Life with chronic illnesses is full of ups and downs, there are so many difficult moments and experiences, so many days that don’t go to plan and things you wish you could change. One of the most difficult aspects for me is the constant waiting and being in the darl about what will happen next. At some point everyone with a chronic illness will experience the agony of waiting.
In my case, it feels like I started waiting when I was 12 years old and never really stopped. Waiting for appointments, tests, diagnoses, treatments, results, improvements and declines, it all takes its toll.
Most recently I spent two years waiting for a neurology appointment after my original neurologist prescribed a treatment and then didn’t contact me again. During the period of waiting I began to suffer an increase in headaches and began to suffer with chronic cluster headaches. By the time I finally got to speak to my new neurologist I had been suffering with chronic cluster headaches for around a year and was really in need of a break.
The outcome of that appointment was a course of steroids and an increase in my preventative treatment in the hopes of settling the headaches and preventing a return. After over a week of waiting for the steroid prescription I finally started treatment and got a much needed break. Unfortunately the headaches came back as soon as I stopped the steroids and the cycle of waiting started again. This time I was waiting to see if the headaches would settle or if the extra dose of preventative would kick in.
When the opposite happened, I decided to call my neurologists secretary and she offered to ask him to call me. More waiting ensued. Thankfully he called me the next day so I wasn’t waiting long, and we set up a plan.
Now, a week later I’m waiting for that plan to kick in to action. I am currently waiting to hear about getting oxygen delivered to take during attacks, I am told that it usually takes days for this to happen, but so far there’s no sign. A week may not seem like very long but these headaches are excruciating and every day without the oxygen is an extra day of suffering that isn’t necessary. I am hoping I will hear something soon and get some relief, but it there is just no way to know and there’s really nothing else I can do but wait.
While I’m waiting I know that the phone could ring at any time, so I have to keep my phone with me and on loud so that I don’t miss it, I have a million and one questions about the set up process, how much longer it might take, who to talk to if the oxygen isn’t delivered soon, where to store the oxygen, if the delivery person can even put the oxygen in my bedroom or if they’re allowed to carry it upstairs or not and no one seems to be able to answer me. The need to be constantly available means I can’t ever fully switch off because I need to be able to answer their questions at a moments notice and this is all while dealing with extreme pain, made all the more difficult by the knowledge that there is something that could help right now but for some reason I have to wait longer.
I am also waiting for a nerve block injection to hopefully give me a few weeks or even months headache free. Again, I have no idea how long the waiting list is, so it might be a few months before I get this treatment or it could be a matter of weeks. All I can do is try my best to deal with the pain in the mean time.
To someone outside the chronic illness community it might not sound like a big deal, but this isn’t an isolated situation. I would estimate that I spend around 200 days a year waiting for appointments, phone calls, tests, test results, procedures, prescriptions, medications to work and all sorts of other medical admin. It is so exhausting constantly being in waiting mode, never knowing what will happen next and I think its massively underestimated. The NHS is an amazing system, but communication with patients about how long things will take really needs to be improved. There needs to be less onus on the patient to always chase and ask for information, there needs to be more information about dealing with conditions while waiting for interventions and I think there is a real need for patients to have access to someone to talk to while waiting for the answers and treatments they so desperately need.
Chronic musician 