Is anyone awake? I’m expecting bad news and I can’t sleep

[MyCake]

My dh is unwell and we have no idea what is wrong. We are getting scan results this morning but they were only to rule things out so probably not conclusive. However, I can’t see how this isn’t going to be something serious as he has declined so rapidly.

I feel sick. We’ve already lost most of his income through him being off work so I’m also worried sick about money. We have enough savings to manage another 2 months at the most.

My dc are already suffering, despite them
mot fully understanding how serious the symptoms are, as dh is pretty much housebound and I can’t physically drive them to all the clubs and places they need to go by myself.
I also work full time although thankfully I’m a teacher and break up this week.

My heart is broken just looking at him disappearing in front of me. The doctors are slow to take his symptoms seriously so sadly by the time he was sent to hospital he was already unable to work and very ill. It could of course be something very treatable but at the moment I feel suffocated with the fear of the worst case scenarios.
I am writing this as I’m lonely and scared and wondered if anyone is awake to say hello.

I have name changed in case anyone recognises me from this post. If you do, please don’t mention this as I am doing a great job of appearing strong on the outside.

I am a teacher but it’s only part of my role (it’s complicated and fairly niche so with all the dh details I don’t want to put myself too much!) But I do actually work from home sometimes and so it’s not always as full on as a full teaching day, although my role is quite demanding emotionally at times (although this week isn’t too bad).

I was very unwell (physically) a couple of years go and had to be off work for a term which is when I was depressed. My gp said it wasn’t clinical depression as such but circumstantial, however I was really down for a while even when I was phasing back to work. I love my job and I hadn’t realised how much hope, joy and purpose it gave me.
The thought of being off again is awful but they know about dh and are allowing me flexibility. Apart from the teaching and the meetings in school, my job can be flexible to some degree. I couldn’t definitely take time out if I needed it.

SSRIs don’t work for me at all. I tried them a couple of times years ago when I was anxious. I’m already on Venlafaxine (low dose) so I could maybe increase that. I take Elvanse for adhd which helps me anxiety and is the only thing that has ever helped.
I think I did mention I’d sadly had ptsd and I could definitely see the psychologist I saw for that again but money would be the issue. I’ve booked a couple of sessions and they might be enough.

I have been through a lot so I think whilst dh is definitely the big worry at the moment, in some ways it feels like just another huge fucking thing on top of the other things. I feel like I’ve been so resilient that I’ve got no resilience left. Also, dh is ‘my person’. When work is sad or hard I can just cry at him and he never asks the details. When I was unwell and worried I’d be housebound forever, he was so supportive.

I know I’m being supportive to him now and thankfully in a crisis I’m pretty solid and calm, due to my job and also my own experience, but I feel so bloody helpless. I feel selfish for worrying about money but it’s a real worry.

On a positive note my dc is so much better.

I think I’m ok. I’m very self aware and this morning I feel overwhelmed and tired rather than properly depressed but I’ll see how I go.
I am doing 2 school assemblies this morning which will be jolly!

I am worried because some of this is very outing and I rarely talk about my own struggles in real life. If anyone recognises this thread please don’t mention it to me.
One of my biggest fears is people assuming (wrongly) that I can’t do my job well enough or be a good mum because I have had my own challenges at times. It’s why I don’t let my guard down in real life and why this thread has been so cathartic for me.
But if you do identify me…… I am doing ok considering the circumstances and I will
be fine because I always am!

Just more OP.

Delete anything you are worried may be outing. I can sadly relate to a lot of what you are saying and going through, although wildly different circumstances. You will be fine, you have brilliant coping skills and are amazingly capable - that's clear to us.

So glad you have some flexibility at work, it can make all the difference. I totally get the battle of needing extra understanding but not wanting to reveal too much, so you can just stay focussed. It's a fine balance!

Do look into Carer’s Support- you may get the focussed outlet you need that you are getting here x

I don’t know you or recognise you @MyCake but if I did I would be in awe of this strong, powerful woman doing the very best she can in trying circumstances.

Have an in-Mumsnetty hug and 💐

More

I have battled with MH my whole life have CPTSD never found anti depressants helpful and realised last year whilst waiting for my ASD to be confirmed I have ADHD (DD diagnosed) - so I relate to the anxiety and all the extra pressures it brings and not wanting to be open because my experience of other people understanding is erm not good.

