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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think my husband is gravely ill at the wrong time? Thread 2

610 replies

MyOtherCarIsAPorsche · 30/05/2022 11:23

Continuing from 1st thread.

OP posts:
Thread gallery
33
MyOtherCarIsAPorsche · 26/01/2023 20:17

@Forgooodnesssakenow

Hi there,

Because he's had two eeg s which didn't show anything he remains undiagnosed.

Daughter is still up and down checking on him through the night as this is the time of day that he thrashes about.

We thought you needed a diagnosis to claim DLA?

He was fitted with a dexcom (sp?) device on Tuesday afternoon. This will monitor his blood sugar for 10 days. He's since been trying his best to pull it off.

Nursery seem to be more tolerant of his episodes and have only rung up for him to be collected recently when he's started foaming at the mouth.

We've booked to see a paediatrician privately to try to get more of the bigger picture. My daughter is frustrated that she is no further forward with regards to a diagnosis than this time last year. We now have quite a library of video evidence of his episodes - which seems cruel in retrospect. But she's been told to gather as much footage as she can.

I can appreciate that these things take time. I initially thought it was more straightforward. Meanwhile she exists on continually interrupted naps and every now and then we reach a crisis point where she feels that she can't go on.

There are issues with her two older children which haven't even begun to be investigated. And she's alone - breaks my heart when they leave to go to their own home. She has no one at night to fall back on. It's all on her.

I've offered to stay over but she doesn't want to put me out as I have the children all day.

It's a slog.

We knew something was amiss when he was three months old and we voiced our concerns then. We waited a year to be seen by a consultant after that.

The only way forward is to pay.

OP posts:
Forgooodnesssakenow · 26/01/2023 21:22

MyOtherCarIsAPorsche · 26/01/2023 20:17

@Forgooodnesssakenow

Hi there,

Because he's had two eeg s which didn't show anything he remains undiagnosed.

Daughter is still up and down checking on him through the night as this is the time of day that he thrashes about.

We thought you needed a diagnosis to claim DLA?

He was fitted with a dexcom (sp?) device on Tuesday afternoon. This will monitor his blood sugar for 10 days. He's since been trying his best to pull it off.

Nursery seem to be more tolerant of his episodes and have only rung up for him to be collected recently when he's started foaming at the mouth.

We've booked to see a paediatrician privately to try to get more of the bigger picture. My daughter is frustrated that she is no further forward with regards to a diagnosis than this time last year. We now have quite a library of video evidence of his episodes - which seems cruel in retrospect. But she's been told to gather as much footage as she can.

I can appreciate that these things take time. I initially thought it was more straightforward. Meanwhile she exists on continually interrupted naps and every now and then we reach a crisis point where she feels that she can't go on.

There are issues with her two older children which haven't even begun to be investigated. And she's alone - breaks my heart when they leave to go to their own home. She has no one at night to fall back on. It's all on her.

I've offered to stay over but she doesn't want to put me out as I have the children all day.

It's a slog.

We knew something was amiss when he was three months old and we voiced our concerns then. We waited a year to be seen by a consultant after that.

The only way forward is to pay.

Took us 4+ years to get a diagnosis.

The low blood sugars may just be as a result of the seizures themselves, very common.

Eds can have links with epilepsy, we have eds in our family. The assumption with my son now is genetic epilepsy scna1 I think but awaiting blood results, it's a spectrum from febrile seizures to dravet syndrome. We have febrile seiUres plus.

Seizures themselves and the attention required are what lead to DLA entitlement, so long as the neurologists agree they are true seizures. We've had clear eegs, MRI and CT too. But he almost does of a 50 min seizure in October.

Anyway, they'll investigate and get to the bottom of it. She should also ask epilsepy team for a bed seizure alarm, we got one from the council.

Ultimately though it's something she needs to accept and learn to live with and I'm getting help from the psychology dept to do that. The lack of sleep is bad. As is ay when I say I've not slept a full night in 5 years I 'm sure people think I exaggerate but im not.

