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