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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

SunnyCarrie Tue 03-Jul-12 11:26:45

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

SunnyCarrie Tue 03-Jul-12 11:28:15

Sorry that should be how to play with baby when you CAN NOT get on the floor hahah pesky rubbish fingers smile

Carrie x

SunnyCarrie Sun 08-Jul-12 15:50:28

Ok I have Juvenile arthritis since 15 months old, nothing like the older persons type which is wear over time on cartilage, this is an immune system fault where the immune system attacks every thing in a body, every joint can get eaten and sometimes organs are affected. I had a hip replacement at 12 but many other ops before that, took my A level exams and uni finals in hospital hitched to an IV of morphine after my latest replacement surgery each time.

I have limited mobility and deformed joints and have annual surgery. I have been on chemo type medication injections since I was 8 years old.

I have a toddler boy who is healthy and my joy. He is a bright little man, so proud of him.

I don't know what it is to run, sit on a sandy beach and build sand castles, walk up a hill and see a view or sit in fields with grass under you in the summer. I therefore don't miss these things like perhaps adults who get illness later in life do. I feel so sorry for adults who suddenly develop disabilities later in life because you can see pain all over their faces whilst their bodies learn to adapt to pain and anxiety on them whilst they work out how they will adapt etc.

I don't bother being down with my arthritis because that doesn't draw people in my experience, in fact it is quite normal for people who are well to shy away because really what can they say, they don't know what to say to make it better and really nothing can be said to change things so I smile and happily enjoy what I can in life. This seems a positive way to deal with things to me. It had worked for me in many ways but at times when am very ill it can be a little isolating as I don't want friends to see me having to be wheeled on a commode to the toilet which is what happens for quite a while after surgery both in and out of hospital.

I have good friends, all healthy and most athletic who often forget I am unwell despite clear visual cues of wheelchair and wonky hands etc but I love them when they say hey let's all go ice skating, I love them because I feel proud I am doing a great job of making them see past disability which not only is great for me but for others with disabilities that they meet smile I never do go ice skating clearly but I am the social organiser or glue as they say of the group so if I don't organise it it doesnt happen!

Nice to talk to you, this is a good place to come when I need support which to be fair my mates think I am so grounded and strong I am their counsellor never other way around which gets a little exhausting on top of being a mummy on top of coping with rubbish body difficulties.

Right I am organising a retro party next so best go feed my son,read him some books and start thinking of ye olde games to do at party that I ,and my husband who also has youth arthritis, can whoop their bottoms at heeheehee.

I love festivals by the way, has any one been to the Larmer festival ? Isn't there supposed to be a children's festival with Zingzillas and Mr Tumble etc ? Can't remember what it is called but think it is in Devon, sounds a good time for little ones smile

I have an apointmen about carpel tunnel surgery on Friday. At the moment I'm going for it (resting just isn't cutting it!) but I may lose my nerve....

Rollersara Mon 09-Jul-12 10:07:06

Let me know how you get on Lola, I'm having both wrists done next month, just waiting for a date!

NoHaudinMaWheest Mon 09-Jul-12 13:56:15

Hi thought I'd join in. Waves to Lola and Ben10. I have ME and am having a relapse at the moment. I have DS 15 and DD 12. DS has Aspergers syndrome and Obsessive Compulsive Disorder the latter severely. I have also had carpal tunnel syndrome and had both wrists operated on. I would say go for it - it makes an enormous difference. I had my right hand done last year. I had been putting it off for years because of DS's needs but it was such a relief to get it done finally. It did take a while to recover (about 2 weeks to get the use of my hand back). But I can now write type sew without having to stop every 2 minutes. I would definitely recommend it even though in my case I still have residual symptoms. In my (pretty extensive) experience nothing else works. Good luck with the appointment Lola!

flowerflo Mon 09-Jul-12 14:17:21

Hello all. Sunnycarrie - I went to the Larmer tree festival a couple of years ago. Really loved it - good mixture of music, arts, comedy etc. I also went to the End of the Road festival last summer when I was pregnant (same venue as Larmer tree). I did enjoy it but stupidly the disabled camping was down a hill????!!!! I camped in the general area and it was much easier. I can walk but am slow and find it painful, so couldn't cope with a larger festival but Larmer tree is just perfect.

weegiemum Thu 12-Jul-12 23:45:39

I'm so proud of myself I had to tell someone! I'm on holiday atm in the Outer Hebrides, the only sunny place in the country as far as I can tell! And while we've been up this time ( we lived there for 10 years before we moved to Glasgow) I've managed to walk on sand, sew up a hole in my trousers and paint on stones with the kids. I've also done some cooking and baking!!

