Out of my mind with worry part 2

[YourRubyMaker]

for anyone who was on the original thread sorry it’s been a hectic few days . Intensive care was horrific he kept trying to wake up and pull his ventilator out his bp was unreal so they kept having to sedate him ,. Managed to get back onto the ward on Tuesday, weds a blur but yesterday was really positive he got his own wheelchair and managed some light physio,. Today we’ll back to shit really we had planned to leave the ward for the first time and have dinner in the onsite canteen he’s since been sick and his heads swollen,. Waiting to see if he’s gonna get an emergency scan or not , just feel like it’s a rollercoaster and as soon as you think you’re getting somewhere you don’t . Still waiting on biopsy results which won’t be until next week , toddler is so unsettled won’t leave dh alone which is making life really hard as I can’t leave ds but need to go do washing etc , it’s a nightmare

I hope you do try the beta blockers and antidepressants & find them helpful. They have honestly been life changing for me. I take the beta blockers only as needed, in very stressful situations. But having the antidepressants to combat day to day anxiety just raises my resilience. I was on them for PND and then went back on them after DS's diagnosis. I have tried life without them, but honestly, for me - it's far better on them.

we generally get a call within 48 hours or so with results (my son has 6 monthly mris for post meningitis hydrocephalus). Beta blockers are really good I found. I began by taking full dose 3 times a day then weaned down and just took them as and when I felt anxious. And unfortunately I’ve had to be totally caffeine free for a couple of years, even when I’m feeling good one coffee makes me feel dreadful

Honestly, for us, the duration varies. It's been 5 days for stable, it's been 2 MONTHS!! for growth (though the were v apologetic at how long this took) and everything in between. It also shows that unless it's something dramatic, no news doesn't mean good good news and vice versa. We've had a lot of staffing shortages and senior people off sick in my child's hospital though, which probably contributes.

Haven’t started the medication yet as dh is currently at urgent care as he’s been ill all weekend and 111 have sent him there so I don’t have the time to start them and feel drowsy etc and all the side effects with how they first make u feel as I’ve got the two kids on my own and no support system , what a bloody year so far !

Oh goodness. You poor thing. What a worrying time for you
Fingers crossed DH recovers quickly. One step at a time is all you can do.

@YourRubyMaker so sorry you’ve got yet another thing to deal with. If it helps, the beta blockers should take effect almost immediately and any side effects will be gone ads soon as the drug is out of your system. Only side effects, I had was dizziness (my BP is on the low-side) so I only take one when I know in not driving and I feel particularly ‘worked up’. They do help induce an almost instant feeling of (relative) calm.

Hi @YourRubyMaker I can’t believe the time you’re having. Hopefully your DH is getting much better now. keeping everything crossed for his speedy recovery 🙏🙏
How is your DS doing?
If you have anyone to lean on I hope you can ask for help - especially with meals and house jobs. Try to rest whenever your DC are resting if you can ❤️
Take care xx

I second trying to get some help. Is there a group/class chat or anywhere that you can reach out to? Even a couple of playdates/care days for the smaller DC so you can breathe. I'm sure there are people out there who want to help you but don't want to intrude my love. We have always done meal-rotas for anyone going through medical emergencies or difficult times - there are even 'meal-train' apps for it. I know it's hard to ask for help, but you need to be present and well and you can't keep absorbing on your own. Maybe speak to a teacher if that feels easier?

@YourRubyMaker I wanted to ask how you and your son are doing. I hope things are improving

He’s doing great I’m not at all , had suspected dvt and was put on blood thinners and they gave me awful side effects which I can’t seem to shake and gave me a 3 hr panic attack yesterday and now I cannot shake this panic feeling at all it’s so awful, typically I was just starting to turn the corner and feel better then this happened ☹️ my poor dh has had to have time off work and I’m worried he’s going to get into trouble

Panic attacks can be absolutely horrendous and you've been through an extremely difficult time. I found a book by Robert Leahy called The Worry Cure, helpful when I having a lot of anxiety. I developed health anxiety as a result of many things that happened and it helped me to get over it to some extent. Claire Weekes books are also great for anxiety. She teaches that you've got to face and go through /accept panic to come out the other side of it. This was probably a turning point for me in reducing my panic attacks.
Were you told anymore about the suspected dvt?
If your husband is self employed it's understandable that you're worried. If he's employed then I can't imagine he'd get into trouble given what you've all been through.
I'm really glad to hear your son is doing well. I was actually thinking about you and hoping things were going well for him.

