As if it's not enough coping with pain, fatigue and other debilitating symptoms, managing a chronic illness is a full time job! Arranging appointments and transport, ordering prescriptions and chasing up test results, it takes a lot of time and energy, both of which are in short supply if you're unwell.
This week I've been chasing medical appointments. It's been two months since Neurosciences at the Hallamshire wrote to tell me they'd make an appointment "in due course" so I called them to see what was happening. a very nice lady told me I had been graded and sent to a local hospital, Rotherham or Doncaster, she didn't know which.
I wasn't happy but we worked things out. She would telephone my GP surgery and get them to re-send the referral and also send the letter from Dr Hakim with my new diagnosis of Joint Hypermobility Syndrome. Then I would be put on the list to be seen at the Hallamshire. The only bad news is I would still have to wait another four months to see somebody.
I thought it was sorted until the nice lady phoned me back. The GP surgery claimed they did not have a letter from Dr Hakim. Now my GP surgery is notorious for losing important pieces of paper but I know for a fact that they did have it because I saw my GP holding the letter at my last appointment. So the nice lady told me I would have to take my own copy of the letter to my appointment to tell the doctor my new diagnosis.
Call me picky but wouldn't it be helpful if my GP surgery had done something useful with an important letter like a diagnosis from a consultant, like put it in my file or scan it on the computer system?
Wouldn't it be useful if the neurology department knew all my current information before deciding who I should see and when I should be seen?
I did have some good news though. I'm going to Stanmore on Monday! Woo hoo! They phoned me with a cancellation appointment. I won't be seeing Dr Cohen but hopefully her colleague will be able to help me and at least put me on the waiting list for rehab.
And if I hadn't had enough of appointments I had to go to the dentist today. I'm not on antibiotics because my root canal is flaring up. If it's not one thing it's another!