Ouch Too

Forum => Talk => Topic started by: ditchdwellers on 11 Jul 2021 02:39PM

Title: My First Social Event Since Shielding!
Post by: ditchdwellers on 11 Jul 2021 02:39PM
Well, I have managed my first social get together with friends since I stopped shielding! 
Yesterday was a friends ruby wedding anniversary and they had a garden party in their lovely garden, complete with gazebos for rain protection, as the weather this past week has been horrendous here. Fortunately, apart from a little rain at the beginning of the afternoon, the weather cleared up to a lovely blue sky. 

I had been a bit anxious about going out and seeing so many people all at once, as there were a lot of family there that I didn't know. However, most were of a certain age and most likely double jabbed, and once I had plonker myself in a chair, I didn't really move so didn't get close to anyone! Our friends sat in a circle with us, and it was so good to catch up. Some of them I haven't seen for two years or so due to ill health and shielding, so we had so much to catch up on. 

Then I had that all too familiar feeling of an impending sleep attack coming on, which meant that my stimulants had worn off, and if I didn't lay down soon I would start hallucinating and talking gibberish. This is a major emergency for me and I need to get to bed urgently when this happens. I kicked my husband who then saw that I couldn't stop yawning, I apologised profusely to everyone and tried to explain that it's a neurological condition and I wasn't bored, but my meds had worn off. I tried to laugh it off and said that I'm no longer the all night stop out that I used to be when we were younger, and just ended up feeling embarrassed when I looked at these concerned faces and people whispering things to my husband. My disabilities can make me feel self conscious at the best of times, and now my messed up brain likes to join in the fun and games too! 

Anyway, I'm still quite proud of myself for getting dressed up and going out, meeting other people, and tackling my first social engagement. I just kind of wish I didn't feel like I have to explain my need to leave early or apologise for being ill. That's definitely something I need to work on.
Title: Re: My First Social Event Since Shielding!
Post by: Sunny Clouds on 11 Jul 2021 03:35PM
I'm really glad you were able to go and that you got to chat.

Personally, I have a couple of overlapping problems - firstly, my social skills could do with improving, and secondly, I apologise too much.  Sorry, sorry, sorry.

With the manic depression, to give an example of how I've addressed the 'what to say' issue, I've explored ways of answering the bog-standard "How are you?" type question, which often leaves me struggling to know whether it's simply phatic (social not literal) or whether it's asking for a genuine response.  In the end, I settled on phrases like "Better days, worse days" or light hearted stuff like "As mad as ever."  That puts the ball in their court to explore further or not.

I think phrases to leave with are things people need anyway and I'm at a loss with them because I'm so talkative, it's the other person that needs to find a way to escape from me (I usually tell people who don't know me well that I have a problem with that and please, please feel ok to end the conversation when they want).

Nevertheless, I wonder with your condition whether it would be worth exploring saying things up-front.  "I've taken my medication but the drowsiness can hit suddenly so don't worry if I leave early." 

I found with my ataxia that using jargon usually helped not made it worse except for one occasion when I said "It's not funny having ataxia" and someone thought I'd said "It's not fun having attacks" and thought I meant panic attacks.  (He was very kind.)  Mentions of 'my neurologist' also helped, as did mentions of medication being 'recently adjusted'.

But seriously, playing with ideas, what about this sort of approach (translated into your own wording because you know your conditions better than I do) "I think my [impressive-sounding technical jargon] is kicking in.  My [type of specialist, described in a way that makes it clear they're 'official NHS-type professional' not 'weirdo alternative therapist'] says I have to take care not to over-do it because when my medication wears off, it can do so very suddenly."

As usual, I'm exploring linguistic ideas to prompt possible options, not thinking I have a magic solution.  But what I am sure about is that you are most definitely not alone in feeling discomfiture over how to handle that situation when your disabilities affect you and how people react to it.
Title: Re: My First Social Event Since Shielding!
Post by: Fiz on 14 Jul 2021 06:14AM
Well done DD! I think Sunny's suggestion of saying something on arrival about how the medication meaning you are likely to need to make an earlier exit at some point with little notice is a good one. I'd be worried that I would offend someone by making my leave during a conversation at the point when I needed to leave, dreading the thought they may feel they were boring me or something but saying something early way before the point of leaving takes away that fear or would do for me and despite lacking in assertiveness, I think that is something that I would be able to do.  I'm so pleased that you had such a good time. 

I actually made it to church on Sunday for the first time in 16 months and my first visit to this church. It did cause a mental health mini crisis due to an extreme fatigue hit on returning home but I did actually enjoy church. I'm taking an extra steroid dose since Monday as Sunday was so bad and Monday and Tuesday were easier so I hope that this Sunday is easier. This Sunday coming is the last service where we aren't allowed to sing. I can't wait to sing! I should've gone to a pub on Sunday evening and sung my heart out for England maskless because that was okay to do but sing quietly with a mask on in church, Heaven forbid.  :f_doh:
Title: Re: My First Social Event Since Shielding!
Post by: ditchdwellers on 14 Jul 2021 12:57PM
Fiz, you summed up exactly how I ended up feeling! Yawning and barely being able to stay awake was definitely not a good look, and I did want the ground to open up and swallow me up sooo much. However, for some unfathomable reason, it just hadn't occurred to me that my meds would wear off before I got home! I guess it's because this is a newish condition for me and I've only been on the meds for about a year so I'm not yet used to socialising with this condition and managing the treatment. 
Dealing with multiple conditions can be a minefield can't it? And when dealing with a new condition on top of that can take some time to adjust to to.

Thank you both Sunny and Fiz for your suggestions for things to say in social settings. I shall bear these in mind for the future! 

I think the rules on what has been allowed and what hasn't been allowed regarding gatherings and singing etc have been so contradictory that they have just been ridiculous. Fiz, I'm happy for you that you made it to church and I hope you enjoy singing your heart out on Sunday. Have fun with it and no doubt the whole congregation will be singing joyfully too.

And to all those who have missed out on things that bring them joy, may you find a way back to those things.