nav[aria-label="Primary Navigation"] { padding: 0; & ul { list-style: none; width: 100%; display: flex; flex-direction: row; justify-content: start; align-items: start; gap: 30px; padding: 0; & li { margin: 0; } & ul li { list-style: none; } } }

We want to hear from you: please tell us about your experience of the online community.

Hi everyone, MrsSam here!

MrsSam

Hi everyone,

I've been a member here for a while but didn't contribute to the discussion boards until today so apologies if I don't get the introduction right . I'm a married mum of 6 and I joined originally because of my children's disabilities. I have 1 adult son with Asperger's and depression, 1 son with Autism, Anxiety, ADHD, epilepsy and hypermobility, 1 son with suspected autism spectrum, epilepsy, hearing impairment and OCD, 1 daughter with a learning disability and 1 daughter with sporadic hearing impairment (possible auditory processing disorder) and dairy and soya allergies. I have fibromyalgia, hemiplegic migraine, IBS, depression and anxiety and a slipped disc (and gallstones just to shake things up a little). Not how I introduce myself in person, but I thought this relevant to my being here.

This last year things have taken a bit of a nose dive with my health and I am currently having to accept much more help from my adult sons and my husband to function. Previously I used to do a lot of advocacy work for friends of friends or anyone who had been given my details, and I still get asked for advice a lot, but this has been more complicated during the pandemic. I have spent the last 16 years fighting for correct diagnosis for my children so they could access the additional support the needed, feeling guilty and responsible for their difficulties despite knowing I did nothing to contribute to them, fighting for support in education, from social care, and trying my best to educate others. This last year I have felt like my batteries have run out. I was surprised to be asked last week by a mum who is at the start of the process of accessing and fighting for help for her child, how I managed to be so calm, organised and always in control. I had no idea I was giving this impression as it certainly doesn't reflect my actual reality. I feel like a fraud, as though I am living in a real life Instagram filter. Far from being in control all the time, i feel more like I am constantly trying to wrestle a cheap fitted sheet on to a king size bed after its shrunk in the wash, I get three corners on and as soon as I try the forth one of the others pops off.

Although things haven't been going well, hearing how others perceive me as being in control has had a positive effect on me and so I made the decision to try my hand at posting on these discussion boards. I look forward to being able to contribute.

Find more posts tagged with

Comments

janer1967

Hi and welcome and thanks for sharing your details

Wow you sound like supermum to me and you should be proud of how much you have achieved in what must be a very challenging life

Feel free to join in discussions I am sure you will be an inspiration to other parents here

chiarieds

Hi @MrsSam - thank you for your lovely introduction, tho I'm sorry things have taken a bit of a nose dive with your own health more recently. Anyway, it's very nice to 'meet' you all properly. The only condition I have any personal knowledge about is hypermobility, as myself & family (all children & 3 grandchildren), have the hypermobile type of Ehlers-Danlos Syndrome, as you might guess a genetic disorder, unfortunately. I too have felt guilty, as they got their genetic disorder from me, but just the same, nothing I could do about it. As I was adopted as a 6 month old baby, I also didn't know anything about my disorder until my children showed some symptoms a bit like my own.

It's amazing to read about all you've done for your family, & so many other people, & you should be proud of your achievements. I do like your analogy too!

I think we can all look forward to your contributions on the forum (& to that much needed humour). My best wishes.

Cher_Alumni

Hello @MrsSam and a warm welcome from me too

How are you doing today?

Blimey, I have to agree that you sound like a super mum. Supporting your children with their respective conditions, fighting for their rights, doing advocacy work for others - these aren't easy feats at all and I'd be very proud if I was you. I've no doubt that you've made a positive difference to many people's lives.

I'm sorry that your own health has gone a bit wobbly, and your 'batteries have run out'. Has the support from your husband helped? The feeling you have of living in an Instagram filter where people don't get your reality is understandable. Although mightily different circumstances, I describe myself at times as a duck gliding on the water seemingly effortlessly, whilst my little legs are paddling like mad out of sight. Do you think it would help to talk to anyone about this, i.e. your GP?

I'm looking forward to speaking with you again. And, please feel free to get involved wherever you like - be that in any of our different categories or our recent discussions.

Take care and I hope you have a fab Tuesday.

CoffeeFirst

Hi MrsSam (or should I say SuperWoman) I look forward to seeing you around!

Take care ?

MrsSam

Thank you everyone, sorry for the late reply, I did write something lengthy and suitably appreciative but it vanished when I tried to post it , clearly I need more practice!

Whilst I sit here on my bed, against my back protecting wedge of memory foam, I wasn't feeling particularly 'super', but after reading through the replies I'm now picturing myself in a cross between wonder womans outfit and super girls, which is making me very happy indeed!

In answer to some of the queries here, I have excellent support from my husband which has helped immensely, we really wouldn't cope if we weren't a team, and also from extended family where possible, although during the pandemic this has obviously been much more difficult. I also have good support from my GP for everything, including my low mood, for which I am on medication. I also get a phone call from the resident mental health practitioner every 8 weeks to ensure things haven't deteriorated. I am very fortunate to have a GP surgery with a carers champion who checks in on me and my husband every month (or more often if needed) to see how things are going and to find out if there are any services we can access which will help. This is a relatively new thing and I know many people do not have access to this, but it has made a huge difference to us just knowing we aren't simply left to get on with things.

Tbh, the simple act of introducing myself here and writing everything down was really therapeutic, which sounds so silly, but I feel a little recharged after it. It could also have something to do with my slipped disc causing me to spend 4 days sat in bed being bought chocolate and drugs (of the prescribed nature rather than the illegal breaking bad kind!) whilst I listen to my husband and elder children run the house like a military campaign, interspersed with visits from both children and husband enquiring as to when I think I will be able to retake my position as family CEO, preferably before every item of clothing has been shrunk, turned pink or assigned to the wrong wardrobe!

Ross_Alumni

Your post brought a smile to my face and made me chuckle @MrsSam, especially that last bit, hopefully you can return as family CEO shortly though I'm sure you're doing a brilliant job of running the place remotely from your current situation

Your family sound super and I hope they're getting along okay, it's good to hear that you have support in place do ensure that you continue to access your GP and other channels if you ever feel as though you need further help. I'm sure that your family all see you as a super hero, so the Wonderwoman / Supergirl outfit would be very much suitable.

shazzawood

Super women in deed..i take my hat of to you.as well as looking after your own family you have helped others..

Component react.suggestedcontent had an error.

The value must be greater than or equal to 1.

Sign in or register for free

Get more out of your online community by signing in or registering

Quick Links

Recent Posts
Play a game
Categories
Activity
Unanswered