"The time has come," the Walrus said,
"To talk of many things:
Of shoes--and ships--and sealing-wax--
Of cabbages--and kings--
And why the sea is boiling hot--
And whether pigs have wings."
(The Walrus and the Carpenter, Lewis Carroll)
A little bit rosy
Monday, 11 April 2016
Time to say goodbye...
Tuesday, 8 September 2015
Under Pressure
There is at least a reason I've not written it. Let me explain. (It's a long post - sorry!)
You may remember way back in March I wrote a post called Dear Depression. In that post, I mentioned my head being full of the sound of bees, that I was exhausted but couldn't sleep, that I was more accident-prone and more forgetful than normal... Little did I know, but they were all signs of something much bigger and much scarier.
What I didn't mention in that post was that my forehead sometimes felt like it was being squeezed in a clamp. Well, gradually over the next few months, the headaches started getting worse. On one day at the end of June, it was so bad I had to pull my car over and throw up in the gutter (not a highlight of my summer). Since then, I have averaged between 4 and 6 hours sleep a night; I'm permanently tired (even on the days when I did manage to sleep for 12 hours); my limbs began to feel like they belonged to someone else; I started getting migraines, both with and without a headache; I got dizzy whenever I stood up; I lost my eyesight a couple of times; the migraine auras stopped going away; I felt sick... It's been pretty horrendous. I just put it all down to stress, but went to the doctor about a month ago because it just kept getting worse and worse. To cut a very long story short, she couldn't find any medical reason for it, so just wanted to prescribe me medication to stop the headaches.
You might not have noticed (where have you been?!) but I'm quite stubborn, and I hate not knowing why something is happening. I can't just treat the symptoms if I don't know what the cause is. So I refused the pills and asked what my other options were. She didn't really have any, so I asked if it could be my eyes, and she said that an eye test wouldn't hurt (HA!). Off I toddled.
If you've had an eye test recently (if not, why not?!), you will have met the optician's favourite torture instrument - what I have termed the 'evil camera that blows in my eyes'. Basically, it takes a photo of the back of your eye while blowing air at your eyeball, which seems counter-intuitive since blowing in my eyes generally makes me close my eyes, thus resulting in lots of lovely photos of my eyelid and zero pictures of the target. Anyway, I'm sure it makes sense in Opticianland.
After about twelve attempts, the assistant was getting increasingly frustrated and almost gave up, but thankfully we had one more go and just about got it. I thought nothing of the photos until after the optician had done her thing, decided I needed a new prescription, and then opened up the pictures of my eyeballs on her screen. I should have known this wasn't going to go well when she asked if the doctor had done a CT scan (obviously not), but what I wasn't expecting was to be told to go straight to A&E. Do not pass go, do not collect £200.
I think I swore quite a lot, but to her credit (and the credit of the other two staff who rushed in at this point), no-one mentioned it. I didn't really understand why it was so important that she phoned a neurologist and I rushed to A&E, except that my optical discs looked like fried eggs rather than marbles.
I don't think the A&E staff really understood either, which is why I was still sitting in the uncomfortable waiting room at Edinburgh Royal Infirmary on a Sunday afternoon, six hours after arriving, with anaesthetic in my eyeballs making my pupils dilate to the size of dinner plates:
After six hours in A&E with VERY dilated pupils |
By this point, I still didn't really understand why I had been rushed to A&E. They hadn't done anything except make me look like I was stoned, which I'm guessing was not the optician's primary aim all those many hours ago. All I had been told was that my optical discs were very inflamed, which 'could be caused by something benign, but could be something more sinister'. Right.
Monday morning rolled around, and off I went to work, pupils still massive so still a little bit blind, and awaiting a phone call from a neurologist.
Fortunately I didn't have to wait too long for the call, and by 1.30pm that same day I was installed in a much more comfortable chair at Edinburgh Western General hospital. The neurologist was expecting me, took me through to her office, did all sorts of tests (called me a 'walking miracle' when I told her how accident prone/ disastrous I am - I much prefer that to 'walking disaster'), and then explained that there were a few potential causes for the 'fried eggs for optical discs' (though didn't explain what those causes actually were...) She wanted to do some tests, so sent me off for a CT scan and 'something involving radioactive goo'.
