Tag Archives: sle

2016

http://www.sickoflupus.co.uk

Hi all,

I can’t remember the last time I put thumb to iPhone and blogged!
I have 2 main reasons for being slack:

1: I’ve been really unwell.

2: I’ve been struggling with depression again and I don’t like to post blogposts that are full of negativity.

However, this post will be more negative than positive, sorry.

For the last few months, I’ve been really busy and haven’t been living my ‘pacing and planning’ lifestyle.

I have been really terrible at writing this year. Thankyou for continuing to support my blog, I can see that a lot of you are still reading.

2016 has been the hardest year yet. I’ve lost count of the number of doctors appointments, hospital appointments, hospital stays and referrals. I should also take this time to acknowledge the amazing care I’ve had from the NHS. It’s easy for people to criticise the NHS, but I find that they are the ones who don’t spend too much time in hospital and so are unable to appreciate how much of a lifeline it is.

My 2016 NHS snapshot:

Thousands of pills, atleast 3 hospital stays, 3-5 trips to A&E, atleast 10 rheumatology appointments, around 10 GP visits, 3 appointments with a specialist nurse, chemotherapy, 2 steroid infusions, 1 ambulance called to my home, 2 brain scans, 4-6 X-rays, an attempted lumbar puncture, 2 trips to the brain centre, 2 trips to respiratory, the flu jab,2 visits to the sleep clinic, countless phone calls to the rheumatology helpline…

It’s no wonder that I’ve continued to struggle a lot this year with anxiety and depression. It’s impossible not to be affected by the disease itself and the mountain of other things that come with chronic illness. It’s the multiple appointments that you have to balance  with work, the waiting for test results, the constant fear of what might happen, worrying about meeting commitments when you’re in pain or when you’re just too tired. And all the while looking completely fine! (But that’s another blog post entirely)

It’s hard to enter a new year when people around you are setting exciting goals and resolutions and you’re just trying to survive the day. Lupus and fibromyalgia just don’t care about your plans or aspirations and for me, this is one of the hardest parts of the illness.

However, I’ve still made plans! Both personal and professional. I can’t let lupus win, it doesn’t deserve to! 

As I write this, I have so much pain in my chest, shoulder and arms so I’m gonna sign off here. (I currently have costochondritis) 

I’m planning to get back to weekly blogs and to share anything I feel may be useful to others in my position so check back soon!

Until next time X 


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When It All Gets Too Much



http://www.sickoflupus.co.uk

Hiya! 

How are you? 

Sorry for the lack of blog posts recently but I’ve been really unwell. You know how it goes; you take your meds, you take it easy and you still end up collecting every ailment under the sun. 

I felt compelled to write today. I feel like I’ve used up all my chat allowances with family and friends but I still have so much weighing me down. (Insert steroid weight joke here)

In the previous post I wrote about my first session of Rituximab. I’ve since had my second and final (for now) and so it’s a case of waiting to see if it’s been successful. I’ll write about part 2 soon incase you fancy a read. 

Ok, with that out of the way, let me get into it…

For a really long time, I’ve been feeling like I’ve been watching life go by from the sidelines. At work, with friends and family and even alone, I’ve been feeling absent minded and like I’m in a permanent daze. My cognitive function is horrendous at the moment. I’m forgetting things and struggling to get sentences out without slurring. My mind just feels too tired to function.

I don’t think I’ve ever truly come to terms with my diagnosis and as I’m getting older, I’m struggling more and more with it. I feel numb most days and then out of the blue I’ll remember that this is my life. I’ll panic, spiral into low mood and have episodes of anxiety and then depression.

Since the chemotherapy, I’ve been more fatigued then usual. I’m completely useless within 4-6 hours of being awake. I’m also reminded that I need to rest and although it’s for my own good, it’s beginning to drive me crazy. 

I feel so empty at the moment and I’m genuinely watching the world pass me by. This is the scariest feeling ever and I know that most people with chronic illness feel the same way. It’s genuinely heartbreaking when you have to live within the prison of your illness, when others have the luxury of health and therefore freedom. When I describe it as heartbreaking, it physically aches to scroll through your Facebook or instagram and watch everyone simply ‘live’ and they don’t even know how much of a gift it is to not be held back by your own body. 

It’s extremely hard not to become consumed by negative feelings. I always have a smile on my face because none likes a Debbie downer (sorry to all the Debbie’s out there!) but more so to convince myself that things are ok. This facade is completely exhausting!  



I need to state that I have so much to be grateful for and I have a great deal of happiness in my life but the feelings I have towards my illness are starting to overshaddow the positive. 

Right now, all I can see ahead of me is a life that I never wanted. In my mind, I am still the hardworking, ambitious and motivated girl I was pre-diagnosis. Whereas in reality, there were days last month where I couldn’t feed or dress myself. I couldn’t even push the pain pills out of the blister pack! Isn’t that ironic?! I want so much more for my life and not for nothing, I bloody deserve a life where I exist on my own terms. We all do! 

Right now however, it’s out of my hands. Try as I might to live with optimism and a positive outlook, the Lupus monster is in total control. Im waking in pain which means Lupus (and Fibromyalgia) dictates the fate of my day before it’s even started. Trying not to feel depressed is like not being able to swim and trying not to drown. Almost impossible. 



With chronic illness, you have a lot of time to think. I may be wrong but I’d say you think about the past, present and future more than the average person. You think so much about how you used to be, you’re consumed with the right now and you worry about the future – how you’ll be and who you’ll be. 

Right now I’m desperately trying to get through this fog and find happiness in the things I used to. It’s easy to ruminate and though this solves nothing, there’s little else you can do. 

I’m sorry this post wasn’t an uplifting one but you probably guessed it wouldn’t be from the title! However, I hope that it’s been somewhat insightful whether you have Lupus or you know someone who does. 

Thanks so much for reading.

Til next time, XOXO

http://www.sickoflupus.co.uk