Going on a Long Guilt Trip

Still no let up from the crushing MS symptoms. Still don’t want to say ‘relapse’ out loud. Worst thing is though, all the guilt has come flooding back.

The Teenager has been incredible since this whole MS thing started, and has started telling his friends, ‘my mum’s got what Jack Osbourne’s got’. The height of cool.

But he crumbles sometimes, unexpectedly, and it’s the saddest thing to witness. One day I told him off for not brushing his teeth. Five minutes later I hear loud crying from upstairs. I find him frantically scrubbing his teeth, taking huge, gut-wrenching sobs. ‘I hate MS, I hate what it’s doing. I hate you having it’. My heart broke into tiny pieces.

I try my hardest to hide symptoms from him. I sleep before he gets home, stuffing the duvet down the back of the couch. I have also trained myself to cat-nap and be instantly awake the minute he comes back from school. I write down key points about his school day so I don’t forget them, such as maths test, horrible PE teacher, German homework. I use Touche Eclat under my eyes so I look more awake and his rugby kit is always, always clean and ready. It’s a matter of pride.

But the guilt is relentless. I should be doing more with him. I should take him to town after school one day for a surprise and buy him a new pair of Vans. I should plan interesting day trips. We used to love baking together (thank you, The Great British Bake Off!), but we haven’t done that in a while. I haven’t the energy to clean the kitchen afterwards. The Swedish chef from The Muppets has nothing on my son.

So, I cut corners. I pass off M&S food as my own, leaving the chopping board out as ‘proof’ of my hard work. I spring money for pizzas (cool mum!) to save cooking, I buy more treats than usual and make sure his Lynx supply is fully stocked. I allow lots of sleepovers, so I know he’s having fun, but it gives me much-needed space too.  I make sure I am there for him, as much as I can be.

I hate what MS is doing to our little family. If I can just hold everything together, we will be fine. And maybe I won’t need to have Dominos on speed dial…

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7 thoughts on “Going on a Long Guilt Trip

  1. Tony Cardis says:

    Just a thought but let him cook, buy the supplies and you supervise. Our grand kids love it they feel like they have made the meal,but it’s you without the effort but all of the fun,it doesn’t have to be anything fancy but you’ve done it together

    • stumbling in flats says:

      Hi Tony!

      That is a darn fine idea. He’s always after me to let him cook, bless him. Will give it a go and let you all know how we do! Thank you! X

  2. Scot says:

    Wow , what do I say ??? I course it would be easy to just say hang in there , keep ur head up , it will get better, and of corse I’ve been there ( &i have , I have 2teenage sons of my own . But that is just not going to cut it this time , so lets see were I can take this for u … O thonl i’m going to go w/ the “guilt” this our MONSTERS off-spting #1, and this is not a good kid , this little shit has a way of taking us to 1 of the lowest places we can be (in my opinon), yhis take us to that places were we put it all on us …. And when were in abetter place in our hearts &minds we all know that the way our lives need to be lived now REALLY ISN’T OUR FAULTS ! We all know that we r not being punishished for being bad people or getting payed back for bad things we’ve done through our lives ,in my opinion i’ve come to learn that life and god ( now when I say god I mean my god , thats to say the god choicse, i’m very spirital , but not relegous)just don’t work that way. I belieave get only what we can handle when we can handle it. Oh don’t get me wrong I will be the first 1 to tell you, aometimes what what a game just seems impossible !!! But I have found that w/ the right peeps around things always , Always , seem to qork out right , even if we don’t alwats agree w/ the out come .
    Next let me tackle the teenager , this young sounds to me like a young man who u & himself can , & should -& im sure u both r very proud of !!! 🙂 tbis maybe getting to long , i’m not sure so im goig to continue it another post , & I truely do hope i’m not upsetting u by writting here …

    • stumbling in flats says:

      Hi Scot!
      I do know what you mean. Just when you’re trying to get your own head round this horrible illness, you also see the impact it has on your family. It kind of rips your heart out. Think having the support from all the MSers really does help a huge amount, and to know I’m not alone. Hope you’re feeling better after being in hospital? X

  3. Scot says:

    The next thing to talk about will be how you’re feeling when you see your son falling apart a little bit…. I’ve seen this w/ my sons , more than once . And the 1st timei saw it , I simply chose to walk away from it & hope the whole thing would take care of itself, and of course it didn’t , the next time I sorry it happening I decided to turn this situation into something a little bit more positive, I brought my boys to a comfortible place & I started to talk about all of those scary things that we were all feeling &thinking. turned into 1 of the most powerful parent child moments that my sons & I have ever had , & one that we so badly needed , when I finally opened up about all of my fears & all of my insecurity , and my anger about what this monster has stollen from all of us (our small family ) , an amazing thing happen , by opening up 3 them they now had permison to do the same , and they both needed it so badly…it was a difficult time for me , to watch that kind of pain pouring out if them !!! Then ( 4me )the most amazing thing happened , l came to realize , that they erren’t angry at me , & they didn’t blame me , they held the same angers that I did for the same MONSTER that I did , I always felt they blamed me , as I sid for so long , but they didn’t & they really wanted me back , even w/ all of the ways we would have to change , they eere ok w/ it , I didnt need to be super parwnt any more, they just wanted & needed they’re dad back . MS as taken so much from me (Us) & I had no choice but to let

  4. Scot says:

    Well just going to stop writting & taking up so much time a space (rambling I guess) , just let hom be part of ur battle , every part of ur battle , just like he’s such an important anb big part of ur life !!!! :-)and again im sorry I said so much , but I do love ur blog , u have a way of making people feel comfortible , & like u rwally do qamt them here and talking /sharing !!! & I THANK YOU .FOR THAT ….

  5. stumbling in flats says:

    Hi Scot,

    Sorry for late reply – internet connection playing up with all the rain we’re having here! Thank you for letting me know I’m not alone in all this craziness.

    I’ve given him money to go to the cinema with a friend today, and have a nice lunch. Plus he had a sleepover last night. Pretty much a normal teenager I guess.

    We do try to talk openly – have always had a really good relationship with him and he knows I am always there for him. My son is the main reason I said yes to Alemtuzumab (Campath), as the clinic results were amazing.

    Dare I say it, am feeling a teensy-tiny bit better today. Temporary pseudo-exacerbation instead of a relapse? I really, really hope so.

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