Crashing

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Fiz

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Crashing

  • on: 13 Feb 2019 12:54PM
More and more I'm finding that if I have an event to deal with like family visiting here for a day or I go somewhere for a day or two or do anything physically and mentally challenging, that I completely 'crash' for a period of days and sleep for 18 hours, can barely get myself to the loo and my body feels like led and I can barely get out of it. I wondered if others do the same and how on earth you cope.

Last Friday was my daughter's graduation ceremony which I wouldn't have missed for the world. It took place about 70 miles away and I can't manage driving more than that without pain getting to me so I drove to my sisters on the Thursday. She's really good and let's me rest and fetches things and picks them up all without me asking and considering we've had an extremely difficult or virtually non-existant relationship all our lives, this is amazing. If one thing good has happened about my spinal problems it's that she's so sympathetic and helpful so it's totally changed our relationship! Every cloud and all that.

Friday I had to set my alarm for very early but anxiety woke me before that, put make up on carefully and as I only wear any rarely that took a while but unusually I was happy with it. Dressed, jewellery and then left to drive to the venue. Because it was rush hour the 30 minute drive took 60 but I found a disabled bay at the side/rear of the venue easily. The rear entrance was for VIP guests but I explained my pain and was immediately walked through from their to the front foyer and after 45 minutes managed to locate dd among the masses because I discovered after no response to my texts for half an hour there is no mobile phone reception in the venue so that wasn't easy. So at 9am I was with her in the foyer, not a chair in sight. All guests were supposed to be seated by 9.30 and the ceremony start at 10am. The people travelling from my home town to the graduation were extremely late which I knew they would be, they arrived at 10.15. No one late is allowed in and dd was refusing to attend the ceremony if they weren't there to see it so things were extremely stressed. Fortunately a lot of graduates didn't even reach the building until 9.30 then had to queue for their gowns and ridiculous hats and the queue snaked around the foyer so the ceremony started at 11am and we were there.

So from 8.30 until 10.30 I was standing in the foyer. Agony doesn't describe it. After the ceremony we queued for professional photos and took our own. The severely disabled child dd cared for professionally having known him from birth was there so he needed peg feeds before and after the ceremony and we gathered around his wheelchair while that was done. Dd had reserved a table at a 5* exclusive restaurant 10 minutes (normal) walk away but they only hold a table for 10 minutes because you need to book a table months in advance to get a table so they can't overrun and we were late so dd and the young lot ran to the restaurant, the 2 rellies walked normally and I can't walk more than slowly at most but had no idea where the restaurant was so had to keep people in view so again the pain was terrible. Managed main course then asked dd if she minded if I left and she said that was fine so I left and cried my way slowly to the car and got drenched as Friday was a washout. Cried for the 30 minutes to my sisters and sat on her stairs inside her door while she fetched my morphine and I took maximum dose.

My sister bless her was in charge of my dogs needs and my dog got daily walks there and I can't walk her so she loves trips to my sisters. Plus she loves my sister's spaniel they literally play all day! After the hour I managed to stand up and go upstairs and into bed. The next day a lie in while my dog was walked then I drove home, fed the dog then let her out for a bit then went to bed. I slept 18 of 20 of the next 24 hours. One morning I forget which my dog cried to go out at 7am but by body was like led and I couldn't move. I felt comatose as if there but not there, partly asleep. At 10am I finally managed to get up and let the dog out, she'd cried the 3 hours it took me to manage it. Today, Wednesday is the first day I've managed to get up and deal with the dog and made myself a cup of tea. I've only had water since returning home by my bed and haven't eaten or made myself a drink at all.

Yesterday a friend called so I did get up and watch a DVD with her and went back to bed as soon as she left. It's probably good she came because I might still be sleeping 18 hours out of 24 hours like since I got home.

This complete energy crash, complete and utter fatigue to the point it's sometimes impossible to get out of bed happens after every event in my life now. This was particularly bad because Friday was exhausting plus I drove both Thursday and Saturday but even my family coming here for 8 hours once a year can do this to me. I don't know whether it's caused by the pain or what. I'm not in pain lying in bed unable to move. I ran out of antidepressants but haven't the energy to drive to the chemist to get them so I've now missed 4 doses.

