‚ÄėHow can you not hear that??‚Äô communicating sensory difficulties

I have always had sensory sensitivities but never knew that was what they were called; I always felt like others thought I was just being dramatic, so I rarely said anything. It’s nice, in a way, to have these sensory differences acknowledged. ūüĆł

YennPurkis

I’m not sure if this is the case for anyone else but the older I get, the worse my sensory sensitivities are. I used to be able to eat almost anything and it all tasted good and had a texture which didn’t revolt me. Now I am anxious about going to restaurants in case they have nothing I can happily eat.  I eat exactly the same dish every night unless I get take away, in which case I usually order the same dish! (Except for pizza. I think it’s pretty hard to make pizza horrible). To the horror of my vegetarian, vegan and health conscious friends, the things I am able to eat mostly come from the meat group or the sugar group! I am only 42 so worry that if I get old I might only have one thing I can eat!

I also have an increasingly heightened sense…

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Migraines.

I’m fed up of getting migraines.

First, I’ll apologise that it’s been quite quiet on Facebook, Twitter and here. ¬†In the lead up to Paul and I going away for a four-night break, trying to get life sorted was proving to take a bit more energy than usual. ¬†I don’t like sharing articles on Facebook unless I’ve actually gotten to read it first (and make sure it’s not just click bait) and I’ve just not had the mental energy to process whatever I’d be reading.

Since we came back from our little holiday, not only am I contending with my period kicking in a couple of days late (no scares, though – no little cherry blossom buds anytime soon! ūüėČ), but it seems like my migraines are starting to become a bit more frequent again, which troubles me.

I’m not stupid enough to Google every time I have a headache because WebMD has predicted my demise no fewer than a dozen times. ¬†However, I heard on the radio the other evening of a woman was left with severe brain damage after medics at the hospital¬†did not correctly diagnose her severe headaches as being the result of a devastating brain infection; this happened in 2009, but it was in local news because a financial settlement was reached due to the negligence in her case. ¬†Things like this terrify me. ¬†It’s not like I’m a hypochondriac or anything, but I can’t help but think whenever I get one of these migraines seemingly out of nowhere – “is this how I die?”

I’m grateful that I am able to get Imigran (sumatriptan) through my NHS prescriptions, as it is quite expensive to buy over the counter (or from behind the counter, as a pharmacist would have to agree to sell it – it’s not like ibuprofen!). ¬†However, I’m becoming concerned with how many I’m having to take in order to kick a migraine fully.

When I started taking Imigran (after codeine and some other anti-inflammatory didn’t work), one 50mg tablet got rid of it within an hour. ¬†Brilliant! ¬†To get my life back within an hour when before I could be laid out in bed for a day and a half was amazing. ¬†As time went on though, one 50mg tablet would get rid of it within an hour… but it would sneak back after about 24 hours. ¬†Another tablet and then it would seem to “take the hint” and would jog on. ¬†Then it was one 50mg tablet… then another 24 hours later… then another 24 hours later. ¬†So I read up if it was safe to take more than one (which it was, for me). ¬†So when a migraine kicked in, I’d take two 50mg tablets… within the hour, it was gone and wouldn’t come back! Brilliant! ¬†So a couple of months ago, after tracking this for a few months, I asked my GP if my dosage could be increased to 100mg. ¬†She was reluctant to do this but instead increased the number of tablets I would get whenever I received my prescriptions (up from 12 to 18).

Fast forward to Sunday just gone. ¬†Period kicked in three days late and with a vengeance. ¬†Dull all-over headache, not sure if it was a migraine as I wasn’t too sensitive to movement or smells, though a bit sensitive to bright light. ¬†Took 2 ibuprofen, but this did nothing whatsoever. ¬†Tried going to bed at just gone 10pm… couldn’t fall asleep. ¬†Took one 50mg tablet and went back to bed… must have worked a treat because I next woke up when I was supposed to, though after I got out of the shower and got dressed for work, the “fuzziness” was coming back, so I took one more 50mg tablet and went to work. ¬†By the time I made it to the office, all was good in the world again (as good as it could be for a Monday morning), so I cracked on with my first day back from leave – 128 emails to sort through? Okaaaay…

By the time I headed home, the heavy headed fuzziness was coming back again. ¬†I persevered for the rest of the evening, hoping it was just the stress of the first day back causing it and that having a quiet evening in would help, but it wasn’t relenting at all. ¬†Again, it wasn’t restricting me from doing¬†anything, it was just making me feel really tired and not keen to do anything. ¬†At bedtime, I took two and hoped that this would sort it out once and for all.

