how can i cope? physical strain and emotional drain

Find support and advice when dealing with the practical aspects of parenting when you have HMS - from pregnancy to teenage issues.

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how can i cope? physical strain and emotional drain

Postby victoria39 » Tue Jul 07, 2009 8:02 am

i have hms and i have 6 children and my husband and i are separated. i was wondering how i am going to manage. i have a 9 month old baby, 2 year old toddler, 6 year old, 9 year old, 16 year old and 18 year old. my teenaged children are both at college and they help me out so much however i have to cope with school runs, and everything u can imagine i have to cope with the little ones. how am i going to cope, i dont want my controlling, hitler of a husband back to make us all unhappy and supress us all again, what help is there out there for me and my family??? i do not have parents or siblings to help and the only friend i have has her own family and works full time so i am pretty much relying on my teenage children who are studying hard for their future and can do without having to look after a mother, a baby and toddler and primary school children and housework etc etc, i want them to have a life!!!!!!!!! is there any hope for me or have i got to be unhappy for the rest of my life on anti depressants of // mg to cope with a dictatorial abusive husband who cheats with other women because i can't offer him sex as i am parenting 6 kids and coping with this pain all the time. anyone with any ideas will be a blessing thanks.

Mod edit - removed dosage details, please have a read through the board rules.
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Re: how can i cope???????

Postby curlysue » Tue Jul 07, 2009 10:26 am

Victoria,

Firstly... :hug:

Secondly, you CAN cope without your husband. You are panicking right now but you will find a way to manage. Under no circumstances allow an abusive ex back into your life. You will be happier in the long run without him.

I don't have any kids myself, but I'm sure other board members will give you practical tips on coping with parenting and HMS.

I do have a few suggestions though:

Visit your GP, tell him/her that you are struggling, ask for some counselling and a referral to OT. OTs can help in numerous ways and they can give you some aids to help you practically cope around the house and with your baby/toddler. Also ask about pain management clinics, and whether there's any provision for free practical help on the NHS (such as a home help).

Apply for DLA - it's a stressful process but you might get quite a bit of money, which you can use to pay for a cleaner or childminder, for example. There should be a Welfare Rights service in your town which can advise you and help with applications.

School run - would it be worth getting in touch with your children's friends' parents and trying to organise a car pool, or just asking them to give your child a lift in the mornings? Even one day a week without the school run would help.

I understand how you don't want to lean on your older kids... however just talk to them about your fears, I'm sure they will reassure you that they'd rather help you out than see your ex come back!

I hope this has helped even a teeny bit! :)

CSx
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Re: how can i cope???????

Postby gila » Tue Jul 07, 2009 10:34 am

:hug: victoria!

put DLA and /or social services into the search facility on here- you will find many posts and some tips on how to go about trying to get this kind of help.
it most likely wont be easy- sigh- but it sure is possible.
and as you had the strength to leave an abusive husband (well done!!!)...you will have the strength to find a way to get some much needed help
good luck!
xxg
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Re: how can i cope???????

Postby parent » Tue Jul 07, 2009 8:55 pm

Hi Victoria,

Trying to think of things to help do you go to a parent & todler group? could you speak to your health visitor she might be able to help. Are there any parents of your other children's friends who maybe you could confide in and maybe get some support.

Can't think of anything else at the moment.

Wishing you well :hug:

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Re: how can i cope???????

Postby Finarda » Tue Jul 07, 2009 9:32 pm

I can't provide much advice as I don't live in the UK anymore but the others have given you good suggestions. However, I just wanted to send you :hug: from Canada and totally feel for your situation. I only have 2 kids and I find it a strain coping with the daily routines let along 6. And I have my husband to help. You definitely need help and I really hope you manage to find some.

In Ottawa there are some programs where single parents can get a break for one weekend in 6 where someone else takes their kids for the weekends - are there any kind of programs like that? Maybe the health visitor would know or even google it?

Hugs,
Fiona
Diagnosed EDS - Hypermobility 2004. Severe Hemiplegic Migraines. Both kids show hypermobility but haven't been tested.
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Re: how can i cope???????