I know it doesn't seem like much, but when you think that 6 months ago I couldn't walk unassisted, couldn't feed myself or wash myself, couldn't hold a pen (still can't really write) and had horrible vertigo the whole time and was constantly throwing up. I still have bad days/weeks and I still can't walk very far, but it does me good to look back and see how far I've come!

Now if only I could relearn how to do my bra up behind my back .....,

CMOTDibbler Fri 13-Jul-12 09:31:38

Fab news Weegie !
Doing your bra up behind your back is highly overrated imo, though I was delighted when I could do a bra up at all

NoHaudinMaWheest Fri 13-Jul-12 21:02:43

Weegie great news! I'm sure it was a man who invented bras that do up at the back!

Flooded Fri 13-Jul-12 23:59:11

Hi, I also regularly name change as it would he quite easy for someone to figure me out in rl. Don't have children but ttc. Done it a bit backward as after 5 years deciding, spent a year researching equipment/help/practicing with friends kids before we decided to go for it. I have a connective tissue disorder and use a wheelchair. But the thing for us is I have a 50% of passing it on to a baby, but they cannot screen for it until baby is born. So that's what took us 5 years to decide

flowerflo Sat 14-Jul-12 08:13:17

Great news weegie. Hi flooded, nice to meet you. It took us a long time to decide to have children too but as soon as I was pregnant I never looked back smile I've coped with motherhood much more easily than everyone thought I would. Have spent lots of time researching and buying equipment to make the physical demands easier. Good luck xx

Rollersara Sat 14-Jul-12 11:06:47

Ahh, weegie, we go up that way often, just got back from Arran this year, which seems a bit wussy by comparison!

Carpal tunnel surgery is an interesting one for me as my hands are so screwed due to dystonia I didn't even know I had the syndrome until a specialist suggested tests when I was in for something else altogether. For me, surgery won't make anything much better, just stop it getting worse sad

Oh, and the reason I was seeing the specialist was to discuss the chances of DD inheriting my condition. They still can't tell, and won't be able to until she is walking, but as flowerflo said, motherhood hasn't been as hard as I expected, have lots of high tech and not so high tech aids to help...

Flooded Sat 14-Jul-12 12:52:25

Can I ask where you got lost of your help/gadgets from. was it OT or just your own research/trial and error. Good to hear that people find it easier than expected

weegiemum Sun 15-Jul-12 07:24:03

Most of my stuff (I don't have much really) came through the rehab OT. I was given walking poles by a friend and theyve been a complete revelation to me!
Arran isn't wussy at all! We go to the outer Hebrides a lot as we used to live here and we still have our house here which we rent to tourists and just block off the weeks we want to come.
I don't envy those of you who have to worry about passing things on to your dc. I've been told that it's likely the susceptability to immunological diseases is inherited, the specific illnesses aren't. However I do have mild (at the moment) rheumatoid arthritis as well as the CIDP which both my Grans had, so I sometimes wonder about that, and my condition is related to MS, which my cousin has. It's a minefield!

flowerflo Sun 15-Jul-12 08:20:19

I got the standard stuff from OT (bath board, raised toilet seat, stair rails, bed raisers, walking stick). I also had my cot adapted by a charity called remap (it's fab- higher than normal with opening door sides). However I've worked out lots of things for myself and been a bit creative. Have tried out all baby equipment to find out what works best for me. I initially used the troll crib as its adjustable height with a drop down side and it can go next to my bed so I didn't need to get up in the night. I always had a Moses basket or baby bouncer on the sofa next to me so I didn't have to bend to the floor. I have a stokke xplory buggy - nice and high and sturdy enough to lean on to help me get up. I use the buggy in the house as I can't lift very well or walk around carrying dd very much. Have a stretchy wrap sling so my hands are free to hold the rails when I take her up and down stairs ( but only do this if no-one about to help). I tied scarves to the baby bouncer chair so it's like a sleigh so I can pull her around! When she was first born I practiced everything over and over again with my partner to work out what I could and couldn't do. It's amazing how much I can do although there are only certain places I would go to alone. I checked out all the baby changing facilities in local shops but many are too low for me but I can change her in her pram if I sit down. (have done this many times in the disabled loo!). I can cope very well at home but hate going to other peoples houses or baby groups as I need more help there. I'm coping as she becomes heavier too as I'm so used to handling her, we adapt together. I can't handle other babies in the same way as I'm not tuned in to their weight, shape, movements etc but with dd I'm fine. I think the way I pick her up is pretty unconventional but she's fine with it! I've just bought a few bits of equipment off eBay for when she starts walking - gonna try them all and see what's best. Can't bath her at all, but that's daddy's job!

