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General Disabled Parents Chat

(116 Posts)
weegiemum Mon 18-Jun-12 19:14:25

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!!

CMOTDibbler Mon 18-Jun-12 19:24:28

I'm CMOT, I have a 6 yr old, and following an accident 2 years ago I have very, very limited use of my left arm (basically my thumb works a bit) and CRPS. And lots of scars.

DH has extensive arthritis in his legs, needs a knee replacement very soon in one, and will prob have that hip replaced too.

We are big on pain relief in this house smile

flowerflo Tue 19-Jun-12 18:57:47

Hello, I've got a 5 month old daughter (who is gorgeous smile). I have a progressive muscle wasting disease. Mostly affects my breathing muscles, core and lower body. Use a bipap to breathe at night and get very short of breath and fatigued. Can walk but am slow, struggle with stairs, kerbs, low chairs etc.. Lots of pain etc. Not able to put down/pick up my dd from the floor but generally coping very well with motherhood. Am 'fortunate' to not look 'disabled' (whatever that looks like) so get regular dirty looks and verbal abuse when I use my blue badge!!!! Nice to meet you all. What is CRPS? X

Melawen Tue 19-Jun-12 22:54:23

Hiya, I have a gorgeous six month old DD and I am profoundly deaf (I don't use sign language as a matter of course). My DD is not deaf and while I don't have any phsyical limitations I do need alarms and such to tell me when she is yelling!!

It seems like there are a few acronyms around - what is CMOT or CIPD?

weegiemum Wed 20-Jun-12 04:51:19

I've not heard of CRPS either. My condition, CIDP, is Chronic Inflammatory Demyelinating Polyradiculoneuropathy. I can even spell it these days!!

ThoughtBen10WasBadPokemonOMG Wed 20-Jun-12 06:59:49

Hello,

I feel a bit of a fraud on here as you lot are going through so much worse.

I have Thoracic Outlet Syndrome where the artery and nerves into my arms are squashed by my rib and muscles. Leaves me with severe pain and numbness into both arms and hands. Had my right 1st rib and neck muscle out last year and am hoping that I can stave off surgery on the left. Also hoping not to get CRPS as it seems to go with the territory with TOS. Stellate Ganglion pulsed radiofrequency procedure coming up.

ThoughtBen10WasBadPokemonOMG Wed 20-Jun-12 07:00:47

Oh and I have a 7 year and 1 day old DS smile and lots of Batman cake left over! He has Asperger's Syndrome and dyspraxia so life is interesting around here!

ThoughtBen10WasBadPokemonOMG Wed 20-Jun-12 07:07:36

Complex regional pain syndrome (CRPS) is a poorly understood condition in which a person develops a persistent (chronic) burning pain in one of their limbs.

The pain usually develops after an injury - which is most cases is a minor injury - but the pain experienced is out of all proportion to what you would normally expect. For example, a person with CRPS may only strain their ankle but it can feel like a serious burn.

The skin of the affected body part can become very sensitive, and even the slightest touch, bump, or change in temperature can provoke a feeling of intense pain.

If left untreated the pain can spread to other parts of the body.

sad

weegiemum Thu 21-Jun-12 10:31:36

Oh that sounds awful. I get some pain with the CIDP, burning, shooting pain in my feet and occasionally hands, but it is kept under control quite well with medication.

I've just spent 2 days in hospital as I do every 4 weeks, getting IV immunoglobulin which is the only treatment at the moment for this. I'm knackered for several days but then by tomorrow or Saturday I'll have much more energy and less numbness, which is good cos we're going to a festival for the day on Saturday, it'll be the first thing like that I've tried since I got ill 6 months ago. We decided against camping, which I think is just as well, given the weather forecast for this weekend!!

Mentally I'm struggling a bit with the magnitude of all this. I'm permanently disabled, and I'm not sure how to get my head round it!

CMOTDibbler Thu 21-Jun-12 10:38:24

CRPS is manky. As well as the pain, it causes changes to your skin and bones. Yesterday I banged bad hand ever so slightly on a door - big bit of skin peeled off and I was in a lot of pain for 6 hours after, and my hand is massively swollen.

