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How do you get your life back?

10 replies

Firsttimer7259 · 22/06/2012 09:41

In a way this is about more than just our daughter's SN (she's 2.5, severe GDD). Alongside this I have lost my job, my H got diagnosed with MS, my family (who were never great) are being frankly horrid and I am big and fat following what was a difficult pregnancy (confined to bed) and lots of misery eating.

I am trying to get my life back together but its hard and sometimes I feel very lost. Money is tight and what there is goes on childcare to help us manage. Our daugther still needs the kind of care you would give a baby on many fronts and we have no family support nearby (and in the case of my family at all). I have almost given up on talking to anyone. I feel like I am this endless misery guts and boring everyone with the never ending tale of woe. I feel embarrassed and ashamed that I cant get it together. So I am very isolated. I am tryng St Johns wort to help me keep it together and have some counselling sessions trying to get on top of things. I feel things are so hard they are driving us apart as a couple rather than together. We have been working on making things better but it takes ages.

I dont recognise myself. Id like to ask those of you who have been on this block longer whether it gets better. Was there a point when you started to have a life again and what contributed to that happening?

OP posts:
iwanttoscream · 22/06/2012 10:01

It hard when you are dealing with so many things at one go. Please contact your health visitor or gp for a referal to homestart, they are lovely. I had a volunteer when i had my twins, my husband was working long shifts and i felt isolated with no family locally and a demanding 4yr old as well. They offer friendship and lots of support. When they started school i went back as a volunteer to help other families.

Firsttimer7259 · 22/06/2012 10:05

Thanks - I'll try that.
Alos I guess I should ahve said 'how do you build a new life that you like'. I know I wont get my old life back, and even that life with our D wont be as I imagined it. I just want life to stop being miserable and start being fulfilling again

OP posts:
iwanttoscream · 22/06/2012 10:30

As your daughter has been diagnosed with severe GDD, maybe ask your health visitor whether there is a special needs nursery maybe attached to a special school? Hopefully someone else who has a child with GDD will come on and offer more advice? But homestart will help you and your family as there are lots of families out there who are in the same situation.But I'M sure you can refer yourself to homestart as well.

moosemama · 22/06/2012 10:34

Hello Firsttimer, I'm sorry you are feeling so low.

I think a lot of what you are saying will resonate with many of us on here. I think it is hardest when it's all new and you are still trying to find your way through. Things can and do get better, although I'm not going to tell you it will get easier, because for many of us that simply isn't the case, but you will find a way through and find a way that works for you and your family. It is hard not to grieve for the life you thought you were going to have and the future you hoped for for your dd, but just because it's going to be different, doesn't mean it's not going to be a good life.

I speak from experience, as someone else who has had a child diagnosed with special needs and been diagnosed with MS myself within the last 18 months. I have good days and bad days, but try to focus on the things we can do, rather than those we can't. It's not always easy, I don't always manage it, but I hope think I'm getting better at it. I find planning things to look forward to helps, even if it's just a trip to a local country park for a walk and a cup of coffee or picnic at the weekend.

I know what you mean about the stress pushing you apart rather than bringing you together - you have to work on that though. Try to make time to enjoy each other's company without having to talk about or deal with the crap. A walk, a picnic, even just watching a film together in the evening - none of it costs money, but the time and space to just be together is priceless and helps to remind you what you loved about each other in the first place.

With everything that you have been and are going through, it's important to make time and space for yourself as well. No-one can be all things to all people at the best of times, let alone without taking some time for themselves. When I felt like you I started shoving dd in the pushchair and walking. I started small, just a walk around the park, then the block etc. I bought myself a pedometer and built it up until I was doing my 10,000 steps a day. It helped me to find some peace from the constant noise in my head arising from the chaos that was our life and had the added bonus of working off some stress and excess weight and improving my fitness at the same time. Find whatever works for you, be it walking, swimming, gym or an exercise class.

If you are seriously at the point of not being able to even contemplate doing that, maybe a chat with your GP would be an idea. I know you said you are having some counselling, but you may need some anti-depressants to help lift you enough to get going. I have had to do this in the past. I was very anti and really didn't want to take them, but it was the best thing I ever did, as I couldn't change anything until I took control and I couldn't take control until I had some help with the stress and anxiety.

I second iwantto's advice as well. Homestart can be a huge help, either in practical terms or just by having another adult to talk things through with or even spend some time not talking about all the day to day stress and problems but having a cuppa and chat about this and that - which is something 'other people' take for granted. My sister is a Homestart volunteer and she helps in lots of ways, from looking after children so their mum can have a nice long bath or walk or pop to the shops, to doing the shopping for them, to just having a cuppa and a chat.

Another idea is to approach your local SureStart Centre and ask if there is a SNs support group in your area. Our SureStart runs one once a week, just a coffee and chat, some emotional support and practical advice based on others' experiences really, but it all helps to make you feel less isolated.

Finally stick around and keep posting on here, join us on the Friday night thread to either chat about your week or sound off as necessary. MNSN has really helped a lot of us to not feel so isolated and slowly start to make sense of things and move forwards, it is an incredibly supportive and friendly place.

Firsttimer7259 · 22/06/2012 10:54

thank you moosemama especially for taking the time to write all that down. Its sucha long road and often I wonder if I am even going in the right direction. Reading your post is really helpful. I think I will make GP appt too

OP posts:
moosemama · 22/06/2012 10:59

You're very welcome Firsttimer.

I have a bit of a rep on here for using 10 words when 1 will do - good job I can type fast! Grin

I am sure you are going in the right direction, sometimes progress can be so slow it's practically imperceptible, but keep putting one foot in front of the other and you will get there.

Firsttimer7259 · 22/06/2012 11:11

No no..i didnt mean it was long but rather that its actually the detail that gives me hope. Helps me to see it really will happen - it will just take time and effort.

Progress is so slow - development and putting any plans into action about how we will cope...

OP posts:
moosemama · 22/06/2012 11:19

I'm glad it helped a bit Firsttimer. Smile

hazeyjane · 22/06/2012 11:32

I've pm'd you.

AgnesDiPesto · 22/06/2012 13:26

I would agree look at SN needs nursery. They usually take children from 2.5 - you will need a statement of sen. If you can find a good one and know your DD well looked after you can think about a part time job or volunteering. Or even just meeting the other parents for coffee.
I went back to work part-time and while all my colleagues are stressing about possible redundancy, constantly changing work practices etc etc I am having a lovely break enjoying a cup of tea while its still hot and enjoying being around adults again. Both my DH and I have got very down when we have been isolated at home and while it is not the financially sensible thing to do we now both work part-time so we both have a mix of caring and work. We find DLA, tax credits etc makes it fairly manageable and we forgo the extra money one larger salary would bring in for better quality of life.
We also now get a few hours per week direct payments from social services and a free sitter once a month. You are entitled to a break as a carer so can ask for an assessment from disabled children's team at social services

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