Month: December 2024

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. 🤍