I have decided that, as much as I am a 'walking miracle', I also spread
Radioactive CT scan things are hugely unpleasant. If you've never had one, let me describe it. It's like having your head inside a washing machine on the spin cycle. You aren't allowed to move, not even a little bit. You have a needle in your arm which is connected to a machine that beeps occasionally. You have been warned that it will feel a little unpleasant when the radioactive goo is released, but you haven't been told when exactly that will happen, or how long the whole experience will last. When the radioactive goo is finally released, it feels like someone has injected liquid metal into one arm, which then spreads through your head, your other arm, the rest of your body and finally your legs. When it passes through your *ahem* nether regions, it feels like you have wet yourself in a most spectacular fashion. Except of course you can't move, so you can't check whether or not your dignity is still intact.
Before the CT scan, I was told that if the results were clear or inconclusive, they'd need to do a lumbar puncture, but we'd get to that if we needed to. So the relief of being told that there are 'no lumps, bumps or blockages', was very rapidly cancelled out by the realisation that I was about to have a very long needle inserted in my spinal column.
I'm not going to go into the graphic details, but the lumbar puncture was not an experience I ever want to have to go through ever again. I would take the radioactive CT goop experience any time over a lumbar puncture. I was ushered into a very small, very hot room, where I had to lie in the foetal position, without moving, facing a wall. Once the doctor had painted my back with cleaning goo and drawn arrows all over me (presumably like some sort of treasure map, with an X to mark the spot), obviously the needle wouldn't go straight in, so she kept hitting the nerves connected to my hip, sending shooting pains up and down my legs. When she eventually got in, she announced that the 'pressure is so high it's practically gushing'. That's exactly what I want - cerebrospinal fluid gushing everywhere. Uugh.
I have no idea how long I was staring at that wall, melting and occasionally twitching (to be fair, I had done A LOT of lying still. I'm not very good at being still, it's stressful). Eventually, she told me she'd finished, and showed me all of the 30mls of CSF she had collected. All that for half a teaspoon of brain goo (kinda). Hmm.
So, apparently the 'gushing' confirmed the suspicions, and I received a diagnosis. I have a rare condition called Idiopathic (ie, they don't know the cause) Intracranial (ie, in the head) Hypertension (ie, too much pressure) - basically, there is too much fluid in my head and since it has nowhere to go, it just squeezes my brain, thus causing the migraines, dizziness, nausea, flashy lights, swollen optic discs, exhaustion, etc etc.
IIH affects between 1-7 people in 100,000, and is most common in overweight women of childbearing age. I have been prescribed medication (with some bizarre side-effects - I'm sure there will be another post about that) and told to lose roughly 10% of my body weight (definitely a post or two about that). Next week I will meet an ophthalmologist to find out what, if any, damage has been done to my eyesight. And after that? Who knows...
The moral of this very long-winded story is that perseverance definitely pays off. I knew that there must be a reason for the headaches, even if the doctor couldn't tell me what that reason was, and I knew that taking medication to treat the symptoms rather than the cause wasn't the right thing for me.
I am so relieved to have a diagnosis, and despite the trauma the lumbar puncture seems to have made a difference already - for the first time in months, my head feels clear.
I am so thankful for the brilliant NHS staff who tried to help me, even if they had no idea what was going on. I am also grateful that the neurologist was able to see me yesterday, and that I had a diagnosis within 24 hours of being sent to A&E.
I'm pretty sure there is a long road ahead and it's not always going to be an easy one, but it's a hell of a lot less stressful now that I know what I'm fighting.
So. Once again, bring it.
Saturday, 25 July 2015
Inside Out - Part 1
One of the things we have identified is that I'm not really sure who I am just now. So much of my identity is tied up in work and Guiding, that I've sort of lost the joy, the spontaneity, the excitement and the confidence to just be me, whoever that may be.
The past month has been really overwhelming. This week's counselling session was the first where I really felt that there wasn't an obvious solution, and it was hard. I spent a lot of time repeating 'I just don't know. I just. Don't. Know.' I wish I knew what it was that I didn't know. I just didn't know.
So today, my car was booked in for its annual service. At 8am. Because that seemed like a good idea at the time (UURGH!) Of course, my alarm clock batteries died, so I woke up at 8.30am and panicked. I really wanted to cancel the service, to get back into bed, and to beat myself up for not even being able to get up in time to take my stupid car for a stupid service.
But something in my brain told me to stop being an idiot, to get dressed and to just take the car for its stupid appointment. Just put on some jeans and a hoody. Then walk down the stairs. Then get in the car. Then drive to the garage. Then explain to the lady at the desk why I'm there. Once that's done, I'd have a few hours to spare and I could be productive. There's a McDonald's next to the garage, I could just sit in there and do some life-admin. Easy (HA!).
