Confessions of a Spoonie: Invisibly Me
In today’s post, Caz from Invisibly Me gives her confessions!
Invisibly Me – Caz
What condition/s do you suffer from and when were you diagnosed?
My problems started when I was about 19, and got progressively worse over the next 9 / 10 years. I had colonic inertia where my bowel simply seemed to stop working, resulting in chronic constipation that made my life a misery. Unrelenting fatigue, migraines, pernicious anaemia, an eating disorder in my younger years and now anxiety that’s a constant battle, chronic vitamin D deficiency, severe dyskaryosis, pelvic floor dysfunction, amenorrhoea, osteopenia, Raynaud’s disease and undifferentiated connective tissue disease.
What are the main symptoms you suffer from?
Fatigue and exhaustion, headaches and migraines, anxiety, joint and muscle pain, problematic sleeping, and bladder, bowel and stomach issues.
What 3 things have you learned about your condition since being diagnosed?
- There’s not always a linear cause-and-effect; sometimes symptoms don’t add up, things aren’t as expected, and there isn’t always a reason.
- Since being diagnosed with Pernicious Anaemia, and then struggling with getting a hypothyroid diagnosis and treatment, I’ve discovered a lot about how both conditions are diagnosed and medicated; this vastly differs across the world and sadly the UK seems very behind, leaving thousands struggling with these conditions as a result.
- The best support can often be found online; I have met many wonderful individuals from health forums, by email, via my blog and on Facebook support groups (such as the Stomawise group). Reach out and connect with others if you can as the advice, encouragement, and the ability to help another person and feel supported yourself too is invaluable.
In what way has the NHS supported or not supported you?
I was ignored, overlooked and fobbed off for several years. I changed GP surgeries and moved to a different town and eventually found a GP who would listen and take me seriously. I was told everything from being too young, to it’s all in my head. I have had to fight every step of the way just to be heard, let alone eventually tested and treated, at which point the damage had largely already been done. I’ve come along way, but there’s still a mountain left to climb.
What is the hardest part about your illness, in your opinion?
Feeling judged and left behind by the world and those around me.
List 3 phrases you hate hearing off other people about your condition.
- “Loads of people have them now, they’re like, totally normal, yeah, loads of people, and they do all sorts of amazing things like marathons and bungee jumping and blah blah…” (stoma) – I didn’t know anyone with one, it’s not a fashion accessory, and it makes my feelings seem inferior and unwarranted.
- “It’s just a case of mind over matter” (pain, exhaustion, illness) – I agree that mind is a hugely powerful thing and I believe in the two way interconnectedness between your brain and your body. But thinking away pain and thinking your body to heal, well, it doesn’t quite work like that.
- “You need more sleep then you’ll be good to go. Or maybe get a gym membership” (fatigue) – Bodily exhaustion isn’t resolved by sleep, nor does exercise help, if your body is even capable of doing any. Regular tiredness is a whole other ball game compared to chronic exhaustion and fatigue.
List 3 things you wish people would say/do instead.
Simply appreciate that there are some things you can’t fully understand unless you have experienced them yourself. It’s not nice to feel judged or be made to feel as though we’re not allowed to feel the way we do about what we’re going through. Talk on a normal, human level because those with invisible illnesses are still regular people. I think it’s hard to suggest not to offer advice because often it comes from a good place, a place of wanting to say something or do something to help without really knowing what.
Do you have any cheats/tricks to get you through the day or to help you complete certain tasks?
Lots of post-it notes for my to-do list. Try to get the things I’m avoiding or really, really don’t want to do first to get them out of the way. Work with my body; I tend to have more energy first thing in the morning, so I’ll get more physical things done then, like grocery shopping or cleaning the house.
Have you picked up any new hobbies or activities since being diagnosed that you didn’t think you would?
Blogging. I never thought I’d jump on the bandwagon or even be able to create a blog, but I’m so glad I did! I’ve learnt a lot through doing it and it has allowed me to chat to so many amazing guys and gals out there. If I can reach just one person and make them feel less alone, or if I can impart some useful information to help or to raise awareness, then I will be happy.
What do you do? Work, study?
I was let go from my job this year after sick leave and what was, at the time, my upcoming colectomy and end ileostomy. I was a Community Advice and Support Worker, working one on one with clients in the community who were socially disadvantaged by helping with a variety of things, from benefits and financial planning to encouraging with social events and supporting with court and GP visits.
What are you plans for the future?
I have a First Class Psychology Hons degree so in future I would like to try to utilise that a little more to get into more of a ‘career’ type job, but how, and what exactly, is the part I’m not sure of yet. Given as how much things have changed recently with my health, I need to take a step back and reassess my life, including what I want to do in the future. I’d love to go on my first proper holiday, I’d like to write a little more, stress a little less. Baby steps…
Is there anything you would do differently since being diagnosed, and why?
Since diagnoses and surgeries, despite the upheaval and distress of A&E visits as well, I seem to settle back into old habits far too quickly. I would like to care a little less about the judgements from others (real and perceived), stress a lot less about the small things, and pay more attention to resting and being gentle with myself rather than getting frustrated with ‘not doing enough’. I would also go back and not have had mesh implant surgery (rectopexy for pelvic floor dysfunction) as the problems caused by it took me to my lowest ebb and then brought me here to having a stoma.
Has your illness taught you anything about life?
Lots, but the problem is between knowing something and implementing it. I think I have the “doctor heal thyself” syndrome, as my mother refers to it. I know that life is precious and have learnt that the small things we worry about don’t really count for all that much. I’ve learnt that your health should come first. I’ve learnt who is there for you and who matters in my life, and to not worry yourself so much about those who disappear or let you down. It’s taught me to be true to myself, to be proud, to be assertive and that no matter how bad the situation is and how awful you feel, things can and will change.
What advice/information do you wish you were told when you were first diagnosed?
There’s a lot I wish I were told with regarding have a stoma, so when I first had the loop ileostomy I wish I were told about both how your large bowel can still produce and retain waste material, and what hernias are. The latter is so important as hernia prevention is far easier than cure if you do develop one.
What would be your main piece of advice for people who has just been diagnosed with your condition?
To anyone with an invisible illness, I would say to focus on what you are capable of, your strengths and those things you can control, rather than what you can’t do, don’t have or can’t change.
Thank you so much to Caz for taking part, and remember to check out her blog if you want to read more!
- Jodie will be posting another Confessions of a Spoonie on Tuesday 16th April!
- I will be posting the last Outside Looking In on Thursday 18th April!