Today I had my appointment at the local pain clinic as even though I’ve been Endo free since having Boe, I’m still having major pain problems.
Every morning I have so much pain and coldness in my legs that I cannot move until Ben has brought me a hot water bottle to warm them up. By lunch time every day I’m so physically and mentally exhausted that I struggle to keep my eyes open. My memory is so pathetic from fog that it’s like I’m getting dementia. I have problems breathing. I’m regularly feeling nauseated. I’m going dizzy and feeling faint multiple times a day. I have headaches and migraines most days. I’m constantly cold. Even now, our heating is set to 23°, yet I have goosebumps and need a HWB. I feel fluey almost every day through aches and chills. I have a constant pain / pins and needles in my legs every day. My skin is so dry that you could make a handbag out of it. I cannot sleep without really strong sleeping tablets, even though I’m so exhausted. I start my day with two kinds of pain relief and I end my day with two kinds of pain relief, with top ups through the day. Some days they work enough to let me act normal. Some days they don’t.
My diagnosis? Fibromyalgia. Yet another incurable, chronic illness.
I’m now currently awaiting a referral to to spend 16 days, 4 days a week, 8.45 to 4.30 in a group with other people getting help with pain management. Which is really easy when you have a two year old little boy who has seperation anxiety :/
I get rid of one disease and get given another.
This is bulls**t.
Boe doesn’t deserve to have this kind of parenting where some days we can have adventures and take on the world, and some days he either has to veg on the sofa watching TV and drawing all day, or be sent to one of his aunties.
Today, I’m wallowing in self-pity, grieving the dreams I’d been having of living a normal life.
I’ll be fine by next week (mentally lol) but today… Today I am so far from fine. I know it could be worse… I know I’m not the first or last person to be diagnosed with this. I know it’s not as bad as some other illnesses out there.
BUT in October I was told that a disease that had crippled my life for over 20 years had been temporarily erased from my life. Now, not even 6 months later, something new is found. Something with no cure. Something with (as far as I’m aware) very little help.
Effing great days.
It’s 8.24 pm…. It feels like it should be 3am, I’m that exhausted 🙁
For those of you who have read my rant, thank you. For those of you who will offer support and help (even if I don’t accept it lol) thank you. For those of you who decide to bring me chocolate (hint) thank you hahaha. For those of you who live with this already, and you feel like offering me advice or tips on dealing / managing, thank you, because I’ll flipping need it ? Sarah, my lovely Acupuncturist, we have a lot of work to do in my acupuncture appointments, lovely lady ?
I’m off for a sleep with my HWB.