Some of you may have noticed I have been fairly quiet on social media of late. I haven’t been on Twitter, my Facebook use is limited and my blog is being pretty neglected.
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?
I really do hope, Rebecca that he can help you, the pain you go through sounds horrendous and must also be very depressing. I definitely think social media is something that can take a back seat when necessary.
Thanks Steph. Managing it is usually something I get used to but this time it just got overwhelming. I’m so pleased I have friends that understand and allow me the freedom to be able to drop out and come back in again though. Thank you.
You just dip in and out of social media in any way that suits you! Most of your Tiwtter/FB friends realise you’re facing issues that we’ll never experience and admire your fortitude. I really hope your trip away is helpful, and that you manage to enjoy a bit of down time too.
Thanks Janet. I’m really glad I’m able to step away and come back again because the isolation of being in pain is hard and dipping my toe back in again always feels difficult. As for down time while I’m away, we’ve rented a lovely Airbnb apartment so we can take it easy and potter around in our (or rather, my) own time.
I agree with what Janet says about dipping in and out of social media – I on’t think it’s anything to worry about.
I think it’s great that you’re going to get to see someone who knows what they’re talking about and will hopefully be able to help you. Fingers crossed and looking forward to seeing photos of your sightseeing. I’m guessing Washington, D.C. rather than Washington state? If D.C. then there’s loads to see and do 🙂 (I’m sure there is in Washington state as well, but not quite as many famous monuments…)
Thank you Claire. I’m glad dipping in and out is ok because it’s isolating when you’re in pain so knowing you can come back is helpful. As for Washington, yes, it’s D.C so I’m really looking forward to it. I’m so fascinated by American history and politics so I’m going to love sightseeing. On s very steady timetable of course! 🙂
My dear Rebecca, I admire your courage and I wish you all the strength to overcome what you’re going through.
Thank you, so much Jose x
Sorry to hear you’ve been struggling, but really happy for you about the appointment in April. The people you connect with on social media will be here whenever you are… we don’t go away 🙂
Thank you Annalisa, I really appreciate your support. Knowing I’m not alone is comforting as it does feel pretty isolating when going through the tough periods and I can’t reach out so knowing you’re still here when I can come back helps x
Really sorry you’ve been in so much pain. Glad to hear you are finally going to see that neurosurgeon in April. Praying you get some answers and some relief.
Thank you Alex. Keeping my fingers well and truly crossed.
I am so sorry to hear you’ve been in that kind of pain, Rebecca. I am glad you’re going to get the chance to get some answers, though, and I hope your trip goes well. Sending lots of positive vibes and good wishes!
Thank you Margot, it is so draining and frustrating so knowing I have this appointment gives me something to really hold on to. Having such lovely support as well really buoys me 🙂
Lots of good luck, Rebecca. I think dipping in and out is absolutely fine. You have a really strong profile on social media and that’s not just going to disappear in a cloud of smoke.
Thank you so much Vicky. It would seem I have great online friends 🙂
So sorry to hear you’re struggling. On the other hand, April in either DC or Washington state is beautiful. If you’re in DC, you might get to see the cherry trees bloom!
Best wishes that this gets better and thank you for sharing. Now we know something more too!
Thank you Kathy. It’s DC so it might be that I do get to see those trees bloom! 🙂
I do hope all goes well for you, Rebecca! As for social media, dip in and out. I’ve had to because of my altered lifestyle, and it is working fine.
Thank you Glynis. It seems to be the consensus on social media. When I drop out my perception is that everyone must still be actively using it, but obviously not. I hope you’re well x
Dear Rebecca, I am so sorry for what you have been going through. I am equally happy about your appointment in DC. I know you don’t know me, but I live outside Philadelphia, and am more than willing to visit you, if you would like. Or you can call me at 267-640-2684. My email is jobayne@yahoo.com Whatever you decide I will be wishing you the best. Having fibro and depression, I’ve been there too. Continue being a brave warrior! Jo
Sent from my iPad
>
Thank you so much Jo, that’s really kind of you. Take care of yourself as well.
