Welcome to the first guest post for Mine & Amy’s wonderful event Confessions of a Spoonie. If you want to know about the event then click here, other than that let’s jump straight in with Caroline Appleton’s Confessions!
Hi there! I’m Caroline, I’m a 21-year-old final year uni student, blogging about my life with chronic illness, as well as anything else that pops into my head.
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What condition/s do you suffer from and when were you diagnosed?
PoTS- awaiting diagnosis, but experienced symptoms since 2010 & Anxiety – September 2016.
What are the main symptoms you suffer from?
Dizziness, fatigue, pain and nausea.
What 3 things have you learned about your condition since being diagnosed?
- That certain things (for example, eating a big meal) are triggers for my symptoms
- I’m not lazy, or useless, it’s just my condition meaning I can’t do as much
- That my PoTS is likely the main trigger for my anxiety
In what way has the NHS supported or not supported you?
All the doctors at my GP surgery have been good, they’ve admitted they don’t have much knowledge of PoTS, but happily referred me on to a consultant. I haven’t had my consultant appointment yet, but so far I’m not feeling very supported, the hospital keep saying they’ve sent me letters which never arrive.
What is the hardest part about your illness, in your opinion?
How unpredictable it is. I never know day-to-day, or even hour-to-hour, how I’m going to be feeling, which makes planning anything really difficult, and really exacerbates my anxiety.
List 3 phrases you hate hearing from other people about your condition.
- “You’re being over-dramatic” (in response to me saying this is a chronic condition)
- “Oh yeah, I get tired too”
- “If you do some more exercise you won’t get so tired”
List 3 things you wish people would say/do instead.
- “How can I help?”
- “Can you explain it to me?”
- “Don’t worry if you can’t do what we planned”
Do you have any cheats/tricks to get you through the day or to help you complete certain tasks?
Rest. Rest, rest, rest. Never stand when you can sit. Have lots of little meals. Have things ready prepared, like snacks. And rest some more.
Have you picked up any new hobbies or activities since being diagnosed that you didn’t think you would?
Blogging! And lots of crafty stuff, especially crocheting.
What do you do? Work, study?
I’m a final year uni student, studying Psychology in Education, Two essays to go and then I’m freeeeee!
What are your plans for the future?
Very good question. I wish I knew! I want to work with young people, but I’m not entirely sure in what way.
Is there anything you would do differently since being diagnosed, and why?
I don’t think so.
Has your illness taught you anything about life?
There are some amazing people out there willing to help (shout out to the online spoonie community!).
What advice/information do you wish you were told when you were first diagnosed?
This is a step in the right direction. Although it means you’re going to be living with a condition, it also means we can now start managing it.
What would be your main piece of advice for people who have just been diagnosed with your condition?
Listen to your body. It’s okay to say no, or to ask for help. Don’t panic. You’re still the same person, you just need to make some little adjustments.
- If you haven’t already, head over to Amy’s blog and check out MY Confessions of a Spoonie as well as Amy’s Partner’s response to the Outside Looking In questions by clicking here.
- Keep your eyes peeled for on THURSDAY Amy will be publishing the first guest bloggers response to the Outside Looking In event over at Living with ME!
- My next post will be on SATURDAY and it will be for the Outside Looking In event.
Don’t forget if you want to take part in either of the events you still can!
Blog you later »