The reason for this is that a couple of weeks ago I went right over that precipice, over the cliff edge of the pain barrier and I couldn’t cope anymore. Getting through each day was hard enough without picking up my phone or my laptop and being sociable. I didn’t want to talk. All I wanted, all I want, is for someone to take this constant pain away. I have even reverted to wearing my ugly hard cervical collar again, but it hasn’t resolved the issue straight away because I’ve fallen so far over the edge it’s taking some pulling myself back up. Getting back to a manageable place isn’t easy.
I haven’t updated the blog for a while on where things are in getting answers and help, so this is as good a time as any, while I’m making my apologies for my absence.
I have been seeing a physiotherapist in an attempt to strengthen the muscles in my neck so they can help support my head. When she examined me she found several things. She found that my ligament has virtually no end point when she applies pressure, so it continues to stretch and move and she found that I am mechanically unstable. This is the first time someone has actually physically felt the area I am concerned about and having someone confirm this stops me feeling like I am chasing ghosts.
Then, last week, I received an email from the neurosurgeon’s clinic in the United States where I have been on a waiting list, and I have an appointment with him in April. He is one of the top neurosurgeon’s in the world who has a good understanding of how the EDS body and the head and neck work together, or more importantly, how they don’t work. So, in April, I am flying over to America to finally get some answers. I was really shocked to get this email. I thought his waiting list was so much longer. This next step is exciting, because I’m finally going to see someone who really knows what they’re talking about and scary, because of the implications of what he could say, because I may not fall into the bad enough category for him to deal with – yet my life is so restricted – or I might and that in itself is scary.
(And I wouldn’t be posting this if my house was going to be left empty and unattended, it isn’t.) You can expect some photographic updates while I’m over there as well, because I’ll be doing a spot of sightseeing while over in Washington.
I’m going to try to get back on the social media train. The level of pain I’m in on certain days will dictate what I’m able to do, but I wanted to let you know, I didn’t want to look like I was just sliding away.
Do you think social media is something you can dip in and out of or is it something you have to keep at on a constant basis?