Rollersara Sun 15-Jul-12 19:29:23

Whereabouts on the Outer Hebrides are you weegie? We've done the Uists, Lewis and Harris, definitely want to go back to Harris! Skye is my favourite island so far though!

For me, things have been research, hit and miss, and a very good OT. I have a bednest which has been excellent so I don't have to get up to get DD. An ipad and kindle have kept boredom at bay, and a sling for carrying DD up and downstairs has been vital (as has having two changing stations, one on each floor so I don't have to do that too often!). OT gave me a special bean bag cushion as I can't do many of the traditional breastfeeding holds. OT is also coming back when DD is a bit bigger to discuss how to handle a toddler from a wheelchair (suggestions welcome!).

As flowerflo says though, the most important thing has been practice, especially in carrying DD. And trial and error - a lovely friend lent me three slings/carriers to try so I could find the one that worked best for us (a Babybjorn).

Reenypip Sun 15-Jul-12 22:44:41

Hi rollersara, how do you currently get up and downstairs with your little one? You say you carry her in a sling/carrier?
My partner or who ever else does all the carrying for me, but if he can't or I have a try, I sat him on my lap, while I bum shuffled down each step.
My boy is 14 months, and has been able to climb up since about 9 months, which is a great help, rather than having to lift him up myself. By this I mean, he can get on the settee himself plus he can climb the stairs (with someone watching close behind), and he can also step onto my foot plates on my wheelchair so he is higher up to get on my lap.
Make sure there are baby gates on stairs, kitchen etc. because if your toddler speeds off and gets in area you can't, it's extremely difficult, especially when you tell them no and call them to you, they don't always listen.
I'm a first time mum too, so I'm constantly learning how to adapt.

Rollersara Mon 16-Jul-12 18:32:14

I use a BabyBjorn carrier, or shuffle down which I'll have to do more often as sheis getting heavy!

Do you have a way of carrying him in your wheelchair?

weegiemum Tue 17-Jul-12 16:20:07

Rollersara
We lived in Lewis for 2 years then Harris for 8.5 years. Dh was the GP in Tarbert. We kept our house there and rent it out and have our own holidays mainly there. We live in Glasgow now.

These 2 weeks just past were the first time I'd been there since my disability took hold at new year, and it actually worked out very well. With my new walking poles I was even able to paddle!!

You ever need any tips for Harris let me know!!

madhairday Wed 18-Jul-12 12:43:01

Hello, can I join in? Only just seen this, I come on here from time to time but there's very little traffic on here so good to see this.

<waves to weegie>

I have a progressive lung disease called bronchiectasis which is a sister disease to cystic fibrosis and has the same treatment. I've had it all my life but in the last few years I've had more lung damage from infections and so quality of life has gone down dramatically - no longer able to work (teacher) and just concentrate on getting through the day really, as many of you do. I get so cross when people tell me what I should be doing - thinking they're helping by giving me positive ideas but actually making me feel worse, thinking they must think I'm of no use and need to be more useful - seem to have come across a fair amount of this lately. 'Well, couldn't you join this committee/help out in school/tutor children etc? you have so much time on your hands!' Grrrrr!

OK mini rant there...obviously on my mind today!

I have two dc, an 11 year old dd who has dyspraxia, psoriasis and hearing loss so we're forever chasing appts with her bless her, and an 8 yr old ds.

Nice to meet you all.

weegiemum Wed 18-Jul-12 16:41:13

Hi MHD nice to 'see' you here.
Thanks for explaining your condition, I actually didn't know all that - sounds ghastly. I'm just out of hospital after my 2 days of treatment and totally exhausted as usual - luckily dh is working away this week and kids are with my parents, so I can chill!!

weegiemum Wed 18-Jul-12 16:47:07

I also realised that I've never said my dd2 (8) has a disability - perthes syndrome which is a hip problem. When she was 4 her right hip joint died off and crumbled. She was in a lot of pain and off her legs for about 2 years, but is now allowed to be active again. There's still a 50:50 chance she'll need a bone graft on her hip socket. I'm glad she's up and about but since the CIDP started for me, I'm missing pushing her major buggy - it would have given me a bit of stability!!

madhairday Fri 20-Jul-12 19:59:25

Oh weegie your poor dd, sounds so hard for her sad

How are you feeling today?

