Let’s Talk About It – Dealing with a long term illness

You may or may not known that last August I was diagnosed with a complex and long term illness that required a surgery and some adjustments in life. Today I thought I’d write about something a little different, I don’t tend to do the sort of lifestyle posts but every now and then it’s good to talk about things and considering I have experience with this I thought it would be nice to share with you my experiences with an illness and some tips for staying positive.
Disclaimer – I’m not writing this for sympathy but I hope that my experiences will prove useful to someone else. Also a warning – this may be a long post!

It all started in August I’d been experiencing pain in my joints for a while and it was at the point where I couldn’t sleep due to the excruciating pain, I was already at the doctors after being recently diagnosed with Eczema so I decided to ask for a blood test, the doctor reassured me that the blood test would come back normal so I went home and though nothing of it.

I received a phone call later than day from the same doctor, the results of my blood test were so abnormal and shocking that they called me instantly, I was told that the calcium in my blood was way too high that if it got any higher I could be at risk of falling into a coma, on top of that my Phosphorus, Sulphate and Potassium was low and I was diagnosed with Hyperparathyroidism.

Hyperparathyroidism is an illness that is due to either an enlarged parathyroid gland (in the neck) or a a benign (non cancerous tumour) I had a gland that was enlarged that was making me sick only after my surgery did I find out that there was a tumour embedded within that gland. Following the phone call I was booked in for an emergency doctor appointment the next day, I remember ending the phone call in a daze, I told my friend and then broke the news to my family and my boyfriend who were understandably worried about me. I felt numb and was completely in shock, in less than 24 hours I’d gone from a healthy student to someone who was sick and needed a surgery.

Following doctors appointments and scans I found out that this tumour/gland was essentially taking the calcium from my gland and thowing it into my bloodstream, I researched as much as I could online and found that the illness was incredibly rare for someone for my age, some websites barely said anything others told me I was going to die, in truth I had no idea what to think, especially when my ultrasound on my kidney came back showing a lump that the doctor warned me could be Kidney Cancer.

I remember shakily telling my tutors and having to quit my part time job due to constant hospital appointments. One tutor encouraged me to take the year out but I wasn’t prepared for an upheval in my life if I wasn’t at uni where would I live? How would I finance myself? What would I do?

Christmas was spent feeling ill and in January after my calcium levels shot up I was rushed to A and E where I spent the night on a drip. Being in A and E made me think about how important it was to have the NHS, at the time my local Accident and Emergency risked closure so I consented to an interview with my local newspaper using my story to highlight the importance of our health services and to aid with the Hands Off Our HRI campaign. (You can read it here.)

My surgery rolled around and…was cancelled. I remember sat in my surgical gown after waiting for four hours, going with food for nine hours and drink for five hours. I remember sobbing at the injustice of it all, I remember looking at people in the street and feeling envious, suddenly blood tests, scans, hospital appointments and medications became my life.

In March my surgery rolled around again and this time was successful, I remember feeling terrified before I was wheeled into the operating theatre and then I came round and felt…amazing. Now I’ve had another blood test and my calcium levels are back to normal. I’m still awaiting test results to see if I have a particular gene that will mean that I’ll always be at risk for those benign tumours but in the meantime I’m feeling positive. Here’s what my illness taught me.

1) Life is precious – Now that I’m feeling better I feel very fortunate, many people don’t get better and it can always be worse. At the time I thankfully felt very numb and the severity didn’t really set in until afterwards.

2) Don’t be afraid to lean on friends – For a while I kept my illness secret, I didn’t want to burden my friends and some of my friends did fall out of touch but others stepped up, my close friends, boyfriend and family provided a bedrock of support so I never felt alone. Friends came with me to the doctors and the day of my surgery when I came home my boyfriend unpacked and my best friend helped me get changed into my pyjamas. It felt strange having my boyfriend bath me and dry me but he was an absolute sweetheart.

3) Don’t worry about things that you can’t change – This is easier said than done, when facing illness it’s scary and upsetting but I decided to keep busy, I threw myself into my degree work and managed to achieve First Class grades on everything this year. Rather than worry about my next test or my next scan I focused on the things that I did have: friends, family, a roof over my head and a possible cure.

4) Appreciate what you have – Now in hindsight I’m much more grateful for evry day things, I had no idea how sick I was until it wasn’t there anymore. Now it’s much nicer to be able to have more energy, to not have headaches and sickness every day, to not be in pain all of the time. The little things such as being able to go out with friends, to be able to have a bright future and to have been able to meet new people and help others taught me the importance of the little things.

5) It could always be worse – This is dependent on your illness, I’m definitely not saying that an illness doesn’t matter! What I did try to do was to focus on the positives, yes my illness was scary but at least it could be managed, I refused to let me illness define me and I continued to do the things I enjoyed and worked towards my future. Now I’ve managed to secure a new job, I’ve received all of my grades back and I’m looking towards the future.
me on me
(Straight after my surgery)          (Three months later)

Overall, my illness has taught me many things, it’s taught me that I’m a much stronger person that I ever realised and that I can still achieve anything I want even when having a tumour in my neck! It’s helped me appreciate life and all of our wonderful doctors, nurses and surgeons who save lives everyday! I’m lucky to have made a full recovery and I’m thankful to everyone who helped me through it.

If you are currently suffering from an illness my message to you is this, you are not alone.
love_nina

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About ninarossbeauty

PR Person and Beauty Blogger who has a soft spot for eyeshadows, lipsticks and anything quirky. You can contact me at ninarossjournal@gmail.com
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2 Responses to Let’s Talk About It – Dealing with a long term illness

  1. lillynlilly says:

    Glad to hear that you are alright!

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