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Sick, scared and not fond of reality right now

(21 Posts)
Badvoc Mon 01-Jul-13 18:42:50

I'm so sorry for the loss of your friend, and for her family.
Putting your affairs in order is never a wasted exercise. I had a health scare a few weeks ago and dh and i have just re done our wills and appointed guardians for our dc.
Not a nice way to spend your time, but I do feel better now it's done.
X

BeeMom Mon 01-Jul-13 18:22:13

Thanks for all the words of support.

While intellectually I understand what a degenerative illness is, it is so much easier to blame a gradual decline on stress, or aging, or exhaustion, or whatever... denial can be a comfortable place.

If nothing else, this compels me to work harder at both taking care of myself and getting my affairs in order (just in case the unthinkable happens).

I know several families like ours, where one child is diagnosed, then the mother is tested - if she is positive, then all children are as well, and all the girls will pass it on (it is a mitochondrial DNA mutation, not X chromosome). While all of us mums are symptomatic, K was the first to have lost her battle. It was sudden - she became ill, and because her body lacked reserves, was unable to support herself. We have all lost children, at varying ages (early infancy to teens) but K was the first mum to pass.

I am still shaky emotionally, but for now life goes on (until it doesn't any more). Knowing I have shoulders to lean on makes the rough times a little easier.

thanks

salondon Mon 01-Jul-13 14:02:42

Hi, I dont know what to say. Hugs to you and your family. Condolences to E's family.

Pls stay strong for your kids

Badvoc Mon 01-Jul-13 08:37:48

No idea what to say, but sending my love xxxxx

Bluebirdonmyshoulder Sun 30-Jun-13 13:23:27

I wish I knew what to say to you.

I only 'know' you online but I consider you a true friend. You've always been there for me and have sent me some lovely messages.

I'll always be here to listen to you, on these threads or on PM.

Honking for you.

OneInEight Sun 30-Jun-13 09:09:08

No real advice but hugs and best wishes. Is there a support group you can access for sufferers of your disease? When I had treatment for breast cancer last year the ladies on the Tamoxifen thread in general health got me through it - like having children with special needs sometimes you just need to talk to people with the same problems. Luckily, I am fine now but the initial weeks following diagnosis were horrible so I can imagine what you are going through. Take care and be kind to yourself.

zzzzz Sat 29-Jun-13 23:19:35

Oh BeeMom HOOOOONK

The truth is you can't change it. It's shit and it's not fair. Sometimes it feels like someone should pay for the inequality, for the pain some of us have to bear and the pain some of us have to witness. I want to say something that will help, something for you to hold onto till this wave of misery and fear passes.

See the Dr if it will give more clarity to the progress of your condition.
Savour the days you have. Live them as best you can. We are here, for honks and to help if we can. We know your voice, and I for one am very fond of it.

HONK HONK canadagoose flapping along with you on this strange journey.

NoHaudinMaWheest Sat 29-Jun-13 22:19:52

There isn't anything useful I can say. I'm sorry about your friend - hard enough to lose a friend but more so in these circumstances.

Thinking of you.

hazeyjane Sat 29-Jun-13 21:42:28

I wish I had something more useful to say, but that I hope you find a way to stay as healthy as you can, and I am honking for you. X

Nerfmother Sat 29-Jun-13 20:41:06

I am sorry that this has happened. It's like you have lost a friend who knew exactly how you felt and also had a reminder of your own mortality. A horrible double whammy. Is your type less progressive? So you could feel like you can continue to be an amazing support to your dc? I am sorry, and I hope you can find some piece of reassurance from your geneticist.

Flappingandflying Sat 29-Jun-13 20:38:36

Honk honk honk.

ouryve Sat 29-Jun-13 20:22:58

I'm sorry you've lost your friend, Beemom. I think that, if you can, talking to a geneticist or seeking some form of counselling would be helpful. It's a lot to have praying on your mind, from so many aspects.

MumuDeLulu Sat 29-Jun-13 20:12:31

So sorry. sad.

I think you need an urgent chat with your geneticist, about the range of disease severity in given families, and about the likely rate of progression. Yes, he/she will say 'don't know', but it's probably a more optimistic 'don't know' than the one in your head.

lougle Sat 29-Jun-13 20:09:43

Beemom, I'm so sorry. Can you get some medical advice to make sure you're having the best treatment available, so that you can stay as well as possible?

TheNinjaGooseIsOnAMission Sat 29-Jun-13 20:08:03

sorry to hear about your friend beemom, sending hugs and keeping you in our thoughts flowers wine [cake]

pannetone Sat 29-Jun-13 19:39:03

So sorry to hear of the death of your friend BeeMom - that is so sad. I always remember in situations like these one of CupofTea's thread titles - 'A life full of love is a life worth living'. No one should lose their life or that of their child to these terrible conditions and the only 'crumb of comfort' is that the love can never be erased.

I am sorry that you are having to live with the worry of a degenerative condition - and the difficult physical effects it brings as well. Add in a bit of guilt/regret that you have passed this onto your children and no wonder life is so tough for you right now.flowers

frizzcat Sat 29-Jun-13 18:27:34

flowers hope things get brighter soon

PolterGoose Sat 29-Jun-13 17:13:27

Oh BeeMom how terribly sad and just awful sad

Eyes is right, we really do have to grab the joys as they happen flowers

Eyesunderarock Sat 29-Jun-13 16:32:37

Oh lovely, I'm at that stage in my mid fifties when I'm seeing friends die from cancers of various sorts, and leaving young children and teenagers behind. It's a horrible thing to watch others go through, I can't imagine how dreadful and scary it is to be one of the people enduring the worry and the hopes and the relapses.
Only thing that seemed to be any help was to live in the moment, grab the joys while you can and whilst they are there. sad flowers

LuvMyBoyz Sat 29-Jun-13 16:24:21

You have so much going on. It's hard enough to see your dc through a condition without having to face this. Any counselling? Parent support groups? You'll be in my prayers. Sorry I can do no more than hear your pain.

BeeMom Sat 29-Jun-13 16:17:22

I know this is choppy, but my mind is all over the place right now.

If you don't already know, I have a "milder" form of the same disease Bee has, as does DS. I gave it to them. would have preferred to give them large trust funds, but what can you do? After Bee was diagnosed, they backtracked to see if my "odd" medical issues might be related... they were.

The disease is degenerative, Bee was referred to hospice last year (but is doing VERY well - all things considered). In the last 5 years, we have seen too many children that we know either irl or online be taken by this damn disease. The first of them was E, and his mom and I became close (the children were seen at the same hospital). I have been noticing progression in myself, but have been trying to dismiss it as aging/stress/fatigue/being less than perfectly fit etc.

The last few weeks have reinforced that it is definitely disease process, but there is nothing I can do about it, so why stew over it?

E's mum, like me, was diagnosed after E was. She died on Thursday. She was 2 years older than me, and left behind 3 more children (who all have the same disorder in varying degrees).

I am heartsick, and scared for myself and my family.

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