I really don't know how to manage events or any social thing. It feels so hard to get through at the time and then comes the crash for however many days, it's embarrassing. Except nobody knows about it. I'm embarrassed.

My foster Mum thinks I need a scooter but I explained with motability it's either or a car and not both. A scooter may get me to the shops and back but would get me nowhere else. I couldn't load a motorised wheelchair in or out of a car and I live on my own.

My spine is getting worse. I'm falling more as the messages at times aren't reaching my legs having left my brain. I feel as if I am physically and mentally disintegrated.

Sorry for the total utter whinge but if there are any pointers on how to manage crashes or anything else here I'll ponder any ideas.

Oh, I was SO proud of my dd, she looked amazing and I am really glad I went.

Edited to create more paragraph breaks. I've spotted spelling errors but have no energy to correct!
« Last Edit: 13 Feb 2019 01:02PM by Fiz »

Sunshine Meadows

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Re: Crashing

  • on: 13 Feb 2019 05:31PM
>bighugs< I will add more in a while

Congratulations to you and your daughter on her getting her degree. It is so much harder to do these days and I know you mention in the past that she has a career in mind so onward and upward  >star<

KizzyKazaer

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Re: Crashing

  • on: 13 Feb 2019 09:28PM
I'm not surprised you suffered for having to stand for 2 hours, that would test most able-bodied people.  The whole event, though a lovely occasion, sounds like more than I would have been able to even contemplate - but then, I'm not a mum (well done to your daughter, by the way).

You're not alone in having to 'pay' in fatigue etc as the price for any social occasion.  After a day out, I am definitely 'jaded' the next day and have to recover by not doing a lot.  If I miss my daily afternoon sleep, I know all about it.. though what you describe for yourself is obviously far more severe and all I can say is, take the rest you need to get your body and mind back to functioning again.  And try not to miss meals or become dehydrated, this will just mean the whole process becomes even longer.

What I am concerned about right now is you missing your anti-depressant doses - please either get yourself to the chemist somehow or ask your friend to collect your medication.  It really isn't worth you taking the risk of feeling any worse than you are already.

>edited to add
« Last Edit: 13 Feb 2019 09:30PM by KizzyKazaer »

Sunshine Meadows

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Re: Crashing

  • on: 14 Feb 2019 10:09AM
My physical limitations often lead to crashing especially on emotional days when I am expected to be able to manage unforeseen situations.

When I was a bridesmaid at my twin brother's wedding me and the other bridesmaids got left behind in the churchyard with a couple of groomsmen and I ended up having to lean on gravestones. When a car finally did arrive and I moved to walk I fell over onto my back with a thud. Then there was the wedding photos at the reception, the meal itself where I had been seated in a area that I could not exit once everyone was seated and eating. The only person I knew who was near me was my new sister in laws brother. I was very pleased for my brother and his knew wife and also for how people enjoyed the reception but much like you Fiz after I did the things I had to do I crashed. Huge pain in my eye and face worse than a migraine. Luckily my Mum's sister attended the wedding and had a room in the hotel so I had a bed to lay on as the pain screamed and my body switched my brain off. A similar thing happened at my oldest brother's wedding on the physical and emotional stress was all the day we arrive in Boston Lincs and the night before the wedding eg lack of food until my sister grabbed us some chips at about 11pm, lack of sleep and a aggressive atmosphere coming from my other sister's inability to cope. I ended up in my hotle room crying my eyes out because of the pain I was in and at missing my brothers wedding . it was like Sunshine failed again.

For me the crashing comes from the physical pain, emotional turmoil and feeling of being judged, and it is not as big as the crash you describe.  
I sometimes think I should paln more and make sure I know what is happening however that can scare me out of trying to do things. One of the reasons I invited friends I made since the move to the Midlands to the wedding is that they all know me as me and are not judgemental whereas my family can be or maybe I feel like they are going to be. I do regret not asking my twin brother's now ex wife her new partner my niece and nephew. Originally the wedding was going to be four people then it grew.