Tuesday morning,¬†I woke up feeling great again. ¬†Business as usual, no big deal. ¬†Just after lunchtime, someone came to work in the touchpoint room where my desk now lives (see¬†Reasonable Adjustments) who STANK of cigarettes. ¬†The room was quite warm too, which was making it worse. ¬†My throat was becoming more hoarse as the afternoon went on and it was becoming intolerable (not sure if I’ve ever mentioned before, but I am asthmatic too); the headache was also creeping back. ¬†I ended up leaving a bit early because I just needed to get out of this man’s proximity. ¬†I went to join the motorway and saw standstill traffic (most likely a collision), so had to quickly loop round the junction’s roundabout and re-route myself. ¬†I had brought my gym stuff with me to go have a little workout before Pilates last night, but with the rural re-route adding nearly 20 minutes to my drive, I was feeling so drained. ¬†I had to pick Paul up on my way home too and he could see from my face that I was just in need of going home and staying there, so we didn’t go work out and we didn’t go to Pilates either, which really bummed me out. ¬†The headache lingered all evening and would not bugger off. ¬†Determined to not take another Imigran, I took 4 ibuprofen instead a couple of hours before going to bed, and by the time we got upstairs to go to bed and it hadn’t kicked in, I knew that I was likely going to need to take more in the morning. ¬†To help me sleep in the meantime, as I feel a cold creeping in, I took a dose of NightNurse and had a quite peaceful night’s sleep (though some baked-out dreams!).

That brings us to this morning. ¬†The headache was still there. ¬†It’s not typical (at least not for me) to keep coming back like this. ¬†Again, I took two 50mg tablets before going to work, and so far, so good (thankfully Mr Smoker has not set up shop in the touchpoint again today!). ¬†I’m really worried though that if I wake up with the headache again tomorrow, should I be ringing the GP? ¬†NHS 111 helpline?

I hope that it has just been a bad combination of overlapping triggers – hormones, stress, environmental aggravation – and is not foreboding to something more sinister.

I’ve not looked into the incidence of migraines among Aspies and wonder if any research has been done on the subject… another search for another day, methinks.

Please comment below if you suffer from migraines and if there are any particular remedies which work for you, or if you have any insight into what I’ve described in this long rambling post! ūüė䬆ūüĆł

Interview with Samantha Craft of Everyday Aspie

When Samantha Craft of Everyday Aspie posted on her Facebook page about doing a “blog tour” of interviews with other bloggers, I had to reach out!¬† She may be best known for doing the unofficial but widely shared list of¬†Ten Asperger’s Traits (Women, Females, Girls) – one of the first lists I came across during my preliminary investigations into my own Aspie-ness.¬† I am grateful for her time in completing my interview questions and I hope you enjoy getting to know more about her! ūüėäūüĆł


Firstly, thank you for your time and welcome to …i am my own experience… and this “stop” on your blog tour!

Thank you for taking the time to interview me.¬† I love the name “Cherry Blossom Tree.” ¬†I have a beautiful aged cherry blossom tree right out my dining room window.

I’ve really enjoyed reading your book, Everyday Aspergers¬†[Amazon UK eBook], and understand that it took ten years to compile and get published – a big achievement indeed!¬† What brought you to writing a blog in the first place?

Yes. I am quite relieved the process is over. ¬†It still feels a bit unbelievable.¬† Thank you for taking the time to read the book. ¬†I appreciate that. ¬†I began blogging in my mid-forties because I was confused by my own diagnosis in regard to what Asperger’s meant to me and how it related to who I already was.¬† I also continued writing because of an experience I had at a university I was attending, in which I was shamed for mentioning I had Asperger’s Syndrome.¬† I was motivated to keep writing to show others they weren’t alone and to spread the word about autism, particularly autistic women and late-age diagnosis.¬† But mostly, it was a place for me to process my own thoughts.

Can you tell me about what has helped you in blogging?

Hmmm.¬† That question can be taken a few different ways.¬† What helped me to blog was all of the thoughts and ideas I had in my head.¬† Getting the diagnosis triggered this whole self-analysis, and that in turn triggered my need to express myself through writing.¬† I’d say the angst inside was a primary motivator, that and the initial support (and later ongoing support) that I received from other bloggers, and later on fellow Asperians

How would you describe your blogging style?

At first I largely entertained.¬† I thought I had to produce something of value to keep anyone interested.¬† There is a lot of humour in my writings during¬†the first year on my blog Everyday Asperger’s.¬† Later, I started to write from the heart, to purge my soul, so to speak.¬† I would simply sit at the computer and listen to myself tell me what to write.¬† It was similar to taking dictation.¬† I just wrote what I heard… my fingers typed.¬† It was a¬†very healing process¬†and very therapeutic.¬† I rarely set out to write on a specific subject or topic, and let what was in me rise up and spill out onto the pages.¬† Most of my time went to editing, sometimes a few hours,¬†because of my dyslexia and dysgraphia and the way I process language.¬† The content itself flowed out quite naturally, and sometimes too fast for my fingers to keep up!

Was there a particular author/writer who inspired you to write?

No.  I did run into AlienHippy at the start.  She has a wonderful Christian-based blog on her experience as an adult Asperian.  If anyone motivated me to continue on, it was her, and a few others; not because of their writing, but because of their kind spirits.

