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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To just feel lost?

36 replies

Livingtothefull · 12/04/2020 11:45

I woke up this morning to find out from worried DH I had had a seizure, there was blood all over my pillow.

I realised my memory was gone, couldn't remember what day it was or what I was doing yesterday. It is only starting to come back to me now.

I am susceptible to these unfortunately and it has happened before, it may happen once a year at most. I feel so disorientated and lost. I am not going to get checked out medically as there is no point and in the current situation I don't want to take up their time.

I know this condition is aggravated by stress. Obviously the situation we are all in doesn't help.....I am working from home and looking after my DS with severe disabilities, he is climbing the walls as he is unable to go out. Of course we can't get carers as usual.

I don't know why I am posting here really as there is nothing to be done, just want to offload. I feel panicky and disorientated still, my DS is rampaging around even more than usual as he knows something is wrong.

OP posts:
Livingtothefull · 12/04/2020 13:19

It is usual for me to have memory loss...the last time this happened I was in the bank and was asked for my account number, I couldn't remember it. I have had the same account since I was 18 and am in my 50s now. All of a sudden info in my head I took for granted, wasn't there (it did come back eventually though & I know it now).

I am in 2 minds now about whether to get checked out as I do feel rather poorly, am waiting to see if it improves & I don't want to bother health services right now unless I really have to.

OP posts:
WeBuiltCisCityOnSeeingSouls · 12/04/2020 13:21

What do your medical team advise re management, have they given you a care plan/say whether you should ring for future seizures or have a management plan eg upping meds? I would, with the best will in the world, follow their advice rather than Mners.

If stress is a factor, is there anywhere you could minimise this at the time (I know easy to say, not to do). Can your DH give you some proper alone time, are you allowed to leave the house for solo exercise/fresh air? Is there anything you can do re work, do you think it's worth speaking to your GP if you feel you need time off, perhaps medical/sickness reasons rather than using your annual leave.

Sympathies re the tongue, that's a fucker at any time but especially on Easter egg day!

Can you get some proper sleep today to help you recover?

Re the memory loss, I absolutely hate this. One thing that has really helped me is writing a daily diary/taking photos of anything out of the ordinary routine/the DC and when I look back at them if I have had a seizure and feel a bit blank, it helps me feel a bit more grounded. I also read my text messages from the day before. I realise that probably sounds stupid Blush but it's so disorientating and things like that seem to "bring it back".

I hope you feel better soon.

Livingtothefull · 12/04/2020 14:04

Thanks all, I have had some lunch & feel a bit better now. That is good advice WeBuilt, I have looked at what I did yesterday & my memory is gradually coming back.

I have read elsewhere that someone has been waiting on 111 for over an hour now, don't feel I can face that. But I think I will call my GP for advice tomorrow.

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Livingtothefull · 18/04/2020 22:51

I tried calling the non-emergency number a few times, waited and waited then gave up.

I just feel panicky....am trying to do my job whilst trying to care for my DS who, darling that he is, is high maintenance. I am really trying to do two jobs and in truth can't do either of them properly. It is making me panicky now thinking about Monday. I am short changing DS and being a fraud at work.

So much rests on my shoulders though; I am scared of what I may hear if I take advice. I am really sorry that so many of you think IABU but standing in my shoes would be something else.

If I don't cope then we go under; we lose our home, everything we have worked for. What do you propose I do?

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WeBuiltCisCityOnSeeingSouls · 19/04/2020 12:02

I don't think you are BU, well if you are it's totally understandable.

I actually think that if you seek advice, you may actually be reassured in that (hopefully?) you have recovered and not had another seizure. I would ring your GP rather than 111, mine has asked me to ring them directly for anything unless it is CV related, which is 111. Are you under the care of an epilepsy team - mine have a helpline you can ring for things like this.

My consultant/GP would probably advise me if meds need tweaking, to monitor it myself rather than go in if I had recovered but they would also ask about possible triggers and how I could reduce them.

Re this, I totally understand the fear. I was the sole wage earner in my house when I became ill (not just epilepsy, mine is part of a syndrome, adult onset) and I did lose my career eventually (not my decision which made it worse) and we had to make a lot of changes. At the time, I will be honest, it was very very hard indeed not just for me but the guilt I felt about putting all that on my family.

However! A few years later I can see that it was actually the best thing that happened and I should have done it myself before it was forced upon me. The financial implications were big and our lifestyle has changed. But we all actually have far less stress and fear and while my health won't improve, how I deal with it is easier.

Perhaps if you take it more short term though and speak to your GP, see what they advise. If you know yourself you aren't keeping the plates spinning, some time out (off work, obviously you can't have time off from DC) will help you lots and might actually prevent long term implications. If you think of it like that would it be easier?

