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Tilly's Daily Life with an undiagnosed illness

Tilly is the founder of 'That Patient Collective'. She lived with 13 years of undiagnosed Tuberculosis, Addison's Disease and last summer spent 3 months in hospital and left without a diagnosis. She is now attempting to live some sort of life whilst desperately searching for a diagnosis...welcome to Tilly's daily life with a chronic illness:

1. What do you do first thing in the morning when you wake?

My alarm goes off at 8am as I have to take my steroids then. I immediately feel pain, usually in my right eyebrow which has a sharp shooting pain running through it, in my cheeks where the muscles all twitch and an overall pressure headache. I lean over to my bedside table, whack my alarm off and then take all the tablets I have laid out the night before ready; pregablin & tizanidine for muscle spasms, furosemide as a diuretic and my steroid for my Addison’s disease. Already rattling, there isn't much room for breakfast!

2. How do you feel when you first wake up?

I feel like shit. Mornings are my worst. I literally cannot imagine waking up and feeling refreshed from sleep. I can’t even remember that feeling. My symptoms all get worse when I lie down. I am in pain. I have a searing headache. I have usually swollen up overnight. I feel sick. Really great morning vibes…

3. How are your days structured?

My days are totally unpredictable and I hate this about my illness. I never know when a symptom is suddenly going to pop up and ruin my day. I’m someone who loves structure and loves a plan and instead my days are riddled with uncertainty.

One structure I NEVER miss is my juicing regime. So much of my life is beyond my control and I think what I put in my body is one thing I can control. It gives me a sense of stability having this routine everyday.

So, first up, I juice my celery - I’ve read lots about celery and how it is the ultimate detox. Given most of the hypotheses last year in hospital were to do with my body being toxic/poisoned I figure this has to be a good thing to put in (even if it tastes gross!).

Then I wait half an hour (celery is supposed to be best on an empty stomach) and then I make gross juice no.2. I juice some coriander and add spirulina powder, wheat grass powder and apple pectin powder (again all detox products). This looks and tastes vile, so I hold my nose and knock it back like a shot (not quite a tequila rose…).

Then finally the good stuff. I juice a load of fruit - oranges, blueberries and ginger are my staples but I mix it up depending on what the veg man on my road is selling (the veg man has become my best mate over the last year, I think I keep him in business!).

Ok, so that’s my juicing done, then after that, well then I have NO STRUCTURE! I could be in bed all day or off at meetings in Oxford and London or at hospital all day or at my desk working on That Oxford Girl or writing or an inpatient hospital. I really do live life on the edge…!

4. How does feeling poorly get in the way of your day?

It gets in the way of my day every day. There actually isn’t a moment when I don’t feel unwell, so whatever I’m doing, I’m aware of it but at some point symptoms are more extreme than others. I’ll be sitting at my desk writing and suddenly my whole face will burn. I’ll be out and suddenly my muscles will seize up. I live in an ice hat and ‘Tilly rustling through the med cupboard’ is the soundtrack to my life. I’m constantly fighting fire, trying to dampen down symptoms that emerge throughout the day.

5. What symptoms do you live with day-to-day?

Pain, swelling, muscle spasms, headache, boiling hot head, flank pain, muscle jerking, gut dysmotility, urine retention, skin burning, dizziness, nausea, Involuntary muscle movements, facial twitching, tingling sensations, sweating. Then the more extreme ‘episodes’ of convulsion, visual disturbances, speech slurring…wtf are these?!

6. What emotions do you feel throughout the day?

I feel I have a pretty normal response to often really horrible symptoms - obviously they upset me, annoy me, frustrate me. I often say this when doctors start doing the whole, ‘is stress making it worse?’. I say ‘well, we can’t deny there is a bit of stress but wouldn’t you be kind of stressed if your whole body started randomly convulsing?’ Stress may not help but it’s an effect not a cause! I’m fundamentally a happy person. There is just this one big thing which is day-to-day ruining my life - this undiagnosed illness!

7. Is there anyone in your life who supports you on a daily basis?

I am super lucky to have what became known on Insta as my ‘team’ of absolute heroes. My mum is like an extra limb on my body, so much a part of me she knows what I’m thinking and feeling at any given time. I simply could not do life without her. My boyfriend is the best of the best, so much fun but also so thoughtful and kind. My dad can always be relied upon to make me laugh, even in the worst of times. My auntie doesn’t live locally but drives down from up north immediately at the first sign of a problem…she moved in for 3 months last summer when things weren’t looking good for me, that is love!

8. If you could change one thing about your daily life what would it be?

To wake up and not feel ill! It would be a miracle and a dream!

9. Share a top tip for our patient readers on getting though through day

Tell the people around you what you need from them. Most people want to help, they just don’t always know how!


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