As a bit of a car nut, I’ve realised something rather sad about my weeks where I’m not able to make plans. The house opposite ours runs a barber shop, with various visitors throughout the day. But once a week they get a special visitor. Special to me anyway, because he literally makes my week. He pulls up in his purple RS7 which definitely has a non-res aftermarket exhaust system, and it rattles the fucking windows. It’s a thing of beauty, and the noise puts a smile on my face every damn time.
My head is beyond awful this week and has been for several weeks, likely exacerbated by the heat and stress. Which means I’m useless. No, less than useless. Mr RS7 has just been for his haircut, which has cheered me up today.
I’ve not got a lot to report. when I feel like this I often find myself writing things that could help my readers, other people with chronic illness, or those either related to or supporting someone with chronic illness. You learn a lot in a short space of time when you become ill, you learn what helps and what doesn’t. You learn the best kind of support you need from those around you. You’re probably also supposed to learn how to ask for help and support, but as I seem fairly immune to this lesson it would be rather hypocritical of me to write about it.
But perhaps that’s something I should look into, my inability to let go of my pride and independence. My inability to accept where I am and that this is starting to look a lot less temporary as the months and years drag on.
My friend asked me in the week why I didn’t ask for the help I need. I had to do my pip review and I finally got it sent on Monday. This I actually got help with, but only after my therapist pushed me to do so. I know I’ll be told I need another assessment as I was faced with just how much worse I am now compared to mid 2022. The last two months my health has taken an even bigger dive, and I’m still led here hoping that it’s just the summer heat and the deficiencies we’re trying to improve. But I also feel it may not be. I can hope but I knew I was getting worse, I just didn’t want to face it or admit it.
I’ve given in and ordered a BP monitor. My issues with tachycardia are becoming beyond self-management. I’ve been managing them for 3 years, always having bigger issues to deal with. Lying down would bring my HR below 100 again, I get up slowly, I keep hydrated by drinking at least 2.5l a day and I have limited caffeine. But none of these are working now and it’s causing me to feel dizzy, breathless and lightheaded every time I get up. I’ve always given Bella scratches before bed, especially if she’s going to be wearing pyjamas. She loves it, but I can’t do it and haven’t been able to for 5 weeks because it makes me breathless and dizzy, even though I’m sat on the floor. If I eat a large meal I’m dizzy, HR around 140 and have nearly passed out. It’s ridiculous.
I physically cannot wash and dress daily. I have to keep a tin of Pringles in my room for the days I can’t get myself lunch and feel hungry. But to be honest I’m rarely eating lunch at the moment anyway.
I try desperately to not ask for help to wash my hair, or get out the bath or to do Bellas meds in the evenings. I try to hold onto every last bit of independence I have. Everything I can just about push myself to do, even if it means propping myself against the worktops or risking another week in bed.
But I wonder what it is that makes me an incredible supporter and advocate for others, encouraging them to get the help they deserve, but not me. It’s something I’ve discussed in therapy. I know there’s a part of me that doesn’t accept what’s happened or just how unable I am, like asking for help is defeatist. There’s also a part that feels guilty for asking for help, like it’s putting too much on others. And then I think deep down there’s another darker part that thinks I don’t deserve help. There are others worse off than me than need the help, that I’m just not that bad. And of course shame has a large role to play here, the shame of admitting just how much I struggle to my self, let alone others.
So I’ve been working on that. I’ve been working on being more honest with my nearest and dearest. I realise, after it was pointed out, that it’s almost unfair to not let them in and know the truth. The truth that I get maybe 3 hours a week at the moment where I can do something. But that something has to be low key, sat or led down and preferably in a quiet, dark location. It can’t require me to think about an outfit or fix my hair and make up.
Wednesday I had to collect Bellas meds from the vet. Every month they mess up somehow and this month was no different. That isn’t a complaint, this aside I wouldn’t change them for the world. But it meant I had to stand at the counter for nearly 40 minutes while it got sorted. There were no seats. It was a marginally better day compared to most lately, I used my walking stick, I leant on the counter. I did all the things I could, yet it’s knocked me for 6 and I’m back to where I have been. HC is a 10/10, my body is on fire and I’m wobbly and shaky. Not to mention the impact it had on my HR.
The sensible thing would have been to ask my mum to collect them for me after work as her office is just around the corner. But she’s worked all day, she’s stressed right now, how can I expect her to wait 40 minutes instead? How is that fair when she already does so much for me?
Those are the questions that go through my head every time I consider asking for help with a task. My answer will always be ‘no’. And so the cycle continues.
I keep wondering whether to start a health fundraiser so I can pay for some private tests and scans. Or perhaps book an appointment with a scientist I know who has set up a long covid and vaccine injury consultancy – this could be especially helpful in getting advice on exactly what conditions I could have or what tests and treatments I should consider. But it all comes down to asking for help, the shame prevents this. The fear of what people will think of me, the comments said about me, the looks. Of course people are actually wonderful and incredibly supportive, but my mind likes to create stories that keep me trying to go through all this as quietly as possible. Perhaps one day I’ll have the courage to ask for others to help where the NHS aren’t.
I don’t think I’ve ‘fixed’ my inability to ask for help in writing this, or discussing it in therapy. But I do feel I understand it a little better now and that’s a pretty good first step.