Hi all, led in bed again after i passed out again POTS again it seems to be getting worse, my pulse went up from 64 to 186 in a second and down I went as you know already suffering with my back, now it’s my pelvis and hip on my left side, it is very painful, Emma has just put some magic spray on it, which helps a bit.
Anyway thought I would write a blog on what it must be like for a career, I was thinking about it a lot last night, it has a huge impact on them, it’s a twenty hour hour job, and the stress that goes with it is ammence, we, that’s all the sufferers have so much to be grateful for, without the care, love and devotion our lives would be so much harder, I’d like to mention some of those people here and thank you all for your devotion to us, it would be so easy to walk away, I no a few of Emma’s so called friends said she should leave me, but she hasn’t she’s loyal and devoted as are Al with Jan, Gavin with Lucy, Richard with Tanya, Ken with Suzanne, David with Wendy, Sam with Sam, Aiden with Cathy, Jess and her partner, Tash with Steve, the list goes on huge credit to you all, it just goes to show what we as human beings can do for love, you don’t ask for anything, other than hoping that we get better, I know in Emma’s case she puts up with a lot, bad mood swings days when I don’t say much, she just gets on with it doesn’t moan, and like most of you has a house and kids to look after whilst also doing so much work, for FND Friends, whist also suffering with ME and Fibromyalgia she really is a diamond, as are all of you careers, you do such an amazing job, with little thanks, it’s not that we’re not great full I think we just forget sometimes how much you all do for us, I for one am very great full to Emma my life would be so much worse with out you, I’m sorry if I take you for granted I don’t mean to, and I really do appreciate it, as I’m sure the rest of you do.
Really looking forward to our Christmas do on the 8th December in Pill it will be great to see you their, it’s not to late to join us if your still thinking about it you have until Wednesday please come if you can, it will be a great night,and if your new and your not sure about coming as you feel you might be left out, I can promise you, you won’t.
As you may have read we have now applied for a registered charity it takes up to 8 weeks before we hear back, but we’re hopeful, we have really big plans going forward, we are very excited about our plans and ambitions for this group. We are growing on a daily bases now, which is also very exciting the more people we reach out to, the more we can help, the bigger voice we have. We have advertised for able bodied people to help us move the group on, these are volunteer roles so unpaid, if you know anyone that may be interested then please let us no, these roles are part time, but would be very hands on and very fulfilling. It is exciting times for this group so please join us.
Take care all. See you on the 8th December.