I got as far as McDonalds, bought an unsurprisingly disappointing breakfast and decided to read a book for a while. A couple of hours and two large cups of tea later, I got a phone call. They couldn't service my car today because they'd over-booked. It was nearly 11am and I'd wasted perfectly good lying in bed doing nothing time in bloody McDonalds. I did later apologise to the lady who called me for being a bit rude (I may have used the words useless and incompetent, but I really didn't mean them - I was mostly just angry at myself for oversleeping).
Regardless, I was angry. And I knew I was angry, which made me sort of happy (because I recognised I was angry and I acknowledged it - that's a pretty new thing). Then I got all confused again, and wanted to run away and hide under a blanket on my sofa. But then I got frustrated because I didn't really want to hide, I wanted to be able to do the things that normal people do at the weekend without completely overthinking and freaking out. And then I freaked out and got angry at myself.
Eventually, I found myself at a local shopping park. Somehow, in the confused mess that is my head, the tiny part of my brain we call my subconscious decided to be spontaneous and decided I was going to go to the cinema.
In the past I-don't-know-how-long, I have been to the cinema exactly once to see a film that I actually wanted to see (I'm not including the two times in the past 18 months that I have been with Brownies - if I were to voluntarily go to the cinema, Penguins of Madagascar would not have been my first choice of film...). Going to the cinema is one of the many things on my list of 'I really want to do but I'm completely overwhelmed so I won't' (along with clothes shopping and generally being in public spaces on my own). There have been so many films over the past few years that I've really wanted to see, but either argued that 'it's cheaper to buy it on DVD', or 'what if I do it wrong?' (HOW DO YOU DO GOING TO THE CINEMA 'WRONG' STUPID-HEAD?!!)
To give you an idea of how completely overwhelming going to the cinema is, here is a list of the things going round my head in the (literally) fifteen minutes it took me to get from my car into the cinema screen:
1. Get out of the car. Just get out of the car.
2. Did I lock the car? (*goes back and checks car is locked*)
3. There are lots of small children around. Maybe this is a family showing. Maybe I should just go home.
4. Just buy the bloody ticket you stupid idiot.
5. That lady is dressed up in fancy dress and is smiling at me. Oh god, what if she speaks to me.
6. Phew, the small child distracted her.
7. Can I buy tickets at the machine? Yes, good.
8. Why won't it let me buy tickets for the midday viewing?
9. Oh, wait, I already selected the midday viewing. Phew. No-one saw.
10. Am I too late for the midday viewing? No, seven minutes, I can do this.
11. Oh crap, since when did you need to select a seat?!
12. Where am I going to sit?!
13. I need to sit in the middle otherwise I'm blind and won't see the film. To get to the middle I need to pass other groups of people. Where is the least populated area in the cinema?
14. Why are there so many small children?
15. I'll just pick this seat here, there's no-one either side, maybe I won't be in the way if I sit there.
16. This machine is stupid, why does it ask so many questions? And why did it just spit my ticket out on the floor? That's unhelpful.
17. Right, seat H15. H15. Screen 3, H15. Show the man the ticket. No, idiot, that's your receipt. Why is there so much paper?
18. Do I have time to pee? What if I need to pee halfway through the film? I can't just get up and pee. I'll just go pee now, just incase. But what if I need to pee again? I always need to pee.
19. How do I turn the stupid tap on? Why am I so stupid, maybe I should just go home. But I spent lots of money on this ticket, I just need to get on with it. But there are lots of children everywhere, what if their parents realise I'm an adult, on my own, watching a kids film. Oh, it's a motion-sensored tap. Well that old lady clearly thinks I'm an idiot as well. Good job Rosy. Good job.
20. Right, it's now or never. I really want to see this film. Just walk into screen 3. H15. If I look like I know what I'm doing, no-one is going to stop and ask what I'm doing here. I belong here, I bought a ticket and everything. I'll just wait for that family to go in. And that one. Just go in. God Rosy, stop being a complete wuss, just go and sit in the bloody cinema.
21. Oh look, a map, that'll show me where I'm sitting, that's useful.
22. Oh crap, there are loads of people here, and my seat's on the other side of the screen - I have to walk infront of everyone to get to my seat.
