How do I help DS deal with my possible death, he's 3.9

[joycetheripper]

I've been sick for a loooooong time main problem being really very serious daily migraines.

I've had millions of other symptoms that have recently got worse like a thorn under my right eye and the right side of my face being numb and pins and needles in my arms etc but I'm knackered & dont really feel like listign it all out here.

anyway eventually after it all getting much worse I had an MRI & they found englarged blood vessels & indications of AVM or anuerysm on the right side of my head so I just had a 2nd contrast MRI on Thurs to get more information. I know if it is one of those things they can operate to remove them before they burst which will sort me out really but frankly I'm scared shitless, especially after today when we were all out and I have barely left my bed this last few days because I find it so hard to stay awake but I made the effort to go down the road to a pizza place and then on the walk home I passed out crossing the road, although it felt to me that I just fell asleep for a minute. DS was screaming and crying and relaly upset that I fell down.

DS and I are extremely close, he has got used to me spending a lot of time in bed but we are really physically affectionate and I am a major softening influence in his life. He really depends on me for so much love. Although I must admit I wish I were dead most of the time now, because of the pain I'm in, I am desperate to hang on and protect him.

Either way can you help me to help him deal with this, in case I die. I dont want to leave him without me covering him up somehow.

Can you do a video ? Tell him how much you love him, all your memories from childhood. What you hope he grows up like. that you are sad you won't be there to see it.
He might like a video of you.
Plus photos and letters aswell.
But I can talk for england so videos seem like a good idea to me.

Any family or friends that can be around you whilst you await treatment? Now you have your diagnosis at least you have a concrete reason to ask people to be around you (not that you should need a diagnosis for people to help, I just meant maybe you will feel better about asking).

So sorry you are going through this. Best of luck to you.

hi,

i have just seen this and wanted to offer my support aswell

so sorry that you are having to think about this kind of thing and that your diagnosis was not as good as you wanted my auntie had an undiagnosed AVT and sadly passed away the doctors said that if they had been given the opportunity to diagnose and treat her, she would have been given an excellent chance of recovery she ignored all the warning signs and didnt seek help. her DD was 2.5 when she died in 1981 i am so glad you have pushed for help from your GP as now you can get the treatment and hopefully the cure so you can get your life back! (i hope that doesnt sound doom and gloom! i mean that it is a positive step that you know what is causing your illness and have access to the speciallists to save you from going the same way as my auntie)

i have a couple of books on preparing for and dealing with bereavement that i bought for my DD when DH's Gf died last year. i would be happy to post them to you if you like i found that they have helped her to understand the reasons why people are ill and sometimes die etc she is 4 btw

Joyce - I posted a week or so ago and wanted to say I am so sorry about your dx.

I also mentioned Homestart - I am actually from the same area as you and am very closely involved in HS in our area. I think it may be a good thing for you to do to get some extra support.

I don't have CAT but would do it if you wanted some help alternatively you can self refer here : www.homestartcolchester.org.uk/contact

We have helped a number of families in your position.

I havent really got much else that I can say other than you are in my thoughts. I am local to you and would be happy to offer you support

I just wanted to log on quickly to say I've been in a B&B to get some lovely sleep. I'm going to reply properly asap, I've read your messages and they make me feel better, thank you xxx

excellent joyce - wishing you much love

Hello joyce. Just read through this thread and wanted to say hello.

I have no experience but I have children and thats why I want you to know that your son is so lucky to have such a mother. Your concern and love for him leaps out of your posts. Whenever your time is, he will have a deep imprint of rich mothers love which will take him through life.

i think, if you make a memory box for when he is much older, a print out of this thread might provide an insght into how you thought of him and planned for him and cherished him.

I don't know for sure, others may feel it might be too much. It was a thought so I wanted to mention it.

I hope the house continues to sparkle and some more help is being generated by homestart etc. Lots of mn will be supporting you from the cyber shadows for sure!

Tree! I was just wondering where you'd got to - haven't seen you around for aaaages - everything ok?

Hey all.

treedelivery, thats a good idea - might say a lot with the little energy I've got these days.

I went into a&e thurs, I've only just got home. Going to be a short post as always I'm knackedered. I was going to be kept in but it was just lying in a bed til a different doctor could see me next week and DS couldnt visit me on the ward I was on so I opted to come home today. I'm on strict bedrest for 2 weeks and have to see neurologists etc in meantime and surgeon. DH and I have barely talked to each other, today and yesterday are the first days since Thurs I've been coherent and DS has been around the short time we've been together. I dont know what his plans are re: work but he knows I'm on bedrest so we'll see. I can stay awake for about 2 hours then I fall asleep again! Which is about now...

I am spending my time online shoe shopping which is about the limit of commitment my brain can handle at the moment!

Oooh good to hear from you joycetheripper.

Was it pain that made you go in on Thursday? Glad you are home and in your own bed. Could ds watch tv/dvd's in there with you, so he is around lots? If that would help you.
Even if you're sleeping, it mght be nice to have him cuddled in with you.

What you been buying?

Did you contact inmypants at the link above? Maybe dh could do it for you? If they came round and did the hoovering and stuff then everyone would be under a tiny bit less pressure. Whch might be good for you to know.

Wish I was local, I'd cheerfully bring round some freezer meals and do your laundry. I don't know where you are but I'm never local. I lve at the end of the universe

Hi Thumbwitch!

How you doing joyce?

Hi sorry I've been MIA.

I've sort of just been in denial. Well not really I just havent wanted to talk about it, or I havent been able to face it, but that's selfish of me, I'm sorry.

