Mum with complex health issues- what the hell does the future hold?

[nappyqueen]

I’ve got major complex health issues cropped up over the last 2.5 years. I now have 2 feeding tubes and about 5 diagnoses! My DH is so supportive in most ways but struggles with things that can’t be helped and just says “doctors need to do something” or “you need to push for ......” etc. He can be quite abrupt/forceful with this but I know he just struggles feeling useless but I hate it too and there is nothing that can be done. I’m still working full time in a demanding field but just started so can’t and won’t stop until I have to!
I’m scared about the future and I just can’t face the reality of what it might hold. I’m scared, I’m petrified and I just don’t want to go there. The kids know a fair bit, but I try to shelter them from how I feel. I want to run away and hide from my whole life but unfortunately my health would only bloody follow me so no point in running is there?!!
I’m isolated, I’m tired, I’m scared and I feel so sad both in a tearful way and a pathetic, pitiful sad way!
How can I make friends with so much going on and kids are older so no nursery, toddlers, school run etc. I feel like I come with so much baggage that people just won’t want to know
Hey, what a waffle but kind of says it all about how it’s going!

Hi I'm not in your shoes but I dont want to read and run. So when your not feeling up for going out try to find support networks online for your specific diagnoses'. I've found fb great for help on IBS, Endo and Anxiety (which I'm sure are quite trivial in comparison) and you might find a few people geographically close to you who would become friends.

The doctors could be a good place to ask about support groups, there are often physical groups set up for long term conditions. For example, MIL has attended a group for ME and Fibromyalgia.

People on here are also so supportive when you have a hard time. I know it's not the same as a real life hug or hand hold but just knowing some is thinking of you and talking you down in a hard time helps xx

Handhold OP, you have a lot on your plate. Your DH is probably reacting because is a frightened too. It’s scary when someone you love is poorly.

My advice to you, would be to take each day as it comes, don’t think about the future, it’s the now that we have so try, to squeeze the most out of each day. Don’t beat your self up if you have a rubbish day either.

I was dx with MS a few years back, when my DS’s were both young, for the first 6 months, all I could think about is when I would be in a wheelchair, how quickly will the disease progress, my dx came out of the blue, it took me a long time to accept the dx.

My Neurologist, who has been wonderful btw, said to me “you are the same RoseLilly that walked into the room, before I gave you the dx” very sensible advice.

When you receive a dx, you have two choices, let it consumme every waking minute and every area of you life, or think well I have got x and get on with life.

There is always someone worse off, and every day I wake up and can get out of bed and walk, is a bloody good day.

Wishing you all the very best OP.