Hi Rebecca, hope that you get the answers and help you want in America. And so sorry to hear about your pain and health problems. Don’t worry about social media. We all have to step away from it sometimes. I haven’t posted that much recently either. Take care of yourself Christine xxxx
Thank you Christine. It won’t be too long until I know. I hope you’re doing ok xx
Really feel for you, Rebecca, you’ve been struggling for so long. I think you can dip in and out of social media as much or as little as you like. There’s no set rules. I do hope your trip brings you some real answers and tangible pain relief to improve your quality of life going forward. Thinking of you x
Thank you Jane. You’ve been a fabulous support. I really appreciate it. Xx
Your health has to be the number one priority Rebecca, I wish you all the very best in the States and hope the neurosurgeon can offer you some answers or hope!
I think you can pick social media up and put it down when you feel like it…I go for days with not posting anything and my followers are still there. Lots of lovexx
Thank you Lindsay! I’m keeping my fingers well and truly crossed. He’s my last hope. And it does seem that my social media friends are happy enough with my intermittent usage 🙂 x
I’m so happy to hear that you’ve heard from a doctor that can help with answers to your health issues. Here’s hoping that indeed there will be treatments that can be pursued and that your pain level will remain manageable until you can get those answers. I’m sorry that you’ve had this condition to deal with. As to blogs and social media – you know, life is a path that we do the best we can with. Sometimes you can fulfill your wishes and expectations and sometimes there are unexpected curves. Your health is the main priority and I think we are all so honored that you trust us with info about your struggles and allow us to offer what comfort we can. We’ll all still be around. No worries there. I’ll be keeping you in my thoughts and prayers as your move forward. Hugs!
Thank you so much Kay. I really appreciate that. It’s been a really difficult time as my body has deteriorated because I used to be a fit active person but I’m looking forward to getting answers and hopefully a solution. Thank you so much for your support. I hope things are ok with you?
Things are just fine with me. I went to my first mystery conference last weekend in Phoenix, Arizona – Left Coast Crime. Wow. What an experience. I had such a wonderful time with all the authors and other fans and readers. Truly a time to remember.
I’ve heard great things about Left Coast Crime. So pleased you enjoyed it. I’m looking forward to the festivals in the UK this year – if I can manage to enjoy them!
I am so hoping this goes well for you, Rebecca. Stay safe in DC. It’s got some pretty nasty crime statistics. Having said that, my daughter lived there for two years which Mom didn’t like. Let me know if I can help. I’m just on the other coast from you (West Coast, that is).
Thank you so much Jacqui. I’m not going alone. My OH is going with me. And I’m really looking forward to seeing the Dr, if that’s the right thing to say? But he’s really well thought of and he’ll give me the answers I so desperately need. Thank you again.
Sorry to hear your feeling so rubbish and i really hope you get some answers from the specialist. Social media changes so fast these days, I can’t keep up with it. I try but I have long periods of time when I’m not as active. It doesn’t seem to have made much difference, in fact I get more done when I’m not on Facebook, Twitter or Instagram – they are the devils work for idle hands as well as being good networking tools 🙂
Thank you. I’m keeping my fingers crossed. It won’t be long now. Time is flying this year isn’t it? But I know what you mean, there are so many social media tools that they really can be a time suck. It’s a fine line striking that balance.
Hi Rebecca,
I think that you are so inspiring and it is great that you will have this opportunity. I’m sending you wishes that the Doctors will be able to give you answers and will be able to support you with treatment if required.
Regarding the posts – it’s your time now, give it to yourself and feel no regret. Besides, you have so, so much great content that I think I could continue by re-reading your posts. They are very thorough and so helpful. By the way, I read a post from an author recently who had taken a year out from posting – and you know – it was great to catch up. I think your social media presence is strong and we’ll all be here when and if you choose to continue with it.
