General Disabled Parents Chat

[weegiemum]

Several people have suggested that we should have a general rather than specific chat for parents with disabilities so I thought I'd start it!

I'm weegiemum, I've got 3 kids at 8,10,12. I have an ongoing neurological condition called CIDP, which gives me numb hands and feet, arms and legs, lower face, and altered predation so I can't tell where my lower limbs are if I can't see them!

The result is I have no balance, limited walking ability, have a wheelchair and walking aids, and can't do fine motor stuff. Sewing, writing, cooking, knitting etc all ruined.

Just wondered if, whatever you've got, however you're disabled, you might like to join in here!!

Hi Rollersara,

Thank you also for another great reply. I am in Leicestershire (Midlands). Whereabouts are you in the South of England?

I love the idea of a specialist OT. It would be really helpful to be able to experiment with a pretend baby. My OT assessment has finally come through for next week. I hope my OT is as helpful and brings me a lifesize baby to experiment with.

I guess for all of us it is going to be a case of largely trial and error because most of our conditions and how they affect us are so varied.

After reading the posts here I think a bedside crib would help me but I am not sure I will get in and out of bed from my wheelchair unless I try and get in from towards the bottom of the bed or the other side of my bed but as my bed is King size it may require quite a lot of moving round and my back is currently very painful making it more difficult to move round.

Do you find your sling pulls on your back and shoulders? What kind of wheelchair do use? (Is it manual or electric?). Have you seen the Cursom wheelchair baby carrier? It is not being produced yet but looks amazing...

www.sinbadesign.com/product-design/cursum-stroller-for-parents-with-mobility-disabilities/

I also came across an idea I thought I could use when my child is a bit older...

www.demand.org.uk/index.php/what-we-do/design-development-and-manufacture/

About half way down on this page is someone with MS who had their wheelchair adapted with a buggy board so their toddler could stand behind their wheelchair and 'hitch a ride'!.

What did you use as your changing stations - was it just a changing mat on a table?

It seems amazing that children naturally seem able to sense and adapt to our disabilities / abilities.

How old is your daughter? Is your condition stable? I worry what will happen if I have to go into hospital and the impact this might have on my child.

Very best wishes to you and thank you for taking the time to reply to my post.

Best wishes, Fi

Just written a long PM and it disappeared , will try again later (DD is currently napping!). DD is 7 months now, her "changing station" is really just a couple of boxes and mat on the floor but it works for me!

What would you do if you don't have a bedside crib? Wouldn't it be harder if you have to get in and out of your wheelchair to get her in the night? Or were you planning to co sleep? FWIW, the bednest only take up half the length of the bed, so DD was right by my head and I got in and out from the bottom end of the bed. I also put it up a month before she arrived to get used to it!

I had a selection of slings, the one that worked for me was the BabyBjorn. It does pull a bit but keeps her very close and secure. I used it a lot in the house and to go up and downstairs till I got used to carrying her. She is just getting too heavy for it now.

Hi

I have relapsing remissive MS. I get really tired, and have nerve damage in my legs and feet. Some parts are numb, some parts burn. It's been in remission for a couple of years, but the burning and fatigue never goes. There's worse things to have though, hey.

Hi Weegie mum, hope you're feeling a bit better today! I can't remember not being disabled any more, and most of the people I know didn't know me then, but it must be hard :(

Hello ladies. I have Fibromyalgia and have been a little down about it recently. Miraculously it went away during pregnancy (I have heard this can happen) and despite my better knowledge I started to believe it was gone for good - which can't happen. My ds is 5mo now and my joy and love, but he always wants to stand upwhich knackers my neck and shoulders. I have a supportive dh and a mum and dad, but most people don't understand what they can't see. My fibro is getting bad again but no one ever knows except my dh as I hate people feeling sorry for me. I have no medical support - after diagnosis four years ago it's been 'here, have a painkiller' and that's it. I feel blue, and ashamed of this when seeing evidence of people braver than I, but I am new to the concept of managing a disability while being a mum.