Can you briefly explain for my readers about when you first wondered if/realised that you might be on the Autism Spectrum?

I first seriously considered I might be on the spectrum after I had been taking my middle son to therapy.¬† As part of the requirement for the master’s degree program in counselling I had started, I had to visit a mental health therapist.¬† She happened to be my son’s therapist, and I asked her if she suspected I might have ASD, and she was most definitely sure I did.¬† From there, I sought out an official diagnosis.

How has writing your blog helped you during your diagnostic journey? Has it been a hindrance at all?

The only hindrance happened when one person was offended by something I did/said on Facebook, which I cannot remember at this point, nor can I remember the person’s name.¬† (That’s one of the benefits of dyslexia, face-blindness, and short-term memory issues – I don’t often remember people who, at one point or another, caused me strife).¬† I was deeply vulnerable the first year or so after I was diagnosed and took people’s opinions to heart.¬† I have sensed grown a lot and have tons of strength.¬† But back then, I almost stopped blogging based on judgments and assumptions a person was not only saying about me but spreading on Facebook.¬† I actually wrote a post about the entire experience, not referencing the person or supplying clues about the person.¬† I didn’t wish any retaliation to come that person’s way.¬† I was deeply hurt.¬† But overall, astonishingly, with well over 1 million hits on that blog, that was the only incident!¬† I certainly didn’t think when I started I would be blogging over four years, that’s for sure.

When did you get the idea for My Spectrum Suite? How long did it take for it to become what you hoped for it to be?

When I was about to publish my book, I wanted to form a company to represent the book, beyond the publisher.¬† I wanted a place to display activities associated with Asperger’s, speaking engagements, and share about some of the awesome people I met on the spectrum.¬† I created Spectrum Suite to showcase Aspergians’ gifts in art and literature.¬† I also have a great resource page their of other ASD professionals and artists.

How has becoming a known name in the online Autism/Asperger’s community been for you? What (if anything) would you change about it?

It doesn’t feel real most of the time.¬† When I went to the FABULOUS ANCA Worldwide Autism Festival event in Vancouver, Canada in early October this year, I walked into a formal award event and the sweetest lady (animation artist), Liz, turned around and said, “Are you Samantha Craft?¬† You are my idol.¬† I’ve been following you for years.”¬† Then the lady behind me, another nominee up for Community Mentor, tapped me on the shoulder and whispered with a smile, “I follow your blog, too.”¬† Turns out most of the women from the US at ANCA¬†knew of me or my blog.¬† That felt strange.

I don’t often¬†feel emotions about what I’ve accomplished.¬† I know logically I have accomplished something but don’t feel any sense of pride.¬† The process¬†felt necessary and natural to me — to process, to share,¬†to¬†give, to connect, to write.¬† It wasn’t something I set out to do; meaning, I didn’t set out for people to know me.¬† When I do feel a sense of accomplishment is when I am able to connect one autistic to the others I know and form new friendships and companionships for individuals.¬† I am most happy about that.¬† I cry about that.¬† The rest doesn’t seem significant, even though perhaps it ought to.¬† Kind of like if you brushed your teeth and got thanked for it.¬† I was doing something I felt I not only needed to do, but had to do.¬† It was my calling and soul’s purpose.¬† And I benefited from the experience internally, just as much as anyone else, if not more.

I’m quite excited to be part of the International Aspergirl¬ģ Society with you! As it’s still quite new, what do you hope for the future with this Society and for Aspie women and girls?

That’s great you are a member.¬† With all I’m doing, you need to nudge me and remind me to pop on in.¬† Rudy has some great videos listed there.¬† I¬†hope that her¬†vision for the society is reached and that more and more women find a voice, connection, and a way to use their gifts.¬† I think organizations like Rudy’s can go along way in providing opportunity, education, awareness, and a safe place for autistics.

If you had the chance to speak to your younger self, what advice would you give her?

I actually wrote a letter to my younger self twice in the book.¬† One about letting her know everything is going to be okay and one about puberty and boys.¬† Those are the things I’d still tell her.¬† I’d let her know that despite what she thinks she is brilliant, loving, pretty, and going to be safe one day.

To conclude, what would be five random facts about you that no one would ever guess? [these don’t need to be too personal, but just a bit fun!]

Oh, that’s a great question! ¬†Let’s see.¬† Most people know so much about me! I like to joke I am a literal open book now . . . hmmm . .¬†Off the top of my head:

  1. My uncle dated Patty Hearst. (I love to share that one for some reason)
  2. I am very self-conscious of my upper arms, and have been since I was in my 20s.
  3. I get mad at myself, if I think anything judgmental about anyone.
  4. I don’t know if I ever want to write another book, after the long process to write the first.
  5. I love my toes. They are really cute.

Thank you for this wonderful interview. Thank YOU for your lovely responses!


Please be sure to check out Samantha Craft’s pages across the Internet!