Navigating adolescent CFS

Getting my head around how life’s changed. September 30, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 1:28 pm
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There are a couple of statements I’ve found myself saying repeatedly – sometimes to myself – these last few weeks.

The first is ‘One day at a time’. (sometimes this becomes ‘one hour’ or ‘one step’) For someone who’s like… maybe… just a tad on the… little bit….. need to be in control side…just a tad remember…. one of the most powerful lessons I’m learning from parenting our girl with CFS is how to live in the now. I haven’t mastered it but I’m certainly a lot better at it than I used to be. In some ways it’s like being home with small kids again, you just learn to slow down your expectations of the world and what will happen in one day.

Our girl was diagnosed on June 1st and since then I feel that I’ve been through various stages of grieving. Sometimes…usually around 3am (!)..I feel physically pained and hollow with grief that my darling girl is not experiencing life to its fullest. I obsess about what she’s missing out on (even though logically I know SO many people are worse off than my sweet girl). Occasionally I am still driven to tears in the daylight hours – usually after she has made some matter of fact and terribly poignant statement. (I have to leave the room pretty quickly at those times!) However generally my daytime tears these days are to do with grappling with decision making about the best way forward – which is actually kind of different. Because I find that the other statement I have made repeatedly recently is ”I’ve somehow come to terms with the fact that our girl is probably going to have a different adolescence to other kids and that that’s okay.” I guess I can only move to this place because our girl has moderate CFS not severe. Were she completely bedridden I would be still crying a lot more no doubt.

Don’t get me wrong, I’m still distraught that there’s no cure and no timeline. I guess what I’m saying is that I’ve accepted that things may be different without being ‘over’.  Difficult to explain it seems. Let me elaborate!

School is the biggest issue with the way forward and something it’s not possible to live entirely in the moment with as I need to know what options are available to our girl… However I am open to everything changing at the drop of a hat..and THAT BEING OKAY!

A little bit of background at this point seems helpful for those of you who don’t know us personally. As with so many people affected by this condition our girl was no slouch in the school department prior to getting ill. (The majority of people stricken with CFS led very busy, achievement oriented lives prior to onset. It makes it look highly likely that there is some connection between the neurological make up of  some sensitive, multi tasking high achievers and the cause of this condition..if we could only find out what!).  In May she sat a 2 and a half hour test for a selective class at a high school two train stops from our house and won a place. Prior to this she was most likely going to a private co-educational school that would have required over an hour’s bus trip each way. (Our political leanings were a little uncomfortable with this option and the arguments each way would become a blog on their own!) Ultimately we have decided on the state high school selective class because

a) we think she would thrive in that environment

b) it was how both her father and I were educated

c) it’s close therefore

– should she ever be well enough to use public transport for the trip it would be less exhausting than the other option

– it’s more convenient and better for the environment should we be driving back and forwards to various classes as she can’t manage a full school day

d) we can’t rely on my salary at this stage ( I need and want to be at home for her) and we don’t want to add being too financially stressed to the family ‘issues’!

e) it’s hard to justify paying for schooling if she’s going to be at school very little! (currently less than 30% attendance)

Have absolutely no idea if we’ve made the right decision but at least it’s made (and CAN BE CHANGED anyway right?!)

So, our focus at the moment is to get her as well as possible by February next year when high school starts.

Academically she is already ready for high school which gives us a lovely luxurious 4 month window to just focus on keeping her happy and socialised. And you know what, that may even be what the focus will be for the next 5 years AND THAT’S OKAY RIGHT?! Maybe she won’t be able to cope with any school attendance and will slowly do distance education units instead AND THAT’S OKAY TOO! Yes I’ll cry some more at times and she will too but the world hasn’t ended and we’re all learning to value different things. And that is very different to how I felt 2 months ago.

So that’s how life has changed.  I can look at the future, have very little idea what it looks like but know that, whatever else, my precious girl will be loved and supported and WE WILL FIND A WAY FORWARD EVEN IF IT”S NOT WHAT WE EXPECTED.

Well, today I can.

I still want that cure though. Yesterday wouldn’t be soon enough.

Hugs to all the mums and dads out there whose hearts are bruised with learning that, for whatever reason, for their kid/s, life is going to be harder. And may there be many cures just around the corner. x


7 Responses to “Getting my head around how life’s changed.”

  1. Knowing that your kids life is going to be harder than you imagined is heartbreaking. I wish there was a cure for your beautiful daughter.

  2. Annie Says:

    Thanks Nic. You were certainly one of the mums I was cyberhugging as I wrote those last sentences xo

  3. Marita Says:

    I just wanted to say that your post Nicole (planning queen) linked to was beautiful.

    But if a mothers love could cure CFS then your daughter would be better already.

  4. Alison Says:

    Hi Annie,
    I’ve just been reading some of your posts. I became ill with CFS at 12 & I can relate to what your family is experiencing. I can imagine as a Mum it must be really difficult to know how best to support your daughter, also how to find a balance in life.
    As you said, your daughter may have a different experience of adolescence, but that is ok. Obviously it can be challenging, but life can still be fulfilling; she will learn things that she may not have learnt otherwise. I know for me it was important to use the energy I had to focus on things I enjoyed (like the piano lessons, swimming & socialising).
    I just wanted to encourage you too. I know finding the best way forward, generally, as far as treatment goes can be really difficult. I know my Mum’s support was invaluable, as you seem to be doing, trust your instincts, you know you daughter better than anyone & want the best for her. I hope your daughter’s health improves & she makes a quick & full recovery & can really enjoy High School.

    • Annie Says:

      Thanks so much for this heartwarming and supportive comment Alison. I really appreciate it. I agree that my girl is learning skills, including an acute self (body)-awareness and the importance of just enjoying life, that she may not have otherwise. I’m so sorry to read (from your blog) that you’re still ill. May that cure be just around the corner. I love your posts and look forward to seeing you again in the blogosphere in the meantime. 🙂

      • Jo Says:

        I tell my daughter (and myself) that we must “look for the gifts” in this difficult situation. So far, she’s just not buying it! :)) I read on the blog of woman who has cancer that she encourages her children to go on a “treasure hunt” to seek out the special treasures and treats that her cancer has unexpectedly brought them. For me, it definitely has been such a hugely increased appreciation for each MOMENT with ALL of my kids and, as you say, to “live in the moment”. It’s a bit weird as I’ve got a job that requires many meetings and significant amounts of work. I find myself day after day, saying “I’ll need to let you know tomorrow” when asked if I’ll be at a meeting or get some piece of work done. It’s a very different way to live…(and likely will get more difficult as my vacation time and sick leave run out!)… but seems to be a lesson that both my daughter and I are needing to learn at this time…

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