I'm feeling cross with dd's school as they haven't given her enough support with her dyspraxia. And cross with myself for not pushing more. Have had such a crap year with my lungs and not had the energy, but still cross with myself.

darksecret Fri 20-Jul-12 22:34:11

Hi everyone,
I'm new to the thread and hope there's room for one more. I have a beautiful eleven month old daughter and am in a wheelchair as a result of pelvic damage during the pregnancy. It's been a huge life adjustment. I have been reading through the posts here and am very encouraged by the supportive 'can do' attitude here. Weegie, we'd hoped to go on a holiday this year but decided it was just too complicated and expensive in the end, so massively impressed.
I'm also humbled by how courageous you all are. Thank you for sharing. You never know who you are helping.

flowerflo Sat 21-Jul-12 07:27:44

Hi dark secret. Sorry to hear about your pelvic damage. Is it likely to ever improve? Must have been a horrible shock and you are right, it is a huge life adjustment. (congratulations on your daughter though). I don't know about you, but whenever I'm having a bad day I look at my beautiful little girl smiling away and it makes it all ok smile Planning holidays is complicated isn't it! I can walk but have to make sure there aren't too many stairs or steep hills and that I can plug my bipap in at night etc. Travel insurance is a nightmare too. Gone are the days of just looking online and booking it! However I have some friends who use wheelchairs and ventilators to breathe and they travel abroad often, so it's possible, just needs lots of planning. At the moment it's like a military operation for me just to go to the shops smile

Hello! I am deaf (small amount of hearing in one ear) and have three hearing DDs aged 6 (well, she is 6 on Monday) 3 and 7mths. My hearing loss is sensori-neural so although I can often hear sound, I find it hard to distinguish words.

I also have some brain damage from a vaccine reaction which causes problems with the connections between the two sides of my brain which mean I am uncoordinated, have balance problems and a lopsided smile!

My DD1 is finding having to stop what she is doing and face me while talking annoying at the moment, both of the older ones get really cross when we are out because I can't understand speech while there is car noise going on!

DoubleLifeIsALifeHalved Sat 28-Jul-12 03:07:18

Hi there good idea for a thread, just short hello post as in pain typing. Will return!

radicalsubstitution Thu 02-Aug-12 20:54:34

Can I join you all? I am a mum to a DS (6) and a DD (2). Two years ago I was diagnosed with a form of juvenile macular degeneration and I am now registered as partially sighted. My peripheral vision is perfectly ok, but central vision is non-existent. This means I can run for the bus but am pretty sure I must get 'funny looks' when I produce my disabled bus pass (luckily I can't see their faces).

Unfortunately, the diagnosis came at the same time that DD was diagnosed with a large hole in the heart. 2010 was not a good year for us.

Anyway, two years on and DD's heart has been well and truly fixed thanks to GOSH (although she now has a serious 'attitutude' that wasn't there before) and I am back at work as a Chemistry teacher. I get a lot of support through Access to Work who funded lots of equipment as well as a support worker.

Hi Radical, I'm also VI and also a chemist smile

Just wanted to update those I've talked to about my carpel tunnel surgery. It's booked for a week tomorrow. (if I don't chicken out!)

Rollersara Mon 06-Aug-12 14:26:59

Hey Lola, that's the same day as me! Not in one of the Oxford hospitals are you!?

radicalsubstitution Tue 07-Aug-12 09:45:06

Good luck with the surgery Lola.

CMOTDibbler Tue 07-Aug-12 09:56:52

Good luck Lola - is it at the Nuffield ? You really won't regret it.

I'm in Yorkshire. Its all getting a bit scary but every time I think about it my hand hurts even more so u know I have to get it sorted.... Will check in with you afterwards (when I can use my hand again)

Rollersara Fri 10-Aug-12 19:46:56

I'm at the Nuffield CMOTDibbler, they've been very good in the past at the Centre for Enablement (hate the name though!), hoping the hand clinic is as good ...

Good luck lola!

can I join till April2011 i was single mum to 4 children , youngest has sn himself had eds 3 but no major issues and ended up with back pain and problems with my bladder and in a&E but vy that time it was to late and most the nerves in my spine had been sawn through so other than a toe and feeling pain no movement and no recovery been told

So now am a full time wheelchair user and still a single mum after some really shitty months life is now good and moved into adapted house one week before xmas which helps a lot

weegiemum Tue 14-Aug-12 10:20:50

So great to have so many mums here, even though so many have such severe problems!