All the best,
Tanya
Thank you Tanya. That’s interesting that an author took a year out from posting and came back to it. It’s also reassuring to know that my friends online are happy with how I post and will be here even if I need to take the breaks. It’s frustrating on a personal level needing to do that, but it can’t be helped. Thank you again for your kindness.
Good luck, Rebecca. Your strength, honesty and continuing presence (however erratic) on both blog and social media despite what you’re going through is inspirational
Thank you, so much. It is erratic, but I try and that’s all any of us can do isn’t it? We all have things in our lives that pull us in different directions. Keeping my fingers crossed I can get some answers for this one though.
So sorry the pain has reached such a terrible state – that’s such good news about the specialist and here’s hoping there’s a light at the end of this tunnel for you. Wishing you all the best, Rebecca.
Thank you Alison. Not too long to wait for some answers now. Keeping my fingers crossed.
I am a brand-new follower (a book blogger who found you through others whom I enjoy) and all I can say is good luck and stay positive in your weeks ahead with your consults and treatment!
I live with chronic debilitating pain and it is sometimes a hurdle for me to get over, but we get up each day and try, don’t we. I’m glad to have found your blog since your genre is my fave (crime fiction, suspense, mysteries) and I plan on picking up your Shallow Waters very soon! Again, best wishes and hope for a healthier 2016!
Thank you so much Rita. I appreciate your positive thoughts. I’m sorry you struggle with chronic pain as well. It’s difficult to deal with because it’s so insidious, always there, needling away at you, but you’re right, we have to keep going. Thank you for following the blog and I do hope you enjoy Shallow Waters!
The key word in “social media” is the S-word. But like any other kind of socialising, it’s the people involved that matter. I have old friends who I see very occasionally, but when we get together it’s like no time has passed at all (okay, a few more wrinkles and the hair might be greyer or sparser). But you know what I mean, and the chances are you’ve got friends like that too.
I’m very hit and miss with social media, but I’ve found over the last couple of years I’m beginning to develop a core of friends – some of whom I’ve actually met (if you’re up to it, do try to get to the Bloggers Bash in June). If I drop off the SM (no, not that!) radar, it’s usually for a good reason and my friends understand. So relax about keeping up with the SM and focus on the really important stuff like improving your health.
I may be quiet, but I am rooting for you, Rebecca.
Thank you Graeme. I really appreciate that. And I’ve not heard of the bloggers bash. You’ll have to tell me more.
Rather than me try to explain it here, I will only say that this will be the second event. My impressions of the first are reported here (http://graemecumming.net/2015/08/09/bloggersbash-my-backside/), and if you go to the Facebook Page (https://www.facebook.com/events/186673541703769/) you’ll get details about this year’s event.
Talking of events, in light of your post here, I guess you won’t be at the WEM Conference this weekend.
Thanks Graeme. It sounds really interesting and great fun. I’ll keep it in mind!
Wishing you well Rebbecca. Good luck, safe travels.
Thank you Carol x
I’m sorry to hear you’ve been in such pain, Rebecca, but I’m pleased to hear there’s a beacon of hope awaiting you across the pond. I sincerely hope he has the answers to your questions and the solutions to enhance your quality of life. I agree with everyone else that you can dip in and out of social media.
Wishing you a safe journey and the strength to overcome whatever lies ahead. xx
Thank you Claire. I’m keeping my fingers crossed. He really is one of the best x
Do hope that you are feeling better Rebecca, and that you can get the help you so badly need in the States. I know you can dip in and out of social media – I do it all the time. Sometimes it’s good to just read posts of those you follow, and when you are ready and able, to write a post yourself. It’s not good to put too much pressure on yourself when you are already struggling. Good luck with it all. x
Thank you Chris. Things are starting to level off a bit now but I’ve noticed that level is a lower level than previously. Keeping my fingers crossed.
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