Where Have You Been?

Drawer handle

 

Long Time No See

I’ve mentally written and re-written the start of this post a thousand times over, usually while washing up or in the shower (the sound of water boosts my thinking), but when it came to putting it on the page I always lost my nerve. It never sounded right.

So it’s been almost two months since I posted, bless me reader for I have sinned. Prior to this my longest silence was a week. If you’ve been worried, or tapping your foot impatiently waiting for a friend who never shows up, I’m sorry.

Seven weeks ago, to save my husband’s sanity, and possibly my own, I began taking medication to combat the chronic depression that had gripped me for months. Because previous pharmaceutical forays had been either ineffective or deleterious I was prescribed a type of drug I’d never tried before. And oh boy, the side effects!

 

“Could you speak up? I can’t hear you over the noise in my head.”

The ringing in my ears deafened when I lay down to sleep at night, and tuned in and out sporadically through the day, filling my head with a noise overwhelming to me but imperceptible to anyone else. It’s a curious feeling, waiting for the internal clamour to cease while the world whirls on around you, oblivious.

There was the persistent sense of a hair in my mouth that neither meals nor meticulous dental care could assuage, not to mention the head-rash (yes, that was ‘rash’ not ‘rush’, more’s the pity) that prickled my temples.

There were tremors that made me look like a boozehound with the DT’s, a sporadic sensation of the floor giving way beneath my feet that felt like the preface to a faint, and did I mention the risk of seizure? Oh, and the dreams – LOTS of crazy dreams.

But the most difficult one –  aside from a sudden aversion to coffee which in itself was bad enough –  the one that persisted when all the others passed or lessened, was the feeling of nausea caused by looking at a screen; something like the motion sickness you get from reading in a moving vehicle.

As someone whose work revolves around a computer the irony was not lost on me, but it led to my increased use of the original word-processor – the notebook and pen. They say your brain and capacity for creativity is stimulated in a different way when you write instead of type so I tried to see it as a blessing in disguise.

 

An internet authority on little blue pills…

As if this wasn’t enough, expatlog.com was badly hacked in a brute force cyber-attack that gained me Google authority as a Viagra dealer and resulted in the loss of site content back to early February. I had most of my posts saved on file, but all your wonderful comments and discussions are lost.

This really floored me for a while – I knew much of the loss was irreplaceable and I had SO much restorative work to do I just didn’t have the heart (or the stomach) for it. But on the bright side I hadn’t posted for the previous three weeks so my sloth miraculously mutated into the bonus of least six posts (and resultant comments) that weren’t lost.

 

  ⫷⦁⫸

 

But I’m not giving you the whole picture here. I’ve felt oddly dislocated these past few weeks and while the drugs and tech issues have played a part, more than anything it was the paralyzing possibility of my entire existence facing a re-assessment that could change everything and nothing at the same time…

Since my youngest, S was diagnosed with Aspergers (or High Functioning Autism as it’s increasingly referred to since the the *DSM-V rolled it under the umbrella term of Autism Spectrum Disorder (ASD)) at the beginning of April, my subsequent research turned up much that described me too. Coupled with the genetic aspect of this neurological condition (and that damn test!) I became curious to know one way or another.

Last week my suspicions were confirmed, and then some.

 

“Ok, so… you’re complicated”

An anxiety inducing referral had me back at CAMH (Canada’s leading mental health research facility and one of the world’s largest) for assessment by a psychiatrist with decades of experience and numerous court appearances as an expert in his field. At the end of the session, following the above pronouncement, my diagnosis changed from Borderline Personality Disorder to Aspergers Syndrome and Bipolar II.

Isn’t it strange how the things we so desperately need to know we’re right about can throw us for a loop when endorsed? I knew it would take me a while to process what this new information meant to me.

For a start, I’d never considered how I’d feel about my original diagnosis being thrown into doubt. From my reading I knew autistics often present with additional issues, from mood disorders to depression (a phenomenon known as comorbidity), often due to the stress of living with a different neurological roadmap in a neurotypical world, but I hadn’t considered the subsequent disquiet about accepting one ‘expert’s’ word over another. If a person’s life can be reassessed so drastically, who’s to say any of them are right?

On the other hand, while the label of Borderline Personality Disorder was delivered when I was far too sick to know which way was up nevermind able to research its accuracy, Asperger Syndrome ‘feels’ a better fit. It explains my social difficulties, preference for solitude, regular burnouts from frustration/exhaustion, delayed mental processing, alexithymia and sensory sensitivity. As one psychologist recently pointed out, I no longer meet all the criteria for BPD yet my problems persist.

Add to that the prevalence of Bipolar in my immediate family (father and sister) and I had to admit the high probability of his conclusion.

So, what do you do when so much of your life/thoughts/efforts have centred on striving to understand, and fighting the stigma around, one condition only to find out you’ve been re-branded? To accept the new diagnosis almost feels like turning my back on my old ‘tribe’.

