I don't mean to be melodramatic but quite a few times of late (well since the end of January) you will have found me fighting back the tears. It doesn't happen in "real" life that often, it takes quite a lot to get my dry eyes leaking, it's just the level of pain I am in is increasing and I just don't know what to do with myself.
I have already written about how bad my neck is and how it is triggering migraines. I am in pain with my back from between my shoulder blades, up to the base of my skull, behind my eyes, forehead and down both arms. What a gigantic ball of fun I am! Tilting my head up is causing me to get dizzy, tilting my head down is causing spasms of pain. I am currently managing approximately 1-2 days out of bed the rest of the time I can be found lying flat on my bed or on the sofa. Lying flat is the only position that takes the edge off the pain in my head and neck. I have a feeling that my neck has become highly unstable, I think it's highly likely from doing a bit of research that I have a herniated disc or discs.
I know I sound like doctor Google the kind of patients doctors hate but I have to point out if you are a new follower to this blog it was me that diagnosed EDS and PoTs back in 2010. It took me a year of badgering my then gp to access a consultant who would confirm what I already knew. I hope it is something that can be sorted quickly. I have done all the stuff I can to sort my neck out, I bought a new support pillow, I try to avoid all the things that I know make it worse. How I curse those bloody stomach crunches (which were part of my gentle Pilates routine) I attempted in January which started this mess. One wrong move and I have come a cropper.
The tears have been shed for a variety of reasons firstly the level of pain I am experiencing. If my gp or whomever I am referred to for this decides to put this under the heading of EDS and I am told I will have to learn to live with it I don't know if I can do that. The thought of facing everyday of the rest of my life in this amount of pain, unless I lie flat is just too much to bear. I am only two months in. I always tell myself "this too shall pass" and indeed I have had neck pain before but it has never gone on so long or woken me from my sleep. The headache that accompanies the neck pain feels very much like the headache you get after a lumbar puncture (if you are lucky like me and one of the 10% or so who suffer with this afterwards).
Secondly tears have been shed through frustration when the pain is at its very worst I can do nothing except lie in a darkened room, with a heating pad on my upper back and a hot water bottle on the back of my head. I don't think what I have is cluster headaches or migraines as the pain of those is very different. I do get very light-sensitive when it's bad, I also can't hold my head up as my neck muscles refuse to co-operate. My head drops backwards onto the top of my back and my shoulders hunch in an effort to keep my head up. Every day at some point I resort to wearing a soft neck collar as this takes the edge off the headache. It used to be once the neck collar was on after an hour the pain would go, it doesn't any longer. I am left with a low-grade headache, like a nagging toothache. It is something I am constantly aware of.
I have a doctor's appointment in April, unfortunately my doctor is on annual leave so I couldn't get one sooner. I don't trust any other doctor at the practice except him and this (currently) isn't an emergency, it isn't something that has suddenly come on it has been bubbling away under the surface for some weeks now. April will soon be here but I also know my gp can not wave a magic wand, if I am referred to a consultant it will still be weeks waiting for tests etc to find out what is wrong.
Hubby has five days off over Easter and we had plans, they've been thrown into disarray (yet again) because other than lying down there is very little I can do. We will make the best of it like we always do but I am tired of losing so much of our precious time together. I try not to reveal how much I am struggling to him (he doesn't do reading, although he does occasionally read my blog) although I guess he isn't oblivious to it.
I am sorry that this post is such a downer, my neck is currently stuck in a collar whilst I try to balance my chromebook in such a way that I don't look down and don't move my arms around because they hurt so much.
So excuse me whilst I sob quietly in the corner, trying very hard not to let the pain overwhelm me.