neutropeniczebra
Cyclic neutropenia fighter 馃枙馃徎
My name is Shauna, I am 25 and diagnosed with cyclic neutropenia. This is place I can air how I'm feeling and the struggles I face dealing with a rare disease on a daily basis.
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Again, been a while since I posted. It's been a struggle to say the least.. So stopped sheilding 15th August, thankfully still working from home but have to go in for 1 Saturday a month.. Might not seem a lot but for someone who suffers with anxiety anyway it is a struggle.
1st November I had my results my partner had brought covid home and I was infected, thankfully by acting quickly injecting Gcs-f and having antibiotics within hours of feeling unwell it appears I had a mild dose and thankfully my body and the medicine fought it off.
Still scares the shit out of me thinking i could catch it again.. And maybe next time I won't be so lucky.
I've noticed I've started to become anxious when leaving the house for anything, that needs to stop.. I have enough to contend with let alone having a fear of being outside.
The downside is I've put on a lot of weight and that's something I'm struggling with, after losing 2 stone in my final year of uni intentionally following healthy regime, it kills me to see myself this size again and bigger..
How do you fight the exhaustion to exercise when you're chronically ill, or I muster up the courage and energy and then end up wiped out for days..
Feel like I mightve turned a page today.. We will see, keep fighting.. Stay safe.. You can do this..
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So it's been a while since I posted, nobody reads this but it makes me feel better to get things down and out.
Went back to work after recovering from pnemonia and got sent home because I'm a high risk person for covid-19 馃檮
Told I could have 2 weeks off special leave but would need to be revisited once that's ended. Well that has ended and thankfully received a letter from the health board saying I'm high risk and should be isolating for a minimum of 12 weeks.
Since self isolating I've experimented with antihistamines as my mum tagged me in a study saying that taking them can help with the bone pain that comes from Gcsf injections. So far it's helped and my sinuses have become clear by alleviating allergies.
Since isolating *touches wood* I haven't been ill. Still suffering with side effects from the injections but I'm actually having good days now! Woooo! 馃槀
Taking some time to self heal and get to know my body again. Stay safe everyone 馃挏
#cyclic neutropenia#neutropenia#chronic illness#covid19#covid2019#selfquarantine#alonetime#self healing
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I've been wanting to write this for a long time and today I finally snapped.
2 weeks ago I was in hospital with neutropenic sepsis, I returned to work Monday thinking I was ready and recovered.. How wrong was I? Phoned Dr's.. They said come down straight away... Was told infection markers are still high I should not be in work and more blood tests are needed.
Went for blood tests went back to work told them what Dr's said.. Well it's my choice to follow Dr's advice and go home but will be facing dismissal due to sickness record.
Spoke to a few friends and realised that I need to prioritise my health and go home and rest.
The amount of tears I shed on the way home from work.. Worrying if I get sacked how I will pay my mortgage and everything.. But ultimately I need to get better, thank you to everyone who made me see it. #cyclicneutropenia #RareDisease #chronicillness #ChronicPain
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