I've been feeling much better, not physically running around or anything but mentally alert and awake all day which is great and sitting up in bed or sofa all day.

I havent done anything practical like phone calls though, over the weekend I gave myself a pedicure and then my feet were so baby smooth I fell down the stairs and broke my finger and dislocated it. no shit. So bets are on for a flesh eating virus next. But all in all I'm fine actually! Bit cranky today but planning a break in the summer to CenterParcs. Decided last night when I couldnt sleep. I'm after a discount code if anyone has one, I started a thread but no replies yet

hope you're all good

Joyce, I've been following your thread for a little while, and I just want to say how brave and sensible you are.

Have you applied for DLA yet? They nearly always turn you down first off, but you have the option to appeal or just write a letter telling them why they should give it to you. I wrote a letter; I've known quite a few people who appealed. It doesn't seem to matter that much which you do, as they both seem to wind up getting you DLA. I think they turn you down on first application just to weed people out. It's bloody disgraceful, but there you are.

I hope you're feeling OKish, and that they get you sorted out soon.

I applied for the DLA about 3 months ago and was turned down and I'm going into CA this week to get help filling out the form as my stamina is so bad, while DH looks after DS to reapply. I definitely deserve it so I dont know what they are on about denying me! I'm not being funny but surely someone who is house and bed bound 80% of the time merits DLA oh well...

thank you very much for saying such kind things about me as well

Good luck with the CA. I must admit I found it more helpful to sit with a friend who would tell me how bad I was, as I was always trying to put a good face on it. They still turned me down, but I did find out later that they just do that

However, I wrote a very honest letter to them as an alternative to appeal, where I didn't pull my punches re my condition, and they capitulated.

It does seem utterly ridiculous that you haven't got it and have to jump through these petty hoops.

joyce, has your neurosurgeon given you a date yet?

Hey Joyce, just checking in with you - so pleased you've been feeling better. When do you see the neurologist / surgeon?

Another one just checking in to see how you're doing Joyce

I couldn't read this and not post.

I am so sorry about you dx. I don't have anything constructive to add which hasn't been said by other posters. I hope you get to see the surgeon very very soon.

Thinking of you and your lovely family.

Oh Joyce, I just wanted to say, you sound like such a lovely person and a brilliant mum.
I agree with the idea of printing this thread, you've said a lot on here that I'm sure your lovely DS would be very proud of.
Hopefully, one day when he's old enough, you'll be able look through it together and remember just how brave and strong you've been. I'm sure he'll be very proud of you, whatever happens.

How are you today?
Have you managed to get any more help?

Hi everyone! sorry its been so long posting. I feel really bad about it because you've all been really lovely to me but I just cant bring myself to come here much I know that sounds really ungrateful, I'm just being honest. I'm so shattered I just want escapism all the time i guess, I can only rarely face speaking about being sick. I've had 2 days recently where I've sobbed almost hysterically and unable to breathe, that really out of control crying which is totally unlike me. Other than those days I'm my normal self.

(Hi Lou )

Also with my broken finger typing is really hard now & will be for at least 2 more weeks.

Really I'm mainly alright though. DS is good and DH and I are really good together which is great, although my feelings of sex appeal have taken a blow.

My neuro team doesnt want to operate on me yet so instead they're focusing on meds right now. I've considered trying to go to the mayo clinic in america (I'm from america originally) but we cant really afford it. still I dont feel totally comfortable with the care I've had thus far so I'm slightly on edge. DH is still home from work, I'm still usually unable to care for myself and DS although I am gradually getting a little better I think. Certainly my willpower is fighting tooth and nail, I mean I am really working on climbing up where I can. I stillwear make up and have my work and hobbies and try to entertain friends etc but its probably about 2/3 being in bed and 1/3 that stuff.

I think the hardest thing is that my doctor does not want me to ever take any pain killers because they cause rebound pain, so I'm caught int his vicious cycle. I'm in incrdible pain with my head at the moment and I have a finger broken in multpile places, I'm stuck in bed so my back is killing me, and every time I take so much as a paracetomal I get threatened with discontinued treatment. It just makes me wanrt to scream and rail and shout you arent fucking living in this wreck of a body. I've played along for such a long time and I'm really just aching for relief.

Ugh. I'm sorry I have to go or I shall cry again. Thanks. I'll come back when I can.
x

Thinking and praying for you hun!

Nothing to add except to say I'm thinking of you

joyce

I've just read your thread for the first time. You sound incredibly brave

If you can't take any drugs for the pain, is it possible there are other treatments? I know nothing about your condition, so sorry if it's not appropriate, but have you looked into hypnosis, reflexology or accupuncture? I know they're not everyone's cup of tea, but might be worth a go? I had some hypnobirthing cds when pregnant with ds and they were very relaxing and I read somewhere about a people havin operations using hypnosis rather than pain medication.

I hope you can find something that makes life a little less painful for you. Will be thinking of you

just wanted to pop on. I did and this dropped off my list of 2 threads I've posted on so i wanted to post again so I don't lose it altogether. I dont really have anything to add though. I spent all day yesterday very sick and mainly crying. I dont want to be disabled and I sometimes feel like I'm just having the longest death ever, like it will be years of this. Put it this way, I'm not having a brave week although many of you have been kind enough to say I am.

bumpybecky I am looking into alternative treatments

I'm going to go now I've got a shopping date with a close friend. I have literally no energy for it but its been plannede for weeks and I've been saving up for it so I'm going anyway.