Sunday, 23 March 2014

When does Caring become Comedy?

This might seem an utterly insane post title, but bear with me.

I have four children with additional needs. I used to say "3" but #1 son has more recently developed problems of his own. Nothing major, but foot surgery (both feet) for permanently dislocated toes due to a connective tissue disorder is definitely not run-of-the-mill.

The appointments for my brood, plus my own (I have two autoimmune diseases, osteoarthritis and pretty severe allergies) and my husband's (glaucoma, the genuine full-on kind with optic nerve damage) are utterly overwhelming at the moment. We average four appointments a week between us. Some local, some in London. And all of these understandably involve my participation - although I am excused many of my husband's eye appointments. I am invariably planning appointments, notifying schools, ferrying children around and attempting to ensure clinic letters are communicated amongst professionals involved with our family. It's a full-time, thankless job, which prevents me taking on alternative employment.

Knowing that there are many others worse off, and grateful for the support we sometimes get I don't often moan, but there does come a point beyond which "normal life" (whatever that is) ceases to become an option, at least in the short term. This week, we undoubtedly pushed through that boundary.

I rarely post about such things, I don't consider myself a  Special Needs Blogger, I write about anything that affects me/our family, or anything that interests me. But sometimes, all this becomes so totally and utterly overwhelming, that it spills out - no longer well-contained or controlled in a chaotic, anxiety-inducing mess.

The anxiety is mine, kept firmly under wraps 95% of the time as I focus on the essentials, the necessary parts of caring for a family with many additional needs. But it doesn't take much to precipitate a bubbling over of what is always there, simmering away.

It might happen due to intense frustration over the professionals who are incapable of recording important details accurately in clinic letters, which then get sent out and cause untold problems locally. Or the stomach churning anxiety because the GP surgery saw fit to cancel off all your children's repeat prescriptions when the GOSH clinic letter was sent by the Indian typist to Ipswich, AUSTRALIA and they haven't received confirmation that the children still need those medications. (And yes, this really DOES happen, and you would be surprised how often - we've had months of letters sent to the wrong continent.) Or because items are missed off a medication list in the clinic letter because the consultant was pushed for time and scanned the list a little too quickly, or when an antibiotic is accidentally switched for an immunosuppressant because the typist became muddled - after all English is only their second language and "Azathioprine" and "Azithromycin" not only sound the same but are often prescribed by the same doctor to his patients!

I could go on and on, the number of "administrative errors" is phenomenal, and dangerous. These days it's up to the parent/carer to keep track of everything or it all falls apart. And when that is one person juggling SIX people it's little wonder I feel like I'm losing the plot at times.

The problem is - if you don't take action and correct errors, you are deemed to have accepted and supported that information. And then, if in the future you DO challenge it - then YOU are the one at fault. This might seem really far fetched, but it isn't, I can assure you. The troubles we have had in the past because I wasn't switched on sufficiently to the massive plate-spinning task involved in managing my children's care would fill a book.

Maybe they will one day.

So after appointment number three last week, I was really not prepared for school calling an ambulance out for son #2 which you can read about here. We got through it, and I regrouped, slammed the lid firmly back on the simmering pan of churning anxiety and moved on to the next focus - getting son #3's stoma sorted. It goes without saying that nothing is ever straitforward, and whilst we are THRILLED he no longer needs his feeding tube I could have done without the hole refusing to close. And his stomach deciding it was a good escape hatch through which to herniate....

Are you getting the gist of my week? As you can see it begins to take on comic proportions around this point... in a sad-but-true way of reality failing to keep pace with expectations.

So on Friday, I had two children in tow as we took the really slow and unreliable  Greater Anglia train down to London for two GOSH appointments. Son # 2 had rheumatology, an annual event which last year coincided with my 40th birthday. I guess this year I should be grateful that my birthday fell the day after but given that I now had his younger brother with us and we would have to forego the promised stop at Westfield, Stratford, it wasn't boding well for a calm day. Never mind MY anxiety levels, I had a 12 year old Aspie with poorly controlled ADHD in a really-not-very-happy mood. And that was BEFORE he tripped and fell face first...