I'm back in hospital tomorrow for my IV treatment which I need as I can't walk without support since the weekend.

My eldest child (dd1) starts high school tomorrow (it's S1 in Scotland, y7 in England) and I feel ancient! But the ghastly neurological pain kind of keeps my mind off it!

weegiemum Wed 15-Aug-12 21:33:59

My great big girl got on fine today, got the bus no problem and we picked her up and had a good chat after (dh's day off!). But I ended up staying in the car when we picked her up (we were held up 10 mins so she went to the park with her friends). Cos her friends all know about my disability but I let dh go and get her, cos I don't want to embarass her sad.

She shouldn't be embarrassed about having a disabled mum. But it's not easy when you're 12!

Update on CT surgery. Was very icky thing to have done but so far (just over 24h). The pain is surprisingly manageable compared to the pain of the flare ups!

How are you doing Roller? Did you have keyhole or open surgery(like me) ?

Rollersara Thu 16-Aug-12 09:02:48

Hello Lola, was thinking of you!

I'm doing ok, pain is manageable and hoping to take the bandages off today! More movement than I thought I'd have too (like typing!).

I think I had open surgery but I was under a general anaesthetic so I'm not sure!

You had a general! They refused to give me one (did my best not to watch but all the tapping and tugging grossed me out big time). Probably for the best though as generals make me very very sick. The whole op took only 7 mins by the way!

The pain is only really bad when I knock something over and catch it with my bad hand without thinking. I'm extremely clumsy so this has happened half a dozen times today already.

I'm also finding that I'm holding it still and in a fist. It's getting stiff so I know I'm doing bad but I'm freaked out by the tugging feeling in my stitches when I move my fingers.

Glad to hear you are doing well. How does your hand feel when you type? Does it feel like they have helped the original problem?

Rollersara Fri 17-Aug-12 08:29:04

I had to have a general as I couldn't keep my hands still enough for the ecamination, let alone surgery! It was quite unpleasant as they had to put the injection and drip in my feet, which are still quite bruised.

The numbness I had pre surgery has almost gone though, before I was waking up a few times a night with horrible pins and needles but that has completely gone.

Same as you with the clumsiness though, have hurt myself a few time that way. Took the bandages off yesterday to change the dressing and the left looks gruesome but healing but the right the wound is gaping a bit. Might go to the GP tomorrow.

When do you get your stitches out?

You had both done! I feel a complete baby now..... Only had my right done.

Have you just got dressings on the palm of your hands? I feel naked without my bandage and it hurts now its not supported. I've had it in a splint and then a sling trying to get comfortable.

I've still got the throbbing and numbness on my index finger that I had before op. hope that's not a sign that it hasn't worked.....

Rollersara Sat 18-Aug-12 21:30:30

Ha,I put the bandages back on! The dressings didn't seem at all secure and offered no support so I thought it was better to put them back! I've had a splint on yesterday too <wuss>!

I've got pins and needles in two fingers now confused

weegiemum Thu 30-Aug-12 08:27:05

Just popping in to say hi!
I'm feeling pretty crappy just now, it's just my head not coping very well with the permanence of my condition. I'm lonely at home now the children have gone back to school! We moved house 3 months ago as I couldn't cope in the old house and I miss my friendly neighbours, round here everyone works full time.
I'm back at work myself this week - I teach young mums basic literacy and numeracy, and I'm getting a whole new class starting on Tuesday. I'm looking forward to it, though getting there is a bit of achallenge. I think I'll be more positive once I'm back at work.

Mumonwheels Sat 01-Sep-12 00:45:35

Hi

I was wondering if any of you might be prepared to offer me some advice / support? As a new "Mum to be" I guess a lot of my concerns are related to becoming a Mum. I am sure these feelings of anxiety have been experienced by many of you and I know that they will diminish once I give birth and am getting on with being a Mum. However, doing it alone does make it scarier. In addition I am disabled and the combination of theses three sources of anxiety are making me start to feel more anxious about having my baby. Please don't misunderstand me, this baby is VERY wanted. I fought long hard medical battles to get pregnant including undergoing 2 lots of surgery and according to the doctors I am risking my life by being pregnant. But I know it will all be worth it. I have always wanted a baby but medically have been told to wait for this operation or that recovery and in the end I had to go against them as I felt it was now or never if I was to get pregnant. Even though I do not currently have a partner I decided I would not let that stop me from going for my dream.

