because if I get up I have to face all the places in the house where Bella is supposed to be, waiting to give me kisses and asking for them in return.

I will be ok, I have to be because Bella really did get me this far. But for now, I’m not ok and so I don’t know how much I’ll be posting for a while. Please give your pets a hug from me.

International Day of Persons with Disabilities.

Today is International Day of Persons with Disabilities. Its aim is to promote understanding of disability issues, such as dignity, rights and well-being, and the possibilities that can come from their inclusion in all aspects of life.

For 3 years now I’ve been able to say I’m disabled, but I don’t think I truly accepted this until recently. I couldn’t accept it wasn’t going to just go away and I couldn’t resume life as it was, I couldn’t accept that life didn’t exist anymore.

Now I can confidently say I am disabled, and I will do everything I can to be able to integrate that into the parts of life I can still enjoy on occasion. Though I will admit I still feel embarrassed using mobility aids in public, but I can cope with that over being suck in the house all the time!

When you compete in sport, or anything, you have such a drive/hunger that’s hard to explain sometimes. But I feel I’m starting to get that drive back, it’s just a little different. I’m not chasing a bigger deadlift or that British Squat Record or another medal. I’m chasing a chance to do a little more each day, knowing that a little could maybe lead to a lot. For now, that little is caring for Bella and maybe a small bowl of washing up or putting a load of washing on (And remembering to put it on the airer!). And that’s ok, my targets changed is all.

Today, for me, is also about accepting that this can happen to anyone for any reason. I didn’t know that training session on June 16th 2021 would be my last, I didn’t know I’d not be able to work or go on long hikes. I didn’t know that the implant surgery would prevent me from ever lifting heavy again or that there is something else causing my disability, it’s not just a result of being inactive. But I now know those things and I accept them, though some days are admittedly harder than others.

I’m slowly learning that, despite my health and disabilities, I am still loved and have value. My greatest fear is this happening to someone else and them feeling as lost and helpless as I did for as long as I did. So I will continue to come here and share the good and the ugly that comes my way for anyone who chooses to read it. I know it has helped people, and not just me, which makes it worth being vulnerable.

Feeling alive.

I’m heading into the start of the week with a lot of good feelings inside. It’s been a fab weekend, exhausting but awesome.

Yesterday I got to go to the Stourhead Christmas lights with close friends and my goddaughter. I blagged the last scooter to hire from my local mobility shop, which thankfully fit in Laura’s Boot. Without this I wouldn’t have been able to reach the start of the trail, let alone get around it all with no increase in pain, instability, and reduced drain on my energy. I wouldn’t have been able to really enjoy this evening, I’d be too consumed with pain, fatigue and trying to ensure I didn’t fall. But I did have the scooter and I did truly enjoy the night!

I’m paying a little today, but as I said in my last post my energy levels have been back to very low for the last week or so. I’m not entirely sure why, but I’m currently back to being very limited and having to be extra careful where I use the energy I do wake with.

Today my dad and sister came across for a little lunch and catch up which was really nice too. They come over every weekend and it really makes a huge difference to my mental and spiritual health, especially on the weeks that I’ve been stuck home or in bed all week.

Using the scooter last night, and seeing just how huge the difference it can make on a week where I’m really restricted was huge. A few hours out filled with joy, fun and love when I feel terrible is just the greatest gift. It made me wake up today with hope for this fundraising and hope at the idea of what getting a chair could do for my wellbeing. Instead of always asking myself “what can I do?”, I could be asking myself “what can’t I do?”

Perhaps that’s stretching it a little as I’m still sick, I’m still disabled and extremely limited by fatigue, even when it was improved. But when my health allows me to get out for a bit I would be significantly less restricted on what I can do those days.

I’ve been lucky in reaching out to old contacts this week to ask for their help sharing my fundraiser and several shared and sent me wonderful messages of support which have meant a huge amount to me.

I’ve even seen a shift in my mental health the last few days. I’ve been welling up randomly at simple things which is great as it means things are moving again. I just have to remember not to fight it!

I hope you’ve all had a great weekend too and as always I appreciate you and all your support. 🤍

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.

My darling and I.

I got to take Bella for another walk today – bloody unheard of seeing as it was just Monday we got lost.

We didn’t go far, across the road to the fields for 20 minutes or so, enough for us today. But on this walk something wonderful happened.

About halfway I stopped to let Bella catch up, once every blade of grass between us had been inspected, shredded or pee’d on. In this pause, marvelling at my dog like I always do, I became aware of a strange feeling within me; Peace and no pain. Yes, you read that right. I too was in disbelief that I stood and did a full body scan, and nope, I couldn’t identify any pain. My head was clear and I got to take a deep breath that felt like it was the first time I could breathe in a long time.

Inevitably, it lasted just a few short minutes but it was wonderful. Usually walking increases my pain, but today something was different.

Friday I started my 4-week low histamine diet. Friday and Saturday were rough days with pain, nothing unusual there, but my watch was certain I’d woken Saturday with a higher body battery than usual – 51%!! I’m not sure where it was stored as I couldn’t feel it or access it, but I’ve seen the watch is quite accurate and helps me prevent crashes by running out of battery.

However, today I woke up with 82% which is a number I haven’t seen since the start of all this. Better yet, I felt it. I didn’t feel so heavy, lower pain levels and a clearer mind. It could just be one of those lucky days, but I’m wondering if perhaps it’s eliminating histamine and therefore reactions.

Time will be the decider on that, but what if my health has been so dismal because I have been having reactions for the last 3.5 years? I’m getting ahead of myself a little, I know, but I have to hold onto hope that something, at some point, will help me in my quest to heal.

And my darling thoroughly enjoyed her walk with me today. The increase in meds is starting to help too, I’m seeing promising changes finally. She’s become more cuddly. For a long time now she’s refused to keep me company when I’m stuck in bed, and only occasionally requested to be a lap dog in the evenings. But nearly every day, for the last 5 days, she’s keen to be the velcro dog I’ve always know. It’s been wonderful, and incredibly good for my soul. That she wants to seek and give comfort again is nothing short of a miracle.

The barking all day has also reduced, though when she gets started she’s insistent. But those times are nearly always for something like cheese on her breakfast, lunchtime snacks, toilet breaks or dinner. Not forgetting second dinner of course, she certainly won’t let me!

I really think my Bella is starting to become content again, and on just 200mg at lunch times, which can be increased up to 500mg. Again, I don’t want to get ahead of myself, but I really believe this could be buying us more time together. That and the fact I’ve managed to walked her 3 times in as many weeks really feels like a sign of progress for us both.

I’m glad I get to come here and share that hope and joy with you, I know my updates aren’t always sunshine and roses. But maybe, just maybe, my hope has not been misplaced this time 🤍