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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 · 09/06/2023 00:33

@olympicsrock

He's a cross between the characters Basil Fawlty and Alf Garnet. He is chaotic. He commands attention in a group and what he has to say is cringeworthy. It's as if he's developed some sort of superiority complex - like he's fantastic at everything all of a sudden. But he isn't. He thinks what he has to say is riveting but it isn't.

I'm dreading his speech when our daughter gets married.

I feel that everything is out of control. I feel anxious all the time - I feel as though I'm shaking with nerves although I don't know if anybody can see me shaking. I'm anxious when he's at home and I'm anxious for different reasons when he's at the caravan.

I have absolutely no trouble falling to sleep because I'm exhausted all day - just can't stay asleep. I have never woken up refreshed. I seem to have to move position all the time to alleviate pain. Sometimes the pain is too much to bear lying down and I just give up and tend to spend between three and five hours in bed. My mattress is fairly new (got it the day before the first lockdown) it's a handmade Harrison Spinks bought especially for my back pain.

I'm waiting for a physio assessment for my back. It's difficult to hold myself upright some days. I get up and have a shower - I have to lean on the tiles to take pressure off my back. I go to make a hot drink and I'm leaning on the worktop to take the pressure. I was hanging out washing and having to sit every couple of minutes. Everything takes longer to do.

I have a podiatry appointment on Monday. I was referred after a physio appointment (at my GP surgery) for my back in January. I have arthritis in my big toes and I haven't put weight on the front half of my feet in 30 years. When I accidentally catch my big toes - the pain is excruciating. The left foot is much worse than the right foot. I walk heavily on my right side as a result. The physio said that my ankle, knee, hip and pelvis are affected because of the number of years I've been compensating for the pain in my feet. My walking pace has considerably lessened, my stride is much shorter and I feel like a shuffling old lady. I feel that when I'm walking with someone, I'm either in pain trying to match their pace or I feel that the other person is impatient at having to match my pace - both are uncomfortable.

I'm literally falling apart. Since I had a hysterectomy it's all gone pear shaped. I went to the GP last month because I was having fleeting chest pain/pressure with altered feelings/discomfort in my shoulder, arm (down to elbow), jaw and even up to the tip of my nose. I thought this was due to feeling anxious/worried/anticipating H's behaviour/moods, but the GP was concerned that it could be a touch of angina. So I'm waiting for further tests. But I think when a doctor hears my heart murmur they tend to err on the side of caution. So hopefully that will be ok. My daughter begged me to get this sorted out because she was thinking that I would keel over before her wedding, what with all the stress I've been under. All my family have been saying that I'm breathing heavily and I sound out of breath. When I answer my phone, people ask if I've been running - when I've probably just stood up and walked to where my phone is. I have been having dizzy spells - again I've put these down to feeling anxious. When I stand up I'm momentarily dizzy and stumble to one side. I've been fainting when I'm ironing - which can be dangerous as I've burned myself (and I've singed the carpet). I'm a walking disaster area. It's all come to a head since H was ill.

Nothing to report about grandson who has seizures. He's aware he's feeling 'funny' now before it happens and can move himself to a place where he feels safe. The last one he had was at nursery this week - it wasn't his key worker who witnessed it - it was another nursery worker who was quite scared about it at the time. She said that he'd been playing outside most of the morning and began to head inside when he started to limp, fell and then was staring into space - unresponsive. Afterwards, he limps for a while - his leg appears stiff. His genetic testing results aren't back yet. He's having an MRI on Monday under general anaesthesia. His sleep has gone from bad to worse - his mum is lucky to get a few hours rest in bed. Her two other children are constantly tired from being woken due to the screaming. He was causing mayhem in our usual shoe shop last Saturday, (they are used to us now and are very lovely and accommodating) I realised that it was suddenly calm and quiet and had visions of him having escaped from the shop. I shouted where's T***? The assistants and my daughter looked at me with pity/concern in their eyes - he was sat on my knee.

I'm going round the bliddy twist.

OP posts:
Wallywobbles · 09/06/2023 05:32

Gosh I wish someone could treat the whole family. You need an old fashioned family doctor who could see the whole picture.

olympicsrock · 09/06/2023 07:13

Oh darling - you do sound in a pickle. Get yourself to your GP pronto. Get your blood pressure checked - cardiology review needs expediting .