Disability wise the situation is complex - but briefly - I have rods in my back from my neck to my hips. The surgery to insert these did not go well and I was left paraplegic (incomplete T6/7). I have an underlying disorder of my connective tissue (Ehlers Danlos Syndrome - EDS) so my joints get injured and dislocate more easily. The combination of the spinal cord damage and EDS led to my large bowel stopping working so I had to have an ileostomy (bowel empties into a bag on my tummy). When they did this surgery I went into intestinal failure with my stomach and small bowel becoming problematic. As a result I spent 7 months in hospital and now have a line which goes through my chest into my heart - I have spent the last 2 years setting up drips at home - this gives me extra nutrition (TPN) and extra fluids. Encephalitis after the spinal surgery led to my pituitary gland being damaged so I am steroid dependent and worst of all it damaged the sleep centre of my brain so I have a sleep disorder similar to narcolepsy, (I get warning I need to sleep and I take drugs to help control it - but it is still the biggest disability to me).

Although I have some support and help through carers, I am still worried about being a Mum with so many medical challenges. However, I am bright, I was a primary school teacher and a Paralympic swimmer (before my medical problems escalated), so I know that with determination anything can be achieved.

Do any of you have any advice regarding using a wheelchair and - cots, bathing, changing tables, carrying baby, travelling round?

Also any suggestions on what I can do now to make my life easier for when the baby is born?

Many thanks, Fi

PS Hi and best wishes to all of you Mum's and Mum's to be especially those with additional challenges!

weegiemum Sat 01-Sep-12 09:26:07

Hi Fi, you are incredibly brave having a baby with these challenges! I'm slightly in awe. My disability (CIDP) only started about 9 months ago and my children are all at school so I can't really advise you much (I'm very good on the subject of pre-teen tantrums!!) but there are several folks here who do know loads about adapting. It's nice to meet you and I wish you all the best for your pregnancy aand beyond.....

Mumonwheels Sat 01-Sep-12 15:35:44

Hi Weegie Mum

Thank you for your lovely reply. I don't think I am brave, stubborn maybe?! I just truly believe that I can offer a child a good quality of life and I think if I were to let things like my medical conditions stop me from following my dreams, it would be like giving up. Medicine is developing all the time and maybe they will resolve some of my medical problems in the not too distant future. If I had not tried for a child now and I waited for things to change, how hard would it be to be lots better but it to be too late to try? My biggest concern was that I had to make sure that I knew I could look after and support a new life (even if my medical condition did not change). This has taken a lot of soul searching, looking at finances, support I have and could bring in if needed. Children need stability and to be able to be children and I am anxious that my child is never a "young carer" or that they feel they missed out by having me as a Mum. When I was Primary School teacher I managed to achieve this to such a point that the kids actually thought it would be cool to be in a wheelchair and they were proud to have had the chance to try sports that other teachers did not do with them. I took my kids out on the playing field and with a special motorbike attachment to my chair I was able to move round the field with them teaching them basic skills in everything from cricket to hurdling. A lot of people have expressed concerns about my being pregnant and having a child. But this seems to be the story of my life. People doubt you because you are disabled and you almost have to be better than just good for them to accept that actually you can do something and do it well!

Thank you for taking the time to reply and good luck to you with your family.

Very best wishes, Fi

flowerflo Sat 01-Sep-12 22:21:36

Mumonwheels, you sound amazing and will be a great mum. When is your baby due? My disability is very different to yours, but I wanted to reassure you that you will be fine and will adapt with your child. My dd is 7 months old and I have coped much better than people thought I would. I can't handle other children and babies, but me and my dd have grown together. My problems are with strength and stability (I have a muscle wasting disease) but I have found equipment that helps and developed ways of handling my baby. I would highly recommend the charity remap who adapted a cot to meet my needs. I use a sling sometimes to carry my baby so imagine this would be useful for carrying a baby in your wheelchair. I never used a changing table, it was easier for me to use the bed or the floor (less lifting). I had a bedside crib initially which meant I could see to her independently in the night. Little things like having a moses basket or bouncy chair on the sofa in the early days meant i didnt have to move too far. I could waffle on all day about what worked for me, but what I've learnt is that there is often a solution, it just sometimes takes trial and error to find it!. Try out as many bits of equipment as you can (I find the expensive things often suit me the best typically!)

Rollersara Sun 02-Sep-12 07:04:52

Hello mumonwheels (and everyone else!), congratulations and I hope your pregnancy is going well!

