Through my blog I aim to share my life with chronic illness from my point of view and I don't aim to sugar coat things and I will aim to be honest in my views and how situations leave me feeling, but also to make a record of my life for myself and share this to raise awareness of my life and my illnesses.
Today my care agency nurse and I went to see my GP to get a few things sorted; on the list included: syringes and accessories for my oral meds; funding for carers through Continuing Health Assessments; a prescriptive care plan for ambulance crews and A&E; rescue medication for my seizures; referral to other services who may be able to help me; changing one of my medication to a monthly basis to make things easier for the pharmacy; recent kidney pain; increasing my clonazepam; chasing up my video telemetry referral and funding for a CareLink alarm.
The meeting didn't quite go as I planned. I though having my nurse with me would mean that the list would all get nicely ticked off, but sadly it didn't quite go that way.
One of my main illnesses that is most problematic for me (other than the hypermobility related issues) is Functional Neurological Disorder, or FND for short. My GP started of by stating that FND wasn't actually an illness, but the name given to a set of medically unexplained symptoms. I felt heartbroken, as to me FND IS a REAL illness and one that I live with day-in day-out and never get a break from. He then went on to to tell us that in my notes that clinicians had written in my notes that they don't believe me to be ill and therefore have refused to give me treatment (which kind of explained my experiences in A&E and with the local gastro consultant a while back). I felt angry and upset at the knowledge of this.
My GP went on to explain that because I don't have a diagnosis he has to justify all of the medications he prescribes because on paper he's prescribing medications for a non-existent illness. And because of this he cannot issue me with rescue medication like buccal Midazolam for when my seizures are very bad (what was one thing crossed off our list unfortunately).
Because of this 'non diagnosis' I am unlikely to care social care on board or a CareLink alarm meaning that I must make do with what care I can afford, (which is currently not meeting my needs).
My GP agreed to my nurse arranging a 'Multidisciplinary Meeting' between my care agency, adult social care and himself. Though from past dealings with adult social care I've lost my faith in them.
He also stated that if I had cancer there would be a lot more he could do for me and he kept repeatedly saying how the NHS was underfunded and how we don't live in an areas with much money and resources - sometimes I wonder if my case would be different if I live elsewhere, like in London?
I'll be honest; I got upset in the appointment. I got upset to be told that FND and M.E. aren't "real" illnesses and how some clinicians don't believe me to be ill at all and the reality that I'm most likely not going to get any funding for carers. I was honest with how difficult I'm finding things (and my nurse chipped in a bit too); how much I struggle to simply get washed and dressed and how there's days where all I can simply do is stay in bed. How I struggle with incontinence and can't get properly washed after accidents and how scared I am when I'm home alone in case I fall or have a seizure and have difficulty breathing or chock on my vomit (like I have done in the past). And how come I have symptoms like muscle spasms if there's no illness? And how come there's people like Professor Edwards who specialise in FND? And what about my organic illnesses like Hypermobile Spectrum Disorder and what is he going to do about that? (I'm waiting for Dr Kazkaz, my hypermobility specialist rheumatologist, to write to my GP as that hasn't been done yet since I saw her in November.)
My GP's other advice to me is when I am in A&E and have a dislocation/subluxtion in a joint from a seizure is to leave it out of place as proof so they can give me pain relief. The problem however is that when you live with hypermobile joints they have a habit of correcting themselves most of the time and the advice Dr Kazkaz gave me was to just breathe and let it correct itself and that I don't need medical manipulation to correct dislocated/subluxed joints. So he kind of contradicted the advice I'd been given so I feel a bit stuck with what to do now?
I am however filled with gratitude for my nurse and for being there and giving me a hug when she dropped me off at home an for all that she does for me. She's going to try and format an MDT meeting and also find the order codes for my syringes and accessories so my GP can order them for me.
My last option, which I really don't want to do is find a new GP; one that believes in FND and M.E. and will treat the as REAL illnesses. Despite his flaws he is a good GP and moving GP would be a lot of hassle what with all the medication I'm on and I don't want to risk having a new GP that might want to change things like my medication regime. And my GP and I, we have an honest relationship too which I think is good and healthy. I'm also glad that he's agreed to increase my Clonazepam, so fingers crossed that helps - I need to call my pharmacy to let them know of the increase so they can look out for it.
I also emailed my neurologist, Professor Mark Edwards this evening detailing the meeting I had with my GP and asking him to write to my GP explaining about FND and M.E. I also asked him if he could refer me to an M.E. specialist team to help me with that and about my ambulance and A&E care plan and as well as medication in that if he could write an explanation of what FND and M.E. is and how they are real illnesses.
I just simply feel defeated and deflated. I'm sick and tired of being sick and tired. I want FND and M.E. to be recognised and understood and treated as REAL illnesses. Hopefully one day that will be the case.
But for now I'll just trust in my nurse and see how things go and wait for a reply from Professor Edwards.