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Original poster

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

1000 replies

MyCake · 13/12/2022 04:32

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.

OP posts:
WinterFoxes · 06/01/2023 00:26

OP, Please forgive me if this has alrteay been suggested - I've read all your posts but not the whole thread: have they ruled out late onset Type 1 siabetes. My dad got ths in middle age and had pretty much all the symptoms you describe. Has he had blood sugar tests? My dad's blood sugar was over 40 when it should have been between 4 and 7.

Hollyhobbi · 06/01/2023 01:53

Haven't read full thread just your posts op but has primary hyperparathyroidism been ruled out as a cause of your dh symptoms?

Original poster
MyCake · 06/01/2023 06:22

I don’t want to ask for financial help because it’s my fault for not having enough savings. Most of our ‘rainy day’ savings have gone already.

But there are people in our family who could help us potentially. We’ve helped people a lot in the past, lots of times practically and sometimes financially (in a small scale) so I think if things were desperate I’d accept help. The dc’s schools have offered to cover after school club and two school trips.

One reason I’m not talking much about this in RL is that I am anxious that people will think I’m hinting for money if I mention money. It makes me feel more crap than I already do.

I work in a school but am on a middle leader salary so we can afford the mortgage, essential bills (just) and food. It’s just all the other stuff that is keeping me awake at night like dc’s activities, car repairs, any special occasions like birthdays, if dc need new shoes, if my animals get sick etc.
I love my animals so much and I keep feeling like I’m now irresponsible for having them if I can’t afford them. At the moment they give me more joy than anything else and I’m crying writing this.

I feel particularly broken today for some reason and I need to drag myself to work soon.
Dh shaved his face yesterday and he looks so thin he looks like he is dying.

OP posts:
Original poster
MyCake · 06/01/2023 06:24

@WinterFoxes @Hollyhobbi

I think they’ve checked for those. He’s been having different blood tests for a year since the numbness started and he’s had hundreds of tests in the last few weeks at the hospital.

OP posts:
Mumtobabyhavoc · 06/01/2023 06:32

I'm so sorry. I can't believe a diagnosis has not been given yet. Please share your burden with close friends and family. You can't carry this alone. You are in my thoughts. 🌹

Ulysses · 06/01/2023 07:41

Hello, I am so sorry you are all going through this and I can feel the weight of worry it must be placing on you in particular. I read your thread earlier in December when my own DH had just come out of hospital after two weeks. He had a fairly rare type of pneumonia which took a few long horrendous days to diagnose, so I can only imagine what these months have been like. The waiting is horrible and all the concerns that go along with it. DH has a long history of illness and spent two weeks in hospital in 2021 as well with Covid. He's immunosuppresed after a transplant some years ago.

I know the other worries you must have about the kids and money and the joy it takes away from you. DH was still fairly unwell after hospital and thankfully he went back to work yesterday and I was able to breathe for the first time since mid November. I hope you get the diagnosis soon. And yes to unburdening. I met his mum and dad in the supermarket the other day and they were asking how he was and I felt immediately bad that I was telling them that he wasn't so great, he was tired and grumpy but reflecting back it would have been daft not to let them know. If your family can't help you at a time like this, when would that be.

💐

SweetSakura · 06/01/2023 08:04

Some professions have specific charities with hardship funds.

It's also worth looking at turn2us for charities that might be able to make grants to you. The charity I am a trustee of is on there (we operate in a v small geographic area). These are exactly the kind of circumstances we come across where we can help with grants either for educational stuff or medical equipment or just paying the bills. grants-search.turn2us.org.uk/

h0rsewithn0name · 06/01/2023 08:11

I've been following your story and your feelings resonate with me for several reasons. I hope you get some answers soon.