Hi,

I'm Andrea. I have a disc pushing on my spinal cord that my spine has fused round (thanks, spine!), so they can't get it out without sawing through the spine.
This isn't an option, so I'm just waiting to end up in a wheelchair and that could happen at any time - depending on whether the disc severs my spinal cord or not.
This has left me with chronic back pain over the last 15 years. I have spinal injections, both in my sacroiliac joints and epidural, along with a combination of very strong medication (50mcg morphine patches, pregbalin, etc., etc.)
I'm lucky enough to be able to still work. I work from home and look after my children, the youngest being 7.

In a lot of pain at the moment as the hospital messed up my injection dates so I'm just waiting for one, but at the moment the earliest is October :(

Anyway, hello all! :)

It's such a shame so many are coming out of the woodwork, but it is nice to say hi to you all. All of us struggling but still talking, here if nowhere else!!

MeanAndMeaslyMiddleAges OMG I could have written your last post about having fibro.
Mine was terrible while I was pregnant but went away when my daughter was born, She is 17 months now and I was doing fine on amitriptyline and painkillers until I decided to stop taking them and now I'm back to square one again.
I have literally been left to get on with it too. and I think the trouble with Fibro is that it makes you feel so tired and exhausted all the time that even the simplest thing becomes such an effort.

Hi newcomers :)

Andreadl the phrase "end up in a wheelchair" is one of my bugbears! I do know what you mean, but honestly, getting my first wheelchair was one of the best decisions I've made! I went from being in pain and exhausted from struggling to walk to being able to travel much greater distances with more independance than I'd had for months. It took about 3 months to get the hang of it and build my arm muscles up, but after that it significantly improved my quality of life, I hope you find the same.

One thing to consider - might be worth getting one sooner rather than later so that you're ready for when you need it?

I bought an electric wheelchair and I loved it, I could take my DD to school (she used to stand on the back) and I gave all her friends rides around the playground!
It had quite a long range on it so I used to wizz about everywhere in it. It also could fit in my car so I could take DD out to places and be able to get round them with her too. There is no way I could have left the house without it!

Hello again, this had dropped off my 'I'm on' list so it's good to find you all again. Reading your stories makes me sad but also in awe of what we can all achieve really. Welcome to all newbies, it's good to talk.

I've had a good summer but feeling the onset of lung infection once again, it's a bit of a 'here we go' feeling.

weegie, how are you - missing you on the other thread.

hi ladies, have not been on in a while so only just seen this thread : ) re the not sleeping at night because of the pain - have you not been given any sleeping tablets? i have to take zopiclone on the nights when the pain is so bad i can't sleep, otherwise if i don't sleep, because i have m.e as well, i get v ill v quickly & would end up bed bound.

the ironic thing is, if i was bed bound (impossible to let happen with a toddler to look after!), my chronic nerve pain would be a lot better than it is! i have a damaged pelvis & my hips & back do funny things to compensate for the worn away bone, i'm wonky on my left side & the pain is referred through my lower back & down into my sciatic nerve & left leg. every time i lift, bend, walk, stand for more than a few mins, the pain is triggered & gets worse the more i do.

i try to keep positive & upbeat, but it's so hard sometimes to see my friends with their babies doing normal things, when the most i can usually manage is a trip to the supermarket once a week! i'd love to be able to go for walks, go shopping, go to the park, swimming etc. she goes to a childminder one am & one om a week, so she gets to do lots of fun active things there : )

Hi everyone! I'm so proud of myself I didn't think you'd mind me posting!

As I've said before I have a long term degenerative nerve condition (CIDP) which affects my sensation and balance.

Today my dd2 (8) had a "build a bear" party at the same named shop at the city centre in Glasgow. Dh said he'd deal with it but he's been off work the last 2 weeks with stress/depression. So I made him take off, buy a newspaper and have some time alone.

I ended up with dd1 (12) and ds(10), so we looked at (and bought) a game for the PS3 (last few weeks pocket money!) and dd1 got a Big Bang Theory poster.

I got the fancy utensils I liked in Lakeland!!

So I'm happy I had a good time with my kids but I'm worrying about dh. He can't take any more time off as he works as a sessional GP and after 2 weeks the salary dries up! I work but only 6 hours a week (all I can manage)And I'm going back on Tuesday.

