Thank you to all the people who read yesterdays post and commented - here, twitter and blipfoto. I was overwhelmed by the support - it really means a lot to me.
So on the theme of transparent I was thinking that I should be more transparent with work!
Yes they know about my conditions - I applied for the job as a disabled person, I have never hidden this fact, I have been open and honest. But have I?
Like many people with chronic conditions I gloss over the truth - I have long learnt that when people ask "how are you?" They do not want the truth. Not the truth, the whole truth and nothing but the truth. The answer that is preferred is "yes I am ok, getting there, much better".
I have given little talks in team meetings, I written accounts of me and ME, I have always said ask me questions. I really do want people to ask me questions to talk to me, but even then on the odd occasion that they have I feel I am either too honest or too guarded (depending on who they are). I have only ever had one team leader (god I hate that term - manager) who has actually asked for more and even went as far a borrowing a book and reading some of it to understand.
I have trust issues I am beginning to realise just how much these are in evidence.
I became ill when I was a teenager - friends drifted away, lost interest long before I had a diagnosis. I even had a friend who thought I was claiming benefits just because I didn't want to work - easy money.
How could they not understand?
But my issues with trust don't just stop with 'friends'.
During those early years of not knowing what was wrong with me - constant throat infections, pain, tired, dear god I could sleep for 24 hours and the mere fact of getting up would exhaust me. I also was dealing with cluster migraines and seeing neurologist (not that it did a lot of good - Migraines are triggered by a series of 'environmental' factors and I exhausted their drug suggestions ranging from full on anaphylactic reactions, mild reactions, intolerances and just down right tripping out). But during this time trust issues with doctors was really thrown up into the air.
I had bad experiences with doctors before, but not their fault (that doesn't make sense - as a young teenager I went to to doctors and didn't see 'my' doctor and I felt I was dismissed as a stupid child bothering their precious time all I had was a little throat infection - turned out I had scarlatina (aka Scarlet Fever), but then that's how it presents at first - I remember being a bit out of it and my Mum taking my temperature and declaring that I must be dead or the thermometer was wrong - I wasn't dead and the thermometer wasn't wrong I had a temperature of 105 F. So not the doctors fault that I was ignored but start of trust issues. Ummmm maybe an early trigger for the ME now I look back, I guess we will never know).
Real start of trust issues came when I went in with yet another throat infection - I was at college probably around 17 and I had no choice but to see a locum - now this locum had been reading my notes and declared that I should be on the pill - no medical reason other than my age and obviously at 17 I was having sex and lots of it and hoping into bed with anything that breathed!!!! I was a little taken aback, shocked, not really sure how to handle it I stammered that I didn't need it as I was still a...a.... virgin (OMG I know 'cause like that is sooooo shocking). Now I could also have countered that if he had been reading my notes he would have seen that I was receiving on going hospital treatment for migraines and I was on regular antibiotics but didn't - shocked, I was and still am very shy.
Ok so thats bad doctor 1 (or 1.5!)
Bad Doctor 2
I was on a field trip with college in Devon - when my lips started to tingle. Panic. OMG I know what this means. No I am imagining it. Nope lips really swelling up. Antihistamines, wait 10 minutes - oh god has it been 10 minutes yet. Still swelling. Antihistamines. Antihistamines. Get help. 999. Paramedics. Adrenaline shot. Nearest A&E required ferry. Last ferry gone. Arrange for a doctor to meet us at local medical centre. Well did the doctor meet us - no. I spoke to him on the phone.
Ok actually not so bad - you see there was actually nothing that he could do for me - me and the paramedics had done it all.
As that was my second medication related allergic reaction, I got an epi-pen after that (auto injector of adrenaline - life saving, essential and yet I still have to pay for it!)
Bad Doctor 3
The hospital had prescribed me an anti epileptic drug for migraine prevention - now this medication made me feel strange so intuition told me to stop taking it. I had been seeing Uber Doctor (ie the one that they actually make your appointment with) I then got past off onto underling - who declared that ME (which I mentioned because of medication reactions) was psychological and that I should have continued with drug, in fact I should re-start taking at a higher dose and I was not to stop. Well ok ME thing fuming but drug thing, figured he is a doctor. So started taking it again - carried on taking it despite odd feeling - had blood tests that you have to have on the medication. All fine. I still felt odd. Mentioned to my GP how I felt on it - kind of out of it, a bit spacey, not really there - he hit the roof, told me to stop taking it immediately, no reducing - stop and never take it again.
Bad Doctor 4
I was visiting a friend in Wales and I knew that something just wasn't right - I was taking antibiotics for a throat infection. Well my neck went into spasm. I was in so much pain that I went to A&E. Again I don't feel that I was listened to, I suspected that I was having a form of toxic reaction. I was basically told not to be silly, I had slept wrong, go home take pain killers and use heat. Heat made it worse, over the counter painkillers = smarties for all the good that they do. Well I had to stay with my friend - I was stuck I couldn't drive. Well after an extra couple of days I decided that I could at least make it to Oxford from Wales that was at least half way to home in Essex and we had a house there that I could go stay. Well I made the drive I was slow and cautious and very very careful. By the time I made to Oxford I could move my neck a little bit, but I was in agony. I made my way up to my bedroom and laid down on the bed. So much pain. Now something in my head told me that if I didn't drive the rest of the way home (to Essex) that I would never see home again - its one of those strange experiences that I will never forget and cant explain beyond witch intuition. Now I did make it home to Essex and the next day I collapsed and yes you've guessed it tingle and swelling.
I knew the drill, we all knew what to do - this was back when some doctors would still give out home numbers and do real out of hours. Phoned doctor and he confirmed toxic reaction leading allergic reaction.
You see allergic reactions - don't always happen straight away, drugs can have an accumulative effect - that's how some are designed to work. Similarly you can be exposed to something with no problems for years and then out of the blue....ohhh my lips appear to be tingling.
Bad Doctor 5
I was working at a shop and they were really strict over time off and could be really funny. Now I was ill and desperate and asked the doctor for a sick note - she refused I was so frustrated that I burst into tears at which point she declared that I required CBT - ME people you will know. Non ME people - CBT = Cognitive Behaviour Therapy which in most cases for ME is counter productive.
Now I left that surgery straight away - and was glad that my old doctor was happy to erm bend the rules. He was shocked when I told him what had happened and said that CBT was the last thing that I needed.
Bad Doctor 6
No you cant possibily have PCOS - even though you have multiple symptoms.
Bad Doctor 7
You have PCOS - read this. You're one of the lucky ones.
GRRRRRRRRR
There have been good doctors. And fingers crossed so far so good with new surgery. Do miss the old days where you had a doctor, you saw your doctor, you knew your doctor and your doctor knew you. It can be exhausting having to keep re-explaining things.
Anyway so I think I may have gone a little bit off track.
Trust issues - people that I thought should have known better and people in authority.
So maybe not always been as transparent as I could/should have been - so I am going to write a bit about each condition - yes I said each - tell the truth and how it affects me.
Maybe I do still have a little bit of fight left! Or maybe I just simply want them to know! I am not sure yet.
But I have decided that I will continue blogging my journey and hope that my honesty will help. Help others know that they are not alone, help others understand, maybe even help someone else to have the courage to speak up.
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