Month: December 2023

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.

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 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.

As usual I’ve taken a little sabbatical from posting. I’ve of course been writing but I’ve kept it all to myself, largely because I’ve been writing for my own internal processing.

I’ve spoken before about the process of grieving the loss of who I was, what I was, and the life I had. I had these dreams of finding the right treatment and, whilst knowing the rehabilitation would be a lot of work, I thought it would just be a time for joy. Post op I felt a lot of joy, but also the dread of ‘I hoped to be better but didn’t actually plan what to do when I was’. Then the device stopped working properly and I was arguably more disappointed that I was pre-op. I now know that it’s going to be a process of trial and error to get the device working at its best while I heal.

Now I understand that, but I now also know what I’m going to face when I am feeling better: what the fuck do I want to do?

It’s a jumble of emotions. Largely, for the last few weeks, I’ve been processing loss again. When I researched this treatment I didn’t come across much guidance on what I’d no longer be able to do. The information just isn’t there to find and as we know the NHS hasn’t provided me with any either. All I knew was that I’d only be able to dive to 10m and I wouldn’t be able to skydive or bungee jump. What I didn’t know until I saw my surgeon at my reprogramming 3 weeks ago was that I wouldn’t be able to lift to the same level as I did previously, meaning I’ll likely never compete as a powerlifter again. I’ll also likely not be able to drive like a hooligan around tracks anymore. I’ll also not be able to do a lot of the things that I get fun and joy from, mostly adrenaline spiking things. I’ve always enjoyed the non girly girl stuff. As I said to my goddaughter, if you want to get muddy, break stuff, go on rollercoasters and do something that’s either dangerous or stupid then I’m the Auntie for the job. (Obviously within reason as she’s 8, but I’m 30 and typically reckless so the rules don’t apply to me).

My idea of fun has been taken away and it isn’t sitting comfortably. The trouble is that these 30 odd months have made me feel really boring and really bored. I am sick to fucking death of reading. Yet I’m stuck watching others have fun that’s often beyond my means, but stuff that I would have loved to be able to do, even if it’s not reckless fun. Then there’s the fear of not just missing out on the fun, but that when I am better will I have missed the fun? I don’t know if that makes sense, but ultimately everyone’s lives have moved forward whilst mine came to a standstill. So will they still be interested in the same levels of fun that I’ve missed out on when I am better and ready for it all. Will I just be the 30 odd year old doing dumb shit on her own? Because generally as people get older and their priorities change, so does their need to be safer and more secure. I don’t want to be boring Auntie Chlo, but it’s who I’ve had to be whilst ill. Will I ever get back fun Chlo or is she truly gone forever? Not dormant, but missing entirely.

The previous Chlo found her niche in powerlifting, but she also found the things that she truly finds joyous and fun. And now she can’t do a lot of them. So I have to change my perception of what a healthy life might look like, no more dumb reckless shit. And don’t get me wrong, I also found immense joy in hiking with Bella, and doing science experiments with my goddaughter and going down death slides with my niece and nephew. Or throwing doggy birthday parties with friends and drinking tequila and playing board games with them. That’s also my bread and butter and I get to keep those things (thank god!).

There’s also the thoughts of what I want to do. I’ve turned my anger and disappointment into action these last few weeks which has helped me cope once again. I know this treatment isn’t a cure and I’ll never get 100% of my life and time back, it may only be 60%. But within that 60% I have to provide a living for myself that covers the cost of independent living, but I also have to fit in actual living. Then the career I choose must also be flexible enough that if I’m having a bad day I can take it and many employers have a restriction on sick days. So self employed seems the sensible option in that sense, but then it must also provide me enough income to be financially secure and comfortable in taking a sick day. I also don’t wish to be stuck at a desk again and would rather do something I truly enjoy with less stress than the construction industry comes with.

I’ve toyed with many ideas over the last few years, including being a therapist or a lorry driver. Or even a driving instructor. But I think I’ve eventually found the right choice, something that I know I’ll enjoy and something I’ve had a casual interest in for many years. I’ve even taken courses on the side a few years ago just because it was of personal interest, not because of work.

I’ve been doing research and seminars over the last couple of weeks. Now I still feel awful, but I’ve also got a drive that’s giving me the capacity to spend a few hours a day on this. I’ve also started volunteering for a support group, soon to be charity, that’s helped me immensely this last year. Now my goal is to figure out how to fund the training required to start in a new career when I’m feeling better. I feel I could start now, despite how I feel, as it’s online and at my own pace. But it’s not something I have the funds to invest in right now.

Until I’ve figured out the funding though I now have a purpose and feel I’m starting to become useful again through volunteering. I’ll keep up my research into my ideal career to prepare me for when I can start training and hope to be able to share that dream with you all sooner rather than later.

But I just came to share my rambling thoughts and give you the insight into the processing and grieving that’s been happening for me. But to also share that I’ve been able to turn it all into positive action, something that wouldn’t have been possible previously.