MyOtherCarIsAPorsche · 26/01/2023 21:47

@Forgooodnesssakenow

Ahhh - so it's worth mentioning his mum's EDS diagnosis again.

Lack of sleep is the worst torture.

When you say to a GP 'I am not sleeping' - you can almost hear their eyeballs clunking upwards in the obligatory 'eye roll'.

Words don't seem to convey the debilitating exhaustion of night after night disturbances.

I'm so naive - I honestly thought epilepsy was easy to diagnose. His episodes look like classic epilepsy (I've taught quite a few children with this condition over the years). I was certain it was epilepsy.

A bed alarm is what we need. We think most episodes take place at night. He wore an owlet sock which monitors heart rate and the alarm goes off during an episode as his heart rate is so high.

So H and I have been out to a couple of local pubs. I've had three halves and I'm slightly squiffy - all from local breweries. I'm quite relaxed now and pain is tolerable - I need to drink more alcohol. I have found the answer!

OP posts:
Stomacharmeleon · 29/01/2023 21:07

@MyOtherCarIsAPorsche sorry if you have addressed it but is there any reason you are reticent to ask doctor for zopoclone?

I don't take it every night but if I haven't sleep it's a god send.

MyOtherCarIsAPorsche · 29/01/2023 23:04

@Stomacharmeleon

I'm worried that certain drugs will affect my judgment.

I've spoken to good friends who have said that these kinds of drugs have impaired them in some way.

My hairdresser said that they were convinced that similar stuff was responsible for them crashing their car.

I often leave the house to drive for one hour at 6.30am so I have to be up at 5.30am. I don't want to take anything which will zonk me out.

I took one low dose amitriptyline tablet a while ago and I couldn't get up the next day and I felt groggy all the next day. So I don't want to take anything which will impede me in any way. I will let so many people down if I'm not able to get up and 'be responsible for children'.

I do seem to get a little more sleep 2-3 nights a week but that's possibly due to having no sleep at all the previous night. I started going to bed in the early hours (2/3am) when my shoulders were frozen because I couldn't sleep for the pain. I would have 2-3 hours in bed and then get up and start the day. I seem to be stuck with this now - I can't bear to be in bed and just lie awake. It feels like such a waste of time - and a very long night.

My hip/back/leg pain has now overtaken the shoulder pain - I can't even sit in the same position for very long. I'm constantly having to change position. When I'm out, I can't bear to stand still because it's painful - it's better/distracting to just keep moving. As soon as I start my day I'm struggling to stand still long enough to have a shower. I get dressed and go to the kitchen and I'm bent over the worktop - to take pressure off my back/legs. My grandchildren have me up and down on the floor for a good part of the day - I suppose it keeps me moving, so that's positive. One good thing about looking after the grandchildren is that I can lean on the pushchair when I'm out and about - I feel more confident when I have that to lean on, but it's not easy to manoeuvre when every single joint in your body hurts. I even have to keep letting go of the pushchair handle to flex my wrists and elbows. I'm sure it's all low level stuff that's been creeping up over the years - it's just that when I stop (go to bed) it's when I feel the most discomfort/pain. And I know how much I have overdone the previous day with how uncomfortable I am the following day.

H is busying himself going for long walks every day and is asking me to go with him at the weekend (we used to go fell walking regularly) but I can't face the effort after having the grandchildren most of the week.

Both daughters are are working towards me doing one day a week childminding from Easter (that will be two days for me) - this will possibly bankrupt them and I will feel bad about that. (H has been telling them in no uncertain terms that he resents me looking after the grandchildren - it was his suggestion that I stop working to look after our first grandchild so my daughter could go back to work full time. This makes me feel rotten.)

I spoke to the GP recently about the MRI results and she wants a physio assessment before I get referred to the musculoskeletal service and the pain clinic. I see the physio tomorrow afternoon - I have lined up alternative provision for the grandchildren and will treat myself to a visit to my favourite coffee shop before I come home.