Weegie - I did online counselling with a group called Spokzpeople who specialise in disability issues, and it really helped me to accept me as who I am now, and all the body image things

Which festival are you going to ? We are off to the wedding of a MNetter, but after my first dressage competition ride

megandraper Thu 21-Jun-12 10:48:17

Hello all. I namechange a lot so may not keep this one for long, but I am registered blind, although still have some usable sight, and am partially deaf. I have a 4 yr old, 3 yr old and 1 yr old. Good idea for a thread. The 'Parents with Disabiities' topic doesn't get much usage, perhaps it should be beefed up a bit!

weegiemum Thu 21-Jun-12 15:23:28

We're going to Solas, a mini liberal artsy fartsy Christiany festival in the Scottish Borders (we live in Glasgow). Last 2 years dh and I have done volunteer pastoral support but this year clearly we're not up to that. So going as ordinary punters for a day only (it's only an hour from home).

Lots of modern Scottish folk music, Gaelic singing (my kids go to the Gaelic school in Glasgow so relish showing off!), crafts, political/environmental talks etc.... I have my folding chair so it's ok as long as it's not too slippy in the rain!!

flowerflo Fri 22-Jun-12 21:29:25

Weegie, I hope the festival goes well and you have fun. Hoping the weather isn't as bad as it is down here in the South. We have the Isle of Wight festival this weekend and it looks like a mud bath!

It's nice to have a bit of traffic on this board. I often look at it but never seems to be much going on. Hopefully we can keep it up smile

weegiemum Thu 28-Jun-12 08:35:38

I meant to get back sooner to say I coped really well at the festival! A friend lent me his walking poles and they were fantastic for keeping me steady going up and down slopes, outdoor steps with no handrails and on the boggy ground. I was exhausted by the end of the day but it was really really worth it!

megandraper Thu 28-Jun-12 08:54:19

That sounds great, weegle, glad you had a good time.

CMOTDibbler Fri 29-Jun-12 09:23:10

Those walking poles are great - my mum coped walking with them for ages before she had to start on crutches.

I've had a really bad pain week, and the overnight pain is leaving me exhausted sad

weegiemum Fri 29-Jun-12 12:41:42

I only get pain at night and it's ghastly, really feel for you CMOT! after the difficulties of a day I really need my sleep and so sleeplessness due to pain is a real burden. Hope you get a good rest tonight!

Hi, I'm registered blind but have some usable sight, however I bend a lot to look at things and my back seems to be falling apart under the strain, add carpal tunnel syndrome in my hands and basically you have a recipe for glue grin

CMOTDibbler Fri 29-Jun-12 17:51:19

Tonight is my one night a week of extra strong painkillers, so its bliss !

Hi Lola. Are you going to have surgery for the carpal tunnel ? Tis like magic

Hi CMOT, I was just about to tell them I don't want it as I'm hoping to manage.by cutting down on computer (MN) use. They are offering me the big cut rather than the keyhole procedure and I don't like the sound of it.

Am I being hasty?

CMOTDibbler Fri 29-Jun-12 19:07:34

My mum, aunt, and next door neighbour have all had both wrists done (I've had Bad Arm done, and could do with the other, but thats another story), and they all tried to put it off, then wondered why after. Its not that big a cut, and very shallow really.
My neighbour had both wrists done together, and it was really only two days that she was incapacitated, and she said the relief was instant.

Reenypip Fri 29-Jun-12 22:31:41

Hi, I've just come out of hospital from another operation. Finding it extra difficult than usual.

darksecret Mon 02-Jul-12 01:31:08

weegiemum I'm definitely going to Solas next year, it sounds amazing!

Rollersara Mon 02-Jul-12 18:28:32

Hello! I have a neurological condition called dystonia which means learned movements (walking, writing, speech) are difficult. Muscle spasms in my wrists mean I have severe carpal tunnel and will be going for surgery soon, glad to hear the positive stories!

CMOTDibbler Mon 02-Jul-12 19:04:01

How are you doing Reeny ?

Hi Rollersara, nice to meet you. I have a bit of dystonia, and have botox for it, which is brilliant. Good luck with the cts surgery

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