I don't know how to help. I suffered pnd from when my first child was born in 2.2 and it was only last year that I came off the antidepressants 3 Dcs and one m/c later.

I was depressed from feb 2000 till sept 2009, when my youngest was 7!

I was diagnosed with a physical disability in Jan 2012.

It's crap, but all you do is get your head round it.

I know it's easier said than done

Please pm me if you want to chat, on here or email or on the phone!

Weegie xx

Rollasara How are your hands after the CT surgery?

Mine is worse than before surgery and doc says this is because I haven't massaged scar. I was not told to, just told to rest hand. Was wondering what you were told and how you are.

Hey Lola, I was thinking about you recently! Neither hand is much improved - the pain in the night has stopped but the wrists are both much weaker than they were, using crutches is painful and the scars themselves are oversensitive and painful. I had very little advice from the surgeons other than take it easy and rotate the wrists regularly. However, my neighbour is an OT and she told me to massage them regularly with E45, which I think helped a bit.

What's the main problems with yours?

My hand is very weak and over sensitive. I can't lift anything heavier than a cup, I can grip or squeeze at all and I have a very physical job which I'm really not able to do 6 weeks on..... I have pain in my wrist now as well as the original pain in my fingers and my fingers go dead during the night, I'm waking regularly with pins and needles. I don't know if I should be resting it still or trying to get some strength back,

Sorry to hear that Lola, sounds like the underlying problem (pins and needles sounds like carpal tunnel syndrome) hasn't been fixed at all. Mine is better in that sense, just the surgery has caused more problems. I'm on maternity leave, but there is no way I would be able to manage either the driving or the typing my job entails at the moment. I was told to expect to be back at work probably after 2 weeks, 4 weeks at most :(

Have you seen your GP? Am thinking I need to...

Gp was no help for me, just told me to wait to talk to specialist. I missed a call about pysio today whilst having a migraine. I hope that will be helpful (although I have encountered 2 brands of physio from my hospital, hand on (helpful) and just lots of talking (if only talking about it could take away the pain! It's pysio not counselling ffs!!)

The thing that worries me most is I don't know if I should be resting hand or using it? What were you advised to do?

It seems I can't spell physio today

Don't know! Was advised on what to do until the stitches were taken out, after that it was "take it easy", and that was it! So I guess use it, but don't overdo it (which is what I think I've done!).

I just came on to whinge. I'm feeling terribly down about my disability right now. I miss the things I can't do anymore. I feel such a burden on my lovely dh and family. I hate living with this. I hate being pleased that I managed to fond a nice walking stick. I just want normality, but it's not ever coming back. Just feel very hopeless and sad.

{{{hug}}} I know exactly how that feels. Dh is making some choices at the moment which would be fine if I wasn't a physical wreck. I feel so useless because there is so much stuff I can't do anymore, I used to have hobbies, and a social life! Now I have health care routines and hospital appointments.

Aw thanks Lola. I think that it's settling in to my mind now that this is not only lifelong but slowly degenerative. We had always planned to go and work in Latin America, it was our dream. But it's not to be, and it's hard to let the dream die. Dh has been very depressed because of this. I feel like I'm hurting him by being disabled.

:-( I've vetoed moves to the US and Canada. Canada was a pipe dream but Dh had a job offer the US (when little Lola was 2) and I made him turn it down (well I said I couldn't go with him) I don't think he will ever really stop resenting that, but he has stopped me from having my dream too (not that itstit for tat, we just didn't have the same life plan) . Staying together has meant neither one of us can be truly happy I think.

The worst of it is I lived in the US before I met Dh so he feels the injustice, but I was a student living in a dorm on a big campus, with everything I needed provided, not a mum to a disabled child living in the suburbs (with a dh working 80h weeks!) with no job or transport...... Or childcare..... And paying for health care.....

It's the paying for healthcare that prevents us moving. I get a treatment once a month at a cost of about £8000 and we'd never get insurance. Also, the one good thing is that I've got an excellent neurologist and our local hospital is on of the top places for treatment in the uk, if not the world. I'm very, very grateful for the NHS!