This is a daunting blog post to write, it makes the situation that much more a reality. I bet your curiosity is piqued. So I have been with the same medical team since I transferred to adult services in the NHS at nineteen. There wasn’t a clear path for me to progress from paediatrics so we found the clinic that offered what I needed and what fitted the help I was already getting. It hasn’t been a perfect fit and there have been times when I’ve felt backed into a corner and that my opinion wasn’t relevant.
The clinic has helped me as much as they can and I’ve exhausted their resources. I barely see my consultant and I can have a set of appointments with other members of the team before I need to go back on a waiting list. I do just want to say I have nothing but admiration for the NHS and all the staff who are working their hardest within the parameters they have been given. I am so grateful we have the NHS in the UK even if it isn’t always perfect.
However, I have come to the choice that for some of my management of my ME/CFS I need to look elsewhere. I am looking into being able to have more flexibility than the NHS can’t offer me for therapy. I am only at the start of this process and it may take a long time to sort. This does mean that I am going to have to pay for some of the help I am receiving. As sad as it makes me that I don’t have a natural place within the NHS to help me I know that I have probably had better help than most experience.
I will still be using the NHS for my medical help it just means we are trying to build my team. I don’t fit any clinics so it will be about the patchwork of expertise and hopefully, it will be better for me. I am more than grateful for the help I have received over the ten years of my illness. I wanted to write this not to bash the NHS but to say people with ME/CFS don’t fit into any place easily and that can make finding help very challenging.
Sometimes you have to tear the support down and recreate it to suit you better. I won’t deny this is a really scary prospect for me because it is. I know that what is being offered isn’t what is best for me but I know this system and what it looks like. Building a new team from scratch is like taking off a leaking roof to save a house. You know it needs to be done, you just pray you still have a house to put back together again.
I am a firm believer that it’s okay to want to have more input from the medical profession especially if your ME/CFS fluctuates and quickly can become worse. I have been told before that I need to grow up and manage my illness like the hundreds of people that do. I would say I manage my illness every day but I still want a place to go when my symptoms change. My symptoms tend to be in three groups and we swing between them. Sometimes you just need to have that extra bit of knowledge. That isn’t a bad thing, I’ve had this illness over ten years now and I’m in my twenties. I know this illness for me inside out back to front. I can tell you if something will work for me or if it won’t. I will try sensible suggestions but I won’t give in to unrealistic and sometimes dangerous plans. I am an expert in my fingerprint of ME/CFS, we all are. I don’t have the medical training to know what medications are correct and how to proceed with new symptoms. It needs to be a collaboration between doctor and patient.
I wanted to write this out because I want to say as frightening as it can be sometimes you need to break something to make it better. I have tried to fit into the box of the clinic I was part of and it just wasn’t working for me so I need to find a better way to do it. I am a firm believer in trying to make the best of what you can access but that shouldn’t stop you from stepping back and going elsewhere if you need to. You know your illness better than anybody because you live it, we need support and that’s okay. Most long term conditions are monitored and have annual reviews. ME/CFS shouldn’t be different.