23. Rosy, don't fall over the man in the wheelchair. Don't look up, just keep walking.
24. Where the hell are the letters?! Why can't I see row H? If I crouch down, I'm going to look stupid and people are going to notice me. Oh, here's row H.
25. H15. Sit down. Get juice and half eaten chocolate bar out of your bag. Good. Now, enjoy the film.
26. Why hasn't it started yet? Maybe I'm in the wrong screen.
27. I'm the only person here on my own. All of the other grown up people are here with small children. What if they notice I'm here on my own and say something?
28. I just want to watch the film. What if they ask me to leave? I'm not doing anything, but what if they think I'm weird and want me to leave.
29. That child just asked why it is dark. It is really dark. Is it normally this dark? Am I in the right screen? Maybe they changed the screen and I missed the announcement.
30. Oh thank god, the adverts are starting. Just focus on the adverts. It'll be ok.
No wonder I've not been to the cinema in a while. I'm exhausted and the film hasn't even started.
I'll update you on the rest of the trip once I've recovered...
Saturday, 6 June 2015
Every Path has its Puddle
Saturday, 30 May 2015
Don't be nice...
I have a friend. Well, I have lots of friends. But I have one friend in particular. This post is for her.
We met about three years ago, just before I realised I have depression. We got on OK, went for coffee a few times and hit it off. And then I realised I had depression and started seeing a counsellor. Shortly after, she realised she was also not OK. Since that moment, we have become so inseparable that everyone thinks we are sisters. We've stopped correcting them.
Fast forward a couple of years, and we're there again. I'm dealing with my issues through counselling, but she has gone one step further and had joined a group therapy class. I am so in awe - I have enough trouble opening up to one complete stranger every week, yet she manages to tell lots of people all in one go what's happening in her head. I don't know how she does it.
Every week, as part of her class, she has homework. Of course, she is super diligent and does it without fail, and we analyse it together before each class, because that's what friends are for, right?
This week, the homework was to ask close friends some questions - questions like 'how would you describe me?' and 'what positive characteristics do you think I have?' So, of course, she asked me.
We are so close it should have been easy to answer these questions. But it wasn't easy at all. It was really really hard.
We are so similar it felt like the questions were about me. Not in a narcissistic way, just that I find it so hard to say nice things about myself that I put myself in her shoes, and I know how hard it is to hear other people say nice things about you when you don't believe them yourself. And I know that, in saying nice things, as much as the professionals say it will help, I will make her cry. That doesn't feel very nice to me.
I don't know if I can handle the guilt of making her cry, knowing that it is because of something I have said, nice or not. I don't want to be the one to tip her over the edge and make her feel worse, knowing that she struggles so hard to believe all of the nice things people say about her. I know she feels that way because I feel it too, and it is so hard to separate that from the knowledge that, maybe in the long run, it will help.
I am so proud of my friend. I love her to pieces, and I would do anything to make her happy and to feel better. I love being her friend because, in our own slightly confused and messed up way, when I am with her I feel some semblance of normality - I know that I am not the only person with problems and seemingly irrational issues, and that makes everything just a little bit easier to deal with.
So I am also completely, overwhelmingly, confused right now. Do I say nice things and feel guilty that I made her cry, knowing how hard it is for her to process nice things; or do I just keep doing what I'm doing and stand by her side and hold her hand on every step of this ridiculous journey?
Whatever happens, I guess I have to do something. And since she's probably reading this through floods of tears, it's probably too late for me to do nothing. I guess I can live with the guilt, as long as it helps...
Keep smiling.
Saturday, 25 April 2015
#Positivity
So here we are, rapidly approaching the end of April. I said at the end of my last post that l was going to try and be more positive this month, so I owe you an update.
At the start of the month, I decided to tweet a positive quote every day, to start the day by thinking about happy things and to give myself a little kick of inspiration to get through the day. By and large, I succeeded. I only missed two days, but they were days when I was at a Girlguiding conference and was tweeting so much I completely forgot. Those days were so positive and inspiring that I've forgiven myself for not thinking about being positive and inspired by the second-hand words of someone else.
So do I feel more positive?
I'm not going to lie and tell you that everything is hunky dory, because it's not. April has been hard. I struggled at the start of the month to accept that my own insecurities, lack of self-belief and inability to let go have been and will be the things that stop me from moving forward and achieving the things I know I want. After a week of annual leave, when I stayed in bed for most of my time off because it was easier than trying to work out where to start, I felt guilty and embarrassed that I had wasted a precious week of time I wouldn't get back.
