Think I am back

[paxo05]

Well been to play boccia ( pne day I will find out how to spell it ) and actually played a game. Just to make me feel I was back to my old form I even lost as well. Yep definatley back on form. Looking forward to Headway coffee morning tommorrow. Although youngest daughter as offered to take me as she will be driving from tommorow eeeeekkk. If I survive this I am due to go on holiday on thursday so trying to keep calm as I tend to panic at airports. Dont get on with big open spaces to much noise around . But hey until I find another way of getting on a plane I will keep on freaking out at airports. Starting to get over nervous but trying to keep calm is a strange feeling to deal with. If I dont post before I go I will let you know how I get on when I return.....now wheres my bucket and spade gone??????

[Hidden]

I'm nervous about EVERYTHING now including noises outside = think it's somebody coming to smash my door in or bailiffs to take my stuff. Feel SO scared and totally insecure where I live plus NO healthcare. Felt like I've been under attack for YEARS.

Sick of saying I'm sick of arguing and can't even do it now coz BROKEN. And I go into shock, had too many now = will never get back to how I was? VERY scary. How can I EVER feel safe again?

Ahh, she said, go to psych ward, there THEY take responsibility = NO they don't = everything's WORSE after: food gone off, place broken into, people nosing around, bills not paid, can't have own clothes, bed or food or QUIET or CHOICE. Plus force-fed drugs and bad food at bad times = AWFUL. And no net or my letters or phone calls = cut off = HELL. Haven't got over it AT ALL, damaged me MORE.

Was ready a while ago to argue with psych but now no appointments and TERRIFIED coz you CAN'T argue with them coz they just say (their trump card) ahh you have no INSIGHT into your illness so we MUST force-drug you. And if you kick up a fuss they're allowed to 'restrain' you. No choice, the rules, for law and oder doncha know.

And too broken to try escape, too old and nowhere to go. And then you get ARRESTED. all without help or protection BEFORE. And they don't count what all this COSTS: police, magistrates, lawyers (too late and IF you're 'lucky'), hospital/staff/building fees. The drugs? some VERY cheap = shuts us up. Others apparently EXPENSIVE = worth it for keeping the peace' = hiding people's behaviour away from the norms? Are we all OK with this???

So if I disappear (I'm TERRIFIED), it's coz I've fallen on the stairs or ladder or chair (to high cupboards) and cracked my head in. Or else I've been snatched/tricked into accepting 'care' and 'help'. Coz then they can MAKE me shut up and maybe oops, a little accident in there...

Or driven NUTS by the noise, pain,overload and drugs and NOTHING to do and RULES. Behave OR ELSE we'll ECT/drug you.

Sorry, off-track: flying and airports: hate flying but do when must. So many BAD things: other people's germs, not enough oxygen, can't move and dehydrated = venous thrombosis. Plastic food, jammed in like sardines = never again and dunno what MY risks are = in brain+? Plus I get VERY claustrophobic, LOVE boats and fresh air and driving but planes? Not really. Lying down and nice food = better, my foot/back+ now.

airports = utter NIGHTMARE: echoing, LOADS noise/movement, LONG wait and often no chairs and bag in can't put foot up.If must lie = like waiting in A&E recently = lie on the floor! I'm better flat, need foot/feet UP. But still hurt. Then airport DELAYS, cancellations... Nightmare but not as much as the one I LIVE in: cut off, excluded, outcast, unwanted. Muddled-no-friends. It was never like this before.

But a cruise? dunno.Can't stop when I/you want. All set out, timetables.., and Titanic...

I just want to stay put and SETTLE, not travel til SETTLED, but can't. So much I want to see/do but get SO tired. Loved exploring and adventures but too ill/broken now. And need person to do plants, mail and keep eye on place coz now I WORRY about EVERYTHING. Hate how I am. I'm SO different from how I was, I miss ME.

[randomphantoms]

Hi paxo and muddled.

By the way thank you muddled for putting paragraphs in...it makes it easier to compute.

I may be way off the mark here but I think we share something.

When I started to get words back I described what was happening to me as sensory overload. I was seeing and hearing everything and the brain just couldn't process it all. This caused big backlogs and much pain.

I have learned that there are some things I don't need to see or hear.

The way I deal with it (and it helps if you don't mind looking like a bit of a prat) is what I like to call putting the budgie to bed. This means blackout and earplugs. Ii now carry an eye mask and earplugs with me all the time and give myself time out even covering my head with my coat. It helps a bit.

That and the meds for neurological pain are the best I can do and plenty of planning.

Wishing you both all the best.

[Hidden in reply to randomphantoms]

randomphantoms: some kind person taught me (again) to do paragraphs! thanks them.

