As you may know if you have read my previous blog about suffering with a chronic illness. I am a IBD sufferer. My main personal symptoms are chronic abdominal pain, vomiting and headaches. I have been on this journey for 15 years and have tried everything. I have been to see consultants, private and NHS, passed from gastroenterology to gynocologists, hypnotherapy, endured every kind of invasive investigative procedure possible and as for medicines I have tried EVERYTHING, no regular anti spasmodic medicines work for me. I have a high pain threshold but also a high tolerance for medicines so nothing really makes any difference so now it’s a case of managing the pain and for that I am prescribed tramadol and that I only take when I nothing else helps as that too has little effect.
I am currently on my last strip of tramadol and with stress causing a massive IBD and eczema flare up I booked a appointment at my doctor (which in itself took over a week). Every time I go to my surgery (which I have been at for 5 years and from birth at the one previous) I am seen by a different doctor which would be fine but I am always met with the same blank stares and I have to start my 15 year story from the beginning.
Anyway to the point, I sat down and started explaining that I needed some betnovate for my eczema (a steroid cream that’s the only thing that helps) she started analysing everything I have done up to this point, all of which were wrong (in her eyes!!) and then looked at me and said ‘when did it start we have no records of it?’ Which drives me crazy as I have had it since I was a toddler and I spent most of my teen years hospitalised or in bandages so how can there be no records. She finally backed down and ‘allowed’ me my cream but also 4 other less potent one she wants me to use. To add insult to injury she asked me if I wanted a leaflet about living with eczema, errrrmmmmmm NO!
So I knew by this point she was being a super doctor. Don’t get me wrong I understand doctors cannot prescribe unknowingly but the prescription for tramadol is a repeat prescription from my previous doctor. To clear this up I could understand if I had been for a prescription a month or two ago but my last box was given to me in 2015 as I only take them as a last measure. Like the eczema conversation she said she could see no files to back up my illness which by this point had my anxiety levels peaked. I explained that I have been sent to many consultants by previous doctors Both at this surgery and my previous doctors so that’s impossible! After some tapping on her computer she relented and said she could see some letters from the consultant but she couldn’t give me a pescription as it’s not ‘protocol’and she had to follow the ‘correct pathways’. So she told me to come back the following day so she could read my letters and make her mind up as to where we go next. I went back today to be told she was waiting for correspondence from my consultant.
I was furious and above everything totally frustrated. I have spent 15 years being poked and prodded and I have followed every piece of advice and taken everything as prescribed and now I feel like I am being questioned as if I use them for some other use. I was made to feel like a child making my illness up (which as most chronic pain sufferers will understand is one the biggest struggles we endure living with an invisible illness). Now I have the most awful feeling she will not prescribe me only relief medication and instead try giving me something else and starting investigating again, a total disheartening step back and a waste of time and money.
I was walking back from the surgery by myself and everything was racing through my mind.
- How can I live with this pain?
- How can I be in this position again?
- What do I do if I have to live in agony without any pain relief?
- What about me makes my case so hard to understand?
The basic answers to the above is I cannot live like this, there is no quality of life if I have live like this. This is the whole reason I agreed to go for my last set of investigations, of which pain relief at the time through pescribed drugs were the agreed outcome.
So here I am until next week waiting for the doctor to decide my future, I’m so angry that a women who knows nothing about me or how my illness affects me personally is able to come in and just stop the only thing that makes the physical side of life barable.
I shall update when I know more and hopefully it’s the answer I need and I’m back to the grind of managing the illness rather than whatever she would want me to endure next, so keep your fingers crossed that she trusts me and hears what she needs to just give me my medication.
Signing off with love and lipstick,