Fiz I hope you are feeling better today and have all the medication you need  >bighugs<

lankou

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Re: Crashing

  • on: 14 Feb 2019 10:26AM
More and more I'm finding that if I have an event to deal with like family visiting here for a day or I go somewhere for a day or two or do anything physically and mentally challenging, that I completely 'crash' for a period of days and sleep for 18 hours, can barely get myself to the loo and my body feels like led and I can barely get out of it. I wondered if others do the same and how on earth you cope.




That is why I live 320 miles away from my nearest relatives.

Fiz

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Re: Crashing

  • on: 14 Feb 2019 11:10AM
Aww lankou the annual family get together is my adult children and grandchildren. This last Christmas I paid for a meal at a local pub (2 meals for 10 type) which made a big difference to the length of the crash afterwards.

Sunshine, your experience sounds harder than mine with a fall on the day it's made me feel grateful that a fall wasn't added into the mix on my day. I guess there's nothing to be done but ride through the crash. I think if there is a future big event that lasts for than a few hours in one day I'll prepare by having some nakd bars or similar in my room so they're right there if I can find the energy to eat them. I literally had to force myself to eat a microwaved ready meal yesterday because I still couldn't face food after all that time.

I managed to pick up meds and took my first antidepressant this morning after a week's break. That may hit me a bit in a week or two. I have lost my sleeping 18 hours and am now struggling to sleep at night again so I guess physically my body has recovered as much as it is able.

When I stay at my sister's without a graduation I find it brilliant because she understands that I can do little and she has a walk in shower so I can get fully clean which I can't here until the DFG gets the bath removed so my shower can be in a wet room instead so that's lovely and I rest on the bed when she dog walks. My daughter wants me to go and stay with her around Easter for 3 days and I don't think she has the understanding of my limitations because it's not just the physical activity, it's the energy drain and fatigue.

I've no idea why it's escalated massively over the last year though it may not be a coincidence that my spinal nerves are more damaged. I've no idea whether that's a connection.

Fiz

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Re: Crashing

  • on: 26 Feb 2019 05:19AM
I went to a spa with a friend for 2 nights at the beginning of the week as it was running a 50% off deal and given that it's total relaxation there and my day was meant to be spent lying on a heated water bed in a relaxation room near the pool while reading a book I wondered if I would have a crash after the 48 hours. I was up far later than I normally am, not turning lights out till gone midnight and I never dozed off on the water beds in the day, unlike my overworked friend so there was some sleep deprivation involved though I didn't feel sleepy tired. I tried swimming but could only manage 4 lengths twice because it hurt my back which was useful to know because I had wondered whether swimming could be an achievable exercise and now I know it isn't.

I did crash again once home so even spending a 2 day break relaxing at a spa does it! The crash was only 36 hours though so much less than before. Whether it was the social interaction which I'm not used to I don't know.

The middle day, the whole day, was very stressful though as my daughter was admitted to hospital the day we left to go to the spa as she had a kidney stone wedged in the kidney tract, stuck. She was given morphine for the pain and anti-emetics IV. But overnight they transfered her to a urology ward as a bed became available and the care there was terrible. I spent most of the time between 9am and 5pm in the foyer of the spa, where you are allowed to use your phone, alternately phoning the ward staff then my daughter and back again. In hospital as a patient is where my daughter's autism is the most noticeable. She cannot bear the sensation of feeling sick let alone being sick so had been prescribed the anti-emetic cyclizine to have regularly IV.

