Today was D Day. I was supposed to be on my way to London to receive my mast cell test results from Dr Seneviratne. Only my period is due and at 8pm last night I started with a migraine and I just knew that today was never going to happen. After being awake literally all night in excruciating pain, with my skull feeling like it was being eating by rats from the inside out, the room spinning, the sunlight piercing my eyes like a thousand stabbing needles and barely able to keep down my breakfast, I cancelled my train ticket at 7am and left a message for Dr S’s secretary explaining I was too ill to spend 7 hours on a train today but asking if I could have a telephone or Skype appointment instead. I didn’t think it would be a problem, as I wasn’t going to have any kind of examination or anything, and I offered to pay exactly the same fee as I would if I were seeing him face to face.
She rang me back to say that “no, Dr S couldn’t do a telephone appointment” and I was left in no doubt that cancelling my appointment was in very bad form. Did I know how busy they were and he now had an empty slot and was out of pocket as he still had to pay the room charge. I felt like saying that as he makes £810 per night, on top of his minimum of £100,000 per annum as an NHS consultant, I’m fairly sure me cancelling wasn’t going to leave him destitute, even with paying the room fee, but I think if I’d started to get arsey with her I wouldn’t have been able to stop.
I was told the next early appointment (I have to have an appointment before 6pm as the last train taking me the 300 miles home is at 7.30pm from Euston) was in January. I wanted to bawl. I begged for an earlier one, so she said she would try and shuffle some patients about and get me in for mid December. But I was told in no uncertain terms that I was not allowed to cancel if she did. The trouble is, I have no control over my health. If I wake up as ill as I have today I’m simply not capable of driving to town to catch the train, then spending 7 hours on the tilting pendolino without puking my guts up. It’s not like I’ve cancelled to go on a day out to the beach.
Today I’m wondering if it’s all worth it. The constant fighting to get diagnosed with first ME, then EDS and now MCAD. When I react to all the drugs they offer I’m just left on the scrap heap anyway, never seeing a doctor from one year to the next as they don’t know what else to do with me. None of them are interested. None of them see me as a puzzle or a challenge. Or even see me with compassion for my struggle and a willingness to help. I’m just a ‘heart sink’ patient. A problem. Or it seems to me in this case, a cash cow.
I was so traumatized at the way I was treated by medical staff early on in my illness history that I didn’t see a soul from 1998-2010. I occasionally called my GP when I thought I was actually dying, or if I had a raging chest infection which required antibiotics, but other than that I simply couldn’t face the disinterest and sighs of annoyance when I explained I can’t take x, y, or z drug because it sends me into shock (they never believe this, which is why the MCAD diagnosis has become so all important). It’s the lack of care and compassion that gets me the most. It’s the heartless secretaries who forget they’re dealing with ill, frightened, often desperate human beings. It’s soul destroying and the emotional trauma is worse than the physical illness symptoms. I’m just not sure I can do it anymore. I just want to curl up in a ball, die, and get it over with. It’s not like anyone would really notice, invisible as I am. I’m not sure how many times I can keep picking myself up and putting one foot past the other. Fighting, Challenging. Researching. And doing it all while feeling this ill. It’s exhausting and after 20 years I’m really really tired.