✚: Do you have an official diagnosis or diagnoses? What are they?
- Multiple sclerosis (MS).
- Clinical depression.
- Narcolepsy: this is on my medical notes as a diagnosis but see below for explanation.
- Poly-cystic ovarian syndrome (PCOS).
☓: Do you believe in self diagnosis?
Yes, because, had I not done a BSc Biochemistry, met a number of people with MS over the years and already worked out that I probably has MS, I would not have pushed to get the appointments and referrals and never been diagnosed with MS. Or PCOS. Or Narcolepsy. Or clinical depression.
I knew there was something not-right with me as a child. I remember asking if I could have an SOS Talisman in Boots one day and mum telling me not to be stupid. Now I wear one all the time. Heh.
My first episode of vertigo was at age 9 and at age 13 I had 18 months of such bad back pain that I had to give up trampolining (and PE - I loved trampolining but I hated PE due to the undiagnosed fatigue) for that period of time, even thought various doctors and specialists could find nothing physically wrong with me. When I was diagnosed with the MS the neuro took an extensive medical history from me and said that these episodes were likely due to the MS and that the "back pain" was likely due to muscle spasticity in the columnar muscles either side of my spine. A symptom that has been resurfacing recently.
I am currently of the opinion that I am on the autistic spectrum (Aspergers probably) and I am not going to bother to try to get a diagnosis for that, at this point in time. I just don't have the spoons/energy and there is no medication/treatment for ASD because it is just a different way of thinking.
☯: Are there any disorders or conditions you think you might have that you aren't diagnosed for?
✞: Do your religion and your mental health have anything to do with one another?
ENORELIGION - Out Of Religion Error.
Although, I actually think my "religion" of science and rationality did help me, in some degree, to push for diagnoses in my 30s, as discussed above.
✡: How much do you tell your family about your mental health? How do they feel about it
Well, my family know about my diagnoses and medications. I am not close to my mother or father (who has schizophrenia). I tell my brother a lot more and have been discussing the ASD possibility with him via email. My husband, of course, knows all of this and is my carer now that I cannot drive, shop, cook or do housework.
✤: When were you first diagnosed?
- Multiple sclerosis (MS): age 30, 1998.
- Clinical depression: Back at uni in the late 80s.
- Narcolepsy: Around 2002 or so.
- Poly-cystic ovarian syndrome (PCOS): I forget exactly - 1999?
★: Are you currently seeking help from a mental health professional? Do you like them or dislike them?
I am not currently seeing a psychiatrist, psychologist, therapist or counsellor. I am currently on citalopram (Celexa in the US?), though.
✱: What's your opinion of the mental health system in your country?
My GP can only offer me 6 counselling sessions under the NHS and/or referrals to the P-docs mentioned above. Even the counselling that I had in the 00s was means-tested but pay-for/private/non-NHS.
❤: Does your diagnosis/disorder/what-have-you affect your romantic life at all?
As mentioned above hubby is my carer. Also the MS/medications have removed my libido, so, yeah.
♫: Have you turned to music to help you cope? What's your favourite music for this purpose?
Not really. I do listen to music to suit my mood rather than to alter my mood, though. Some of my angry music that I listen to when I am depressed (e.g. Trent Reznor and Thom Yorke) help me be angry rather than morose, though.
☮: Do you describe your moods or different aspects of your diagnosis with certain terms that other people might not know? Explain.
I probably over-share a lot. I may not post much about these things on my LJ any more (but I do log my sleep patterns and some symptoms on natdaylog and log other stuff on paper) and may rarely speak to other humans face to face other than hubby but I err on the side of telling complete strangers *why* I use a stick and other things. Yes, over-sharing is a possible "symptom" of ASD.
ø: What are some of the best and worst comments you've gotten in relation to your illness?
"You don't look sick!"
"You are not in a wheelchair so should not have a blue parking badge!" (before I started using a walking stick all the time).
Best? Not sure. One of my "traits" is only remembering the bad stuff. I have had a few comments about being so strong and an inspiration, but I am not here to be someone's disabled-inspiration-porn. Yes, I am proud of what I can still do but I also miss some of the things that I can no longer do.
