I haven’t updated the blog with a personal update in a long time, so after having some treatment, and having something to update you with now, I thought it would be a good time to do just that.
A quick recap for anyone who isn’t aware, or who may have forgotten because of the length of time that has passed, I live with the genetic condition Ehlers Danlos Syndrome which means that, amongst other things, I’m bendier than the general population. The main problem for me at the moment is that my neck is giving me problems. A lot of problems. There is so much pain to deal with that I struggle to manage on a day-to-day basis. It feels too heavy for my neck, I can’t sit up working at my laptop for more than two hours at a time without it being agony and my social life in nearly non-existent.
I’ve sought out help within the NHS and have been fobbed off by an orthopaedic surgeon and a neurosurgeon which then sent me flying off to the US in April, where I knew there was a neurosurgeon who understood the impact of EDS on the neck. How it makes it as unstable as the other joints in the body. It was there that I was finally validated and he diagnosed me with a real neck problem.
I flew home feeling better for the validation but knowing that I needed to find a neurosurgeon here to take me on and believe in me or I’d have to raise a lot of money to go back to the States for surgery to fuse some bones in my cervical spine.
Well, with a little investigative work I found a surgeon and asked my GP to put the referral in. I kept my fingers crossed. The consensus by many (typically) women in the country is that they are not being recognised as having a problem by any neurosurgeon they see.
I have been so lucky, the neurosurgeon is the loveliest man ever. He listened to me and he understood what I was saying. He has also operated on EDS patients with these head/cervical spine issues! And he was willing to help me.
On Monday I had injections in the area he believes is the problem. The point of these is twofold. They are to relieve the pain and if this happens, then it is diagnostic, it shows he has the correct area C1/2 and he ‘might’ go ahead and fuse them. I feel like I’m in safe hands. At last.
This journey, for my neck, has only been going on for about 4 + years.
Living with a chronic condition is tiring. But, I’m lucky in that I have my writing. It flexes my brain, keeps me ticking over when the rest of me is struggling. I also have great support at home and this is massively important. I couldn’t do what I do without it.
The great news, though, is, that I think the injection is working. I’m not feeling the pain I am used to feeling. I’m hopefully optimistic. I don’t want to start celebrating too soon and it all come crashing down around me, but yes, I am feeling some relief. My neck isn’t my only issue, I still have the rest of my body fighting against me, but it has been the largest and most debilitating issue of my life for the last 4 years. To get relief from it is absolutely indescribable.
Please do keep your fingers crossed for me.
Jill's Book Cafe says
Fingers firmly crossed that a solution might be on it’s way for this. I know it doesn’t overcome the other health problems but relieving your neck pain will at least allow you write and socialise and feel as though you’ve got some of your life back. Good luck.
Rebecca Bradley says
Thank you, Jill. I’m feeling gently optimistic. And even if this injection doesn’t work, I’m incredibly happy with the neurosurgeon I’m with and that means the world after all the problems I’ve had.
Jose Ignacio says
You’re an example for all of us on how to tackle difficulties, Rebecca. All the best and good luck.
Rebecca Bradley says
Thanks Jose. It try to keep putting one foot in front of the other. This neurosurgeon has been a light at the end of a dark tunnel.
Karen says
Keeping everything crossed that this is the start of some good positive news for you. Any reduction in pain would be marvellous. Karen x
Rebecca Bradley says
Thanks, Karen. It’s a tentative positive so far 🙂
Alex J. Cavanaugh (@AlexJCavanaugh) says
Rebecca, praying you have found your answer! I hope that’s the spot, he operates, and you can finally live pain free.
Rebecca Bradley says
Thanks, Alex. It’s just great to be under a neurosurgeon that is willing to listen and support me right now. It’s a lot more than I’ve had in the past and it’s worth its weight in gold.
Denise Zendel says
I am hoping this will work for you. Xo and good luck.
Rebecca Bradley says
Thank you, Denise, I really appreciate that. x
Pam says
The fact that the injections seem to be relieving some of the pain is great news. Big hugs.
Rebecca Bradley says
It’s huge news. I’m tentatively holding onto it, like angels wings, scared they’ll slip from my grasp, but so far so good. The positive thing though is the neurosurgeon I’m under. Having his belief in me and his knowledge and support is the main thing for me. xx
Trish says
All the very best Rebecca. Chronic pain is a nightmare to live with but we have to get on the best way we can. Your books ? are amazing and so are you as a person and a great inspiration to those of us who live with disabilities. Good Luck ! ?
Rebecca Bradley says
Thank you, Trish, such kind words. xx
kathybryson says
Good new, Rebecca! So happy to hear it and yes, fingers crossed!
Rebecca Bradley says
Thanks, Kathy, so far, tentatively, so good. x
Margot Kinberg says
I can’t tell you how happy I am, Rebecca, that you’re in less pain! That’s absolutely wonderful. Thank you for sharing the good news, and wishing full healing to you. Fingers remaining crossed.
Rebecca Bradley says
Thanks, Margot. It’s a wonderful, yet strange feeling! And yes, please keep those fingers tightly crossed xx
gunnardeckare says
I certainly will keep my fingers crossed!
Rebecca Bradley says
Thank you, I really appreciate it!
Rena George says
Good luck, Rebecca. Hope things work out for you. x
Rebecca Bradley says
Thank you, Rena x
chataboutbooks says
Keeping everything crossed for you, Rebecca. X
Rebecca Bradley says
Thank you so much, Kerry. It’s a strange feeling, but a good place to be. x
Mason Canyon says
Keeping fingers and toes crossed for you Rebecca. Hopefully you have found a doctor that can give you the help you need. Sending healing thoughts.
Rebecca Bradley says
Thank you, Mason, it’s much appreciated.
Elle Turner says
So glad the injection is helping, Rebecca. Keeping my fingers firmly crossed x
Jacqui Murray says
What a journey for you, Rebecca. I am definitely sending good wishes your way. I know all about chronic conditions. So much depends upon the right doctor. I am thankful every day that I found mine.