I’m taking each day as it comes at the moment while this new information (and all its consequences) sink in. But there was one piece of good news with an immediate effect: I can drastically reduce the dose of those damned pills…




* The DSM-V is the Diagnostic and Statistical Manual-Fifth Edition. Published by the American Psychiatric Association it’s the primary manual used by American clinicians to provide a formal diagnosis of autism and related disorders. The manual outlines the specific criteria that must be met to receive a diagnosis, as well as the corresponding label and numerical code sometimes used by insurance companies to identify it. Its main purpose is to provide standard guidelines for the diagnosis of different psychological disorders and conditions.




43 Comments

  1. sorry to hear you’ve not been well, I’ve been through that same struggle myself many times…. sending you lots of good vibes xx

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  2. Sorry you’ve been going through such a difficult time lately. I hope things improve now you have a diagnosis.

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  3. oh no, i do hope that maybe you can find an alternative treatment or reducing the amount of pills you take, take care

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  4. I had missed you. The intrinsic, funny, insightful, kind you that I know through your writing. The new diagnosis may give you greater clarity and management options, but it doesn’t change the fact that you are a whole lot more, too. Welcome back.

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    • Thanks Rachel, the honeyed warmth of that comment brought a smile to my face. While it takes some adjustment to shift from something that was long held to be ‘intrinsic’ to me, the new diagnosis doesn’t trouble me at all. I don’t really see Aspergers as a disorder inasmuch as the challenge isn’t my behaviour, it’s minimising the friction between my behaviour and society’s expectations.
      Thanks for the heartfelt welcome.

      Reply
  5. Sorry to hear you’ve had such a rough few months. Sending best wishes and hope things improve soon

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  6. What a brilliant post you have written highlighting what must have been a really difficult time for you. In sharing this you will be helping so many others experiencing similar issues. You sound like a very strong woman (And a very eloquent one) and whilst I am sure there are days you don’t feel very strong, hang in there, it will get better. X

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  7. This is probably a really confusing time for you. I can only speak as a mother of a teenager with Asperger’s syndrome and another who it has not been decided what it is. But what I can say is that you are still you – whatever brand or label they try to use to help you make sense of the World, you have not become someone else and that is what matters.

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    • That’s what I meant when I spoke of it having the capacity to change everything (how I view what’s passed) and nothing (I remain the same). It’s huge and strangely insignificant all at the same time – how do you get your head around that???
      Also, because of the vast range of ways autism manifests it’s difficult to get a clear picture of how to describe it to the uninitiated. I can recognise aspects in myself but am still a long way from being able to succinctly explain my behaviour. Communicating that clearly and concisely to someone else seems like trying to scale a mountain.
      On the plus side it’s given me lots of reading material…

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  8. I am sorry that you are experiencing these problems and I hope that you can now work though it and find a way that works for you x

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  9. Sorry to hear you have been going through a difficult patch…I don’t know much about the conditions so cannot offer any advice…. as you say take each day as it comes x

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  10. As someone who has mental health issues I know that the correct medication is essential and can understand what you have been through. I could not have coped with the technological issues whilst in a dark place so well done for getting this far,

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  11. A sudden aversion to coffee?!! Reduce the pills and fast ;) (PS. Good to have YOU back!)

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    • I know! As if I didn’t have enough to deal with, eh!

      Reply
  12. I am so sorry to hear you are going through this – I would never wish depression on anyone it is just so awful :( x

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  13. Aisha,
    What a deeply troubling, confusing time for you. As others have said, just because there’s a new ‘label’ it doesn’t change the essence of who you are… a loving mother and wife, an insightful, thought-provoking writer and an advocate for others who suffer as you do. You’re not leaving your tribe, you’re expanding your understanding of the difficulties a diagnosis of mental illness brings (from the inside). Please don’t apologize for the time away. Your number one priority is you and your family. Waiting until you’re ready to share means that you continue to explore deeply and then open your heart in the interest of helping others. We’re here to listen, comment and support even during times of silence.

    Sending lots of hugs and healing energy,
    Anne

    Reply
    • You always know just what to say Anne – I can feel that loving, healing energy from here and feel lucky to have a link to someone as grounded and compassionate as you.

      Reply
  14. I’m sorry you’ve been through such a crap time recently :( It seems like just one thing on top of another. I really hope things start to settle down a bit xx

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    • Oh that’s life isn’t it – the stuff that happens while we’re trying to make other stuff happen ;-)

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  15. Your posts were certainly missed! BPD or Apsergers or whatever they want to label it as does not change the essence of you. You are a great person and a wonderful mum to your kids. I am happy you are getting professional help for all of these issues. At least you can explain and understand why these dark moments happen. I had always been and always will be impressed by your resilience and determination because no one who would ever be able to tell you have these issues. Good luck with everything. Hugs to one of the sweetest child I know, Sooraya.

