Because Y is a crooked letter that cannot be straightened....

[Vicrum88]

Happy Fri-yay to all my fellow Warriors!!

Today I want to tackle the subject of parenting when suffering with Scleroderma and other autoimmune diseases.

I have 2 boys aged 9 and 12. A few weeks ago my oldest seen some of my hospital paper work and decided to ask his nana (my mother) what was wrong with me. My mum explained to him as best she could and he took it in his stride and responded with "well that explains why she's so grumpy at times" 😂 which is great! So far so good!

My youngest son is 9 and has special needs. So the other night when getting him showered, I put on a pair of pyjamas shorts because I always end up having to get into the shower to help him! For the first time ever, he seen the Livedo Reticularis on my leg and said "oh ewww mum! Look at all those veins on your leg!" -

I did NOT know how to react to this. I suddenly realised that my son's reaction was the reaction I've been dreading from other people.

My son is autistic so sometimes it's very hard to explain things to him.

So to all you parents/aunties/uncles/grandparents etc - how do we explain something to our children that even we don't fully understand? And how do we answer the dreaded question of "but why?".

For me, the best way to explain to my son was to use his own mobility issues as part of an example. I explained that sometimes things just happen and it's no one's fault. I explained that sometimes my legs don't work and they're very painful for me on those bad days.

The look of concern on his face was heartbreaking. My son is such a caring soul and would do anything for anyone and he immediately started asking if there was anything he can do to help me...... I feel awful that my 9 year old son is worried about me. It's not his job to be worried.

Becoming a mum is the best thing that's ever happened to me. Parenting comes with so many challenges under normal circumstances but these days I've got new challenges to tackle along with the normal parenting issues!

Sometimes I feel insufficient as a mum these days due to my health. The school run used to take 5 mins due to how close I live to it.... it now takes 20 mins to walk there and back on a good day! Some days I struggle to cook them dinner. Other days I struggle with basic cleaning and washing.

It's bloody hard work!! I know I'm not the only parent who's suffering here. As a parent I was terrified to speak up about my struggles but it's nothing to be ashamed of.

I'd love to hear from you guys with any advice and/or about your own personal experiences.

Love and respect,

Mumma Giraffe xoxox

[SylvieJ]

Hi, I just read your post, and I really sympathise. I am luck that Sjogren's didn't begin until I was 50 and my three children are adults and I am a grandmother. My grandson is autistic and my son finds it hard and he doesn't have any of the auto immune problems we all face that post here. When this disease was really getting to me, like you I felt I couldn't cope with the smallest of things. I had a counselling session on the phone, and it really helped in as much as she told me about spoons. Yes, spoons. I will post it and I have no idea if it's going to help you. You mentioned the veins on your legs, to give you hope, people do stare at first but you seem like a brave woman and I think you can just overcome that and think let them stare. My son was very badly scarred in the legs in Iraq. He used to feel like you, and his children asked as well. It took him a fair while but he now dangles his legs in the pool and wears his shorts out in the summer when shopping. It's not easy but I think you will get there. I know it's not the same thing but I thought if I share that with you, you will know you aren't alone.

Here is the spoon theory which also helped me explain to friends who thought I looked perfectly fine and didn't get why I was watching my diet, and all the other things I do to live with this.

rheumatoidarthritis.net/liv...

Your little boy sounds absolutely adorable and your other children. Warm wishes

Sylvie

[Vicrum88 in reply to SylvieJ]

Hi @SylvieJ

Thank you so much for your lovely words and comments. My apologies for taking so long to reply xxx

Spoons!! Wow!! I absolutely LOVE the link you posted for me! I've never heard of the Spoon Theory before and I think it's a brilliant way to describe what we go through daily. Not only does it help to explain our physical difficulties, but it makes you think about the psychology that comes with such an illness because of the way it's worded. Able bodied people will usually try to sympathise with mobility difficulties but very rarely will "normal" people think about the mental health side that comes with it. I will certainly be using the Spoon Theory in future to explain this to others! Thank you so much for that insight!

It sounds like you have an amazing family ❤ and while you class yourself as lucky that your illness didn't start till you were 50, I'm sure there are things as a Nana that you struggle with.

I want to personally thank you for telling me about your sons legs. You must be so utterly proud of him for not only going out to Iraq but also for the obstacles he's overcome due to his injuries. What you've said does help me. I can't wait till I'm in the same mindset where I feel that level of confidence.

My son is absolutely the kindest soul I know. If he doesn't go into a career of some sort that helps others then I'll be shocked! He'd make a wonderful nurse that's for sure ❤

Sending you so much love and grateful hugs for your support.

Vicky xxx

[Sanmateogirl107]

ask your doctor if you can any support at home like a caregiver, support group, i am very proud of you warrior. i took care of my dad before he died he did not understand due to dementia. i had to cut ties with my family because the y offered no support and said i was faking. i have psychologist, doctors, ihss, sister up north so make noise ask for help. the love you recieve when you do is everything. i wish you lots of love, hugs, kisses, prayers for a wonderful year. love you very much. julie