I have been away from my blog, social media and everything in my life in the last two weeks. I apologise for the absence, it wasn’t due to me being totally ignorant, I’m only partly that, but because of some personal upsets in my life and a very bad time with my illnesses.
I was extremely down, so unwell, worried over my new symptoms and what they could mean to others and my life, over thinking, over doing, not sleeping, eating. The inevitable happened, I burned out emotionally , physically and mentally. I won’t lie and say the last two weeks have been easy, because they haven’t. I won’t pretend everything is ok, because they aren’t. But what I can say is, I’m feeling better than I was, I’m very much happier and I’m taking each day as it comes.
My pain clinic appointment on Monday went so well, better than I thought it would. My specialist knows and treats many people with fibromyalgia and it was a huge relief to talk with someone who not only understands the illness but who is willing to help. She changed my Gabapentin for another Neuro/pain drug and a new pain drug to start in two weeks time. This drug she had only given to four people, it’s new a year old and she only gives it in extreme cases. Mine fit the criteria, she confirmed I have severe fibro and had a real understanding of how it affects not only someone’s body, but whole life. I had a ‘pain wash’ come over me while I was awaiting my appointment and they sorted a fan, opened the windows and were so nice! I was totally embarrassed though, I sweat profusely during these episodes and it lasted half an hour, all through my time with the specialist. I think it helped her to decide to give me the painkiller, but wow I wanted to be anywhere but that room, sat in agony, sweating, shaking, retching, and unable to stretch in my wheelchair. I guess it showed how bad it is, I have the pain engulfing episodes many many times everyday and night, but darn this illness and it’s lack of etiquette, timing and full embarrassment!
I have had real problems with my home move. They put me in the lowest bracket, which means no disabled access, but high rise flats. Not only that but they have put me down as a house exchange.. I only phoned them Tuesday to sort it out and they said they had lost my forms but would sort it. Saturday a letter came outlining the lowest band etc.. To say I am not impressed is an understatement I am livid. I am so tired of having to constantly sort things out that I shouldn’t have to, and which lowers my energy levels, makes me unwell and is a constant cycle. I will phone them later this morning, when I have two hours to take out of my day last week I was on the phone for nearly three hours.. Grrrrr
Good news is I have my rheumatoligist appointment today, late this afternoon. I am really hoping that this will be a huge help in not only diagnosing anything else I may have but be given help to make my symptoms easier. They have my results from my a&e rheumatoid tests, I had to phone the hospital to sort that. But at least it is sorted and I am hopeful that today will be a step in the right direction. 🙂
Fibro and M.E 