Today I am mostly dealing with the fall out from yesterday. The probability of this being a merry and lighthearted update is about the same as me waking up in the morning a svelte, toned size 12 and rolling over to find that my new sleeping partner is Eric from The Southern Vampire Mysteries series, the TV series called True Blood. It’s not going to happen, so for those of you looking for a lighthearted escape from the trials of your day, there’s nothing to see here. That is of course assuming that I’m not just talking to myself, and if I am, well I can handle that. Beats talking to the cats, at least I might answer.
I feel, in all honesty today, like someone has turned my world topsy turvy for giggles “Look – she seems to be managing OK now, making progress. Let’s throw another spanner in the works, see how she deals with this.” Yesterday I knew exactly what I was dealing with. The pain would accompany me, as the person in Orthopaedic Triage put it, “until the end of your days.” Yesterday the psychiatric consultant had other ideas. He suggested paying for a private consultant with a Pain Specialist consultant as he didn’t believe I was on the right mix of medication to enable me to best manage the pain, and also, that the Orthopaedic Triage person was incorrect, seeing as I’ve yet to see a Neurologist or any other consultant who can give me a definite, written on paper, stamped and sealed diagnosis. Hell I’ve not even had all of the necessary x rays or MRIs, one MRI of my joints when I’m in pain in 5 joint areas of my body and 1 x ray of my neck.We’ll gloss over the pain in my shoulders, back, knees and hips then.
You’d think that I’d be singing and dancing all around my walking stick to celebrate wouldn’t you? Relieved that there is hope at the end of the tunnel, that there’s a chance my life might get back to normal? I mean, if a friend of mine was in a similar situation, I’d be accompanying them on a conga party line throughout the street. I don’t feel like that, not at all. Instead I feel sick to my stomach, it has taken me months to get used to how I am, to my limitations and to, the hardest part of all, accept them. I lived for 13 months battling the pain and believing that I’d get better “one day.” One day I’d be pain free and this would just be a distant bad dream. Until Christmas Eve when the bombshell was dropped that this was it. I’ve lived for the past 4 months every day coming to terms with the fact that this is it. I might make progress, but pain wise, this is it. Now it feels like someone has blown a hole through the middle of my beliefs once more and I’m afraid to hope.
I desperately want my old life back. Desperately, even that word can’t convey how much I yearn for my life to go back to normal, but in accepting that this isn’t it, that maybe, one day I can be pain free, I feel I’m opening myself up for more heartache along the way and right now, I don’t honestly know if I can do that. I know that I’m fortunate, some people aren’t given even a glimmer of hope that they might recover fully, I know that others have lived for the whole of their life in circumstances far worse than mine. I don’t mean to sound like a petulant child whining about losing their toy and I agree that all of this is relative but right now, this matters to me.
This afternoon I called my relative who’s medically trained to discuss the situation with them. She was explaining how it could cause an issue about responsibility of my care if I chose to add a private medical professional into the mix and as the conversation developed, she revealed that she thought I’d already seen a Pain Specialist through the NHS (nope) and how I’d tried a number of different painkillers to get to the stage that I’m at – definitely not as my GP will catagorically not prescribe me anything but the drugs I’m on. So my next step is to try and persuade anyone who will listen to refer me to a Pain Specialist.
And if anyone has any miracle type cure recommendations in the meantime, please, give me a shout.