Month: September 2022

In my last post I discussed how unwell I’ve been feeling, and I realised the onset of it lines up with the start of the CGRP inhibitor trial I’ve been on. So I wrote a very lengthy email to my neurologist, with the help of Han 🖤. I detailed most of what I’ve been feeling, symptoms etc. I told her that the doctors had done a full blood work up and it was clear, so I asked if could it be the inhibitors causing these new issues. And if so, should I continue to the end of the trial.

Well her response has hit me pretty hard. She stated that clearly if I’m feeling worse I shouldn’t continue the trial, and that she’d send a letter to my neurosurgeon to arrange me an appointment.

I spoke about the fear I’ve been feeling at running out of time in this trial, running out of time before the implant became my only option. And in one email, containing just two sentences, my time ran out. I now have just one final, terrifying, Hail Mary left.

I’m a bag of emotions today. I was having nightmares all night about Bella – they’re always about Bella – and at 3.30am I gave up on trying to sleep as every time a new gut wrenching scene would unfold behind my eyes. Of course my dreams didn’t really have anything to do with Bella, my mind was just trying to highlight that I’m feeling anxious. I’m also feeling exhausted, scared, insecure and very vulnerable. I’m feeling everything. Too much in fact that I’m struggling to process it, to see what’s there and why. Because they’re all shouting over each other, too loud to be distinguishable.

I knew that this was coming and somehow that’s not at all comforting. If the Inhibitors are the cause of my increased suffering then, even if they were helping my head, they’re not a viable long term treatment option. I just thought I’d feel a bit happier seeing as this was the treatment I’d be pushing for. The one with the most hope, though also the one with the most risk – in theory. But I don’t feel happiness, in fact it’s quite sad that I have run out of options. There are no more fall backs. Which puts a lot of pressure on me wanting and needing this to work – which of course can create a whole heap of shit if something isn’t quite how I hoped it would be. Because there has been a lot of disappointment on this road.

But all I can do is trust the process and move forward to where this path is taking me. There’s still that one more option left to come and there’s every chance it could be the right one. I just need to have faith in this reroute and manifest the fuck out of that shit. Or with any luck I’ll find out the surgeon has come up with another option, Because having a back up tucked away would bring me a lot of relief from these feelings.

I’ve had this deep rooted feeling, more like an impending doom, that somethings wrong with me. I tried to sit with the feeling, see if it was just because of my head and it wasn’t sitting right. They didn’t fit.

A few weeks ago I found a lump and eventually went to the docs last week, as it hadn’t changed, who referred me to the breast clinic. Over the weekend it suddenly changed and turned out to be a horrible infection. When the doctor said she was doing the referral I was like oh well, I knew there was something wrong with me. Obviously I was wrong.

Over the last year I’ve been chasing treatment after treatment, playing dartboard medicine to try and get my pain under control and get my life back. I’ve been afraid to settle and accept where I am. My mind told me that if I accepted where I am then I’d be stuck here forever. Like accepting where I am and still trialing treatments couldn’t go alongside each other.

The fact is I know I’m feeling off. I’m feeling a far deeper sense of exhaustion, permanently. My head is persistent and that good day I wrote about a while does appear to just be an anomaly. I’m getting cold chills, and I ache to the bone. I’m also struggling with my anxiety a lot more, particularly in social settings. It’s hard to know what is a symptom of my situation and what’s actually a symptom I need to check in on.

I got an email reminder to get me to place an order of the third dose of my current treatment. My third dose in due October 7th, and is the final jab in my 12 week trial. It means that I am just 5 and a half weeks away from the implant being my final treatment option. It’s a treatment I have far more hope in. And currently I’d say the CGRP inhibitors I’m trialing are a failure. Last week I even went to London to visit a cranial osteopath to see if he could help me.

He did help me. He said my head was a mess, that there was so much tension throughout my face, skull and neck. That he’d never seen anything like it. That through his hands my invisible illness was in fact visible. It took my friend highlighting this for me and I’m so grateful she did. But unfortunately the manipulation he performed has not helped me.