I don't know where you are in the country but I have found some very good support services in my area, particularly a specialist OT who came round my house with a pretend baby when I was pregnant so I could try a range of tools and techniques for looking after the real thing! I am in the South of England.

Unfortunately for me it has been largely trial and error so what worked for me may not work for you, but as flowerflo mentioned bedside cribs are great, if expensive (I had this one, which is great!). Slings have also been my friend, especially the BabyBjorn which I use when I'm on crutches. I haven't been out in my wheelchair on my own with DD I'm afraid, it was too much of a challenge. However, the OT I mentioned said that she is aware of something Remap made that was a kind of bicycle seat that goes on your lap with a seatbelt for the baby. Certainly get in touch with Remap as soon as you can.

I did all the changing on the floor as well, and had several changing stations around the house which makes things much easier. I also second what flowerflo said about you and baby growing together. My mum was looking after me and DD recently after I had surgery and was really worried about carrying her downstairs. She was surprised to find that DD (who is naturally lively and a wriggler!) goes very still and holds on tight to go up and downstairs, somehow she has understood she needs to do this when mummy (or grandma) is carrying her.

Good luck!

Mumonwheels Mon 03-Sep-12 21:26:04

Hi Flowerflo, thank you for your great reply. My baby is due on the 20th of January next year. I am excited as I have my 20 week scan tomorrow morning. It seems to have taken forever to come round!

It seems amazing your child seems to know to sit still for you - was that right from the start?

I will definitely get in touch with REMAP. I am hoping to be able use a sling to carry the baby a lot of the time but I am a little worried how much the weight might pull on my back and shoulders. Can you tell me what you found worked for bathing your baby? What other equipment did you find helpful? I know different things work for different people and although I do not have a muscle wasting disease my joints are quite weak from the connective tissue disorder and a joint condition which affects my hands (psoriatic arthropathy).

How old is your child now? Did you face any problems with other's attitudes with people thinking you should not have had a child?

Thank you for taking the time to reply.

Very best wishes,

Fiona

Mumonwheels Mon 03-Sep-12 21:51:53

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...

http://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...

http://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

Rollersara Wed 05-Sep-12 14:40:32

Just written a long PM and it disappeared angry, 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.

LadySybildeChocolate Wed 05-Sep-12 14:45:17

Hi smile

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. wine

Rollersara Wed 05-Sep-12 14:58:55

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 sad

MeanAndMeaslyMiddleAges Fri 07-Sep-12 02:05:38

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.

Andreadl Mon 10-Sep-12 09:36:24

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 sad

Anyway, hello all! smile

weegiemum Mon 10-Sep-12 15:53:30

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!!

gallifrey Tue 11-Sep-12 17:00:33

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.

Rollersara Tue 11-Sep-12 17:36:06

Hi newcomers smile

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?

gallifrey Tue 11-Sep-12 18:21:54

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!

madhairday Tue 11-Sep-12 19:53:23

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.

beabea81 Tue 11-Sep-12 21:45:59

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 : )

weegiemum Sun 16-Sep-12 02:39:05

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.

Rollersara Wed 26-Sep-12 20:35:15

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 sad 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,

Rollersara Thu 27-Sep-12 19:40:52

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 sad

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 grin

Rollersara Thu 27-Sep-12 20:58:24

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!).

weegiemum Sun 30-Sep-12 09:09:56

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.

weegiemum Sun 30-Sep-12 10:25:09

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.....

weegiemum Sun 30-Sep-12 14:08:56

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!

It sounds like you are in the best place then, I have always found the NHS a mixed blessing. The only time I need much care is when they've tried to help.... I believe I'm only blind because if the treatment I had on the NHS as a child (but there are no records so it's hard to know for sure)

flowerflo Fri 22-Mar-13 20:39:42

Mumonwheels - just wondered how you are getting on with your baby? I always meant to come back to this thread but don't use mumsnet very often. If you are still using mumsnet I'd love to hear how you are xxx

Fizzbizz Fri 05-Apr-13 12:40:08

I have a very active two yr old boy. My mobilty is greatly reduced due to Multiple Sclerosis which is a degenerative disease. My husband works full time which means I mind our son. I cannot leave the house with him on my own. I don't get any help with childcare. Is there anyone in a similar situation?

gallifrey Fri 05-Apr-13 13:43:15

fizzbizz yes I am in the same situation as you. I have a 9 year old daughter and a 2 year old daughter. I am pretty much on my own with the little one all day. I find it really hard to go out on my own with her and either have to wait for dh to get in from work or get my other daughter to come and run round after the toddler. I have GBS and fibromyalgia.