Life has thrown a mountain of shit in my path this month - wonderful friends have lost much-wanted pregnancies, have been diagnosed with eating disorders, or have struggled with life-changing decisions, forced by crippling anxiety or depression; hundreds of people lost their lives trying to escape from their homes, travelling across the sea searching for a better life; and this week thousands further have died in a natural disaster that couldn't have been predicted.
I have been told multiple times recently that I care too much, that I worry too much about other people. And for a long time, I have been led to believe that this is a bad thing. But I can't stop caring - I know now that it is a fundamental part of what makes me me. I know that I will never forget a friend in need, regardless of where they are in the world or what burden they are carrying. Because I know that when I am struggling and lost, they will be there to hold my hands and walk by my side until we stumble upon a way out.
There are some people in all of our lives who, seemingly effortlessly, are able to function as responsible grown up people, going through their days without making a complete fool of themselves, multitasking without dropping balls left right and centre, and making the rest of us feel completely inadequate as human beings. I know it is not intentional, yet I have spent much of my adult life being intimidated and overwhelmed by these people. But I realised this month that it is not intended to make me feel that way. These people carry their own burdens. They are just them and I am just me.
There are just a few minutes of April left, and I don't want to leave this post on a negative note, because in spite of everything I just told you, I do feel better. I have really enjoyed the process of finding a positive quote each morning which reflects my feelings on that day, and sharing it with the world. I've found a lot of comfort in looking back over quotes from previous days, and remembering how I felt and why I chose that particular quote. I don't know if it just the quotes, or the fact that the sun has been shining (for the most part - it was both warm and dry AND cold and snowing on Monday), but I do feel better. Right now, I don't feel so completely bogged down with life that I can't focus on getting through each day. I genuinely do feel like I can deal with the mountains, although I know I can't do it alone.
Tomorrow is the start of a new month, and I am going to continue with the tweeting of positive quotes. And tomorrow evening, I have my first real appointment with a new counsellor. Like I say, I can't do this alone, and the thing I miss most about therapy is the space to talk solely about me without feeling the need to relieve someone else of their burdens in return. I never thought I'd say that.
If you'd like to read some of my favourite #Positivity quotes you can find me on Twitter at @rosybee1, though I'm sure I'll share them with you over time.
Keep smiling you wonderful people.
Saturday, 28 March 2015
Positive Thinking and Emotional Rollercoasters
Thank you everyone for all your lovely words of support over the last few days. I am exhausted, physically and mentally, but the fact that I am recognising emotions (currently anger, frustration, relief and a new one - humiliation) is a really positive sign.
Last night, I got so caught up in all those emotions that I found myself picking up the phone to the Samaritans. This is something I have never done before, and it terrified me. I just wanted to rant at someone neutral, to not have to phone a friend at midnight and feel like a failure or have to pretend that sympathy was helping (as a side note, sympathy doesn't help, it just make me feel like I'm letting you down. If you want to help, let me rant, and just listen to me. And I promise not to call you in the middle of the night!)
In the end, I didn't go through with it. I had read every single page on the Samaritans website, and knew I didn't have to feel suicidal to call for help. (Another side note - I do not currently, and have not for a number of years, think about killing myself. I am not suicidal. And if that changes, I have a plan that will kick in waaaaaaay before anything happens. Please stop worrying now. I won't do it.)
The thing that stopped me wasn't the stigma of calling them, it was the not knowing where to start. There were too many new and unexplored thoughts and feelings buzzing around (think herds of bees) in my head, and I didn't know how to get it all out to a stranger over the phone without having to go over years of background and rambling.
So I started to write notes, events and things people had said that had upset me or triggered certain emotions, and tried to find arguments and counter arguments for each point. After not very long, I was tired and just went to bed. It was pretty anticlimactic really, given that not long before I had sat crying on the kitchen floor in the dark.
Today has been a lovely day - I met a friend for a long lunch then spent the afternoon reading and colouring in. This evening I felt more relaxed than I have for ages, so I decided to write down some of the events of the past few months that I think have triggered this round of depression. Whilst I now feel completely drained (and my hand feels like it might fall off), my head feels so much clearer and I have rediscovered the stubborn side of me. I'm going to draw a line, and April is going to be a good month. I'm not going to be 100% better (it's not that easy) but I'm going to try reeeeeeeeeeally hard to focus and find the positives.
Wish me luck...!
(And does anyone have any suggestions of ways to stop my hand hurting so much? Writing is painful!)