So my hat of tricks is now empty. Which means unless my final jab miraculously works, then I’m 5 and a half weeks time I’m left with one option. As I said, I have a lot more hope in the implant. But I’m starting to notice an additional feeling of fear along with the feeling of something wrong. Perhaps this feeling of impending doom is because I’m near the end of the road where a seriously invasive surgery is my last playing card. Perhaps the feeling of there being something wrong is because I’ve been filling my body with poison for years in treating this condition and more so over the last year. My feelings are probably perfectly normal of anyone faced with this decision, but I need to find a way to calm them down. I need to find a way to accept my current circumstances while also not giving up on my hope and fight for a treatment that will work for me and get me back on the road to rehab and recovery.

I haven’t been writing recently, hence the lack of posts. It’s not that I don’t have anything to write about, I have lots. But sometimes I feel really detached and sometimes disassociate. I think it’s a coping mechanism to protect myself mentally, which of course can be a bad thing sometimes. But not always. I get overwhelmed so easily that I detach more, and recently there’s been a lot on, not all bad, but even the good can be overwhelming and so I detach.

First off, I was looking at recliners as my last post stated. And then one afternoon I got a knock at the door with a man telling me I’d bought a recliner and he was there to deliver it. I had not bought said recliner, and after a strange two Ronnie’s sketch on the doorstep her set up the chair. I called my mum to find out if she was the anonymous buyer, she wasn’t. So I tried my dad, checking whether he was in one of his many floral shirts as the man said it was a woman who bought it. It was dad. So I tried my friend Han, who was the anonymous purchaser along with Another friend, Ricky. So I sat crying in my chair, thankful that I had therapy in a few minutes.

I find it very difficult to accept help, even harder to ask for it. We all find it awkward at birthdays unwrapping gifts with all eyes on you but it’s something that gives me mad anxiety. And so the gifting of this chair totally overwhelmed me. I don’t know how to say thank you, I even offered to give them to money back. I’m truth I felt so thought of and seen. They saw my needs and helped in a way they were able to. And now I’m able to sit up, albeit reclined. But I’m upright, not led down permanently. And it’s SO comfortable. I’m so comfortable. Which means the world because being in constant pain with both my head and my joints means getting comfortable is near impossible, or at least it has been. So to Hannah and Ricky, thank you from the bottom of my heart.

Then my friend Darcy helped me too. I’ve been putting off selling my car. I need to because I need to clear my debts which I currently have no way of paying off with my current income. But my car is also the last bit of freedom I have. I’m not able to drive often but I’m so reliant on others, having the car there makes me feel a little less trapped or dependent. And of course I absolutely love it. I finally have it and took it to a car wash for a valet and then went to Darcy’s for coffee. And she offered to take photos of my car so I could sell it. This was something I felt a lot more comfortable accepting, and Darcy is an amazing photographer, so of course I accepted. Now my car is up for sale and I think it was just having her support and help really made it much easier for me to get on and advertise it. So Darcy, again from the bottom of my heart, thank you.

THEN I got an email to state I’d got tickets to see Live at the Apollo for their Christmas special. I applied in April, thinking I’d be better, and totally forgot. I didn’t think I’d be up for it, in fact I wasn’t. But as my Dad said, I’d be mad at myself for not trying. So on Wednesday I was in London. We had to leave at 8am and mornings are my absolute worst time and giggling about in a car does not help my head pain one bit. But I took my walking stick, which by the way helps me far more than I thought it would. I don’t walk very fast now because of my mobility and I’m a little wobbly, which again sets my head off. But it keeps me a lot more stable and in turn my head does not immediately scream in pain. So the stick was a winner! Anyway, we did it. I pushed through the drive, the incredible show, lunch and lots of walking and standing about. I’m still paying the price for it now, 4 days later. But I had a wonderful time with my parents and sister. While the tickets were free, it was a way for me to say thank you to my family for all they have and continue to do for me after the crappy last year. And again, Darcy and Hannah, thank you for helping out with Bella on the day! See, I’m surrounded by wonderful people and for that I’m always grateful.