Postby victoria39 » Tue Jul 07, 2009 10:09 pm

thank you all for your advice, i really appreciate your comments and there are some very practical tips, i will try to see if i can get some counselling and speak to my health visitor, i think i panicked as the first lady said, and i am a very strong person i am sure i will get through this. my older children would rather help me than see my husband come back and turn our happy house into a boot camp. thanks again and god bless xx
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how to cope? physical strain and emotional drain

Postby notsparklynow » Mon Jul 26, 2010 2:34 pm

Hi all

I have reached the conclusion that having HMS and fibromyalgia makes parenting hard. And it's worse as my son (7 years old) has Asperger's syndrome. This morning he kicked up a major fuss because he had run out of kid's toothpaste and I wanted him to use the same as the rest of us. 10 minutes of him shouting, screaming, physically fighting me off later - I managed to sneak the toothbrush into his mouth for him to say "oh, it's ok actually mummy." Monkey! :naughty:
The problem is he is so strong I dont know if he will cause me damage. I have the same problem often when I wash his hair, he kicks up a fuss and refuses. This is bad for me physically but drains me emotionally so much that afterwards I feel washed out. This morning I cried and he said "its ok mummy you're doing my teeth now". I just don't know how to deal with it - the Aspergers is one thing but throw in how I feel and it compounds the situation.

My daughter is almost 9 and I worry that she's a bit of both. She doesn't understand non-verbal signals and questions things at very inappropriate times. She tries to help but often gets it wrong. She has been complaining that we hurt her when we hold her hand "too hard" :S or if we give her a gentle nudge she says it hurts. I don't know how much is her over-reacting or whether she might have some fibro/HMS symptoms developing. She's forever covered in bruises and is by her own admission, clumsy. Both kids have bendy fingers and wrists like me - but neither have been looked at for HMS as my diagnosis is quite recent. They have both seen physio and OT in the past for coordination problems and have been discharged as they are "within the normal range".

I'm just stuck for ideas. And I know that the long holiday has the potential to be a nightmare if my son keeps resisting me.
:cry:

I suppose I'd better get onto their paedeatricians and see if they can look into the HMS side of things - but is 7 and 9 too young to diagnose? I know young kids are more flexible anyway.

Any tips on how I can make life easier??? :oops:

Thanks,
notsparkly
HMS/EDS hypermobility type; fibromyalgia; Asperger's Syndrome.
Mum of 2: one with Aspergers Syndrome, both are hypermobile but with no other HMS/EDS symptoms.
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Re: how to cope? physical strain and emotional drain

Postby Ruby » Mon Jul 26, 2010 7:23 pm

Hi notsparkly,
First of all have a hug. *hug*
secondly, if I was in your situation I would go to my gp and explain your fears to them. Your gp can then recommend advice. The Summer holidays are particularily tough as everyones routines go out the window. Perhaps your local council could recommend some holiday clubs for a day out or two for your son or daughter. Perhaps even a specialist agency that cater for kids on the spectrum, if that would benefit your son.
You have this forum where you can let it all out and hopefully get some good advice.
Take care of you
Ruby
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Re: how to cope? physical strain and emotional drain

Postby sillyoldbear » Mon Jul 26, 2010 9:49 pm

Hi Notsparkly

First things first- sending you big and gentle hugs. :bday: :hug:

Although my children do not have health problems like yours coping with them is incredibly hard. I have a 2 1/2 year old girl and a 20month old boy. Most days I feel like I am about to have a meltdown and must say/feel on a daily basis that i cant cope and i need a break. You are right parenting with hms is physically and emotionally draining and getting through normal banal day to day life in incredibly tough. My partner is my carer and I honestly dont know how i would cope with the children at all without him- which makes me feel totally useless, and guilty and a whole host of other negative emotions. I realise that I am not really giving you any helpful advice here and I apologise- I suppose I just want you to know that you are not alone. Sometimes just talking to someone who can listen and understand can help with the emotional side of things. As far as the physical, well, the old pacing technique has got to be the best. I realise in situations where you are having to struggle with your child and when they are fighting with you that you cant just sit down and have a rest :shifty: Maybe seeing as though its now the school holidays you need to find a new routine ( trying my best not to sound condescending, sorry) and rather than getting into a row/struggle just sit down and let him get on with his outburst and when he has calmed down a little, try again. I know this is much easier said than done and I really should take a leaf out of my own book at times and that also I know very little about you and your childrens personal situations and that this method may of course not be productive for you. If you continue to struggle maybe social services can help you a little bit- when my children were first born and before Ash became my carer a lady used to come to me once a week and take the baby for a walk for an hour- it really helped just to be able to have that little bit of time to sit and relax and let my body have a complete rest. Remeber you are not alone and you have a whole community of people here who will listen, not judge and support you
Take care
Simone xxx
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Re: how can i cope? physical strain and emotional drain

Postby notsparklynow » Tue Jul 27, 2010 2:15 pm

Thanks Simone and Ruby for your replies :)

I was having a bad day yesterday and just felt very overwhelmed. It took me several hours to feel "cheery" again after the toothpaste incident!
I have started looking into local ASD support groups so I think that will help us as a family to cope with my son.
I don't know my limits yet - I'm still discovering things every day that I can now see are symptoms of my HMS / fibro. The trouble is when everything happens at once I just break down and can't function.
Simone - pacing myself and finding new routines - no not condescending! Good advice. I probably do fret too much and can't step back from a situation when I'm in it. The holidays throw me completely because I'm used to daily routines too as a teacher!

