I, the patient, am also my own doctor and own secretary – because no one else will ever be as invested as I am in what’s best for me. I don’t get any kick out of the constant need to chase up referrals or appointments. I feel embarrassed about handing over literature that shows a conflict between my connective tissue disorder and a doctor’s suggested treatment/medication, but I need to do this because my word alone will rarely suffice and it’s me that has to deal with the physical and emotional effects of detrimental treatment plans. Who knew a steroid nasal spray would wreck the inside of my nose? Me. But my doctor didn’t listen. I’m the one that had to live with the result.
I hate it.
I swear, there is a Ren shaped crack in the entire NHS system – which don’t get me wrong, is an invaluable resource that I am eternally grateful for. Damn, I worked for the NHS as a dental nurse. Almost every single referral of mine gets lost and recalls/follow ups are never sent. I’ve spent today chasing up gynaecology and ENT follow up appointments that I’ve still not received. On Monday, I had to call Rheumatology to ask them to refer me down to London because doctors in Aberdeen are making a right dog’s dinner of my treatment. I asked rheumatology what had happened to my pain clinic physiotherapist referral. No one knew. So I called the pain clinic. My urgent referral from SEPTEMBER had seemingly been eaten by the referral munching monster.
Now I have a pain physiotherapy appointment – that I should have been sent for a year ago but the pain clinic professor I saw, frankly, wasn’t all that enamoured at the prospect of helping me. It isn’t until the 8th of March, but that’s okay. I saw my GP today and she’s going to write to the pain clinic and ask them for a doctor to also see me on that day with a view to trying something, anything that will allow me a short term crack at physio. It’s the only way I am going to get better. I have suggested either Sativex (cannabis) spray or Ketamine infusions. If they say no, then I expect them to come up with another suggestion. I can’t believe that he told me to “hope my pain improves”. You wouldn’t tell someone with HIV to “hope” they get better or someone with MS to hope they miraculously get better. What a ballsack.
I spoke to a receptionist at ENT on Friday, she was going to call me back. She didn’t. I called and spoke to the receptionist today, who put me through to my ENT doctor’s secretary. She did some digging and called me back – I know, MADNESS – saying that I’ve been referred onto see an ENT/immunologist guy who is “Course Director for the Scottish ENT update course, Facial pain symposium course, Practical management of allergy and Management of difficult airway at the University Hospital, Aberdeen Royal Infirmary.” Yep. That’ll do nicely. Of course, the day they had to give me was the 8th of March which will be referred to from now on as “pain hell day”. I had to ask for another day as I’m hoping that the pain clinic will pull an appointment out of their ass so that I can see a pain doctor and the pain physio in one day. I don’t want to finally get to see this guy and just cry at him because I’ve had a painful, traumatic day. However, I am extremely grateful that he’s fitting me in at 4pm.
I’m still waiting to hear from gynaecology. My GP said to stop the pill. I used to have days where my pain would sit at a 2. I could do things and be me and have a life on those days. But now, because I have a constant level of oestrogen and progesterone, my pain is sitting at a level 5 and there is it doesn’t shift. It’s taken away my good days. I’m having no periods, so I’m not having the blissful day or two after my period where my hormone levels are low. I need those days for my sanity.
So, I’m waiting to hear back from gynaecology. I don’t know if I should stop the pill now, as in, today. Or, if I’d be better keeping it together until they can see me (in the near future) to start on plan B: The injections to temporarily switch off my ovaries. Stopping the pill will inevitably lead to a hormonal shit storm, which means a pain party for one, which means me being physically and mentally absolutely ruined. Then, when I start the injections, I imagine this will also be the case. It’d be ideal if we could just do it all in one go and only have one mega-hormone assault on my body.
Bothering doctors is exhausting. Being sick is exhausting. Because I had that viral bug, my face is full of snot. Because of my weird septum, huge turbinates and wiggly no-drain Eustachian tubes, the gunge is just sitting in my face making it extremely sore. I can’t breathe properly, I can’t hear, my face hurts, my nose hurts, my ears hurt. If I try and blow my nose properly, I faint. This is on top of being in a particularly painful period of time EDS wise. LIFE IS PAIN. I don’t have the energy to be chasing all of these doctors, but I have to.
When people ask me what I do for work, I’m going to start saying that I’m a medical secretary to most of Aberdeen Royal Infirmary. It certainly fucking feels like it.