Last weekend on The Friday evening I got a call from my brother asking me what my favourite crisps were and what tea I liked. He then announced he’d be down the next day for a surprise visit with his partner and kids. They arrived with fresh bread and meats from a Polish deli, which I cannot recommend visiting enough. They also gave me a huge box full of tea, body scrubs and butters, hand cream, face masks, choccy biscuits and fluffy socks. FYI, whenever I see my brother I cry. Every time without fail, and then when my 3 year old niece came in with this big box shouting ‘present’ at me I of course cried again. We had a wonderful day, eating, relaxing, exploring antique shops and Polish Deli’s. It was perfect and so good for my soul. So, again, thank you to them for making me feel special and full of joy.

I also had Bella at the vets for a check up on her eye after 3 emergency surgeries to save it in April. And got told it looked like she might need to have another emergency surgery after finding a growth on the eye. So we booked another check up for 3 weeks time where she would likely be sent for surgery. I’d been taking regular photos of her eye in that time and emailed a batch over to the vets for review. They got back to me quickly, which obviously made me panic, until I read it and saw that the appointment would be pushed back another month as the growth didn’t appear to be growing rapidly. So bad news followed by incredibly relieving news!

You see there’s been a lot on. It’s been overwhelming, lovely, joyous and exhausting. In no particular order. But I feel it’s all been very full on, in a good way, but it’s been in a way that I’ve felt very detached for the last few weeks. I still do, but I woke today and just felt like writing about that. Writing about the good and explaining my absence. Writing about it has just reinforced how lucky and grateful I am to be surrounded by such incredible friends and family. Each of whom play such an important role in my life and bring me joy in every interaction.

So I had an interesting afternoon. I went shopping for a recliner chair and a walking stick.

That’s my reality. I realised the last time I went out and did something was in July. I’d gone to a garden centre with my and I was really struggling. I struggled with my mobility and my head pain. Walking increases my pain and it can make an already bad day unbearable. It was also very hot and sunny and bright light also doesn’t help me out. We walking through a few bits, I left my mum to walk around outside and chose to wait just indoors for her. But I ended up needing to sit down on the floor. Mum finished browsing and helped me back up again. Then walking round further inside I needed to rest on a shelf. We decided to go have coffee and something to eat in the cafe to rest. Then tried to go look round a bit more with little success. They had wheelchairs available and my mum kept suggesting using one might help me be able to enjoy the time without suffering. Obviously I’m a stubborn cow so you can imagine how that idea was shot down.

I haven’t been anywhere since. I realised while on the phone to a friend this weekend that it was out of fear and anxiety. Mostly fear that my experience would be the same. Since then my mobility and general stability and stamina have decreased significantly. So fear that I’d have to leave early, fear of increasing my pain, fear of embarrassment of needing to use a wheelchair. Fear of being a fraud.

That’s a big one. I felt it today when looking at a recliner. Bare in mind that I spend 90% of my time led down as this is the only time my head in supported and so my pain is less intense. I was looking at said chair when a severely disabled old lady walked in with two sticks. I’m stood there thinking what a fraud. Because I’m not THAT disabled. But as my therapist said, I might not be THAT disabled but I am disabled.

There’s also the other conflicting feelings such as am I enabling my disability. By using walking aids to try and make things easier, will that in turn make me worse? Is it succumbing to my condition? Is it me giving up on not being disabled?

But it dawned on me in speaking to my friend that perhaps if I took a walking stick when going out and doing things perhaps I might be able to go further. Perhaps I might not be so scared of falling and I might just be a bit safer. But I’m 29. Only 29. I shouldn’t have to be even considering these things. But on the other hand, I’m only 29. I shouldn’t be too scared to enjoy life when I can. I shouldn’t be too scared to do anything too scared to not allow others to see my suffering.

Because I am. I know full well that I push through to try and appear like I’m not struggling when around my friends. I don’t want them to see me how I do. Because currently I’m stuck in this space if only seeing myself as this sick disabled person. I’m only seeing my suffering. Because I’ve been too scared to do things that bring out my joy. The other side of me that’s lively and vibrant, funny and silly. I’ve lost sight of that Chlöe because of fear. And that’s a dangerous and terrible place to be.

So I’ve decided that I will buy myself a walking stick and a recliner. Because it’s self-care. It’s a form of support that I need right now. I need support to enjoy life. And I know eventually I’ll feel ok about that. I know eventually I won’t be so embarrassed or feel shame about embracing where I’m at right now. And I know damn well that getting back to enjoying life when I can is worth pushing through these negative feelings.