✎: How does your illness affect your work or school?
Well, I can no longer work due to the narcoleptic MS fatigue and barely made it through school/uni by getting doctor's notes for exams (I now find that my exam stuff was likely another ASD trait). I no longer work and am no longer in school or uni. I am teaching myself everything that I can about knitting, though. YouTube is an awesome resource!
✿: How does being neuro-atypical affect your day do day life?
It has affected it a LOT in the past and still does today although now I am starting to understand myself better, I am able to cope a lot better. The ASD thing is also helping me to understand other people in my life who may be undiagnosed ASD as well.
☢: What's your opinion on medication?
It is great for treating symptoms and each medication affects everyone differently due to our differing biochemical/genetic make-ups. I am pretty content with the cocktail of meds and supplements that I take every day and occasionally stop taking one or another supplement in a semi-scientific manner to see if it really does make a difference. If nothing changes then I don't tend to restart taking the supplement.
☁: What are the hardest and easiest parts of your condition for you?
- Multiple sclerosis (MS): vertigo stops me leaving the house on my own and spasticity HURTS.
- Clinical depression: I am well medicated now and, to be honest, I am pretty levelled out and content and it is as if I do not have this any more.
- Narcolepsy: This diagnosis is probably really a diagnosis of convenience so that I could be prescribed modafilnil/Provogil for MS fatigue as it is only licensed for narcolepsy in the UK. While I was still working (until 2000) I would take it every day to get through the day without a nap (and probably nap as soon as I got home) but these days I only tend to take it when I need to be awake at a specific (morning) time for an appointment and/or for the whole day. The last time I took it was for Granny's (dad's mum, also had schizophrenia) funeral.
- Poly-cystic ovarian syndrome (PCOS): I used to have a completely irregular menstrual cycle and wildly varying pain levels but, since my endometrial ablation and since I started using a mirena coil, I no longer menstruate and no longer get the pain issues. This is good because the "cycle" would make my MS and mental symptoms a lot worse - I was sometimes pretty psychotic during my bleeds, for example. Also, added from comments:
"My diagnosis was based on an ultrasound of my ovaries and the fact that I grow hair on my chin and neck - I would have a beard if I did not pluck! The overweight and low fertility aspects are the least of my worries, to be honest, but I see that those symptoms might be a problem for others. I did actually take metformin for a while in case it helped me lose weight (this was years ago when I was still active and working) but all it did was make my menstrual cycle more hassle for me (this was before the ablation and mirena)."
ϟ: What misconceptions do you see a lot about your condition?
- Multiple sclerosis (MS): we are all in wheelchairs and doubly incontinent. Also that there is no pain from MS (told to me by a pain clinic doctor, most recently). That we are lazy benefits scroungers.
- Clinical depression: that we are all psychotic serial killers.
- Narcolepsy: see above for explanation about how this is not a "real" diagnosis.
- Poly-cystic ovarian syndrome (PCOS): that we are all neurotic women that are desperate to give birth.
ⓣ: How do you feel about tumblr's view of mental illness?
I had no idea that a website could have a view or opinion. Perhaps this question means tumblr users? I have no idea to be honest. Most people that I follow on tumblr are also neurovariant in some way.
▼: Do you believe in ableism towards people with mental disabilities?
Oh yes. Don't get me started because I am almost out of spoons from writing all of this.
☠: How serious/significant do you consider your disorder? Why?
- Multiple sclerosis (MS): progressing slowly but Copaxone injected daily has prevented any major relapse since I have been using it.
- Clinical depression: also maintained by meds.
- Narcolepsy: n/a, see above.
- Poly-cystic ovarian syndrome (PCOS): maintained by ablation and coil.
♡: How do you feel about people putting their illnesses in their sidebars/freely advertising them?
Well, I share and I am proud of people who are happy to share their lives with us because that way more people read about these things and the more "normal" these things are.
✂︎: What's your favourite self care thing to do?