I’m in a bit of a rut at the moment. I can’t seem to find the healthy balance my body and soul needs. I don’t think I’ve been able to find a ‘balance’ since this all started but I’m struggling now more than ever.
I’ve said in a recent post that I’m finding myself more aware of my feelings again, particularly loneliness. Loneliness is a very complex emotion. See I’m not alone, I have support in every corner, and for that I’ll always be grateful. But despite the support this is my battle, and I truly feel like I’m walking into it alone – because for all the support I have, no one can actually help me. And I see how devastating that it for those around me, I see how much it hurts them to see my pain and be powerless to take it away. Nevertheless, their love really is what’s giving me the power to keep moving forward in the journey. Alone, but powered by the love, empathy and strength of everyone who’s supporting me.
I’ve been trying to battle the loneliness, or more like distract myself from it, by making sure each day I do something or see someone outside of my home. The trouble with that is it means I’m driving a lot more, which is not something I should be doing. I’m not dangerous, I’m not driving high, but I’m aware that my pain can often be distracting and driving without full concentration isn’t advised. So then I have to put so much more energy and focus into ensuring the road has my full attention, which obviously leads to more pain and exhaustion. It’s silly because driving for me is so relaxing and more of a hobby than a convenient method of commuting. But that was in my old life.
Anyway, excess driving aside, I’m struggling to stop and rest, particularly if I’m home alone. So I’ve been out more, doing more, seeing more people, trying to do some food shopping where I can. And despite my pain being a 10/10 for over a week now I just can’t fucking stop. When I try it’s not resting, I’m led there feeling my whole body and mind trying to fight to stay away from the darker places of my mind. So I’m not resting, it’s purely me restlessly led down. Then I give in, get up and force myself to leave the house and do something.
I’m so consciously aware of how easy it is for me to slip into a darker place, a deeper state of depression, and that scares the fucking shit out of me, because I know how hard it is to come back from. I also know how little fight I feel like I have left in me to do so. So I get up and try to stop that slip from happening. It’s a strange place to be in – knowing that I am inflicting more pain on myself by keeping busy and deepening my state of exhaustion. But I just can’t afford to slip.
It’s also strange that there isn’t anything in particular that is on my mind. My therapy is down to 1 session a week, because I don’t really have a lot to talk about. I enter my sessions not knowing how we’re going to fill the hour, but we do. We always have done, even if it’s just chewing the fat or meditating. But it’s difficult not having anything to divulge to help get me further away from this darker place I’m fighting to avoid. Because everything to say has been said. It’s just the result of my entire situation – my pain, my suffering, my finances, my boredom and loneliness. It’s all been said. And there’s absolutely fuck all I can do about it all.
My neurologist took a month to send a letter to my neurosurgeon requesting a consultation for me. The letter stated that my last two treatments didn’t impact my pain at all and that I’d had ‘partial positive response’ to Indomethacin since I saw him in April. I haven’t taken Indomethacin since January and can’t due to medication I take for my joint pain. And the last two treatments had a negative effect on my pain. I haven’t heard from the surgeon, I haven’t heard about my referral to the pain clinic. Everything has stalled and I feel I have nowhere to turn. I’m also still carrying anger and resentment towards my neurologist about the letter, it’s inaccuracies and its lateness, despite receiving it a month ago. I should have had time to see the surgeon before the year was out and she should have ensured what she wrote was at least accurate.
I’m also mad because I was reading back through my medical correspondence while putting together evidence to claim for the vaccine payout, and I saw my letter from my neurologist in July last year. Post vaccine my pain was between a 4-8 daily, generally sitting at a 6. I’ve spent 18 months trying to get a grip of my pain and all that’s been achieved is make it worse. I know I’m grateful for the NHS and the resources spent on trying to help me. Let alone what I and my dad have paid for each private phone call or appointment with my neurologist before I got her email address. But I’m also so fucking disappointed in the system at the same time. I feel so let down that I’m in a worse condition and I’ve had to fight and damn near harass my neurologist to get the ‘help’ I have received. That even now a blatant false statement was made in that letter – a statement that the surgeon might see and deem me a low priority case because apparently a medication I cannot take is helping me.
Like I said, I’m carrying a lot of anger and resentment which is not helpful in anyway. It doesn’t change things. It doesn’t fix me and it’s detrimental to my mental well-being. But if I let it go, if I accept that this is where I’m at, I feel like all the fight will leave me. I can’t afford for that to happen. So no, there’s nothing new to discuss in therapy, because nothings moving forward. I’m in a state of limbo, battling to keep my head above the water. I think that’s the best way to sum up how I’m feeling – I feel like I’m drowning. Everything has stopped moving forward and I’m stuck in no man’s land with no idea what or what is coming next. How long must I keep treading water trying to keep my head above the waves?