I wish you lots and lots of sleep and positive distraction as well as DH getting the treatment and care he needs

Thinking of you and hope you get some answers 😘💐

I am going to ring and chase up the results if we have not heard by the early afternoon.
My school assemblies were cheerful and it’s quite a nice day ahead at work. I am taking the afternoon off to be with dh which again school are really good about.

If I’m anxious this evening I have a lovely pile of marking to distract me!

Yep, nothing like the marking pile to focus the mind! I hope they call before you have to.

I’m sorry to hear you’re feeling so low. If it’s any consolation when the really dire things have happened in my life is not the time I’ve fallen into depression - I went into survival mode and stayed there - I don’t know if that’s of any help but I don’t think it’s a given that you will fall into it.

I hope things are ok today or at least you get some information.

Fingers crossed for you both.

We haven’t heard anything today but I rang up and left a message. The consultant has been on leave so we are not likely to hear anything for a few days. Dh has had a particularly dizzy and shit day today.

Thinking of you and hoping for news very soon

Offs. They know how pressing this is - why not brief another doctor if they’re going away.

@MyCake Please take care of yourself and if you need more help with your mental health (which would be completely understandable) then please talk to your doctor/consultant.

Do you have some friends you can chat to or see IRL? Might be something that might help a bit to keep your spirits up. x

I am so sorry that the waiting still continues. My thoughts are with you.

@OldFan I was meant to be seeing friends this week but I’ve cancelled everything. I feel so flat and tired I’ve barely spoken to anyone for days apart from my in my household and at work. I haven’t even been answering the phone as I’m too tired to speak.

I am going to see my previous psychologist next week and he’s brilliant. I’ll see how I feel after half term and might take a week off if I feel I need it.

I am seeing the GP about a really mundane issue next week too and will mention how flat I am. I have diagnosed chronic fatigue and it might just be that making me feel so low. When I was properly depressed it wasn’t for long and I don’t feel like that now. That was dark and hopeless. This is more overwhelmed/ broken. I’d happily increase the venlafaxine if he suggests it though as I am on a very low dose atm and it was prescribed for the chronic fatigue rather than depression.

ah @MyCake you're just worn out trying to hold all of this together while being so scared and angry and utterly bereft. It is no wonder. I am sending big hugs and to you again.

Pleased you have managed to get yourself the appointments for next week.

Maybe you could ring daily OH’s consultant and leave a message giving details of the last 24 hours on your husband’s further deterioration.
Thinking of you both. X

I think anyone would be anxious and down in your situation OP, I think it's an entirely reasonable and rational response and I think you're coping admirably, really.

Coping doesn't mean not struggling and not finding things hard, same as being brave doesn't. You're getting through this and it's a really shit time and I hope you get some help for dh soon and you feel a bit less alone with it all.

The consultant rang and spoke to both of us. Everything was clear and he has no idea what is wrong. He has ordered more tests and is seeing him in 2 weeks.
I am now convinced he’ll be diagnosed with something like FND where there is no proper treatment. Poor dh is only 41 and is completely incapacitated. My poor dc have an ill dad and a mum that has gone from jolly and fun to exhausted and miserable.

I am so fucking fed up. I can’t get hold of my GP today to see him but I am going to try again tomorrow and ask for him to increase my venlafaxine. I’ve cancelled all my plans for next week and I just want to sleep.

Oh gosh @MyCake you must be tearing your hair out.

Tests clear absolutely doesn't mean nothing is wrong but I know only too well the fear that it will be dismissed as FND or similar. Quite a number of people with my condition (myasthenia) face that battle for years because it doesn't always show up in test results- I am seronegative but thankfully it did show up when I had an EMG test, I remember the relief when it did! It's a horrible place to be, knowing there is something physically very wrong but lacking the "evidence" from test results.

I hope the next round of tests get you some answers and I am so sorry it is such a long drawn out battle

Is there a possibility that he's got an eating disorder?

I ask this gently as I can't even begin to imagine how frustrating this is for you.

Having read the thread, I was wondering whether there were psychological/psychosomatic elements to this (and that is absolutely not OH making it up...). The brain is a complex organ and can have a profound impact on physical symptoms.

Ugh. I spent 5 years being fobbed off with this kind of argument before my diagnosis. Just because a test doesn't show something doesn't mean it isn't real.