Is it normal to feel so panicked still the day after a huge one ?im really hoping this will fade tomorrow , I’ve been to a and e and they just said it was side effects of the blood thinners and a panic attack on top , dtv has been ruled out thank god so no more blood thinners as they really did make me feel awful

It's good they've ruled that out. Yes it's normal to feel like that the next day, because you're exhausted, emotional and can end up living in dread of the next one. Panic attacks made me feel like everything was going to end in disaster. I might have been thinking about a symptom of an illness for a while, worrying, maybe forget about it for a bit and then maybe days later out of nowhere I'd have all sort of real symptoms. Full on panic and it made no difference where I was or who I was with. The only thing that helped me was accepting the panic and waiting as I went through it.

@YourRubyMakerI am so very glad to hear that your son is doing well, that’s amazing news.
Equally, I’m very sorry to hear that you’re going through such a rough time yourself. The panic attack is hardly surprising given what you’ve been through. I think you will definitely feel better once the drugs you were given are completely out of your system. I’ve had panic attacks and find that watching rubbish tv or something similar helps. It will pass, you have done brilliantly.

Blood thinners gave me terrible heart flutterings/ palpitations , and ectopic beats, which felt like panic/anxiety but which were very real physical symptoms that were entirely drug induced. But then these symptoms themselves set off feelings of anxiety which then induced panic attacks- it was like a vicious cycle! I had to stay on them for six months and it was awful but I felt so much better within days of coming off them. You have been through so much- actual panic attacks would be completely understandable! But add aggressive platelet medication on top and no wonder you feel dreadful! Sending you all heaps of love, and hang on in there.

I went to bed at 630 yesterday and still feel awful today.its been about 40 hours since the last dose of blood thinners so I really hoped I would feel much better by now . The dizziness has definitely subsided so that is good , I’m just so annoyed and frustrated as I really had turned a corner with the panic and this has made it much worse than it was before it is constant , feel like I’m just waiting for a attack constantly

How’s your son doing? Been a couple of weeks since your last update on him, hope his recover is going well.

I literally updated on him yesterday

With the greatest respect and understanding, the blood thinners will be well out of your system by now. That's why those who need them have to have a daily dose, to keep the levels up. I am sure your panicky feelings are ultra sensitive right now, and anything out of the ordinary, such as a suspected DVT and then blood thinners, is going to really throw you. I totally get that.

Have you tried the usual things for coping with panic attacks? Breathing exercises, meditation, Calm app on your phone, using all your senses (see 3 things, hear 3 things, touch 3 things, etc) something very simple and repetitive ( a friend of mine polishes all her shoes!), things like that?

Having had panic attacks in the past myself, I really sympathise, but I can absolutely promise you this won't be you forever. You will come out the other side.

OP what professional support are you accessing for the emotional trauma of what’s happened?x

Turns out it was what they suspect is labrythitis and I’ve been really ill with it for 3 weeks now 😫 struggling big time , been given antibiotics now and they’ve given me insomnia and I’m really struggling I just want a bloody break this year is horrific

Constant dizziness that’s all day and night and really severe

It’s like being on a swaying boat constantly , feel really ill with it too and it’s supposed to only be severe for 1-2 weeks but mines got worse and worse

Oh I'm so sorry you're suffering. I've had this after a particularly stressful time and it was awful. I did find that laying down made everything spin, but if I had one foot on the floor it sort of stabilised things. Slept with one foot out the bed on the floor for ages. (And woke up to it numb every morning but worth it!) Did they give you anything like cyclizine to help?

They gave me some motion sickness tablets but they made me feel horrible so didn’t stick with them and can’t have they more than a couple of days , it’s gone from one ear to the next now , I was put on clarithnyrycin and it did help but I couldn’t sleep and it was awful so told to stop and it got majorly worse over the next 5 days so been put back on them but I’m really struggling with not sleeping , how long did yours last ? I’m so stressed it’s not gonna go ☹️