Reenypip Tue 09-Jul-13 11:38:56
andreaglamite Fri 19-Jul-13 08:16:09

I am disabled mum with Narcolepsy and Cataplexy.
My son who, s 6 has special needs.
Trying to get a diagnosis and the correct help in school has become unbearable I try not too worry or take things personally but its so hard especially as I dont no whats wrong with him he went on a school trip and gave away his biscuits well he gave everyone in the class one I got upset with the school for letting him im not a bad person I just worry about him.
Sometimes I feel like nobody understands how hard it is I wish there was more support because most of the time its other people's lack of understanding that makes life hard more than the disability itself.

Reenypip Fri 19-Jul-13 10:51:46

Hello :-) I've posted before further down and on different topics.
I'll re-introduce myself briefly.
I'm now 27 and have a 10 week old baby girl and a 2 year old boy. I'm a wheelchair user and have multiple chronic health problems (wont list them all)....I use a wheelchair because I've had past 3 burst fractured vertebrae, both fractured feet, and damage (incomplete) to my spinal cord and nerves, in an accident.
I have a blog which I occasionally update
rhiangregory.wordpress.com
www.rhiangregory.eu

I made a Facebook group a while ago called disabled parents unite.
It's a private / request to join group. Feel free to search for it and ill add you in.

gallifrey Fri 19-Jul-13 15:47:29

I believe they are introducing free nursery placements for 2 year olds for parents that receive certain benefits ESA being one of them. worth having a look in to.
I don't qualify because my ESA is contribution based sad

newmummynow Wed 24-Jul-13 19:08:55

hi im mum to my 1 month old son and my disability is that I had a brain tumour when I as 11. My partner is disabled to he was hit by a car when he was 4 and can only use his left side. We've found these first weeks hard with child services and are hoping it will get better sometime soon.
grin)

Secretswitch Wed 24-Jul-13 21:22:52

Hi, I'm a mum of three. I have a prosthetic leg and hip replacement. I also have a seizure disorder,
I just want to cry right now. There is a thread in AIBU about a woman who pulled a customer up on her attitude towards disabled people. I am also sad and hurt by the comments being made by other posters, things like "people have to stop being overly sensitive about disability"
I just don't know how not to be sensitive since I AM DISABLED...
I am sorry if I posted in the wrong place. My heart just hurts..

Hi everyone, great to read the posts (manged about half atm). I suffer with epilepsy and DCD(dyspraxia).
The main problems I have as well as 'not looking disabled', are that my memory is really bad, to the extent that I can forget what someone has said the second they stop talking. I also find it hard to do things in the right order, makes cooking and housework complicated! People who don't have the condition can not seem to understand that I do actualy listen to what they r saying just can't always understand what they r saying even the most basic things like make me a cup of tea. I also spend half my time walking around the house trying to remember where I put things and what I came in to get!! hmm
I also find it hard to 'get to the point' and to know when to stop talking so sorry my posts will probably be very long winded.

Hello, another "invisible" disability here - psoriatic arthritis doesnt look invisible to me when I'm all swollen, but other people seem to think I'm overdramatising it

Have been struggling carrying on as normal as possible for a year since I was diagnosed, housework is never done and DH is struggling being carer/working full time, so am determined to do anything I can to "help" it.

Oo btw, mum of two boys, 16m and 2.10 smile

Btw I have dd(9), who also has dcd and ds(6).

lauz8710 Fri 09-Aug-13 16:50:23

Hi everyone, i have an un diagnosed form of Congenital Myopothy, I can only walk short disatances and have weak arms causing problems with simple things like brushing hair, teeth ect, I have a gorgeous little boy whose 2 and a half but because of my condition I can't take him out on my own much which is really frustrating, is there anyoneone with a similar condition out there? smile

flowerflo Sun 11-Aug-13 20:04:20

Hi Lauz8710. I have a muscle wasting disease too, which mostly affects my core muscles, legs and breathing. My little girl is 18 months. I was able to take her out on my own before, but now she's mobile it's getting more difficult. I can't pick her up from the floor or run after her so I need someone with me to go out most of the time. I had an awful situation in a car park the other day. She wouldn't get in the buggy so we both ended up having to sit on the floor until her tantrum was over! People looked at me very strangely! She's very independent and climbs in/out of buggy, high chair etc, but she's developing her free will at the moment and pushing the boundaries! I have to make everything into a game so she cooperates with me smile

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