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    • Thanks Towhida, it’s wonderful to hear from you and feel the warmth of your support. The ability to conduct one’s life so well that no-one knows anything is amiss is, unfortunately, exhausting. My goal is to close the gap between the person who presents an ‘acceptable’ face to society and the one who needs a day to recover afterwards. Big squeezes to the girls xxx

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  16. What a crap time. I really hope the re-branding will bring some illumination and eventual peace.

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  17. You are a wonderful soul and truly brave for sharing your deepest thoughts, and fears, in that your words might help others facing similar issues. We have all missed you, and trust the pills will soon be finished, the coffee back in the pot, and your wisdom on the screen. x

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  18. Great post and so heartfelt. I am so sorry that you have been struggling. You are such a strong person and we are all here to support you. Sending you lots of positive vibes xxxx

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  19. so sorry you ‘ve had a rough time , I hope things brighten up for you

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  20. Wow thank you for sharing your thoughts and recent pants experience. It’s a really brave thing to do when you pour your heart out on your little piece of cyber space. So sorry to hear you’ve been poorly…life throws us some wicked curve balls at times, but coming out the other end stronger, healthy and hopefully wiser can be good and positive thing. Makes us appreciate our lives and most importantly our health. x

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  21. You know I was wondering… where you were, as you post so regularly and write so well. I also admire your wonderful meals and snacks and dream of replicating them – ever thought of writing a cook book! And boy you share your experiences, thoughts and insights SO well, it really is almost tangible. SO I feel for you, I admire you for sharing and I send hugs and support as you negotiate your news and learn how you are going to live with the new diagnosis. Heartfelt appreciation and best wishes…

    Reply
    • Thanks Louise, it’s always nice to know you’ve been missed isn’t it? Hopefully I’ll get back into my stride soon; this is one of those times when a step back and some space to reassess is needed to make sure I’m being true to my ‘path’. I appreciate the support :-)

      Reply
  22. So many different challenges to contend with – without coffee, as well! – no wonder you’ve taken a well-deserved respite from blogging. As for the shifting diagnosis, I can imagine how disconcerting it might be. But in the end, your former tribe is still your tribe, as well as your new one. Your ‘diagnostic credentials’ are not you, merely one aspect (albeit an important one, at times). As BringChange2Mind reminds us: many diagnoses, many tribes, one tribal nation. Welcome back Aisha

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  23. Dear Aisha, you have an exceptional writing talent – adding to that your exceptional courage to share your struggles with the world, makes you … well, exceptional! You have no idea what it will mean to many others to read that they are not alone and that there is someone as wonderful as you telling the world how it feels. Thank you on behalf of everyone who reads, but might not have the strength to comment! Sending you love from across the pond.

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  24. What an awful time you’ve been having. Hopefully things can now only get better.

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  25. I hope that things will pick up for you. There is always a light in the end of the tunnel sometimes just the tunnel seems so damn long…

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  26. Hope you are able to change your pills soon. You seem to have a lot on your plate with your health and your sons, Hope things get better soon. Good luck

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  27. Good luck with your journey lovely. My son has aspergers, and I had heard that they were removing it as a separate diagnosis from the DSM V. I’m glad to hear that’s not the case – we had many angry mums at my local NAS group. Keep sharing x

    Reply
    • Aspergers has been removed as a standalone diagnosis from the DSMV but many people still refer to it, including the psychiatrist who diagnosed me. It doesn’t change what the person lives with, it’s just semantics. It now comes under the umbrella diagnosis of Autism Spectrum Disorder (ASD). The move from DSMIV to V is still transitioning, but the physician-in-chief of Ontario Shores Centre for Mental Health Sciences told me early indications apparently show the change hasn’t had an adverse effect on those at the higher functioning end as was initially feared. It actually brings people who might previously have been deemed ‘not disabled enough’ into the treatment/assistance fold.
      Thanks for your support and encouragement it means a lot.

      Reply
  28. Sorry to hear you’ve been going through a difficult time. Hope things improve now that you’ve got a diagnosis xxx

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  29. A really brave post, but as usual for you, it’s beautifully written too. Sounds like you’ve been through a lot, but don’t forget that whatever the diagnosis and medication, you’re still you at the end of the day. Best of luck with this. Hope you get back on the coffee soon. And it’s good to have you back.

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  30. Sorry you have to go through this. As you know, I can identify. Once again you had the courage to share what most including myself, are afraid or uncomfortable of doing. For that I applaud you. Sending you much love and thinking of you more than you know. ♡

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  31. Sorry to hear that you are having a rough time. Great that you have an outlet and all this support! And good on you for being so brave and open about everything. xxx

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  32. Sorry to hear you have been having a tough time. Lets hope things start to pick up very soon xx

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  33. sorry to hear you are having a rough time, sending best wishes! x

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