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OMG how do i work this out in my head

(18 Posts)
Pasithea Tue 14-Oct-14 18:54:18

Ok don't want sympathy, just need to get this out somewhere.

I have a life destroying limiting illness. It's hereditary had it all my life. Rules my life destroys family ties friendships relationships. I have over 40 admissions to hospital in a year.

I have now as a result of this developed another illness. If I don't have treatment I will be in a wheelchair in next year to 18 months and be very seriously ill in about 2 . In addition to coping with my original illness However, if I have this treatment I will make my original illness worse.

Ok it's out now need to think about this. Thanks to anyone who bothered to read .

IrenetheQuaint Tue 14-Oct-14 19:33:41

That's rubbish OP - feel free to rant here.

Do you have nice people in your life who you can rant at in person?

Sonnet Tue 14-Oct-14 19:37:15

Hard to get your head round xx

cantkeepmyoldname Tue 14-Oct-14 19:52:29

Pasithea have you got access to counselling? Your current additional diagnosis and the choice faced is one that you need help thinking through. Without knowing the conditions involved anything I say may be irrelevant.

Can I just ask though why is your condition destroying family ties, friendships and relationships? You are YOU, your condition is only PART of your whole friendships and family ties should still be there. Relationships are complicated but not impossible for someone with a life limiting illness.

Do you have some in rl that you can talk to? Forums are great for off loading and support but your post seems very down / depressed, your talking about very difficult decisions that you need proper help finding your answers to.

If there is anything I can help with please pm.

Pasithea Tue 14-Oct-14 22:45:42

Thanks for the responses. No I do not have access to counselling at the moment . I have just been told.

Due to my original illness I cannot work cannot have children am constantly on morphine diamorphine ketamine and such like drugs which change you completely affect my personality , memory etc which leads to problems with friends family. I cannot even imagine how much money and how many friends I have lost from cancelling outings and holidays throughout the years. So therefore I am not always me and not everyone understands or wants to understand the effects of legally prescribed drugs.

I have got a good husband , who is my carer and works. He has to have some distance from this to deal with his own search for answers with it all as we do not have a normal relationship.

If I don't have the new treatment I will be in a wheelchair permanently in 12 to18 months and seriously ill in 2 years. I have already chosen quality above quantity in the treatment of my original illness.

There are no choices to be made just yet more acceptance

Thanks all.

TinklyLittleLaugh Tue 14-Oct-14 22:53:15

Of course serious illness and disability has a massive effect on relationships and friendships. It affects every bit of your life. The divorce rates for disabled people are much higher than the average.

This must be incredibly hard for you OP. No advice I'm afraid. But like you, I personally, would go would go quality over quantity every time.

hashtagwhatever Tue 14-Oct-14 23:08:14

How awful op.

Have you discussed with your dh what may be best for you?. I too have a chronic illness which actually probably isn't anywhere near as limiting as your own.

It's hard to sustain a normal relationship when you feel a burden to your family and friends. And hard to live normally when you have nothing but pain and unwellness to ocupy your mind.

Pasithea Fri 17-Oct-14 22:13:00

Ok so I had my treatment yesterday and now I am in agony in hospital as it has triggered my original illness. This all seems very unfair.

hashtagwhatever Sat 18-Oct-14 08:56:44

How are you today?.

Will you be in hospital for long flowers

Pasithea Mon 20-Oct-14 05:54:04

Hi still in hospital , still suffering. I need to get out soon this is unreal. I need to get on with whatever life I can. Thank you everyone.

tuesday0813 Mon 20-Oct-14 06:18:30

It is unfair. I am so sorry you are going through this. I know this sounds trivial but can you immerse yourself in a good book and try and 'escape' reality for a while.

Pasithea Thu 23-Oct-14 15:23:22

At home now. Thank you for your comments. Yes Tuesday I read 4 in hospital. Although I'm having trouble remembering them due to morphine.

Hate being at home alone and unable to do anything.

hashtagwhatever Mon 27-Oct-14 13:32:42

How are you feeling now pasithea

Pasithea Sun 02-Nov-14 14:15:10

Hi Hash. Thank you for asking. I am ho mm e still not well. Had a couple of good days but that's it.

AdorableMisfit Sun 02-Nov-14 14:32:34

Are there any support groups (online or in real life) for people with your condition? It might be helpful to talk through the options with others in a similar position. I have a friend who has a serious life limiting illness and I know she has found a lot of support online from others who suffer from the same thing.

Pasithea Sun 02-Nov-14 16:05:13

Adorable. Thank you for responding.

Yes there are and I do offer support to others as well. However the majority of people , who have got my condition have acquired it due to alcoholism and or drug abuse. I have an extremely rare inherited gene abnormality which causes mine.

It is difficult to relate and get help and support from alcoholics and drug users as usually they contact the groups on their initial diagnosis and are still drinking and or drug taking ..

Ebayaholic Sun 02-Nov-14 16:14:41

Hi, I'm so sorry that life has thrown all of this at you. Can your condition be managed to any extent? Are treatments being developed, either here or abroad? Do you know of any fellow sufferers whose conditions are genetic rather than caused by drink or drugs?

saintlyjimjams Sun 02-Nov-14 16:18:00

Gosh that sounds a real stuck between a rock & a hard place. Can you make contact with non drug- related sufferers online? I do think finding others in the same situation (even if just online) is a sanity saver x

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