A Chronic Voice: September Link-Up

I’ve missed a few Link-Ups recently due to a new role at work and some interesting health but keen to get back into doing A Chronic Voice ‘s Monthly Prompts. I always enjoy seeing what themed Sheryl has come up with. The September Link-Up 2019 focuses on the following themes;

  • Finding
  • Researching
  • Dating
  • Reusing
  • Recounting

Finding

When illnesses seemingly take over your life, finding yourself can be tricky. You get lost under words like ‘disabled’ and sometimes it feels your whole identity is just that. I definitely felt like that last year, and in bad moments I still feel that all I am is sick. However, reminding myself of all the things I love, the things i’ve done and all that I hope still to do helps me ground myself.

My work and my hobbies don’t really match either, which sometimes I love and other times I find very disjointed. I’m a business consultant in work and a massive fantasy loving nerd outside of it. I’m a practicing pagan, love reading, cosplaying, video games and really bad puns and I collect figures and Barbies. The organised work me and the me outside of work hours sometimes make me struggle to feel I know who I am, or what i’m about!

Researching

Oh the pros and cons of google. It’s wonderful that we can learn so much about conditions and treatments online and so easily, but it’s also dangerously easy to self-diagnose. I fully support people seeking answers and support online but I think self diagnosis is worrying and potentially dangerous. There’s nothing wrong with suspecting that you have something wrong and taking it to professionals to help with (that’s what most of us do!), but please don’t decide you have a particular condition and self medicate- you could make things worse for yourself!

Dating

Dating with disabilities or chronic illnesses is a very varied topic. I’ve read some nightmare experiences and lived one myself. I once lived a situation where the person convinced me I was a burden and worth less than a normal person due to my health and deserved to be abused. When you’re ill and have to do things a bit differently, it’s horrible easy to believe someone saying that kind of thing. They are wrong. No one is any less worthy of love because they’re disabled or unwell. If you know you’re taking responsibility for your actions and kind in your decisions then you should also know that you are worthy of being loved.

Thank fully, I’ve also had partners who have been kind and decent about the fact I have limited control over my health. I’ve experienced people willing to compromise and help me where needed. My fiance, who seems to have access to a fountain of patience has never blamed me for my health, supports me in every way he can and frequently tells me off for over apologising! I appreciate the extra things he does for me and work to use my strengths to help him out too.

Reusing

I’m a fan of re-purposing and reusing things when I can. We should all be doing our bit to help the environment and try to avoid one-use disposable things where possible. In our household we try to use eco-friendly things and recycle. It’s also easy to switch to using a renewable energy company now too!

Little changes like reusable shopping bags, reusable wraps instead of clingfilm, composting and switching to recyclable toiletries. We also grow our own herbs and recently some of our own greens which all helps a little in reducing waste!.

Recounting

Recounting is a mixed bag for many with chronic illnesses. For me, until I turned 17 I was physically healthy, so I never would have expected my life to go the way it has. I feel grief for the life I might have had if I hadn’t developed the disabilities I did. I don’t think it’s wrong to feel that, as long as you can avoid getting hung up on it. Recounting things for me  is also often odd as since losing my memory, I have many memories which don’t feel like they’re mine.

However, i’m also incredibly grateful for so much in my life! My partner, my friends… the fact I have a good job whilst disabled, i’m sadly aware how rare that seems to be. I work from home and have just moved into a new role at work where my situation is more compatible, which is a HUGE relief. With careful planning and preparing for ill health, in general i’m able to do quite a few events and trips too when accompanied. I never thought at 27 i’d be unable to leave the house alone though. Even a few years ago I was mostly okay by myself, and i’m still processing that.

These September Link-Up topics have been great to work through as always. Thanks to A Chronic Voice! for coming up with them. You can read my last Link Up entry Here

Laters,

Ruthy xo


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