I have a job interview next week, which involves a presentation (eek!). My work situation at the moment is dire, and this job seems perfect for me. I could have written the description myself. It involves planning a new service for older and disabled people – something I’ve been focusing on for some time in my current job and at Fair Access. I’ve spent weeks planning out and writing my presentation over and over. I have to map out how I’d carry out the project, my plan for sustainability and all my ideas.
But I’m due back to work next week, and both parts of the interview are on days I have to work (although luckily in the morning, when I’m due in at work in the afternoon.)
I’m dreading going back, it makes me feel sick. My employer hates me, and makes it obvious at every turn – because when they try and do something impacting my condition I don’t just say yes.
I’m fighting a battle with my local hospital as well. I’ve asked them to look into my lower back issues – as most other people with the same conditions I do, don’t have the same issues with walking that I do. Don’t get me wrong, people with Ehlers-Danlos or Fibromyalgia frequently feel pain on walking, or exhausted – but generally don’t have that strict oh my god the pain cut off point. There is an underlying issue there. My MRI (that took seven years of begging to get a) a couple of years ago showed some degenerative facet joints and arthritis, but both at a moderate level. At that point I could walk about 15-20 minutes. I can now stand for less than a minute. So my GP and I thought it very reasonable for them to look into it, maybe look at some treatment options (usually injections). But after a very dismissive assessment, they discharged me. I put in a complaint, and I got back the most ridiculous letter, once again dismissing me. So I need to keep battling them.
And finally, for a few days there seemed to be a bit less pain in my lower back, and thought it might be improving a little. And then it decided to say haha, you’re funny, and has been on fire for three days straight. I mean it always hurts, but this is just ridiculous.
This month makes it a year since I was finally diagnosed, and brings me up to nine and a half years since my symptoms began.
My lower back has been getting worse and worse, and I believe is the cause for me not being able to stand up long. I went to see my GP and said that I would like to have an updated MRI. My previous MRI in 2009 showed three or four slipped discs, facet degeneration and arthritis. And at that point I could be on my feet for about 15 minutes. I’m now down to under a minute (or so, depending on the day. Sometimes it’s far less, sometimes a bit more if I push myself and ignore the pain.)
My GP said she didn’t have the power to order an MRI unless I was having an operation or something. She asked me when the last time I saw a spinal specialist was, and I said i hadn’t ever. I’ve seen plenty of Rheumatologists and Pain Consultants, but that’s it. She said there was an NHS scheme set up called the Spinal Pathway, and she rolled her eyes and said what a ridiculous name it was. It was for people who had long-term back pain, who hadn’t been able to be helped by their GP. They would assess me – probably by a physiotherapist, and then hopefully send me on for an MRI or to the consultant. Well, that was the plan.
To be honest, as soon as she said a physio was assessing me my heart sunk. I don’t mean to be negative about a whole profession – I know there are good ones out there. It’s just I personally haven’t had a beneficial relationship with one, and I’ve seen many. A physiotherapist was the first person I was sent to when my neck pain started when I was 15. My experience with her was poor. She strapped me up with one of those long brown rolls of plaster you would normally cut to the size of you wound, you know the ones? She cut two strips, long enough to make a massive cross on my back. Her theory was my problems were all due to posture, and when I didn’t sit up straight the plaster would pull and ‘remind me’. After three hellish days, I’d had enough. You know that pain when you pull a plaster off your knee? You either ease it off and make it last longer, or be brave and rip it off. Have you ever had to pull plasters off the length of your back?
I have seen senior physiotherapists, and junior. Spinal Scope ones, and Rheumatological experts. All have given me similar exercise sheets, sometimes done a bit of ultrasound – then when I hadn’t improved in a few visits sent me away saying there is nothing more they can do.
So, when my GP says I need to see yet another physiotherapist in order to see a Spinal Specialist Consultant, I’m not particularly hopeful. In the assessment with the Physio says he doesn’t think it’s that bad as the pain isn’t constant. This isn’t true. I’m just told him it has been constant for nine and a half years. He decides if it was disc problems, the pain would go down my legs. I then ask him for an MRI as we’re not quite sure what the problem is, but he says an MRI should only back up what is found in a physical exam. I fully admit I’m not a doctor – but I guess I just don’t see what looking at me tells him. I then ask about the injections and he declares that I don’t seem to be screaming out in pain for them. This pretty much guts me – who an earth can you possibly tell the amount of pain someone is in? To be frank – I’m offended, and upset.
So I ask if I can see the consultant, and he responds that only 3% of people on the Pathway get to see the consultant. He then puts forward his plan of action. Can you guess?
I’m going into Stanmore for three weeks in January which will include working with a physiotherapist, so I turned his kind offer down. I think I’m going to submit a letter of complaint about his experience. His whole attitude screamed dismissal from the moment I stepped in, and saying I wasn’t screaming out in pain so wasn’t going to offer treatment? It just makes me want to cry.