I was diagnosed with lupus and sjogrens around 9 years ago (aged 18). Since that time I have seen countless specialists, had my diagnosis changed several times and had far more questions than answers. My main difficulty is that my bloodwork usually looks okay so I feel like my symptoms are dismissed.
My main issue is the absolute exhaustion that I face every day. Every single day from lunch time onwards is a losing battle. All I do every day is count down the hours until bedtime.
I am fairly certain that I have sjogrens syndrome and in a bid to get a diagnoses once and for all I have booked a private appointment with Dr Price.
The last few weeks I have been off work with absolute exhaustion. My steroids were doubled and after a few days of feeling better I have been struggling again. Since Tuesday I have felt terrible with chest pains, a fever, swollen glands and then the last two days I have had swollen ankles too. I'm wondering if this could be an infection or a reaction to the increase in steroids?
I feel so rubbish and lost. I know I need to accept that my life is a struggle and make long terrmchanges ie. reducing work hours etc but it's so difficult. I am only 26 and wonder how I will face such a difficult future when I have no fight left in me.
My partner is incredible but I feel so guilty at how much this affects his life. I dream of having just one day where we could go out and enjoy ourselves without me feeling ill and exhausted.
Sorry for the long and rambling post. Life is tough right now and I wasn't sure where to turn.
Thanks for listening.