Why has this upset me so much?

[Weegle]

In the 3 hours since I woke up I've gone from being happy to balling my eyes out. DS (14 mo) is being a toerag with teeth/cold and then bloke turned up (unannounced) to fit some adaptations to my home to help me cope - I have ankylosing spondylitis, very painful condition affecting spine/pelvis and other joints. These included raised toilet seats. I just don't want them. I know they will help but I don't want a stark reminder of where this condition is going to leave me. I don't want my home looking like a nursing home. And now I seem to have gone months backwards in how I feel about my diagnosis. I had got my head round things and was being positive about the future etc and now I just feel like what's the point? I want to be a normal mum who can do normal things not someone who needs raised toilet seats etc. What I really need by way of adaptations to the home are things like an easier car seat, a better means of getting the pushchair in/out of the car but my OT only seemed interested in my care needs - not what I need to do as a mum. In fact I'm not even sure she had any experience of aids for parents, she made out I was an oddity. Sorry for waffling on, I just needed to get this off my chest. Has anyone else been in a similar position? Tell me it gets easier!

I'm sorry you are feeling like that and hope someone with more experience come soon with better advice but thought of mentioning... are the adaptations to the toilet removable? if so you can hide them out of the way and use them when you are not feeling well. If it is a more permanent fixture... well this is stupid of me but I had an aunt who had a higher toilet fitted and I loved it! it was so comfy! also remember loving to sit on it as a child dangling my feet!

Thank you for replying. Yes they are removable but not quickly so I could remove them and get DH to put them back only when I am really bad but I couldn't e.g. have them on for me, but not for DH guests etc and it is quite fiddly. I know I feel irrationally about it. I can now see why my Gran kicked up a stink having stuff done to her home and there we all were saying "but it'll make things easier for you"... emotionally it just doesn't work like that!

Not sure what else I can say, as I'm not exactly in the best position to advice, but this remind me of something.

My son has severe food allergies and the sole arrival of a birthday party invitation stressed me out. Showing up at the party with DS's lunch bag felt like a public declaration that something is wrong with him, that he was not the same as other children, and the thought that he couldn't do simple things that other children could was enough to reduce me to tears. But the truth is, people don't care that much, they mind their own business and are able to continue seeing the person behind the condition, so please take it easy, it will be difficult at first but eventually you will get used to it.

My dad had a below hip amputation and mounted the loo itself on a plinth so he didn't need a raised seat. I, as a toddler at the time, needed an extra step once toilet trained, but it meant that he had the adjustments he needed without making things that different for the rest of the family.
He wasn't able to do the active things, but the best thing my dad did was give me his time.

Get your OT out again to do another assessment as they should cover all aspects of your daily activities. When you say car seat, do you mean yours or DC's? If it's yours you are having trouble getting in / out of, try putting a plastic bag on the seat to help you swivel.

I have just been diagnosed with rheumatoid arthritis (today in fact ) and have nearly been stuck on the loo when my knees wouldn't let me get up. At least DS is only 7 weeks old and not potentially running around the house causing havoc (yet).

Just remember, when life gives you lemons, make lemonade.

thank you! and sorry to hear about your diagnosis - AS is quite similar to RA so feel free to come on and have a natter! My DH rang the OT after I balled down the phone to him (!) and explained how it had upset me etc and she is coming out again next week, with DH there, to go over things again. Hopefully between us we can come up with different solutions which aren't white plastic/white coated metal with bright blue straps etc etc. I have seen a car seat (for DS) which rotates which would make life a lot easier. DH has taken off the toilet seats but convinced me to keep hold of them for when I'm really bad as I expect my stubborness will relent then. I guess it just shocked me how I reacted because I have been so "together" about everything but it just got to me.

ooh, yes please, I would so appreciate some handy hints as searching the internet for anything "non-clinical" is proving a fairly tiresome task. I think the thing is I'm NOT prepared to accept limitations so I keep ending up bed bound in agony and so I know I need to make changes to my lifestyle but I don't want it to come at the cost of being a good mum.

Just wanted to say I too have AS and it was really bad after dd was born worse than I've ever had it (I've been diagnosed for approx 15 years). I have to say it is a lot better now (she is nearly 4). Things do seem to get easier once they don't need lifting and also when they go into the booster seat in the car. Fortunately dd has always been tall so she was in the booster seat from 3! I would be happy to chat/share experiences whenever if you would find helpful, I know I would!

RubyRioja - thank you for those websites. I haven't had a chance to have a good look but will do this evening once DS is in bed. And please say thanks to your DH.

Pinkteddy - wow another mum on MN with AS! I've felt pretty isolated since I was diagnosed in Jan as no-one has ever heard of it before! It's so encouraging to hear how things get better. But I am worried about another pregnancy/baby, just not sure it's even an option any more. DS too is tall (and heavy) so I'm guessing he'll be in a booster early too and I can see how that would make a big difference. How did you cope with this stage when they are just starting toddling? I'm getting quite nervous about when he can run away from me and I won't be able to chase after him. I've already bought some backpack reins in anticpation! I would love to hear more about your experience of AS and being a mum if you are happy to share

I am pleased that the OT will be out again and hope you find some things of use through the links.
I have a friend with AS and she swims twice a week, figuring that gentle non-weightbearing exercise will help her keep her spine flexible for as long as possible.

