Month: April 2023

Today I’d planned to go into town for lunch with my mum. To write a shopping list together and to go to the polish deli for the best ham. And pretzels, obviously.

When it came time to getting up I couldn’t get passed my anxiety. I wanted so badly to go into town but I was so anxious about being seen in public, especially with the risk of seeing people I knew. I sat and spoke with mum for a while, who offered many alternatives which sat more comfortably with me. But I said no, we’re going into town.

I go up, bathed and did it. Had an amazing lunch, wondered through a few shops. Not far, I can’t do far. And I couldn’t do fast. My mobility is far worse than I let on, its impact on my walking is just a small part. We didn’t go far, but I reached a point where I was struggling and regretted refusing to get my walking stick out the car. So we wobbled back to the car, got my stick and headed to the polish shop.

Now here’s the thing, I don’t know whether it’s the added stability or the fact that the fear of falling is greatly reduced, but in comparison to without, I can walk at a rate of knots with my stick. In reality it’s still far slower than most people’s normal walking pace, but for me it’s like running. It’s also the first time I’ve used my stick in my local town, aside from the odd dog walk in the fields.

There’s a huge stigma, that is entirely self imposed, around people seeing me with my stick. My family has seen it, but I’m still reluctant to use to. Until a few weeks ago, when I took my stick while walking with Ricky, none of my friends had seen me use it. I just didn’t have a choice that day, it was use the stick or cancel. I feel especially terrible when I walk passed older people, hobbling along, without walking aids. I feel like an imposter or a fake.

I managed to explain that feeling today to my mum by saying I feel like I’m in a grey area between being truly disabled and able bodied. In my mind I shouldn’t need a stick because I can walk. To which mum pointed out everyone that uses a stick can walk, hence the term walking stick. Duhhh. Like I say, self imposed and imagined stigma. That I somehow don’t meet the threshold to have help. Even from an inanimate object.

Of course we’re back in common ground here. Once again I am denying my needs.

But I don’t want to get into that again. I came here to share my win, that today I didn’t allow my anxiety to deny what I wanted to do and I used my stick in public.

This weekend I took myself off to my brothers. I needed a break. I needed to step out of my reality, leave Bella in my Mums care and truly stop. It was wonderful. We did a bit of DIY, we ate significant amounts and we did absolutely nothing on Sunday. It was exactly what I needed. I had the offer to stay longer and I really was considering it. However, I woke Monday, my brother was at work and I was alone. I did my usual morning routine of coffee, meds, rest and then showered. (Side bar – I’ve never lived somewhere with a shower and its fantastic!) Anyway I was up and showered and at a complete loss on what to do with myself. I couldn’t figure out how to play his Xbox so I emptied the dishwasher, paced around with some pringles and packed. Ultimately I was feeling uneasy and couldn’t sit still. So I got in my car and started heading home. Still with this really uncomfortable feeling that I couldn’t quite interpret. Yet. As I started my journey I started to feel worse, lower, tearful and scared. I recognised the feeling from my time in Eastbourne on my way to the cliff. It was the last time I felt as suicidal as I was in that moment. My inner child was asking to go to the beach, I decided that would put adult me in a dangerous situation where she may make the wrong decision.

I have contingencies in place that I’ve discussed before – reaching out to friends or family, calling Lee and making sure I’m not alone. I really felt like I should call Lee but I wasn’t sure whether I was getting ahead of myself. Like “is this the kind of moment that contingency is in place for?” I didn’t call Lee, but as she asked today whether I should I now know looking back the answer was yes. It was exactly that situation. I was sitting in first gear on the M5 for an hour, which I’m grateful for – can’t do anything stupid at 6mph in the fast lane! I was trying desperately to identify why I was having these thoughts and feelings, what was driving them. All I came up with was that I didn’t want to go home. I didn’t want to go back to my reality, because for a few days that reality seemed like a vague memory that might not be mine. It felt like I was willingly driving myself back to a situation that was destroying me. But I was telling myself I had to go back for Bella and because I had a telephone call with Southmead pain management Tuesday morning. 29 years of always having an excuse at the ready.

When I got back I just cried. I wanted to be anywhere but there, dealing with Bella and stuck in this place that’s been my place of suffering. Not because of the place or Mum or Bella, its just where I sit in my suffering, so its what I related it to. I didn’t want to leave my brothers really, I just didn’t want to be on my own with my thoughts and feelings. Mum was gushing about how good Bella had been, hadn’t woken her in the night or caused any real bother. Of course I come home, she’s immediately clingy, wakes me over 4 times in the night and gives me loads of shit Tuesday.

Tuesday came and went. I was miserable, Bella was Bella and the call never happened. I chased Southmead repeatedly but no call came. Today I called them and I was marked as “did not attend”. They messed up by booking a face to face appointment and telling me it was a telephone consult. Now I have to wait for them to reschedule. Just another delay in my journey to the implant. I know it’s just a simple human error, but there’s been so many of those in this journey of mine. For them the delay is insignificant. For me its devastating to the extreme. The delay means a shit ton more to me because its just prolonging my suffering.

I am not coping. On any level. Ultimately Bella requires more care now, along with the sleepless nights its letting her out 10+ times a day, tucking her in constantly and reassuring her when shes just totally fucking lost. Plus lots of tablets and eye drops. To most while it is more work its not unbearable. To me right now it nearly is. I’m barely coping with existing. As a result I’m reacting by snapping or shouting. Partly because its annoying, but mostly because I’m seeing my soul mate disappear and suffer. Its grief and sadness mixed with my inability to cope.

Today I had therapy. It was an extremely tough session which ended up with a huge revelation that’s extremely sad. On Monday I had a choice to stay at my brothers, to enjoy the rest, peace and freedom that I needed. I couldn’t comfortably sit still and cope with my emotions and I chose to come home. Subconsciously I’m repeatedly making these choices to not have what I need because on some level I believe I don’t deserve it. I’m constantly denying my needs, denying myself the peace and freedom. I feel I constantly have to help everyone else, Bella included, above myself. I know I deserve help, from friends, family and especially the NHS. But why don’t I deserve my own help? Why can’t I show up for myself? Why am I not allowing myself joy, rest and freedom?

The truth is I don’t know how to feel joy anymore because I don’t think I deserve it. I’m constantly denying my inner child her needs and wishes. She wanted to go to the beach Monday, I chose suffering and catering to someone else’s needs, even though their needs were being catered for by my Mum. I got the opportunity to continue pretending, even if just for a while, that my existence as so fucking disappointing. And I chose to not give myself that time. And it’s not that I’m choosing my situation, no one would choose this, but it is my reality right now. And I chose to suffer in it rather that give myself a little peace and joy in it.

When will I stop abandoning my inner child? When will I hear her needs and decide they are priority? Why don’t I like myself? Why don’t I love myself enough to help myself? Ultimately I’ve been conditioned to put others needs ahead of mine, that they are the priority. But as an adult I get to choose to put myself first. I just don’t know how.

Lee has set me homework – I have to dedicate this week to my inner child. To do what she wants to do and give her what she needs. I have to ask my mum to continue sharing the care of Bella, because I genuinely cannot cope with it alone. I have to write about my inner child, talk to her, draw her and just do everything for her.

I also have to tell as many of those around me about what happened Monday, what I felt and the fact that I am not showing up for myself. I need to arrange more time away from home, but not alone. Monday I decided to carry on home rather than to the beach because I knew I might not come back from the beach. If I continue to not choose me, to not love me, then there may be a time when I don’t have the sense or strength to make that decision to drive home.

And that, scares the fucking shit out of me.