Referral to Orthopaedic foot surgeon to do An arthrodesis ( fixing) of your worst big toe.

NO IRONING!!!!!

It’s not necessary anyway.

Sending a big hug. We could try to meet up in November when I am up your way for a wedding. Xx

MmeHennyPenny · 17/06/2023 13:57

I just wanted to check In and say hello. I wonder how you are doing from time to time and send positive thoughts your way. I’m shaking my head now at my own silliness- but what else is possible?
It has been lovely to read the positive contributions from olympicsrock, and so life affirming to see a friendship blossom between you.
I hope you take her most recent advice to heart.
Take care, chin up. Remember you are a wonder!
(a wonder, and not a Womble!😂- that dates me!!).

Stomacharmeleon · 17/06/2023 15:21

Sending a hug. I am a bit crappola with meaningful advice as my life is a bit of a shit show so you would laugh if I tried.

But we all care xx

LakieLady · 17/06/2023 17:55

I've been wondering how you were doing, too @MyOtherCarIsAPorsche , but my memory is so shot I couldn't remember your user name or the thread title.

I really hope they manage to sort out your toes, and maybe that will ease some of your other pain issues.

I think that chronic pain has such an impact on one's mental health that it affects the ability to deal with things that affect one mentally and emotionally. And I hope they can do something to help your DGS' seizures, too.

MyOtherCarIsAPorsche · 17/06/2023 18:35

@LakieLady
@Stomacharmeleon
@MmeHennyPenny
🥰

Grandson had the MRI last Monday. He was very quiet for a couple of days. My daughter thought he may sleep well on Monday night - nope, she was up most of the night with him (as with every other night).

I saw a brilliant podiatrist last Monday - I was recommended to get a certain brand of trainer which is beneficial to those with foot problems. I actually had this type of trainer in my wardrobe but was saving it 'for best'. Game changer. I've regained some stride length and speed when walking immediately. There is much less sharp pain, just some discomfort.

I've been referred to a consultant for fusion surgery on left foot. They're also going to sort out impingement issues in my ankles. I'm going to have further investigation for my shoulders which are still painful/restricted after frozen shoulders which started in 2019. There are other joints which are painful which will also be investigated (elbows, knees, hips).

She mentioned hypermobility and I said that my two daughters have been diagnosed with EDS - which she said could explain a lot.

She also mentioned amitriptyline which I've tried before but can't tolerate. I was told to take it 12 hrs before I needed to get up the next day - I was asleep within 20 mins and still couldn't get up in the morning. I felt groggy all the next day. I didn't take it again. I can't tolerate alcohol either - half a lager and I'm sloshed.

So I'm getting sorted out and I'm actually looking forward to going walking/hiking with H soon.

OP posts:
VitVitMe · 17/06/2023 22:20

@MyOtherCarIsAPorsche Hi there! Glad to hear you are taking your first steps towards recovery.
Have you ever thought about taking natural supplements like curcumin and glucosamine, which are excellent for joints? There are so many available nowadays; for sleep too. Even your DH could benefit from taking supplements like omega 3/ ashwagandha among so many others which are clinically proven to help with depression. If you aren't taking anything currently, please have a read on these and other supplements. Best of luck in your journey to recovery. I really hope your grandson will get well soon Flowers

www.hollandandbarrett.com/the-health-hub/vitamins-and-supplements/?icmp=Menu_HH

MyOtherCarIsAPorsche · 17/06/2023 23:11

@VitVitMe

Thank you for that.

H takes C, D, a general multivitamin and glucosamine with chondroitin and collagen.

My endocrinologist recommended that I should take high dose (to tolerance level) C and D about 30 years ago. All my family take C and D on top of multivitamins. I also take a multivitamin supplement for menopause symptoms. I can't take the menopause one every day because it has a 'splishy splashy' effect on the bowels. Confused

H will not admit he's depressed. I think I could possibly be. I know the cause and I don't know what I can do about it.

I will look into ashwaganda - it's recommended on other sites, namely, I'm on a thyroid group which mentions it frequently. My thyroid appears unstable which is unusual. I've been prescribed t3 (consultant) for a lot of years now which is definitely not the GP's preferred treatment purely because of cost. When I first started taking t3, I felt warm (always felt frozen cold) for the first time in my life. I felt much more joyful - I would dance around the house to the radio (which scared the children). The t3 made many little differences which added up to a much greater quality of life.