You say 'sensory overload' = yes but I couldn't describe it properly for AGES = didn't have the words and early on couldn't even think that was part of it. Took AGES to realise and I expect I read stuff that gave me the words and the OK to try explain it.

I talked about different bits of me, I never joined them all up. Coz we don't! Coz pre-ABI never have to think about ANY of it.

I talked about my vision, swallowing/eating, walking, not sleeping, what else? Too tired now. LOADS but never said sensory overload. And I know I'm worse since fever 2012 (not long back in UK, can't remember dates?) when very ill after FREEZING night (funny? nope) in mobile home and no food and too tired/cold to go ask about heating, or was it the ferry? No idea but SO ill.

I head back home when like that: need to be FLAT and comfy. Coz early on only just made it home sometimes before COLLAPSE, like after washing up at start. Outside nowhere is private or comfy.

[RecoveringH]

Hi all,

Early on when I did not have executive function (forgot all my knowledge), sensory overload meant sitting for days in a darkened room moving to darkened kitchen to bed! Was living in noisy flats which was making me much more ill than I needed to be. No ability to rest, relax, not just sleep but the healing knock out sleep, head hits pillow wake 12-16 hours later type which I find is the only kind I get progress with.

Any waking up during sleep is not proper sleep and I would do anything to get proper sleep. Hot water bottle, heavy blankets, exercise before sleep to sweating level, natural sleeping pills, chamomile and sandalwood essential oils on wrists and neck. I found this formula but until I accepted I had to let go of working, that is when I really started to sleep and...get progress in the brain and body coordination and nerves area.

My one piece of advice to you all experiencing extreme fear where part of you knows its irrational but you feel it anyway, I believe my body was deficient in vitamin B. I took "Ultra neurorecovery" by American Biologics as recommended by doc, three per day, one with each meal. I believe as your body starts to heal, the nerves are raw, newly grown as it were. They need some support! To calm and be relaxed. Along with fish oil to line the myelin sheath around the rebuilt nerves.

Get a blood test for anaemia. When I started to heal, I needed double the amount of iron to make all the fixing and amendments work and stay. I took iron which helped to support the body. I took lots of other supplements for different stages, mail me if you are interested.

Simply the body knows at what stage its at, it knows what it can handle in terms of processing information. Of course it prefers minimum interference while re-building brain networks. But it can sustain minimal complex days too like airport trips. Headphones are good! Focusing on healing just one thing at a time helped me.

I am an aromatherapist. Eventually as I got better, I remembered I could treat myself with oils. I would have written this information here but I thought for someone who is a beginner, using them incorrectly might cause more problems. There are very effective oils for panic, sleep, relaxing, deeper breathing, blood circulation which are the basis of modern perfumes, medicines and gels. If you are interested mail me. I don't practice anymore so I'm not selling a business. Having said all that, I lost my ability to smell (and taste) for a while, so despite knowing which oils to use for what, I could only smell the stronger ones!

I just read earlier today that if there was a bacteria present, it might make my veins leaky which might be why blood pressure drops and I got cold hands and feet which on the occasional day I still get now, wear 3 woollen layers under two duvets with woolly hat and hot water bottle on feet. Takes 20 mins but finally I get goose bumps up the back as if the body has evened out in blood flow / pressure and I feel warm again, all over including hands and feet. Body does not do it manually without hot water bottle on feet, I have tried! Look up Raynaud's.

Paxo - Have a good relaxing holiday.

Randomphantoms - Agreed, coat over head on plane worked a treat for me!

Muddled - Plenty of friends online here, I miss the old me too. Gardening helps.

Best

[Matt2584]

Hi Pax,

You actually spelled boccia correctly. It sounds more like 'botcha' but is not spelled like that though.

I will be playing boccia tomorrow, it is a pretty competetive sport and there is certainly banter involved within ou games :).

I would have been going to my local Headway meeting and volunteering too on Friday morning but can't as it is Good Friday.

Have a nice holiday, where are you off to?

Take care,

MJ

[paxo05 in reply to Matt2584]

Thanks matt. Our games get quite competative at times but the banter is even better. We are of to Alcudia in Mallorca ( they may or may not be the correct spelling). Looking forward to some warmer weather as I cant seem to get rid of aches and pains. Hope you are well.

[Matt2584 in reply to paxo05]

I am very well thanks :).

Majorca or Mallorca wold be the correct spelling. It always makes me think of the ellocution lesson "The wawta in Mejorka don't taste like what it awta".

Well I hope you find the warmer weather to ease your pains :).

As for me, I'm not a fan of heat, I prefer to be cold rather than hot. Speaking of the temps though, I would have thought the weather should be warmer this time of year.