I just need to know if I'll have to shave my legs for tomorrow? Confused

OP posts:
notapizzaeater · 30/01/2023 00:41

Nah ! It's still winter, you need your fur 🤣🤣🤣

MyOtherCarIsAPorsche · 30/01/2023 07:51

@notapizzaeater

Last time I shaved my legs, I didn't have to take my trousers off. Blush

Last time I didn't, I looked like the cartoon depiction of Desperate Dan - thick spikey hair all over, especially toes.

I don't wear skirts because I hate my legs - H says they look like raw turkey flesh. He's not wrong.

OP posts:
MyOtherCarIsAPorsche · 30/01/2023 15:38

Well - just feel cringe.

Decided not to shave - guess what?

Take your jeans and socks off.

Oh foooooooooooook Blush

Bliddy gorgeous young bloke to boot. If I'd have known I'd have waxed and tanned.

I'm no further forward though as yet - I'm to have physiotherapy sessions first, to see if any improvements can be made before referral to musculoskeletal service. The waiting list is one year for physio.

Another year?

OP posts:
notapizzaeater · 30/01/2023 15:55

I'd be checking money at it now, your health can decline so much in the year you'd be waiting and as we've ALL said before, you're worth it !

olympicsrock · 31/01/2023 08:17

This is utterly bonkers. Private physio , do exercises for 6 weeks then demand referral. Grrrrr

TheSandgroper · 12/02/2023 03:29

@MyOtherCarIsAPorsche

ABC Australia has just shown a film you will be very interested in and, having followed your threads, thought you may find interesting. It’ll from the perspective of having had heart surgery rather than living with the person who has had heart surgery.

www.roninfilms.com.au/feature/17867/handling-heart.html

I hope life is going all right with you. Please take care.

Sincerely

MyOtherCarIsAPorsche · 12/02/2023 08:48

@TheSandgroper

Ooooo - many thanks for that.

I will look later - we're off to celebrate future son in law's new job (only time I've not been child minding this week).

It's H's 60th this week - he's quite depressed about it.

My older daughter is in pieces - had some awful news about her youngest child. The consultant we paid to see last week suspects a genetic disorder and says grandson will need significant support. They are arranging a 'micro ARRAY to include Angelman's study'. The consultant report we received Friday was bleak.

OP posts:
TheSandgroper · 12/02/2023 09:22

@MyOtherCarIsAPorsche I don’t know what to say. You leave me speechless. All I can do from here is pray for you all but, rest assured, praying for you is what I will be doing.

zebrapig · 12/02/2023 23:12

OP I've followed your thread for a while but never felt that I could contribute until now. Someone I met a few years ago, her DS has Angelmans. Whist I know she has her struggles she always posts about him with such love and he is thriving with her support. If it turns out to be that and you'd like me to put you in touch PM me.

olympicsrock · 13/02/2023 11:58

Hi Porsche - that is tough. I’m hoping that the news is more positive once you have the text results. Xx

MuchuseasaChocolateTeapot · 11/03/2023 11:32

Hi OP, how are things going?

MyOtherCarIsAPorsche · 18/03/2023 19:16

I went wedding dress shopping today.

My daughter, I and daughter's future MIL (lovely lady).

My daughter looked stunning - so natural and beautiful. She could've walked down the aisle right there and then.

Future MIL and I were in tears.

We then went and toasted the successful morning and had a lovely meal and a good old chin wag.

A little bit of oasis in a desert of a year.

I'm feeling less and less anxious about going out and immersing myself in life - I'm wondering whether I've been more depressed than I thought.

It's just coming up to the first anniversary of H's aortic dissection type A (25th March). Whilst I'm very thankful that H is still with us - nothing will be the same again. We've changed paths in this life - I'm doubtful that this is going to be a more pleasant path to tread. But, today was a perfect day.

I want to live again.

I believe that it's going to be possible to feel 'joy' in my life again - but I'm scared that if I allow myself to, something really bad will happen.