I always thought that I had my medicines sorted. I do take quite a few supplements - until my bowels protest. I may try a different menopause supplement - I was ok on just C and D. And I may start taking H's joint supplements - I think I need them more than he does.

When we consulted a paediatrician privately for our grandson, he said he would refer him back to his NHS consultant and recommend tests and treatments. He's just completed all the tests - waiting for results, especially the genetic testing. One of his recommendations was melatonin. We are not able to get this prescribed by the NHS consultant as they have said it's not recommended under the age of three. His mum would cope much better with the days if she could actually sleep for a good few consecutive hours during the night. It's torture for her at the moment.

We have her other two children for sleepovers but her youngest will not settle at all for us. He screams at the front door for his mum when she has left him with us and I end up taking him home. He has absolutely no problems going to sleep at home - he just wakes frequently during the night. He appears shaky, absent and scared. His grunts, yelps and whimpers have mum checking on him at least every hour.

Our usual Saturday and Sunday includes our daughter and grandchildren coming around - she goes to sleep while I keep the children occupied.

My daughter keeps being told that it will get better (GP, HV, Early Help, consultants) I think that they're waiting for him to 'grow out of it', but it just keeps getting worse.

OP posts:
VitVitMe · 18/06/2023 14:30

@MyOtherCarIsAPorsche

Hello there 🙂
Definitely you should take your husband's joints supplements! Adding turmeric/ curcumin would be even better.
You should also think about taking supplements to promote sleep and try not to take drugs as you might get dependent. Preliminary research has found that ashwagandha may help people fall asleep faster, spend more time asleep, and experience better sleep quality. Magnesium can also help with sleep and anxiety.

Re your DH not recognising his being depressed is normal. Many depressed people think they are completely normal and it's only those around them who see it clearly. You could both take ashwaganda without him realising it is for his depression. Even if it does nothing on that regard, it can help other aspects. My advice for you is try to focus on sorting your sleep first because good sound sleep is the foundation of good health.

www.hollandandbarrett.com/the-health-hub/conditions/sleep/best-vitamins-for-sleep-relaxation/

For your grandson, there are many natural supplements you could try:

https://www.amazon.co.uk/Natures-Time-Drops-Children-Months/dp/B0BZZ3KW8Y/ref=mp_s_a_1_6?adgrpid=121369256121&hvadid=498347745492&hvdev=m&hvlocphy=1006773&hvnetw=g&hvqmt=e&hvrand=10022852098415755171&hvtargid=kwd-301562700179&hydadcr=16904_1717154&keywords=children%27s+melatonin&qid=1687092981&rdc=1&sr=8-6

And also this:

www.amazon.co.uk/Badger-Balm-Certified-Organic-Calming/dp/B001ULTEDW/ref=mp_s_a_1_1_sspa?crid=4EZRM452OQN7&keywords=badgers+sleep+balm+kids&qid=1687093860&sprefix=badgers+sleep+balm+kids%2Caps%2C116&sr=8-1-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9waG9uZV9zZWFyY2hfYXRm&psc=1

I feel for your daughter; lack of sleep is horrible.

I am not a professional and you should always seek medical help but natural remedies exist and just need delving into. You can research these online/ books or seek the help of a certified herbalist.

https://nimh.org.uk/

Good luck!

olympicsrock · 19/06/2023 22:53

@MmeHennyPenny hello ! Yes it has been a joy to get to know @MyOtherCarIsAPorsche who always makes me laugh with her writing.

MyOtherCarIsAPorsche · 19/06/2023 22:56

🥰

OP posts:
MyOtherCarIsAPorsche · 19/06/2023 22:57

Joy is my middle name!

OP posts:
MyOtherCarIsAPorsche · 19/06/2023 22:57

Actually- that's not true. 😬🤣

OP posts:
olympicsrock · 20/06/2023 06:56

🤣🤣🤣🤣

maudesvagina · 20/06/2023 14:15

Sorry slight tangent and I really hope you and family find what you need in all this but what brand of trainer was recommended?

MyOtherCarIsAPorsche · 20/06/2023 17:48

Hoka!

Let me know if you can't see the type on the photo.