The only other thing I can think of is that when I actually lost my job, I said to my MD I still felt guilty about all the times I let them down and missed meetings etc, and they said they only remembered the times I did manage to work despite everything. I saw it completely differently then, and to be honest I thought I was a bit of a twat for struggling on as long as I did Blush

I also thought if I had taken the time I needed rather than struggling on it would have been a lot easier and I might have been able to change things gradually if I needed to. Don't be like me WinkGrin

It's so easy to say "well nothing matters more than your health, not even finances and houses" but when you're in the thick of it you think "well that's bollocks as I have to feed and house my family". But actually it is true! Perhaps if your GP and you agree you need a break from work (especially under the current circumstances) you will feel you are doing the long term responsible thing to help you (and your employers and family) in the future.

With a break you may actually reduce the guilt you feel at the moment rather than feel more guilt. It might be worth a try?

Sorry this is really long! I really feel for you and hope it gets easier for you soon.

Livingtothefull · 19/04/2020 22:45

Thank you so much WeBuiltCisCity...don't know what else to say now except I will read your response carefully. I don't want to spread myself so thinly that I am no good anywhere.....I worked hard at my career and am loath to give all that up. But I am no slouch at being a mother either & it is not easy. Job...motherhood....I don't want to admit to doing either task badly,

At the moment I am sitting up here as I frequently do of an evening, fretting and worrying about the day before me tomorrow. And drinking too. All the worst things I could be doing, I do. I am nobody's role model, certainly not my own.

There are many people suffering right now, I am just another one. Suffering doesn't make me special. My poor baby boy went to bed early this evening...not like him at all so of course I worry. He only has to clear his throat for me to ask myself 'Is that it? Has he succumbed?'

OP posts:
WeBuiltCisCityOnSeeingSouls · 20/04/2020 17:49

I hope you feel a bit better @Livingtothefull. It's so hard isn't it. I think the current situation sort of magnifies any worries/problems we have and makes them worse, especially when there is such a feeling of being in limbo. It's so hard to make decisions.

I meant to ask if your DH is supportive, or how much RL support you have? I am the worst for "not wanting to complain" and knowing that other people do have it much worse so don't want to complain but I actually think I should complain a lot more and I would feel better Wink there is nothing wrong with saying you're having a shit time and you're struggling, it's not that you're doing anything badly it's that circumstances are shit, not you (if that makes sense).

Can you talk to anyone honestly and openly in RL?

PS Feel free not to listen to me, I am currently sitting in the fucking freezing garden drinking cider (I never drink normally!) wearing giant sunglasses and a warm blanket feeling extremely sorry for myself Blush I am sick of listening to my own thoughts really. So I'm good at giving advice but not taking it!

WeBuiltCisCityOnSeeingSouls · 20/04/2020 17:51

And yes to the cough worries! I am shielding but DH can't be furloughed as an essential worker, every time he (or the DC) takes a deeper breath than normal (let alone coughs) I'm holding my own fucking breath! It's so tiring, isn't it.

Are you getting enough sleep? (Hollow laugh at giving advice yet again...BlushGrin

Dylaninthemovies1 · 20/04/2020 18:17

Yabvu not to get this checked out OP

Livingtothefull · 21/04/2020 21:49

I think the current situation takes its toll on us more than we even know. Yes I live in terror of my DC getting ill...but we are all scared for our DC I am not alone.

Yes it is probable that IABU in not getting myself checked out...but I would feel bad about contacting the health authorities about this when I know what it is, I don't feel that they can do anything for me that hasn't already been done.

I don't think there is any one IRL I can talk to. Apart from DH who is a superlative father to DS, no complaints at all on that score. But I do feel the need to support him in being a great father, rather than leech of him.

The trouble is that everyone IRL is burdened in their own way and I don't want to make it harder for them. I feel that I am the strong one, I am the rock that others should be able to lean on rather than vice versa.

That sounds boastful...I don't mean it to be, I just feel that I should continue to cope and have no business imposing on others when I know I am able to cope albeit grudgingly. Everyone has their limits, I haven't reached mine however hard I am finding this. It is my station to try to inspire others rather than demand emotional support; I just wish I were better at the former though.

DS is better this morning so I think he is OK, for now that is enough to make me happy.

OP posts:
Livingtothefull · 21/04/2020 23:31

I do feel that we - families with DC with special needs - have been completely forgotten about in the current situation. My poor baby boy has been left high and dry.

It is up to the government to ensure that we are cared for and they have failed. And that is assuming that they acknowledged that there was a duty there in the first place for them to fail at.

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