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.

@MyCake I hope you get answers soon and I hope that it turns out to be something where they can get him feeling better quickly.

I slept so much better last night 😊

Only 2 more days of term left and then hopefully I can relax a bit. I think I need to cry and sleep a lot on Friday as my body aches from worrying and trying to do everything for everybody.

Here are a couple of bits of hope/good news in the middle of the worry:

One of my dc’s schools has offered to pay for his after school club next term as they know we will struggle with a lack of dh’s income. I cried when they offered! It’s a state school and so they don’t give bursaries and help officially so it was a lovely much needed bit of news yesterday.

Also, we realised dh’s sick pay might
reset for 2023 so he’s speaking to HR to see whether they can increase it from his current statutory sick pay in the new year. Their sick pay policy is crap but otherwise dh’s work have been very supportive and have sent us general supermarket vouchers for Christmas!

Dh looks like shit this morning and is back at the hospital this morning for more tests. Please keep him in your thoughts as I can’t go with him today as I have to be in school. I’ve organised him lifts there and back but I feel guilty. It’s the only appointment I’ve missed but I am genuinely needed at work this morning.

So no changes to any parts of his brain have shown on scans?

Have they specifically looked at the cerebrum? Definitely ask them this.

I will be keeping you in my thoughts. It's such a horrible worrying time.

@MyCake i can’t get you out of my mind, praying your husband gets on well today. It’s tough when you can’t get to an appointment with him. Ask him to have the Dr write everything down.

I had an unexpected cancer diagnosis in Sept and at the end of the appointment I asked the Dr to write down the main things as our heads were just all over the place.

@Katekeeprunning it is literally only a scan and LP today so hopefully straight forward. I am writing things down but to be honest we don’t know much at the moment apart from what they’ve ruled out.

Sorry to hear about your diagnosis 💐

Thinking of you @MyCake

Sounds like your husband is getting good medical care and investigation and I hope you get a diagnosis with effective treatment options x

I know it's tempting for others to want to help with medical advice, but I'm guessing you just need moral support at the moment. Big virtual hug!

Hey OP, my heart goes out to you with everything you are having to deal with. Right now you are the one holding all the balls together so don’t forget to look after yourself too. Whether it is just grabbing 10 mins to yourself please do it. You and your family are in my thoughts and prayers. I am here if you need someone to talk to whatever time of the day xx

My thoughts are very much with you and DH, such a long quest for answers
It's good to hear of the kindness of DC school and DH work during a tough time
Accept all the gestures and offers of help as people just want to help

That's very nice to hear you are getting relief in some areas of your life. I do hope your dear husband gets the help he needs!

I had all those symptoms years ago and it turned out to be a severe B12 deficiency (59 when a low result was considered under 200). Is this something they've checked for? I'm assuming so, but thought it worth mentioning just in case.

It's surprising how badly a vitamin deficiency can affect you, but it can be serious and at v. low levels it causes neurological symptoms as it did for me.

@Terzani thank you very much I really appreciate, this was super helpful

Hope your husband got on ok today @MyCake

I hope your husband will be ok but I think you should plan what to do whatever outcome. Even if it's good news it might be some time until your husband is back on his feet. He may need caring for some time. It will be great to have a backup plan just in case. Is there some charities that can help I know some charities that help cancer patients and their families. Is there anything you are entitled to receive that you are not which will help with the cost of living.

and on that practical front your union might have an emergency fund that will give you a bit of help. You could also see if your mortgage company can swop you to interest only or give you a payment break. My dh became very unwell and stopped working suddenly and I managed to scrape through with some structural changes to our lifestyle so I am now committed to paying my mortgage until I am 105 but we can just get by. Hopefully non of your planning is needed and I really hope you get your healthy husband back quickly. Something h similar happened to my sister in law where she went from healthy to wasted and grey faced. What she had is a long term condition but is manageable and she has since taken part in a few triathlons and a swimming holiday and looks fantastic. I wish you a similar experience.

I had all these symptoms and it was b12 deficiency (Pernicious Anaemia) ... it can mimic MS. I was told for 10 years that my B12 was 'fine' and it was only when I looked into it all myself that I realised it wasn't. Basically, even if your DH has had his B12 tested and been told it's ok, don't trust that and read up on it yourself. This site has great info on it and how it is misdiagnosed and mistreated
www.b12deficiency.info/what-is-b12-deficiency/

There is also a fantastic Facebook support group

Glad he is getting the LP done so quickly OP. It seems they moving fast now.

Autoimmune diseases can take so long to diagnose.

Has he applied for PIP to help financially?

He couldn’t have the tests yesterday due a complication on one of his scans which needs double checking but he’ll have it next week hopefully.

He is worse every day and it honestly feels like a race against time. I cried so much last night at my friend’s house that I was nearly sick and have woken up with an awful headache. I’ve barely eaten for days. He looks so ill now.

sending best wishes

Hi op, I haven't read all the replies so nit sure if it's been mentioned but please apply for PIP. I know he hasn't got a diagnosis, but he's claim will still be considered as he continues under investigation, just make sure you send any hospital/ gp reports with the claim. Might help to ease the financial burden. PM me if needed.

It's awful when you're so upset you can't eat… Is there anything you can face that's easyish? Cereal, toast, instant porridge, pizza, muesli bar, crisps/chocolate even? Something you can just go through the motions of eating without having to think about it too much, I mean. Sometimes soup or hot chocolate or milkshakes are good for getting calories down you. Giving yourself some fuel will help your brain and body function a little better, which won't change your situation but might help with the headache and with any stuff you need to do.

@FurryDandelionSeekingMissile I can’t even be bothered to make myself toast. I have been living off bits of chocolate, croissants and crisps which I know is awful.
I am cooking for the children still (although they’ve had sandwiches or cartons of soup quite a lot too recently) but I am vegetarian and have lost the will to cook myself something too.

My dh used to do most of the cooking as I work until later and also he cooks better.
Some days when he has a bit more energy in the afternoon he has cooked and enjoyed it as it’s been the only thing he’s really done all day.

I wish you were near me; I could do you a nice daal and rice with pakoras and raita xxx