It’s been a while since I updated you, or did a video diary entry, on the whole, neck issue thing that I’ve been living with. So, as things have taken a backwards turn this past week or so, I thought it was a perfect time to provide that update.
I’ve done a video entry and as it’s 8 minutes long, I think I’ll leave it all to the video, but let’s just say, things aren’t going well and I’ve now taken my collar off and my health is being affected by it. But, I’m still doing what I need to do. There are no other options available.
I will try not to leave it as long between entries in future, but I did need a bit of a rant this time…
Oh, Rebecca, I am so sorry to hear about all this! Having to start all over – go back to Square One – is so demoralising! I really admire you for going on and for being determined, especially given the physical setbacks you’ve had. Here’s hoping your new routine will help you and give you some relief. Thinking of you…
Thank you Margot. The determination I have only appeared after a week of feeling positively sorry for myself! 🙂 But yes, there really is nowhere to go but forwards.
Prayers for you! You’ve worked so hard to get to this point. Hopefully starting over will get you closer to a resolution.
Thank you Alex. I appreciate them.
Not good news, Rebecca. Why do you trust this physiotherapist more than the doctors who suggested the color that ultimately helped? Do they defer to her also? I know dealing with a horrid orphan disease my daughter had/has, every expert had a different opinion. It was left to us to sort the mess.
Thanks for the update. I hope the next is much happier.
The consultant deferred to her Jacqui. He was going to refer me to the neurosurgeon after I’d seen her and she’d written a report but obviously now he won’t. Like you with your daughter I have to wade through the mess of medical professionals who keep contradicting each other and it’s hard when I know something is wrong and it needs addressing soon.
A very brave post, Rebecca. I’m so sorry to hear that things aren’t going well. Thinking of you and hoping that your new routine proves fruitful. Always happy to chat, even if you just want someone to holler at! Take care, my friend.
Thank you Jane. I know where you are xx
Oh, Rebecca, so sorry to hear about this – let’s hope it’s a step back but then two steps forward. I hope you find a routine that works for you, and thinking of you.
Thank you Marina. It’s been a long old haul so far and I’m getting used to the journey now. I’m lucky that I have my love of writing and reading to keep me going and to energise my mind, as well as a wonderfully supportive family. I’m sure I’ll get this sorted at some point. It might just take a while.
I’m sorry to hear that, Rebecca. My thoughts are with you.
Thank you Jose.
I hope you feel some better soon Rebecca.
Thank you Cathy.
I hope it all works out as you plan. It’s so depressing to be in the position of going backwards. I hope you are able to avoid depression. That only compounds things. Please do keep us updated!
Thank you Corina. I am quite focused on writing and that, so far, has helped keep me from dipping too low. That as well as a wonderful family. 🙂
That must have been very emotional to record that.. I too have medical issues which seem to ensure that any forward progression I make is then followed by two steps backwards.. I know how much of a battle each day must be for you, how it shatters your concentration. Fingers crossed for you Rebecca.
Thank you Rachel. I’m sorry you struggle also. I think we have a lot going for us though because we have a love of fiction. There are many other worlds to get lost inside of. 🙂
So sorry to hear this, Rebecca x
Thanks Susi x
Oh, Rebecca, I’m so sorry to hear this. I have RA, among a slew of other issues (though I rarely tell people. Silly, I know). For years, every time I saw a new doctor they wanted to use me as a guinea pig. Please get a second opinion. Is there some reason you went to this new physiotherapist? A few years back, I had a doctor who stripped me of all my meds, stating “there’s nothing wrong with you.” And my quality of life drastically declined. It’s so frustrating, because you know how you feel. And now, you have proof with your new band. I hate that you’re going through this. *Hugs*
P.S. Love your accent! I could listen to you all day. 🙂
Ha! Thank you Sue. I know if I heard you talk I’d be saying the same thing of you 🙂
And thank you. I’m sorry you have also experienced the same. I think many people who live with chronic illness do find this kind of attitude at some point in their treatment. It’s sad. We don’t choose to live like this. I wish I had my full health. My consultant sent me to the physio for a report before he’d send me to the neuro. Now I’m not being referred to the neuro. The second opinion will be when I pay for an opinion in the States now.
Get a second opinion. You’ve already got your proof from the Professor, do not do anything until you get that second opinion. Have you written to your Prof to tell him what the physio said? He can back you up with a strongly worded missive to said physio. This physio’s determination to come up with another reason for your condition may be about an NHS cost saving drive as the op you need is expensive. You already know what physical exercise does, do not risk your quality of life due to one person’s opinion.
It’s so difficult Pam. I kind of messed things up a bit myself by swapping Drs. The physio was private but the neurosurgeon I’d be referred to would have been NHS and yes that would have been costly. Also having been at a pain clinic run by a physio in the past I know that they believe most things can be cured by good posture and exercise. I’ve kept my collar off and I’ve made a very conscious effort with my posture. It’s helped the pain on days when I’m taking it easy anyway but on a day when I try and behave like a human being then it all goes to rat shit and I’m in agony. My consultant said he’d liaise with the professor and the radiologist but I’ve heard nothing back. I think it was to shut me up. I’m going to have to take my case up in the States now. At some considerable expense.
I’m so sorry to hear about your setbacks Rebecca. Having had my own experiences with physiotherapists (both good and bad), personally I wouldn’t trust their word over that of a Professor or a specialist doctor so please do consider seeking another opinion. Only you know how your symptoms affect your daily life and its you that has to live with it. I do hope you can see some improvement soon. x
Thanks Karen. I’ve continued to keep my collar off and I can’t cope with day to day life as an ‘average’ person would expect to. I am going to seek out another professional opinion but it’s going to have to be elsewhere now.
Rebecca, I’m sorry to hear all you’ve been going through. As if it isn’t enough dealing with daily chronic pain amongst other symptoms and then you have to deal with the “experts”.
Rant completely justified. :/
I know what it feels like to have to deal with conflicting “expert opinions” and frustrating would be an understatement.
So I truly hope things get better for you and don’t be afraid to push for 2nd opinions. It is your body. It is your pain that impacts your life. You have a right to demand more and demand better from the “experts”.
Sending hugs + healing thoughts as always,
– Kim 🙂