So that morning she phoned me in tears saying the staff were refusing to give her the cyclizine that was written up 4 hourly prn on her drug chart, they'd given her a different anti-emetic orally which she threw up a couple of minutes later so she phoned me tearful and panicking. I phoned and spoke to the nurse who was in charge of her care to ask her to give my daughter the cyclizine she was written up for. The nurse said she'd discuss that on the ward. Later another upset phone call from my daughter saying they weren't giving it so I phoned the ward and spoke to the same nurse who said cyclizine can have side effects so they didn't want to give it to her. I explained she's totally acclimatised to cyclizine and has it IV with every admission with no side effects. At this point I also explained that she's autistic and nausea is a sensation she cannot bear. The nurse said she'd discuss this on the ward. An hour later my daughter phones still distressed saying they won't give it to her and she's constantly being sick. Another call to the ward where you are held in a phone queue each time. This time the ward sister answered the phone so I thought I'd try her and asked her if please could my daughter have the cyclizine that she is prescribed and on her drug chart. The ward sister told me it's against hospital policy to administer cyclizine on the hospital wards and it is only given in A&E. I said that a doctor had prescribed it and that it's on her ward drug chart and she said that the doctor shouldn't have prescribed it as it isn't allowed on the wards. So I phone my daughter to tell her this and she tells me that the patient in the bed beside her was being given cyclizine IV at that very moment. So another call to the ward and I speak to the nurse in charge of her care and when I said that cyclizine IV is obviously allowed on the wards as another patient was having it, she said that that patient was accustomed to IV cyclizine and tolerates it well so that's why she was allowed it (so the sister lied about it being against hospital policy to administer it IV on the hospital wards!) and I repeated to the nurse what I had said earlier, that my daughter always has cyclizine IV when in hospital as it is always effective and that she never gets side effects either. The nurse said they were going to try another drug IV. My daughter phones an hour later, still distressed, still being sick so I phone the ward again and speak to the nurse caring for my daughter and she said they'd drawn up ondanzetron to give her IV and that my daughter had informed them that she's allergic to it so they are in the process of drawing up cyclizing to give it to her IV. That was 5pm by then, having received the first phone call from my daughter, crying, at 9am. I was emotionally drained by then because it's so hard as a mother hearing your child so upset and it's instinct to try and get her needs met and it had been such a battle. So I lost a day of the relaxation and that may have contributed to me crashing after 2 days 'relaxing' at a spa.
« Last Edit: 26 Feb 2019 05:26AM by Fiz »

Fiz

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Re: Crashing

  • on: 08 Mar 2019 06:19AM
Unsurprisingly I crashed following my day in London on Wednesday. I managed to see my GP but couldn't muster the energy to wait for all the meds I need as 2 were missing and although I noticed and returned to the surgery the receptionist wouldn't disturb a doctor in between their patients to sign a script so told me to return to the chemist at the end of the day. Heart in stomach because I doubted I would manage to get myself out again. On getting home I lay on my bed to ease my Back pain and slept until 4.20pm. The gas engineer was due here at 2mp which I must have slept through. I'm feeling as sleepy today. There was a gas engineer due here at 2pm which is embarrassing yesterday but I heard nothing at all. I've let the dog out, now it's time rest sg

Sunshine Meadows

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Re: Crashing

  • on: 08 Mar 2019 10:45AM
Fiz,

i just reread your description of the Spa day crisis and it reminded me how much I miss my Mum. When I first started getting symptoms of Menieres Disease and TN I did not know what was happening so it could be quite scarey. At the time Mum lived fairly close by and I would end up over there laying on her bed feeling crap and sometimes in a horrendous amount of pain. I remember how just being near Mum would help me feel safe. Mum would make sure I ate something so a plate of roast chicken and toast would appear and I would eat it a bit at a time. As time went by Mum moved house and lived further away she also became much more disabled herself so crashing at Mum's place became a thing of the past. None of my siblings inherited the same type of unconditional care for a loved one that Mum had so it was not until I met Mr Sunshine that I discovered there are people who were different.

I hope your London trip was worthwhile and that it is easy to reschedule the gas engineer visit.

Sunshine Meadows

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Re: Crashing

  • on: 08 Mar 2019 11:41AM
Just over a week ago when we had that unusually warm and sunny unlike winter weather I spent several days in the garden. Sitting on a upturned bread crate painting individual planks of wood  so we could go on to use them to renew some of the fence between us and next door. The wood came in packs of 5 boards and I did try to keep to just doing on pack of wood and then leaving it for another day. However to do the sections of fence needed four planks of wood for each section so I ended up opening the second pack and was going to do eight planks. I was painting the edges and one side of each plank then leaving it to dry against the wall that I could reach without getting up. This meant I would knew I was going to run out of reachable space after eight planks. Mr Sunshine brought me a cup of coffee so I had a break and at same time he moved a few drying planks for me. I then painted three more planks so that was ten. I decided to go indoors for an hour and because I had been sitting in the same position for too long I could barely move and had to crawl. Its is weird how I choose not to listen to the message having to crawl gives me. I mean if an able bodied person had to crawl they would usually be badly injured or very drunk and so the notion of taking a break and then going back to painting would have seemed daft. Mr Sunshine made me some coffee and toast and I took some routine painkillers, anti Menieres medication as I watched some tv. For me there is something about doing a physical task like painting , gardening or trying to spring clean (lol unachieveable dream) that makes me feel normal, like I am living and not just alive. An hour or so later the good weather was still with us so I did some more painting. 

