Do you ever feel completely frustrated with illness and GPs and the ways that health professionals and government agencies react to it? If so, this is the blog post for you!
I am diagnosed with a few overlapping illnesses that seem to cluster together like a group of gossiping old women! Ehlers Danlos Syndrome, Fibromyalgia and Chronic Fatigue or ME as it is known by doctors.
Together these old women leave me mostly housebound, exhausted, unable to clean my home or do my hobbies as much as I would like. They took away my ability to work in my twenties and stole my chance to be a nurse I’d trained three years to be. When I do go out, I use a walking frame that has a seat so I can rest and turns into a wheelchair. It’s an amazing piece of kit I’ve raved about before on the blog, and my YouTube channel.
None of these Illnesses are very rare, more and more people are being diagnosed, especially since covid and the ‘long covid’ diagnosis, many think will end up being ME. However, many health professionals and government agencies seem to still believe they are all just in our heads!
Recently NICE guidelines were changed to say that anyone with chronic pain with no clear underlying cause; or pain that is out of proportion to any observable injury or disease will no longer be given pain relief. Instead, we will be given antidepressants, therapy and encouraged to exercise.
This left me so angry and scared I could scream, because getting to even see a doctor now is impossible.
My GP practice will still not even allow you to go to the reception desk to speak to someone unless you have an appointment. On top of that doctors are only doing telephone appointments and we have to ring to get one at 8am every morning in the hopes of being given one. It is not good patient care and really frustrating for those of us with chronic illness who would just like a doctor to see us occasionally.
Now I am going to have to try and get one of these telephone appointments because of the new NICE guidelines. I have been on my pain relief for a while now, and I am afraid they will just one day refuse to put them on my repeat prescription, and I will have to go cold turkey to come off them.
I want to speak to a doctor to ask if we can get a plan together to come off them slowly and safely and to ask to be referred to a therapist and a physiotherapist. I know the GPs will have to follow these guidelines and I want to have my fears eased and get a plan together. It feels more like the hunger games than trying to get good medical care, but that is life right now with these illnesses.
See what they don’t seem to understand is that this is going to make me more disabled, pain relief is what allows me to walk and do the little I can now. With my pain back full force I really don’t know the sort of walking aids and care I will need.
I am really scared right now; I feel like the government are going to refuse my illnesses any benefits soon as well especially if they believe it’s all in our heads. It is scary and I’m sure I’m not alone being frustrated with illness and GPs, but if we stand together, hopefully we can help one another.