Advice concerning grief and attending a funeral

[bookworm_14]

hello, this is kind of personal but I could really use some advice/ tips from others with fnd that have been in similar situations if you wouldn’t mind sharing.

I very recently lost someone very important to me. Their funeral is in two days and as you can imagine it’s been a rough and hectic week. Before any of this happen I was actually already having a flare up in my symptoms particularly my speech. I’m writing a eulogy, I won’t be the one reading it outloud but with that and all the other organising with my family my speech has understandably got worse. With everything that’s going on and my fnd symptoms ontop of it I’m very nervous and have extreme anxiety about the day. There will be a lot of extended family there who I haven’t seen for a long time as well as a big crowd of other people too. Crowds in general and being around people too long tend to drain me very quickly cognitively and I know many people will want to talk and try to talk to me at the service but my speech is basically completely gone at the moment and when I do try it comes out barely discernible. I know it will be very overwhelming and basically I don’t know how I can navigate this situation where I can’t talk to people. Its scary to me. I will also be in a wheelchair which will also probably shock some people who haven’t seen me since being diagnosed but that’s more of a me thing. Does anyone have some advice for me? I just feel so overwhelmed with sadness and I’ve been using all my strength on writing the eulogy and preparing I realise I will have to idk prepare myself for all the rest of the things that come with funeral regarding my fnd. I’ve already thought about how it might be a good idea to leave soon after the service… but I’m more at a loss with facing people who i currently can’t talk to while in a head space that feels very raw. Thank you for any thoughts you might have I hope this makes some sense. P.s I’m sorry in advance if I don’t reply to comments I’m very appreciative though.

[Hidden]

I feel so sorry for you I feel exactly the same I avoid being around people as much as I can because talking to people and listening to people talking makes me feel very drained and spaced out,I can't get out what I want to say and I can't take in what people are saying I get very embarrassed about it I actually start to shake and feel dizzy and my head just feels empty,I can feel your anxiety just at the though of what you've got to do.I couldn't go to my son's wedding for the exact reasons that you've mentioned.I find it hard trying to explain to people how FND makes me feel drained when i'm around people sometimes I wish I could take my head off and say to them, here try to function with your head feeling like this.When I'm in a situation where I can't function I just say to people I'm sorry i've got a neurological condition it affects my memory,speech, and concentration and it's overwhelming for me to be around people for a period of time.You could maybe leave shortly after the service and get a family member to explain why.You have to think of yourself aswell and how your going to feel i'm sure people will understand if you had to leave.I know this probably won't help but I just wanted to let you know that your not alone and that someone understands exactly how you feel.I would be ill with anxiety if I was in your position.You could have maybe asked the doctor for some diazipam just to help you to get through the day.GOOD LUCK I WISH YOU ALL THE BEST,I HOPE YOUR NOT TO STRESSED OUT,DO WHAT YOU CAN MANAGE AND LEAVE IF YOU HAVE TO. I'm totally drained now and struggling to function but I had to reply to your post.

[bookworm_14 in reply to Hidden]

Thank you for taking the time to reply to me while you’re struggling-I understand. I wish you all the best as well.

[ChaosCats]

The best advice I can maybe give is to maybe have a notebook to use or have a small card with you that basically explains FND and/or the fact you've been having difficulty with speech in particular. A pre-written thing regarding the speech difficulty might be best that way you don't have to think about wording things the day of. You would just have a little card or piece of paper to show people if they ask you about it. If you get drained in part by the sensory input maybe earplugs could also help?

[bookworm_14 in reply to ChaosCats]

Thank you

[Alienbunnies]

I’m so sorry for your loss. Grief is such a hard emotion to deal with, especially combined with FND.

Do you have a family member or friend that you can be with on the day of the funeral for support? If so, I would rely heavily on them for support that day. Let them explain to others if you aren’t able to speak for long, or if you need to leave early. It doesn’t matter if you can’t talk to everyone, and in my experience of funerals, the most “socialising”’ happens after the service itself.

I’m sure you will already be prepared for the flare-up continuing after the funeral itself, so make sure in advance that you have all that you need at home to get you through (online food shop etc). You will probably feel mentally, physically and socially drained, so that is the time you can really concentrate on your wellbeing and self-care.

Surround yourself with people who understand, and be very gentle with yourself. Remind yourself that this will pass, but allow yourself to grieve, as it is a big part of the healing process.

I wish you all the very best at this difficult time.

[bookworm_14 in reply to Alienbunnies]

Hi i realise my reply is late but I just wanted to say thank you for your message. I did read this and it did help me x Hoping you are well and wishing you all the best too

[Alienbunnies in reply to bookworm_14]

You are very welcome. I hope you are doing ok.

We are doing ok. It is my daughter who has FND, and I think the hardest thing is accepting that life now needs to be looked upon in a very different way. I’ve been doing a lot of reading lately about healing the mind and body, and as her carer, I can see that she is starting to understand that in order to get better she must let go of all those dreams and plans she was so desperately working for to the point where her body said “no“.

We had a very in-depth discussion about how FND has affected her life, and she talked very calmly and deeply about it for the first time ever. (it is usually a very tense subject.). It was after that conversation that I realised that her chronic fatigue is very slightly better, her walking gait has changed a little, and when her voice goes it doesn’t last for days anymore. I think it is extremely difficult to notice micro progress, as my daughter doesn’t think she has improved at all.

[Hidden]

Hi , I read your post the other day and I replied to it i've been thinking about you and how you got on at the funeral I hope it ' was'nt to stressful for you.My head is gone right now I had 2 people in my house for 40 minutes and the constant talking has made me totally drained.I couldn't think straight, my mind went blank and nothing would come out it's a horrible feeling.I hope you don't mind me asking,did you manage to stay to talk to people or did you have to leave.Take care.