Over the next three days or so I meandered from one set of tasks to another. Relishing the fact I felt alive and was enjoying working outside. It is only now a I think about it that I consider the way it was taking me a lot longer to do what I was doing than could be considered reasonable. Thing is I was enjoying myself doing stuff Mr Sunshine did not consider a priority or want to do himself. He did help me enough to enable me to do things he was definitely and Enabler. I say that because much like an alcoholic or drug addict can be encouraged to think let the good times roll and consequences be damn, I was being helped to feel free and alive.

Yes I know it does sound daft after all how can a person be helped to feel alive when part of what they are doing involves a plastic bag and trowel for the dog poop. I am not sure anyone here is going to get what I am rambling on about. Thing was bey the end of the week the weather had reverted to its winter norm and by the second day, well actually second night I was majorly crashing. The pain was horrendous, the sort that makes a person think well if I die at least I wont exist as I am right now anymore. I was in a situation of huge regret for what I had done, not the gardening but the fact the bottled, water, painkillers and cereal bars were downstairs.  I was so ill that shouting for help was impossible. When that type of crashing happens a small part of me knows I am not dying that the pain and other symptoms will pass. That my sense of time and space will once again contract and a minute will no longer feel like an hour.  I got little sleep and the next day was similar to the days I spent crashing at Mum's house when I was young only there was no roast chicken. 

Much like a night of blind drunkenness crashing can cause gaps in memory that mean while you know something really bad went on you don't have a linear memory of it. For me it can feel like someone else was suffering and that I am empathising with their experience and not that the experience was my own. I guess it is a matter of survival, or maybe a matter of joy.  For me good days when the sun shines are so few that I am glad of my childish attitude of just doing what comes naturally.

Fiz

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Re: Crashing

  • on: 09 Mar 2019 09:49AM
That sounds really hard sunshine. But a massive well done for all that you managed to do physically. I hope that you feel what you achieved to have been worth the crash.

I'm still completely wiped. There's no way I can get dressed and get myself to the chemist for my missing meds so I will have to miss a few doses.

Sunshine Meadows

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Re: Crashing

  • on: 09 Mar 2019 10:16AM
Yes definitely worth  the crashing. The change in the weather meant the migraine type pain that does turn into migraines was much reduced and with the dry warm fresh air went away so it felt like a green light was on. I was aware it would not last so it was like trying to outrun a oncoming storm. Today I can still feel how good it felt to be doing some painting etc and know I have to be careful not to feel sad about not being able to live like thaat all the time because it will help nothing.

Sorry that you are still so debilitated. When Mr Sunshine broke his ankle we started getting prescriptions filled and delivered by our local pharmacy is that something you could do to avoid missing meds in the future?

Fiz

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Re: Crashing

  • on: 13 Mar 2019 08:43AM
The pharmacies now charge over 90 per quarter which covers however many deliveries you need but it puts it out of my reach. It's a government charge. The government used to fund the chemist's deliveries and now they don't so it's now patient funded.

Today I feel a little better. I've been feeling down about more nerve damage symptoms. More frequent falls fortunately all so far have been in my home plus more night time enuresis which I don't cope with emotionally at all. And yet I know others cope with it fine so feel a right wuss for getting upset about it. I worry with my spine damage worsening where I will end up.

I've managed to purchase a tempur sheet for my bottom sheet it's breathable cotton to maintain body temperature with a waterproof layer base. Once it arrived I realised I really need two to use one while the other is washed and dried but it wasn't cheap so that'll be another day.

I'm hoping to be getting up and get things done today but I'm low and tearful so we'll see. Facebook tells me that my son and dil are flying to Marakesh today for a holiday. Thank goodness for Facebook or else I'd know nothing!