We did make the surgical review (yes, he needs surgery, and a pre-op assessment, so two more trips and probable a review post-op as well) and we went for lunch, but it was obvious H's back was really, really sore again. And my heart sank as the nurses at GOSH insisted we jump in a hospital car and head to UCLH A and E and get him checked. Missing our appointment. (Another GOSH trip for the future)

At this point, the proverbial lid on my simmering anxiety blew off into the stratosphere and it spilled out everywhere. But as a parent you HAVE to stay in control, focussed and together. So like anyone else in the same situation you bury that part of you which would actually really rather have a total meltdown and you "Carry on Carrying On." But there is always a cost to this denial, whether immediate or sometime later on. Trivial things can bring tears to my eyes, or stress me out way beyond a normal level of response - because I function at a high level of anxiety all the time. There just isn't very far to to before it becomes too much.


The reality of caring for complex kids, (even more so when there are several rather than one) is that it totally takes over at times. And however much you would like to wave the normal flag and be part of that team there will always be a huge chasm between you and them. Days like Friday make that gap so much wider, you feel there is actually no longer any point trying to bridge it. The trouble is, no one points you in the direction of "your" team. And if you have kids with no overall diagnosis, you don't belong anywhere. 

But THAT is the point that you really need others to see, to KNOW that however farcical the situation might seem, this is your reality. This is really how life is right now, denying it or attempting to see the funny side just isn't going to cut it.

Because really, it's not very funny at all.


37 comments:

  1. Oh wow, this so rings true, especially the way that you hang on and hang on, trying to stay calm, and then something trips you up and it all blows over.. hope this week is better for you x

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  2. goodness, what a week. i think you are fantastic for doing what you do though! sometimes it just finds a way to come out though, no matter what you try and do to stop it. and like you say, it's not good to keep a lid on it all times, and you just have to try to find a way to let out your frustration in small bursts, because in the end, that makes things easier than a full on outburst.

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  3. Certainly sounds like you have your hands full. I don't know how you manage remembering and attending so many appointments, no wonder you feel anxious and stressed. As a Mum you just have to get on with it don't you. I hope things start settling down a little for you after the manic week you have had.

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  4. oh bloody hell, what a complex series of things to deal with. The mistyped drugs is very scary. I am a big believer in seeing the funny side, but as you rightly say, sometimes there just isn't one. I echo Candi above with my wish for a better week for you this week.

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  5. Wow hun, thats just crazy! I rate you highly - I often wonder how I would feel in this situation and I believe it takes a strong person to be able to cope but I know the love of your kids drives you more then anything and yes seeing the funny side of things - whats that saying 'I have to laugh or I might cry' or something like that HAHAH. I have to attend an appointment every 2/3 months or so with Hayden allergies and eczema and that in itself is stressful for me. Stay strong and keep your head held high.

    Lotte xo
    BericeBay - London Lifestyle Blog

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    1. I'm really good (usually0 at seeing the funny side of things - we try and apply our warped sense of humour to life at every opportunity. Sometimes it's just not possible though, and that makes me feel worse in a way... but that's life. Had a lovely weekend and raring to go again this week!

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  6. You really have your hands full! Some scary things there. Especially prescribing the wrong drugs! Hope this week is a little easier for you! X

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  7. just cant imagine how strong you should be, i was always wondering would i be able to do that ..still not sure

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  8. Wow! I am so impressed that you managed to keep calm as long as you did. I think I would have been arrested for screaming in the road at people. Am shocked and appalled to read about being given the wrong medication! x

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  9. Sounds very stressful . I hope things improve for you this week x

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  10. Oh how I sympathise with you. Just last week I wrote about the anxiety attack I was going through. It was for somewhat different reasons, but the result is the same - living in a state of high anxiety all the time, and sometimes it is just all too much to bear.
    I really hope you are feeling better today and that you are finding ways to lessen the anxiety. x

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  11. Oh my word, what a week, I can't believe what you have to cope with. I hope that writing it all down helps you. You write it very well.