They both have fairly solid soles. They both rock forward nicely. The pink ones have a carbon plate in the sole (the recommended ones) but they take me longer to put on due to the fastenings. They're also more uncomfortable to put on as I have to bend the front of my foot (arthritis in big toe joints) to get my foot inside. The grey ones, I don't fasten and I just slip my feet inside quickly and easily. So cushioned and comfy.

Most comfortable footwear I've ever worn - I'm actually walking without a limp. It's completely taken the pressure off my hip/lower back.

Podiatrist said the the worst footwear for problem feet is .... I can't say. It would be bad publicity.

Oh - had to go up half a size.

To think my husband is gravely ill at the wrong time?  Thread 2
OP posts:
MyOtherCarIsAPorsche · 20/06/2023 17:49

Sorry didn't tag you @maudesvagina

OP posts:
Lougle · 20/06/2023 17:56

@MyOtherCarIsAPorsche could you ask your GP if nortriptyline would be a suitable alternative to amitriptyline for you? I was prescribed amitriptyline but it gave me awful vivid hallucinogenic dreams alongside being really sedating. The GP switched me to nortriptyline which was much better.

maudesvagina · 20/06/2023 18:17

Flowers thanks!

MyOtherCarIsAPorsche · 20/06/2023 18:22

@Lougle

I will write that in my reminders and mention it when I see consultant.

Many thanks 😊

Yes - I had vivid (bad) dreams. Only took it twice.

OP posts:
Lougle · 20/06/2023 18:59

It's awful, isn't it? I stopped taking them when I hit DH in the night, thinking he was an intruder, then another night I saw a ceiling fan break away from the ceiling and spin towards me. We don't have ceiling fans!

MyOtherCarIsAPorsche · 20/06/2023 22:11

@Lougle

My dreams

I was waking home from town - very ordinary day. A helicopter approached from above - I was winched up and then when inside the helicopter it exploded.

I was in bed asleep and I heard a fire alarm. I woke up and jumped out of the window. (In my dream)

I awoke very suddenly from both dreams, gasping for breath. I felt extremely tired - wanted to go back to sleep but had to start the day.

My daughter was given amitriptyline for anxiety which she took once. Again, fell asleep immediately after taking it, had nightmares, slept through several morning alarms, groggy all the next day. She didn't have anxiety was eventually diagnosed with EDS and POTS.

I've also hit H during the night. One night I jumped on him from the dressing table. (Which I wouldn't be able to accomplish normally as it's a distance from the bed.) One night I was attempting to balance books on his face - I have a long history of sleepwalking/night terrors. And that is without medications.

I've also left a hotel room in the middle of the night, completely naked (went to bed in knickers and short nightie). I woke up in a strange corridor - didn't know where I was. Couldn't remember the room number. I didn't know which naked bits to try and cover with my hands/arms. I walked past a few doors whispering my husband's name. After about a minute he came around the corner looking for me. He had woken up and I wasn't in the room. He couldn't stop laughing - telling me I was on CCTV. It's his favourite anecdote to recall at parties. I've never lived it down. I have dozens of sleepwalking stories - including ones where I've unlocked doors and gone outside. I've not been sleepwalking since I stopped working. 🤪

I digress .... 🙄 again ....

OP posts:
Words · 21/06/2023 05:50

@MyOtherCarIsAPorsche - those trainers look very comfortable and sufficiently wide even for my meat plate feet. I will investigate, thank you for the recommendation !

I also have an arthritic big toe with limited joint mobility. Shoe horns are my friend when it comes to getting the hiking boots on.

Speaking of which, when you get back to it and if you're looking for a new pair of boots, I can highly recommend Meindl Comfort Fit. They are fantastic. Take a trip to the Ribble Valley and have them fitted at Warm and Dry in Whalley. They are fabulous, especially with problem feet.

Lougle · 21/06/2023 07:01

@MyOtherCarIsAPorsche I used to sleep walk! I've also had situations where I've woken during the sleep after doing a night shift and been alarmed that I'm in a strange place and naked, then gradually pieced together that I'm in my own bed.

Interestingly I was also investigated for POTS but despite passing out on the tilt table (test done because my HR was climbing to 160 on mild exertion and I was seeing stars when I stood up) they didn't diagnose and instead decided I had inappropriate sinus tachycardia with vasovagal syncope. They did give me ivabridine and fludrocortisone, which knocks my HR down a bit and increases my BP slightly.

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