I was a bit tired and emotional today. Mourning the future I thought I would have, I suppose.
I was trying to talk DH into having another child even in the delivery room with DS, but it would not be recommended due to the drugs and stress on my joints. Instead it will be a different, but no less interesting and fun-filled path. I'm glad that I am 36 and this hasn't happened when I was younger. I have got to a good position in my career, made a home for my DH and son, travelled the world and whilst it isn't yet time to get my pipe and slippers there isn't anything that I wanted to do that I haven't already done. So if I need to go a bit slower now and then, it won't hurt me!

Yes happy to share, ask away! I must say with regard to toddlers running away, I drummed into dd from a very young age not to do it. I did have reins and used them alot. She is and was very good. But I think girls are probably easier than boys in that respect! I know what you mean about having another one. I would love another but the thought of going through all that again fills me with dread. The pregnancy was difficult but it was immediately after dd was born that was the worst. Are you under a rheumatologist? Mine is very good, very sympathetic. Are you a member of NASS? (National Ankylosing Spondylitis Society) Worth subscribing if you haven't already. Fees very cheap. website here. Keep in touch. HTH

Yes I'm a member of NASS and also been on the AS-Assist forum but when you are used to something like MN it's so slow!

Vole3 - I also would have to come off my drugs if we try for another baby. I don't know because they are only just starting to work but then I just don't feel our family is complete yet. Bit of a quandry! DH says he's happy the way things are and doesn't want to see me in more pain (my pregnancy is what set me off). It's good that you feel happy with the way things are, it's good to be so positive. I did try swimming, and should again but I got stuck in the pool after 2 lengths and was in so much pain I couldn't move properly for a week, but that was before I was on methotrexate so maybe I should give it another go.

I'm so glad I posted, I feel a massive weight has lifted just by coming in to contact with a few others who understand where I'm coming from!

Glad you're feeling better. Feel free to post whenever, either on this thread or start another. I will keep this on my watch threads anyway. speak soon

I don't have AS, but often wonder if I do, have had lots of problems with my back especialy lower and knee and joint painfor years. Since getting pregnant with my first DS, things took a downward sprial, I had big problems with my pelvis and lower back, amongst other symptoms like severe tummy pain and felt like my bowels were being ripped out, and the tiredness is beyond being tired, have also had problems with my eyes and heart irregularity. I was ina wheelchair after DS was born and symptooms worsened dramatically, I was told I would continue to have flare ups of pain and immobility. I am now pregnant again and finding things very difficult too. I worry Iam not going to be a 'normal' mum and do the things I want to do with him, like go forbike rides, and take part in the mum's race at his school. I also have a problem with running after him when he decides to run off! I often feel I am a useless mum, and hope one day DS won't hold it against me.
Sorry for the long rant and moan, but Ijust wish I wasback to normal and pain free. I know our conditions are different but I to feel a sense of frustration when I am unable to do tasks I could do not so long ago. I feel more frustrated formy hubby, he goes to work all day, then comes home to have to look after me and my DS, he doesn't deserve it, we have only been married for 3 years, and the severity of my symptoms hasbeen going on for 2.5 years.
I am going to shut up now, sorry!

i really feel for you! i have ms and in the year after my dd was born my mobility and balance deteriorated...i was and am so envious of mums who can rely on just getting to their child if they need to and scooping them up.

when she was about 18 months old i was virtually housebound...could only walk a few hundred yards and had had to stop driving manual car..i was facing early ill health retirement and i was angry and tearful and felt like a burden even tho' hubby and others reassured me.it felt like every few days there was something else i couldn't do any more and i know (more clearly in retrospect!)that i was in a constant state of mourning for the future i'd expected and lost

it took me ages to get to terms with needing a scooter/chair and even longer to get used to using it in front of acquaintances. once i had it tho' i found i had more energy left to "be a mum"

i expect my next rages to be about a stairlift/moving to a bungalow...

sorry about the ramble, thinking of you

loopyredangel - I really feel for you. have you not been referred to a specialist for a proper diagnosis? I seriously recommend you do because there are now drugs out there which can a) help to delay the deterioration b) help with the pain. I know my original post here was a big moan, but honestly since I've been on the drugs in March I really have been so much better. Also I'm in the system for help. Even when you are pregnant there are some drugs you can take to help with the pain.

Hi there, I am an OT. I'm sorry the OT concerned isn't meeting your needs as a parent. Were they a Social Services OT?

If you are having difficulty getting off the loo, you could have your toilet raised on a plinth from the bottom as a minor adaptation, this would not at all be noticeable and given your age more appropriate than seats which will need replacing evry few years. Do try the plastic seats to see if they give you the right height though.

For car seats, the OT could show you turning discs which would help you swivel around if that was the problem or you can go to a Vechicle Driving Assessment Centre who specialise in adaptions for disabled drivers and passengers . Either call the Forum National Enquiry Line on 0800 559 3636 or click on the link to their website www.mobility-centres.org.uk

The Disabled Living Foundation have a huge range of knowledge about all equipment and adaptive products and can give independent advice. www.dlf.org.uk

Hope this helps!

Hi Poohbah

I've only just read this! So sorry for taking ages to reply, but thank you for your advice and web links, I'll have a look at those.

Since this thread I've seen another OT - this time from Social Services (the previous one was from my community hospital) and she talked about raising the loo on a plinth. She's also organised a better bed rail and more rails in the bathroom and she's organising for our front step to be altered to help me with the pushchair.

If it is the child's car seat that is a problem, you could consider a 360 degree swivel version like this: www.britax.co.uk/car-seats/dualfix/

They are extremely expensive compared to the average car seat, but I have RA and feel that it is worth 50p a time for not having to try and levitate a toddler round a corner.