I needed to share where things are at this point. I'm stuck in a bad dream that I can't wake up from.
Back in April, I had progressive health issues. I'm not sure I realised it, but I became anaemic. And because they seemed to be triggered by alcohol use, I felt very ashamed.
After using an online system, I got a phonecall from GP on a Friday morning while I was taking a shower. He said my issues were unlikely to be because of historic heavy drinking, but suggested we test for B12 folate and he agreed to send me to a neurologist too.
Now, his instructions were that I could come into the surgery for a blood test. Then he spoke about neurology and said 'we will write to' you. Then 'leave it with me'.
Somehow, I got it into my head that the Dr would write to me for the blood test appointment. That he said to leave it with him to sort it. Especially as the website said 'do not come to the surgery unless you've been told by a GP and have an appointment'. Well, I guess I thought I was waiting for an appointment.
This was a stupid, irrational mistake. Because he was saying 'You can just come into the surgery for bloods'. And the 'we will write to you' was for neurology.
I then waited for a week before wondering if I'd been forgotten about. I got it into my head that the NHS was understaffed and maybe I'd do them a favour by self treating. And maybe I wasn't being taken seriously and had been forgotten about.
I decided to buy a sublingual dose of B12 and it started to work.
I eventually chased up the Dr who said 'I left a form for you in the surgery, back when we spoke'. and I guess he assumed I'd just turn up to the surgery when I could. But I was waiting for an invitation.
This is the worst mistake I've ever made.
Because I kept taking the sublingual dose for 2 weeks while waiting for the blood test which of course came back as negative, i.e. 'you do not have B12 or folate deficiency, everything's normal'. The doses raised my levels but did not cure my problems.
Since then, I have had to treat myself and my deficiency. I have been injecting B12 regularly but I have overdosed and have since woken up to the muscles in my legs stopping working and I'm now living with myopathy.
I do now have a neurology appointment in late September but for the past 5 months I've been living with severe anxiety over self treatment, lack of sleep AND I've completely ruined my physical health and mental health trying to self treat.
Why did I do this? All because I misunderstood the instructions.
My wife is close to leaving me now because I'm so anxious and I keep her awake. The Doctors think it's all in my head. And on a daily basis I'm struggling with alot of neuropathic pain.
If I keep injecting I may harm myself more or stop the myopathic legs from healing before the neurology appointment.
But without the B12 injections I'm in a terrible state of anxiety, can't sleep and my physical symptoms are getting worse. I've got neuropathic pain all over me.
No-one can seem to help me apart from maybe a neurologist in 30 days time. Even then, I have such a strange story to tell them that it will be hard for them to believe.
Why on earth did I not take on board the GP's statement of' you can just come into the surgery for the blood test'. And go to the surgery for the test?
Somehow, I thought it was a statement leading to more of a direction, i.e 'we;ll write to you'. Why didn't I get him to confirm? Why didn't I just go anyway to the surgery?
I was in the middle of a shower and rushing to another appointment...it was all a new way of doing things and lots of information to take in.
But that moment has now determined the last 5 months of my life which have been the worst. My wife is about to leave me because I can't get better. I haven't been able to work or sleep. Doctors think I'm crazy. My physical and mental health is on the floor.
The B12 deficiency really messes with your mental health, particularly anxiety. I even think it was the reason why I got so confused about what to do and self-treated. I can't really justify any other explanation apart from not being quite right in my head at that point. And not being told clearly enough to go to the surgery.
But what do I do now? Just keeping suffering?
Life doesn't feel like it's worth living this way.