Do you work in education? If you do, you are more than eligible for a grant from the Education Support charity. If you have made union subs over the years you will have supported this charity I'm sure. Several of my colleagues have been successful with grants. www.educationsupport.org.uk/

CottonSock · 06/01/2023 11:07

I've posted before as I went through similar a year ago.
I just wanted to say something re tests results. I know I was really hoping the scans would show something and we would have a diagnosis. In our case it didn't and It felt disappointing at the time. So try to think of finding nothing being OK too. A doctor friend of mine said to me how good it was they hadn't found anything. I didn't see it that way at the time though.
It can take a while to rule things out and they will also be looking at progression of the illness.
Thinking of you. I hope my words are not too clumsy.

Katekeeprunning · 06/01/2023 16:14

CottonSock · 06/01/2023 11:07

I've posted before as I went through similar a year ago.
I just wanted to say something re tests results. I know I was really hoping the scans would show something and we would have a diagnosis. In our case it didn't and It felt disappointing at the time. So try to think of finding nothing being OK too. A doctor friend of mine said to me how good it was they hadn't found anything. I didn't see it that way at the time though.
It can take a while to rule things out and they will also be looking at progression of the illness.
Thinking of you. I hope my words are not too clumsy.

Great advice

Hollyhobbi · 06/01/2023 19:43

@MyCake are you sure they checked for it? He would have needed vitamin D, blood calcium and parathyroid hormone levels checked. I can often be missed but is curable with an operation.

Kamia · 06/01/2023 20:01

I am sorry OP know that you are going through the worst. The worst is not knowing. I had a close family member who was in a coma for months and then passed away. When she died I was devastated but a part of me was relieved. The not knowing puts everything at a standstill it is delibitating. I hope that the doctors would find out soon and praying for good news.

MotherFrustration · 07/01/2023 01:18

How are things now OP? Have been thinking about you today. 💐

Nchangeagain · 08/01/2023 11:48

I hope you are doing OK and that you will soon get some answers. The 'not knowing' must be so hard on you all. Hopefully, it's something easily treatable 🙏🏻💐

StampOnTheGround · 09/01/2023 15:54

Hope you're doing okay OP x

ILostMyself · 11/01/2023 10:06

I’ve been thinking of you lots OP. I hope all is okay x

Original poster
MyCake · 11/01/2023 21:41

I am not ok at all today. I’m doing so much and worrying so much that I am breaking and he’s just said some things that have made me feel useless, particularly about the house which I am trying to keep on top of. I know he’s unwell and worried himself and I know he didn’t mean it, we rarely argue, he’s a very kind man and he’s acting out of character, but it’s hard not to take things personally when I am organising everything, working full time and sorting out all the finances.
I don’t know how much more I can cope with. Work is a brilliant distraction but it’s full on and tiring. Thankfully I have lovely colleagues that I can chat too.

OP posts:
Original poster
MyCake · 11/01/2023 21:58

I feel like the worst person in the world for posting my previous post.

OP posts:
SweetSakura · 11/01/2023 22:04

Not the worst person it the world at all. It must be utterly draining on every level.
However I also know what it is like to be him and to feel helpless /frustrated/scared etc. Him snapping at you wasnt ok (I know I felt awful when I did that to my husband) but is a reflection of the different ways you are both feeling under pressure.

It's horrible until there is some clarity and you can plan.

Iwantanapnow · 11/01/2023 22:42

Definitely not the worst person. We all feel for you and just want you and your dh to get a plan of action

Josette77 · 11/01/2023 23:27

Sending you so much love and huge hugs. You are doing beautifully OP. Don't feel bad about a single thing.

Reigateforever · 11/01/2023 23:36

You are a loving wife and mother and you are doing a great job. We are all thinking of you. Lots of hugs.

thaegumathteth · 12/01/2023 02:11

You're not a bad person! You're exhausted and worried and overwhelmed. You are allowed to be all of those things and it'd be weird if you weren't tbh.

You're both bound to be tetchy, don't expect too much of yourself. You don't need to be a saint!

You're doing fine , it's a crap time and you're still going.

Redebs · 12/01/2023 07:08

Sending a big virtual sisterly hug xxx

Batcountry8 · 12/01/2023 08:50

Just to say I'm reading and checking in too.

You're not to feel bad for feeling anything remotely negative or frustrating about this situation op.

You're human and have so much on your plate right now

Hugs xxxx

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