I’m Out Of Hospital, But What Next?

So – I’m out of hospital, but what next? To tell you the truth, I don’t know. Do I want to know? The autistic part of me tells me – “yes you need to plan, you need to know what’s going to happen next” however with not much answers, I can’t have that plan of action, I can’t focus on what is going to happen if I don’t know what it is.

The past three weeks have been incredibly stressful as you can imagine. Bunches of tests proving nothing. So the doctors can’t give me any definitive answers. That being said, I’ve had a few possible answers.

These are:

  • Fibromyalgia
  • Multiple Sclerosis (MS)
  • Functional Neurological Disorder (FND)

I’m not exactly swayed by the possibility of Fibromyalgia and that’s purely down to the somewhat sudden onset of symptoms, rather than over a sustained period of time. I do have pain, but when I have spoken to my friend who has fibromyalgia, the pain doesn’t really register. It’s hard because I don’t tend to vocalise pain unless it’s immediate. I suppose it’s something worth investigating, but if it leads me nowhere, it leads me nowhere.

As for Multiple Sclerosis (MS), the sudden onset of symptoms can be somewhat attributed to a particular type of MS, despite this, my MRI scan was clear. That being said a consultant told me, very early stages of MS aren’t detected on MRI scans, so they can’t rule it in or out at this stage. I have to watch out for some symptoms and if I have any, I have to report to my GP.

Now for Functional Neurological Disorder (FND). This can be brought on by stress and does not show on MRI scans and there is no test that can diagnose it. It’s more of a mind over body disorder and from what I’m reading, it does make some degree of sense, but there is no certainly about it. I’ve been doing a little bit of digging and come across an article that explores links between FND and the Pfizer vaccine for COVID-19. In no way am I suggesting the vaccine is responsible. However my symptoms mainly came about after my first dose.

I don’t think I was taken very seriously when I spoke about the possible link between the vaccine and my symptoms. I felt it was my moral duty to report it, but when you get dismissed somewhat, it undermines what you think is morally right, not only for myself, but others too. This being said with the research I’ve done I have done, I’ve noticed there have been quite a few posts about FND and possible links to the Pfizer vaccine. I’ve made contact with one person who’s documenting her journey, so hopefully we can connect and in turn support each other through it. I’ve also reported my symptoms to the MHRA Yellow Card Scheme.

My experience in hospital wasn’t particularly the best. I had an autism health passport, but I honestly don’t think it was taken much notice of. I have a ton of respect for those who work in the NHS, however this one particular nurse was plain awful and rude. It wasn’t just me who thought this, it was other patients and also Rebecca. I’ve provided feedback and I do wonder what will come if it… I don’t think it will come to much but who knows?

If the truth be told, these past three weeks have given me a lot of food for thought. I’ve been away from Rebecca (visits aside) and also Joshua who was unable to visit me. It’s been tough but I’ve really thought a lot about a lot of things.

Today has been my first full day at home. Rebecca has been helping with things which I’m so grateful for. I’m seriously contemplating the second dose of the vaccine given how things have been since my first. Without any evidence or medical advice – it’s so hard to make an informed decision but I will talk through it with Rebecca and my loved ones. I don’t want this to progress any further but I also want to protect myself and others.

Thank you to Rebecca for everything today and the support you’ve given me. Thank you to my family and friends for all your support too.

Let’s see where this takes me…

2 Comments:

  1. It must be a very stressful and traumatic time for you and the family matey. Been away from your child especially must have been hard on all of you. I do hope you get some answers and are able to move forward and return to the normal man we know and love. Stay safe and so glad to hear the news that you are home.

    • Thanks for your comment Eddie. It’s been quite tough admittedly but I needed to get myself right, not only for myself but those around me too. Glad to be back at home, but it’s a struggle still. I’m determined to find answers to what is going on.

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