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I feel so sorry for my kids

Just got back from a fantastic day out at Alton Towers with my 12yr old twin boys and found it really difficult to walk around most of the time even with my trusty stick. I had to keep stopping for a rest and just pretend i was admiring the scenery. I was diagnosed just over 2 years ago and this was the first time i really struggled to walk infront of my children, i felt so sorry for them to see their super hero dad stuggle like that and kept thinking im ruining their day.

One of my boys kept holding my hand and asking if i was ok, bless him. They are aware of my MS, but that was the first time it hit me that my illness is slowly crippling me and to see my boys looking at me that way broke my heart.

We all had a fantastic day though … even though i still had to pay £6 to park on top of the £123 for the 3 of us to get in !

Hello Dave. The gradual realisation of increasing limitations is hard with family and friends but even more painful with your children. I tended to do it on a “needs must” way by just saying what I was finding difficult at any specific time. I remember a trip to Toledo in Spain when I had to just stop and rest and the look of disbelief of my friends’ faces. I think it is good to emphasize that while you are now finding some limitations, there are still many ways you can be all the things you are, particularly as a strong, supportive father. I often explained to my year 6 classes how MS had given me strength in many ways. It is really hard going but you still have your mental strength and wisdom/experience. Best wishes, Steve.

I don’t have kids myself but I can take heart in them being with you and understanding at such an early age.

While it’s hard for you for them to see you in such a way, you can be proud that they’re with you through the journey.

Good for them …and you too.

I’m glad you had a good day Dave :slight_smile:

At 12 they probably notice far more than you realise and they’ll probably grow up more grounded individuals having you around and MS does play a part in that.

I know you must feel sad for them seeing you struggle, my step-daughter is 21 and at Uni, I cried when I ‘Liked’ the MS society on Facebook and saw we had one mutual friend… my step-daughter! I hate to think of her so far from home and worrying about me.

She sent me a text on the first hot and humid day to ask how I was holding up (she was home last weekend and tells me she follows the MS society on Twitter too) so she knows more about what’s going on than most of my family do and guessed I was having a tough time with the heat.

Whilst it’s horrible to know that your kids are impacted by any stress and worries when they are so young, I think one day your boys will make you proud! My step-daughter decided to move in with me and her Dad at 13 years old and she was only 11 when we had the full-on CAFCASS shenanigans when she wanted to spend more time with us and her mother wouldn’t allow it.

Needless to say, whilst we had a few tough years back then she’s grown up as a thoughtful, kind and considerate young lady (not to mention beautiful, funny, intelligent, fab cook and brilliant photographer!)

I think it’s tough enough for us becoming less capable, even tougher when it’s seen by your kids :frowning:

Take care Dave, it only occurred to me a few days ago that I’ll probably never ride another rollercoaster, I don’t think the vertigo will put up with that!

Sonia x

Hi Dave

I know what you mean, I was in that place a good while ago. At that time

I suppose I was still in denial somewhat, but my kids wanted me to go on

days out with them.

Although I was still at the stage where pride hurts, I bit the bullet and had a wheelchair for those “special” occasions, and was

surprised how resiliant children are, they just accepted it so we could all

enjoy our day, and it was one of the best decisions I made. That was a very

long time ago, and things moved on for me, I now have a powerchair which I

rely on, but my grandchildren just take in in their stride, as they know no difference.

This maybe a solution for you, hope this helps.

Pam x

Hi Dave

Your post touched me as I’ve just returned from a short break with my 15 year old daughter. I’ve always been strong both physically and mentally, it’s just been the two of us as I got divorced when she was a baby so I’ve had to be independent and decisive but spending an entire day in Edinburgh then going to the tattoo finished me and even with crutches I only just managed, getting into the hotel before I passed out until morning.

She was brilliant, agreeing to every tea break if I needed to sit down. She noticed when I was tired and moved slower. They have so much understanding no matter how little they know about MS they seem to read what you need, just like you manage to do for them. You’d be surprised as well that they feel good being able to help you. Watch their body language, it’s pride not frustration you’ll see. Jen keeps telling me how proud she is of me to cope and still do things with her when many would sit back feeling sorry for themselves.

If the stick isn’t right try crutches, much more stability and pressure off the feet. My GP sent me to an orthotist too who got me insoles to help balance and pain and they are wonderful, can’t believe what a difference they make.

Take care.

Cath x

Thank you all for your kind supportive words xx