If all else fails, I'll have to leave the kids with the TV for a few minutes and retreat to my bedroom - which is very relaxing thanks to some great birthday presents I got a few months back (electric colour change candle, electric tealight candles that look just like the real thing and a lamp which has sparkles in it like a lava lamp but without the blobbiness).

Thanks again for reading and offering support. Much appreciated :)
HMS/EDS hypermobility type; fibromyalgia; Asperger's Syndrome.
Mum of 2: one with Aspergers Syndrome, both are hypermobile but with no other HMS/EDS symptoms.
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Re: how can i cope? physical strain and emotional drain

Postby sillyoldbear » Tue Jul 27, 2010 6:19 pm

Sometimes leaving the room for a few minutes can be a great disraction and there is no harm whatsoever sticking them in front of the tv for a bit- in fact i wholoeheartedly agree with it. Of course you dont want it all day and all the time but maybe just for an hour mid morning and then again before teatime- plus nowadays the programmes are great and so interactive and educational. Plus kids alsoi need to learn to play and do things on their own- its important for all the family to have a bit of me time- you cant be doing things with them every minute of the day.

I hope today has been a better day for you

take care
simone
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Re: how can i cope? physical strain and emotional drain

Postby Rosie » Tue Jul 27, 2010 6:48 pm

Hi all

When my girls were little, if I needed some time out I would put on their favourite video (yes, it was a while ago) and let them watch it while I snoozed on the sofa. With a video/dvd you know exactly what they are watching.
Relaxing outside on a lounger while they played in the garden was another way to grab some time out, and of course the golden rule of if the kids are asleep, get some sleep yourself.

Rosie
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
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Re: how can i cope? physical strain and emotional drain

Postby Alison C » Wed Jul 28, 2010 8:47 am

I think some children with HMS show symptoms of sensory processing disorder - either loving or hating touch, loud sounds etc. Search sensory processing here. An OT should advise - can you phone your OT and explain about the problems with touch?

Can you get to GOSH HMS Clinic for advice? Yes - your children's ages are fine to make a diagnosis. At GOSH there is a fab team - physio, OT and clinical pyschology and I am sure their advice is just what you need.

When stressed, seratonin levels drop really low so medication can help and then make life seem less depressing and anxiety making - gp can advise if necessary. Maybe can you talk to your gp about your feelings?

Yes living with HMS is like living on a rollercoaster at times. The best thing is that you are thinking about their feelings and how to look after them - you are fab!

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Re: how can i cope? physical strain and emotional drain

Postby Alison C » Wed Jul 28, 2010 8:52 am

Forgot to say that my hands hurt if someone shakes my hand normally - I can feel a bony ache for the rest of the day, and I am sure they can feel my bones moving around when they shake my hands (from watching their face!). My son has to have a light touch from me as he has very supple fingers/thumbs and used to hate light touch whereas my daughter craves touch so needs a big grip.

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Re: how can i cope? physical strain and emotional drain

Postby madmum » Wed Oct 06, 2010 11:46 pm

I am not diagnosed but it looks like i have hypermobility. My son is diagnosed hypermobile/?hms. He is having a very bad time recently and is due in hospital 25th. He is reluctant to go and stubborn when it comes to physio. I am having a lot of pain myself and my physio has diagnosed a hamstring injury to add to my problems. I have also injured my right wrist by falling and hyperextending it(have previously fractured it) and it is very painful. With his problems and mine i am exhausted. I cannot call social services due to previous problems. My mum usually supports but just recently seems to be getting critical of me and my parenting. I am a single mum who survived domestic violence. Tonight i have felt very flat and emotional but have held back because of my son. Not looking forward to the hospital stay on a put you up bed. So far this is my lowest ebb having seen my son suffering so much recently. Sorry to sound negative but feel i need to tell someone. Any ideas how to deal with this?
Mum to son with hms,pain amplification,migraine,plantar fascitis,ibs.lactose intolerant,hayfever and numerous allergies. I have hms,arthritis,migraine,p.o.t.s,allergies,and others too numerous to mention. Acused of being mentally ill hence.....madmum.
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