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  12. Wow, you've really hand your hands full! Hope things settle down this week for you x

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  13. What a week! I hope you have a better week. It must be so stressful, well done for remaining calm, I'm not sure how I would cope I guess you just do x

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  14. What a stressful week! Sometimes it's just so hard to keep going without exploding when times come!

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  15. wow you most definately have your hands full but weldone you for being soo calm about it all and getting back on track and carrying on hun x

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  16. My gosh sound like you have had lots to sort out .x

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  17. Wow, what a stressful week you've had - You sound like you've kept calm and carried on! x

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  18. Looks like you have loads on your plate. Do hope you have a better week.

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  19. Goodness me, you have such a juggling act to contend with it is little wonder that occasionally your feelings will brim over. I wish I could disbelieve the mix up with prescriptions but I know all too well that a misplaced/ misspelt letter can leave you in limbo. You are doing a marvellous job under unbelievable stress, I hope you get time to relax occassionally x

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  20. I don't think I could cope with all that. It is difficult enough for you I imagine, without others making such horrible errors. I hope the appointments calm down a bit x

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  21. I really feel for you. I get in a tizz with just my one. You are made of strong stuff keeping everything together. It is such a full time job with appointments and wow, all those admin mistakes you have been dealt. I hope things improve for you and you have a better week xx

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  22. I hope next week is much better for you! The mistyped drugs and sending to Australia is shocking! I find it stressful at times with so many appointments too, and I only have 2 that currently go for appointments and therapy - it's just the constant juggling and rushing from one place to another that gets so tiring. I do know what you mean too about the gap that develops between yourself and "normal" - but as you say there's no choice than just to pick yourself up and get on with it. Love the orange picture btw

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  23. Oh my goodness Kate, you deserve a medal for everything that you do. You're awesome! I think you're allowed to have moments and hopefully they'll pass soon enough x

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  24. I don't really have any words.... but sending lots of cyber hugs. Hope things are better for you this week xxx

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  25. Wow. I really hope your days start to get a little better, it sounds like you have SO much going on all the time it's amazing you keep up with it all. Make sure you try to make some time for youself in there somewhere, goodness knows you need it! x

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  26. Wow, I hope by writing this down it has helped you to feel better x Hugs coming your way x

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  27. The first thing i want to say is Happy Birthday!! Here is me moaning that I don't get to go away for mine like hubby did and you are going through all that. I sincerely hope that you get a) answers b) a break and c) a slab of chocolate, bottle of wine (or gin) and flowers for all that you do on Mothers day

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  28. Oh goodness what a horrible day for you all. I often wonder how many mums are paddling frantically under the surface of the face they put on because they have to, because there is no alternative. You are amazing x

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  29. Keep up your amazing work. It is shocking to hear about the mishaps that have come your way. Fighting such a set of battles day in and day out must be exhausting!

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  30. hope next week is much better for you, sound like you have been having a really tough time xx

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  31. No, definitely not funny. You can only do as much as you can do though, and try not to let it get to breakdown point - shout louder for support if you can, or try have rest however small. Hope this week is better x

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  32. Not funny at all.

    I had a moment of being overwhelmed last week with the sheer array of appointments that I have to keep track of for me - I can't imagine trying to juggle for six.
    x

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  33. Good lord. Siunds manic and just typical that extra things went wrong when life was already chaotic and all over the place #blogclub

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  34. I have said it before, you have my admiration and esteem! I would never be able to juggle all that and would crumble like a cookie with only a small percentage of your responsibilities.xx

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  35. Keep Calm and Carry On is a great slogan but I am sure it is hard to follow at times.
    Do you find time for yourself? Even a little "me" time may help... even it is just a bit

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  36. Wowsers. What a busy and stressful week. Hats off to you for carrying on but i guess there is no real choice.

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Many thanks for taking the time to comment, I really value your responses.

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