Happy NY.

Happy New Year to all my friends, family, readers and supporters.

Without you all I don’t know that I’d have made it through these last few years. Every single positive word or show of support has helped me in some way get here and I’m so grateful to have received it.

I have updates, Christmas was great but I’m still recovering. My pain isn’t quite as good as post programming and I realised my stimulation is stopping when I move my head again, so possibly more pain due to less stimulation being received. But that’s a 2024 problem. I’ve been referred to a specialist rheumatology physio, that’ll probably be some time from February. So fingers crossed that 2024 will be the year I lose the walking stick.

Bella is Bella. Maybe just a little more of the Bella seen on her extra days. I love her, and I’m grateful to be spending NYE with her as I really wasn’t sure she’d make it. But she did and she’s been a pain in the arse all morning – I wouldn’t have it any other way. She’s been out 4 times, cleaned Prus litter tray and demanded to be tucked in 7 times – she is truly living her her best life and taking full advantage of her ‘tuck me in again or I’ll give the ‘I was abused a decade ago’ eyes’.

I’m saving money. I’m not sure what for yet – it could be for my MOT in April, any surprise vet bills Bella brings me, to buy myself a divan bed so I can change my own bedsheets and get up easier, to pay for education to be able to pursue a new career I’m interested in. Or maybe it’s to buy flights to Australia and get a clean break from my place of suffering for a few months once I’m a little closer to being ‘better’. I hope it’s all of the above but it’ll take me a few years to save for it all. Maybe I’m saving for the winning lottery ticket!

I hope the NY brings you all the right things too. I hope you all remain wonderful and feel the love that you so kindly share with others, myself included. You truly deserve it 🫶🏼

Sleepy and grateful.

I took today a little slower. My pain was around a 5/10 where it would normally be 10/10 after all I did yesterday. But my body wasn’t particularly impressed with me.

So I added some more decorations to the tree and then my sister came over. While she and Mum went to the shops I stayed and slowly hoovered the living room, kitchen and dining room. This alone is normally a task I spread over two days. I don’t know who I’m trying to impressive pushing my already tired body, but it’s done. I then sat and wrapped gifts for my niece and nephew, who are visiting tomorrow with my brother and his fiancé.

I spent some time with mum and Tash when they came back and then dad came over for a little bit. Once dad and Tash left I told myself I was very much ready to rest. So whilst mum put a bolognaise together for tomorrow I set to work on making us fajitas for tonight. THEN it was time to rest.

And resting I am. I’m parked in my recliner with a heat pack for my very upset back and my heated blanket to ease the pain in the rest of my body. But my Hemicrania pain is now around a 6-7/10. I’d say a 6 with occasional stabs at 7.

I’m obviously not learning from my previous lessons of doing too much, and I promise myself that I will. I just knew there is a lot coming up this week and to get as much done now will make things a little lighter going forward. And yes, that’s some bullshit excuse but it’s the only one I have!

I’m beyond impressed with this programming so far, so I know I need to ease back on testing my limits. But the recovery rate when I’ve done too much can actually be felt in the same day. Just 3 hours ago my pain was around an 8/10. That’s unheard of. My pain is always at its lowest around 10-11am after meds have kicked in. The only way it goes from there is up, so to see an improvement in the same day is nothing short of a miracle.

Tomorrow, despite family being here, will be fairly low key. A time to catch up with them all and play with the kids from the comfort of my recliner. So I’m looking forward to it. But first I am very much looking forward to an early night.

I’d also like to add that I know I’ve written before about how disturbed my sleep is but over the last month I’ve seen a vast improvement thanks to melatonin patches from Kind Patches. I ran out but my order arrived this morning so I know it’s going to be a wonderful rest. They aren’t full of unnecessary shite, simple oils and vitamins that are well worth trying if you struggle with getting a good nights rest. That sounds like an ad, I assure you it’s not. I just know how vital a good nights rest is to the rest of your health and will always share whatever helps me.

I hope all my readers have had a great weekend and are looking forward to the week ahead. You all mean an awful lot to me, especially sticking with me through all of this. I’m just a grateful woman who’s very grateful to be able to share good news finally.

A gift.

I wrote this last night and wanted to share.

Just coming to share a Friday night win. Wednesday I had my implant reprogrammed. It was a new guy and he decided to wipe all previous programming and start again, given I’ve been bed bound for 6 weeks with 9-10/10 pain constantly. Yesterday was bloody awful, until I got to evening med time and realised I had a full days allocation of meds in the pot. So I’d obviously forgotten them and the day was of my own doing.

Today I took my meds and I’ve been non stop since 11. I did a 45min T K Maxx trip, an hour on the phone to my dad, an hour round my friends house, a little jaunt around Tesco for Christmas bits and bobs, then up in the attic followed by 2 hours of finishing decorating.
I’m exhausted, but what I did today would normally take a month or more to get through. My pain was around a 4/10, is now around 6-7 but I’m ok with that. I hope we’ve got it right, but if it’s just a random good day I am still unbelievably grateful and emotional. And it’s so nice to finally have the tree decorated and not just sat naked like it has been for nearly 2 weeks 😂

Tomorrow will be what it will be, but today was a wonderful gift 🫶🏼

I see you.

I just got a notification to say my blog is receiving a high volume of traffic today. So I exited safari to go check it out, feeling excited that maybe my blog is reaching those who might find it helpful for them and their journey. Then I realised, I exited safari where it was in fact me reading my blog.

It’s not something I’ve ever done. I write, post and forget about it. There’s the odd one I’ve read back and sometimes I skim back to edit spelling and grammar mistakes due to my hasty typing. But I don’t read them generally. For some reason today I did, and I realised I’ve spent over 2 hours reading my own story like it was someone else’s.

I’ll be honest, I really loved reading some of my entries about walking with Bella and about my friends and family and all they have done for me. But to reach those you also have to go past all the sad stories and moments that I’ve shared over the last few years. It truly is tragic what has happened and I feel a deep sorrow for all I have been through, and in turn the ones I love.

But I also got to return to messages and comments I’ve received from people who have read parts of my story. People I haven’t spoken to for years, people who I have only ever met in passing, and people who I have met through this journey.

I’m led here, feeling the sadness and grief, but also feeling warm and fuzzy at the kindness of strangers, friends and acquaintances. I have received so much love and support, when at times I thought I wasn’t deserving of it. I often think this must be really draining for those around me. To hear me talking about the same shit over and over. Because I’m not really doing anything to have anything to catch them up on. They ask how I am, and they want the long answer. But the long answer is largely the same as it was last time, and the time before that and the time they asked two years ago. In my mind I think god they must be so fed up, like when will it end or why is she still banging on about this. But I know that’s in my mind, because I am a hyper vigilant person that picks up on energy, moods and feelings. And I know when they ask how I am that they truly want the long answer, and they listen with love, care and empathy, and they support me through whatever comes up in my answer.

The surprising thing is that I just never expected to be to loved by so many. I certainly never expected strangers to give a shit about me and check in regularly. But they do. I guess I never really knew or accepted how loved I was and am. I might not have a life partner, but I am still unbelievably loved and that’s enough to make a grown woman cry.

What I’d like to say is thank you. It’s very important to me to make sure those I love and care about know that I see them and I love and appreciate them. It’s my love language, to feel seen. I want to extend that to everyone else who has sent me messages, checked in, read my blog or shared a kind word about me. I see you, I appreciate you and I am eternally grateful for the good energy and love you have shown me.