Thursday, 19 March 2015

Princess Interview with Queen Siân

Yes I am doing an interview with myself but I thought I might as well kick off this series of Princess interviews with my own experiences. Lead from the front, as it were. I already have a few interviews from other Princesses to be uploaded soon, however if you want to join Team Princess and do the interview too then let me know. 
When were you diagnosed? And were you ill for long before then?
I was diagnosed in September 2011, 4 months after I collapsed and fell asleep for 3 days, needing to be admitted to hospital. However I have had a chronic illness since the age of 14 and suspect that with hindsight the years before I was diagnosed I possibly had mild ME.
What did you do before you had ME?
Before I got ME (or definitely knew about it) I was living my dream doing an MA in stage management at drama school and stage managing a production. At times I felt like I needed to pinch myself. I felt so lucky. I had fought some tough mental health battles to be there too and was feeling happier and more confident than I ever had. I used to get quite anxious about going out on nights out etc as I always felt a bit of an outcast with not drinking because I could not tolerate alcohol. But I finally overcame this too at that time (the anxiety not the drink intolerance) and managed to start enjoying what felt like a more normal social life. Sometimes I look back and think what absolute rubbish timing but there really is no good time for something like this to happen.
How did ME first present itself in you?
In the months before I had been admitted 6 times in 6 weeks with severe abdominal pains. However with no diagnosis and being told nothing was going to explode I carried on working, getting in at 8.30am and sometimes not leaving until 10pm. I also fell down the stairs, twisted my ankle and a week later got an infection under my eye, causing my face to swell and needing to be admitted before the infection spread to my brain. It was obvious my body was trying to tell me something and I knew I had to try and slow down. However after going to the Summer Ball the next day I felt a real sense of foreboding, rather like the onset of a panic attack when you just feel you on the edge of doom. I knew I had to try and get home and so I phoned a taxi and jumped on the next possible train. I just about managed to stay conscious throughout the journey but as soon as I got into my brothers car I could no longer keep my eyes open. I was like that for 3 days, trying my best to communicate but not having the energy to even open my eyes. My GP came round to the house and did a series of reflex tests non of which I was responding too and so he called an ambulance to take me into hospital. When I was first admitted they were worried it could be meningitis as I was wincing at the lights and had pain in my neck. However after learning that I had been at my Summer Ball they starting questioning what I had taken. A junior doctor mixed up the levels of 2 paracetemol in my system given to help the pain in my neck as being enough to overdose and so of course I questioned all the more, especially with my recent history of mental health problems, and a psychiatrist was called to evaluate me. I felt so scared and upset because they were suggesting it was self inflicted when I was in fact at my happiest and of course I could not defend myself properly. Luckily the junior doctor was soon put right for her error. It was certainly the most vulnerable I've ever felt. They diagnosed it as burn out and suggested I get lots of rest to recover. So that's what I did, only things only improved a little and 4 months later I was officially diagnosed with ME.
What is the biggest thing that you miss that ME has stopped you from doing?
To be honest it's the little things more than the big things. Don't get me wrong I certainly miss being able to work and be able to go to the theatre often. However it's the little things that you have to face every day. Loss of independance is certainly a big gripe. Needing to virtually be babysat 24 hours a day. Not being able to even make your own breakfast or lunch and feeling like a pain in the backside for having to ask others. Then there's the loss of some dignity, having to get help in and out of the bath or shower and sometimes to help you on the commode, or just to lift your pants back up. They're things that I know I have to tolerate to be able to get by but I do certainly have times when I think to myself this completely sucks.
How do you remain hopeful and/or happy?
Honestly in some ways I think having had experience of mental health troubles actually in some way helped me to cope with this. I might not have my physical health but I have my mental health in a good condition. Hope, and happiness are two things I've been speaking a lot about on my blog lately. I think most of us are predisposed to just keep on hoping, no matter what life throws at us. We learn to see the good things more than the bad and even go out and make those good things happen. I try to take each day at a time, live only in the moment an to laugh as much as possible.  Plus I have some great people in my life, my amazing family and my spoonie sisters.
What were your reasons for joining The Princesses and ME/ Team Princess?
Well I founded it, with the support of some of the other Princesses. I wanted to do something to raise awareness on ME awareness day to show what ME really is and try to get it onto more peoples timelines and feeds on social media. The more people that at least see it, the better. One of the things that a lot of people face when they are diagnosed with ME is "what on earth is that? I've never heard of it." So getting the name out out there is just part of the battle. Also just to show that behind the illness are some very strong women.
Do you have any specific plans for what you are going to do for the event?
Overseeing everything and being attached to my phone for most of the day, making sure we get our message out there. I'll probably be filled with pride and possibly shed a few tears too.
If you had 3 wishes what would they be?
★ That a cure for ME can be found and everyone that has it can get better and those that will get it in the future won't have years of suffering
★ To be happy as much as possible
★ To be able teleport/ apparate travelling is so draining and painful. I love it, I just wish it was easier. Then I could see people more often and meet more of my spoonie pals.
Which Disney Princess do you most relate to?
It has to be Sleeping Beauty. I have always been a sleeper who loved a lie in. However since getting ME some days I can sleep for 20 hours straight. Although that's probably about all we have in common, I wasn't raised in the wood by fairies or pricked my finger on a spinning wheel, as far as I am aware. I'm probably more akin to Sleepy the dwarf. I would say I'm also a mix of Belle in that I tend to go against the grain and love to have my head in a book; also like Cinderella I'm a grafter and like Rapunzel I go after what I want.
I hope you have liked this post and that you get to know a bit more about myself and other Princeses that will be taking part in this series of interviews.
Queenie xx

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