Ongoing problems

[haverfordwest]

Hi everyone, I had thought I was improving, and I suppose lockdown and it's enforced isolations and self distancing has fooled a lot of us. I struggle with noise, shop lighting, conversation and movement around me, and the headaches brought on by them. I had a hospital appointment and felt good going in, but whilst waiting there were a few different conversations around with various nurses, and others passing. For some reason I was not seen at my appointed time and was left waiting, not long, but long enough for the lights and chatter to get to me, so when they actually realised that I hadn't been seen i just started crying. I felt really silly but it was all getting to me, I tried covering my ears which did help, so while I was waiting for the next part of the appointment I was moved to a quieter area and that was much better. The trouble is I look as I used to, and I'm sure people think there is nothing wrong now, they don't see the hidden problems. I know I'm not alone in these problems, it is just the fact of lockdown easing and things starting to return to normal has made me realise that I am not actually as far advanced in returning to my old self, maybe I'll never get there, but it feels like I've taken a few steps backwards. Hope everyone is coping with all the changes happening.

[cat3]

I think Covid has knocked the confidence of many of us. I've actually been ok with lockdown as I'm naturally introverted since my Bi, but the easing up of restrictions brings a whole new wave of expectations and reminders of our various intolerances and inadequacies.

I can reach boiling point in waiting rooms with the lighting, all the different sounds and the chatter. I've had to leave on occasions where it's been cramped and the waiting has seemed unreasonably long. So now I use wax earplugs which cut out noise completely but which can be adjusted for when a nurse appears to call out the name of the next patient.

You're definitely in good company with these issues m'love. I have to go to Argos soon to collect a toy I ordered for my niece's birthday and, being Saturday, there'll be a fair old queue....... wish me luck ! 🥴

Take care Haverfordwest.... x

[haverfordwest in reply to cat3]

Thanks for your reply, like you I have been ok during lockdown and had got used to less people and traffic around, life in general has been quiet. My own shopping is done online, much easier, but I have to take someone shopping and that I find a real struggle, with noise, choice, and just trying to converse whilst avoiding everyone and their trolleys. I'm sure I don't need to tell you all this, obvious problems to us but others are oblivious to them as they are not visible. I hope Argos is a quick and stress free visit for you.

[cat3 in reply to haverfordwest]

Quick & easy at Argos thank goodness ; and a bonus that the toy was good quality and more impressive than on the listing. 😑

Could the person you take shopping not have home delivery too ? It seems a shame when you have your own needs sorted still having to brave something you struggle so much with.

I do a supermarket shop (with mask, gel etc.,) once every 10 days or so and it's done as quickly as possible with no divergence from essential groceries.

I think the whole Covid issue has put folk like us on the back foot m'love so please don't feel you're on a downward trajectory. I feel like I'm sleepwalking through life at present and becoming more forgetful, less adept at simple tasks and increasingly annoyed with myself ! We're living through unprecedented times, and stress has knock-on effects of many different types. 🤔

Thank god we have each other here ! Love Cat x

[haverfordwest in reply to cat3]

Glad Argos successful. No joy with home delivery for my shopper, we have tried that but she likes to get her own items and it is a trip out for her as she doesn't see many people. At this time I just think "it could be worse" and that is the way I approach everything now. Thankfully the gym has reopened here and I am able to book in, but have realised how unfit I am after a few months of being idle. We'll get through it I know. Take care. x

[sospan]

Of the many things the medical teams never explain, is that the "recovery" will be like a roller coaster. You feeling like your recovery is on the up and then suddenly you plummet downwards.

This one of those points, where you take a deep breath, reset and move forward.

When my grandson had his 8th birthday, we hired a local hall, bouncy castle, ball pit etc and around 30 kids turned up. It was like hell on earth and retreated to the kitchen area. I recall being beratted by my wife because I wouldn't leave the room and "enjoy" the party.

When I explain to people what it was like in the early stages (first 3-4 years) it was like living with the worst hang over ever! Noise, bright lights, commotion, you just want be left alone in a quiet, dark place.

One thing, that turned it around for me was making my own noise. Oddly when I resumed doing lots of DIY and Building work, I started using more and more power tools and then realised that I was making more noise - high/low, pounding and repeating than I had experienced when I was out in public. Whether, I had become accustomed to it or had somehow resolved the issue internally, I don't know, but it reduced my sensitivity.

Once you are on the rollercoaster it is quite a long ride - so make sure you buckle up !

[haverfordwest in reply to sospan]

Exactly, every morning feels like a hangover, I had thought there was improvement, but it's returned with a vengeance lately,I don't know if it is because I am trying to do more. I can't spend my time doing nothing I have to move on, but when I do just everyday things the headache starts. Coming up to 2 years now and I am feeling better but it is such a slow process. I completely understand what you say about noise, sometimes my brain just seems to be working overtime and skipping from one thing to another,like a pinball machine. If I am in the car I turn on certain music and it seems to stop. I don't like groups as I cannot concentrate on one thing I seem to be hearing all speech around, I'm sure people think I'm being rude when I walk off, but it's just to much and there is no point explaining they do not understand. I'm quite happy being "Billy no mates" at the moment. It's good to have this option to message others that understand and sometimes get solutions to ongoing problems. Thanks.

[sospan in reply to haverfordwest]

No problem,

Quite often they describe Head injuries as a "lonely inury" for many reasons;

- few people understand what the head injury survivor is going through

- We end up losing contact and ruin relationships with friends, family and quite often partners

- We prefer solitude and limited noise

I spent a long, long time following bad advice from a GP whom just suggested sitting down and doing very little ! Once I worked out what I needed to do, it must be about 4 years, until I was more reliable in what I was doing.

Now over 8 years later, I still have days when my fluency in Jibberish overtake my command in English and my reading and typing becomes so erratic.

[haverfordwest in reply to sospan]

Ha ha, that did make me laugh, as only a fellow head injury sufferer can. Quite often someone will say something and they may as well have spoken Klingon, cos I haven't understood a word of it, the same with the tv. Spelling and word finding a major problem too, and I feel as if I am about to explode when I get "my memories bad too it's age you know" Well I beg too differ, I may be getting on a bit but my spelling, hearing, mental arithmatic, memory, understanding of written and said instructions etc etc, did not change overnight due to age!!!!! Because I can still hold a semi decent conversation people think I am fine. I feel as if I am constantly swimming against the tide, and my brain only running at 60%, everything seems a struggle. Before nothing would bother me but now I don't have much patience at all. I have started reading again, which I love, but struggle to remember the jist of the story. Good for tv I can watch a film more than once now! Anyway enough complaining, have a good Bank Holiday tomorrow.

[Misty4]

Don’t have noise and lights problem but do have problems with understanding written words, spelling and memory issues. Trouble is at 68 friends say “oh we all forget things at our age” gggrrrr

[haverfordwest in reply to Misty4]

So so true, and so annoying.