I allowed myself to think that I had a lovely, contented life this time last year - and then I was punished for daring to feel happy.

I'm frightened to be happy - just in case I ruin everything for someone else.

OP posts:
Zonder · 18/03/2023 22:03

Great to hear you've had a good day OP. You deserve to be happy.

KeziaOAP · 18/03/2023 22:25

Good to hear you had a love!y day wedding dress shopping with Dd, happy time for you.

Weenurse · 19/03/2023 02:34

Remember the feeling from today to motivate you to do more for yourself

Feministwoman · 08/06/2023 14:28

How are things, @MyOtherCarIsAPorsche ?

MyOtherCarIsAPorsche · 08/06/2023 19:08

Many thanks for asking.

H seems very well and is possibly as well as he was before the operation.

He plans and goes on long (8 hr) walks when he is at our caravan - every other week. It's an isolated place in the middle of nowhere and I don't like the thought of him putting strain on his system when there's no phone signal, a risk of him falling - it's a remote place.

He fell in a fjord and cut the top of his leg quite badly recently.

The leg from which he had a vein harvested from for his surgery has gone numb on the opposite side - his outer thigh. The scar from the operation is the full length of his inner thigh. I was wondering if this was something to do with the damage caused by removing such a large vein. His GP has written to his surgeon to ask about the symptoms.

As for his personality - I think I'm stuck with a 'different' person. He's short tempered (he was so laid back before - he was horizontal), he can't tolerate the noise of the grandchildren - he leaves when they are here. He goes to bed early and gets up late - we have no evenings together. (We have no days together.)

Before the operation he was an excellent cook and a great socialiser, organising many get togethers. That doesn't happen now - it's few and far between. His cooking skills have gone to pot - he serves food unfit to eat and no one dare say that they can't eat it because he will explode in a fit of temper. Meals for family are eaten in silence with eyes down, as if he catches us looking at one another, passing glances to each other, trying to make it look like we're eating, he will grab a plate of food and take it to the bin and throw the lot in, plate and all.

He insists on cooking - he's always cooked.

My son bought me a meat thermometer recently as the main complaint has been that the meat isn't cooked. I thought I'd hid it well as I didn't want him to see it. He found it straight away and thought it was hilarious. This makes me think that he's trying to poison us with undercooked food on purpose. I was going to wait for 'the right time' to bring this subject up so he could start to use the thermometer under his own steam. But I can never catch him in a good mood. Another complaint is the things he adds to food to make it taste sour, too spicy, really strange.

He genuinely thinks he's a master chef and serving up Michelin star dishes. He's more experimental with food - ruining expensive ingredients. He even makes baked beans taste foul by putting 'secret ingredients' in them.

When he's not about, the family all joke about his culinary creations/abominations. It's sort of funny and then again frustrating/annoying and ever so slightly humiliating when family and friends are here.

People pull me aside and ask 'what's gone wrong?' - I don't know what to say. I spend my time apologising for his food, his outbursts, his hair style and bad choice in clothes. Sometimes he can laugh at himself and sometimes he's just awful - it's all unpredictable and we never know which version of H we're going to get. I now wake up and the first thing I feel is anxiousness for the day ahead. It's mainly all crap with little chinks of unexpected 'lightness'.

I feel .... - is this as good as it gets?

OP posts:
Zonder · 08/06/2023 19:47

That sounds so awful. Is there anyone you can flag this up to, in case something can be done? I'm thinking maybe worth you telling the GP?

olympicsrock · 08/06/2023 20:37

Oh dear, I was also thinking about going and going to ask how you are getting on. His fitness sounds so much better.
the numbness on the outer thigh is not related to the vein harvest ( this causes numbness down the line of the inside of the leg sometimes but not outside). More likely to be something called meralgia paraesthetica.

The cooking sounds a nightmare like something out of fawlty towers! Are you sleeping better ? And how is your pain. At least you haven’t lost your sense of humour . Much love xx

Badger1970 · 08/06/2023 20:56

That sounds like a living nightmare.